Boobs and Ovaries

82. Unveil the revisions nurse!

2011-05-05T18:53:00.000+01:00

A lot has happened since post 81. Bouncy Ball Therapy so I will try not to waffle on.

The update for today is really that I am fresh from a visit to see my GP nurse, after having my revision surgery unveiled for the first time. I can tell you, I am elated. I have suffered this last 18 months with my neck, back and muscle cramping spasms in my chest. I feel so much more comfortable today, despite the soreness and stickiness of my skin from removing dressings and sutures. The band of tightness has reduced and although it is still there all the time under my arms, my reconstruction breast muscle has been released from that spasm. I am relieved. I risked losing my flaps if the blood supply was cut by mistake but my surgeon did good.

Background story
SKIP if you know my story of reconstructed boob spasms and whining about neck pain. FIRST TIME readers - heres a brief low down...

It has been 18 months since I really re-entered life again after my LD Flap breast reconstruction some 9 months prior. I started Uni so I could retrain after being made redundant from my job. That was September 2009, and after only a couple of months back to a basic but normal life, I started to go downhill physically with weak back, neck and shoulder strength. I wasted a year of Uni because my neck was getting worse, not better and lots of typing and sitting down doing my computing course were not helping. I even had to rethink my career path because of my neck and spasm issues. I felt better being more active but without lifting weight or typing lots. I decided on an Extended Science BSc course and it has been challenging with all my appointments this year; with physiotherapists, doctors, surgeons, hospital, all on top of my studies but I made it through and did pretty well this year. Very pleased indeed!

To summarise, it has been a tough 18 months (with added complications which I don't need to bleat on about right now) but 7 days ago I had my 4 hour revision surgery with the lovely Mr Camp, my seriously wonderful surgeon. My overlapped nipple patch sections have gone - now smooth, my dog ears have gone - now smooth, lengthening my scars to about 8 inches each on my back and I have two new scars, one inch each, vertically, under each armpit through which the spasm causing nerves for the LD muscles were hunted down and snipped. I have decided to get some will be getting some photos posted soon of my whole process but was feeling a little shy before but I feel it is time to share it as I am quite proud of what surgeons can do for women in the predicament I find myself in by being BRCA1 positive.

I had my surgery at Derriford Hospital under the superb care, level headed and joking manner of Mr Camp, a plastic surgeon and the staff of Freedom Ward and Lynham Ward were brilliant. Short staffed but calm, friendly, helpful and kind. I stayed overnight with some great people under the weather with an interesting selection of different physical issues. An unstoppable nosebleed, implants balancing odd breasts, an ulcerated throat, a thyroid gland removal and a leg injury..oh and me with my breast reconstruction revisions and denervination of muscles.

Clean, infection free, comfortable overnight stay with extra helpings of toast and jam for breakfast please. You were all brilliant!

I, on the other hand, am healing very well and looking forward to going shopping for summer vests that I now feel I can wear without conscience of onlookers staring at my indented nipples patches (paddles) through my tops. I am still not sure if I will wear a bra again. So many friends have commented about how nice it would be not to wear one ever again and I am so used to it. I might just get some nude coloured covers like these after I get some little nipple bumps done - not sure I want anything too much of a nipple really - and these would help cover them up in sheerer clothing. Nipple Patch - Silicone Petals

81. Bouncy Ball Therapy

2010-09-07T12:08:00.005+01:00

Unfortunately not a space hopper, just a regular gym ball :(

Finally I have a physio who really knows what is going on inside my body and has identified and recreated that tingling, numbing and insane stabbing pain I get in my elbows these days. Although she doesn't want to say the words "yes, this is a complication from your surgery", it is. She says the neck and back problems are from carrying my injury too long and sitting still too long. Obviously, the only reason I have been careful and taking it easy like everyone keeps drumming into me these past 18 months has been detrimental to my physical condition. I have been active, more active than most would like but have also had injuries from just doing things or overdoing things. Like carrying my laptop in my rucksack for 2 months, it screwed my neck. Moving a too-heavy-for-me bag of plaster finally tweaked it into lock up mode back in November 2009 but I think it was culmination of things and not just one injury, which is also the opinion of my physio.

Positive Recovery

So, this is a positive step, one towards a pain free world? Having a constant niggle in my neck is driving me nuts. It prevents me from doing so much stuff I could sit down and cry about it all but I can't, I just pop some painkillers and try and do my stretches and hope that it will fade over time.

Coping mechanism

I have a red bouncy gym ball that I use stretch out deep in my back. I have to stand in front of it with my wrists sideways on the ball and roll the ball up the wall, lifting my chest as I go. It may sound like bliss, and it is, for the relief that it gives me, but I now have to hassle my poor husband to massage my neck everyday. Over the day my neck muscles tense, more so because of the pain and so, if I don't manage it, I get sickening headaches and ludicrous tiredness. So boring.

Why do I hurt?

My physio says it is neurophysiological complication, trapped or restricted nerve movement through my neck and effecting my shoulders, elbows and hands. Problems with C1-C7 on the chart below, T1 and T2 problems seem to have relaxed now (middle back pain). She thinks the lack of movement has caused over-stiffness and naturally we will carry an injury but the last physio thought I might have a slipped disc so for the last 10 months I have been extra careful and made my situation worse. An MRI showed normal nerves thankfully but I still suffer and although my movement is better than back in November/December last year, I feels like it has just stalled now. I have good an bad days. Typing doesn't do me any favours at all and I suffer a lot after any reasonable typing session (like a blog post) and have to stretch out.

Neurophysiology: Hand and Elbow - Nerve Entrapment info

I hope this will finally sort things out, hydrotherapy in the pool with the hospital next week for a 6 week period of twice a week. Quite looking forward to it. I should stop there, my body is telling me to stop before I get all hunched up like Quasimodo on drugs again ;)

80. Its been 16 months

2010-07-15T14:27:00.006+01:00

Well where has the time gone? Its been hard work. I have been dreading writing this blog entry, I never wanted to be an anti-reconstruction surgery patient but the last 16 months have been harder than I was really warned they would be.

I guess I am one of the few who experience problems after my type of surgery. My surgeon assured me that I would be able to paddle a kayak again, fly a big kite, return to normal but that it would take 18 months to be fully fit again. Here I nearly am, 16 months and I ache every day of my life and need regular massage just to relief the tense locked up muscles in my neck, back and shoulders. I take painkillers everyday just to get through my day because trying to absorb the pain just tires me out. Today I had those old deep crippling spasms in my back and chest, like a crushing band, contracting and taking my breath away. Why? I have no idea, just out of the blue.

In the last 8 months since my suspected neck injury, I am still suffering. I've had MRIs and nerve testing, blood tests and the results are good, there is nothing wrong with my spine or my nerves, its all muscle. My body is still trying to compensate for the lack of Latissimus Dorsi muscles and my doctor thinks other muscles have built up more than they would have been and I have inflammation and spasms, tendon soreness. He's referred me back to the physio for treatment. It irks me that I asked about specialist physio right after my surgery but was told that I just had to do the exercises on the leaflet they give all breast surgery patients. The physio (that I had to request to see during my recovery) told me I had 90-95% movement again but could not help me further to strengthen my body. Back then my back was fresh without lats and not in daily use like now. Over time my back, neck and shoulders have been under extra pressure to perform differently. My shoulders crunch and click and ache, I get excruciating pain shooting down my arms through my elbow joints and cramping in my wrists. My neck muscles knot up and ache, giving me headaches. My body has adapted but its not comfortable at all. I just want to cry.

I always dreamed of writing here to tell my success story of reconstruction surgery but this is not the reality. My reality is that I a paid a price for reducing my breast cancer risk, not only did I give up my beautiful breasts but I have been advised by my doctor not to paddle or fly kites, which contradicts what my surgeon told me. I am trying not to feel bitter or go on an anti-LD Flap surgery rampage but I feel bloody close to it. I am angry right now. I am limited in the work I can do. Even typing gives me neck and shoulder ache. I am currently living on Employment Support Allowance and after being assessed by some doctor contracted by the government to work alongside the Department of Work and Pensions, assessed me as ZERO, in perfect working order. Her rubbish and inaccurate report of my physical condition has meant I am undergoing an Appeal, having to prove my limitations physically and if they don't support me, I have to pay back all the money they have been paying me since February, yet I am a student and I have no money or income, even my husband works prat-time because of medical conditions.

I feel so let down. Not sure what to do with my feelings right now and just don't want to talk to anyone, feeling very insular. I just feel frustrated and trapped by the damned system. If I was 100% fit I would be out there doing shelf stacking during my summer or working in a bar but seriously, those jobs are just not gonna work - bending, lifting, pulling, pushing. I am so frustrated by my body, which was fit and robust and beautiful and now it just isn't. I just need some time to sort myself out and I guess, see how physio goes. *sigh*

79. Save our BRCA Support Group - BRCA Umbrella

2010-06-19T17:14:00.008+01:00

I have a numb bottom and back ache. Been sat here all day long putting some serious legwork (more like brain and finger work) into raising funds to help save our precious online BRCA Support Group, BRCA Umbrella. Ning are closing the free 5000 member option with their social network and forcing a monthly fee on us. We can reduce to 150 members and far less function for the network for free but this is not an option. There are over 650 Members.

What is BRCA Umbrella? An online support group and community for those discovering and dealing with their hereditary cancer risk. I posted this to our BRCA Umbrella Facebook Page and Group:

"Save BRCA Umbrella now. Donate less than a cup of coffee or bar of chocolate. Its safe, secure, its via PayPal. Go without one treat to help our members who face their genetic lifetime risk of cancer (upto 85% risk). We are 1 in 1000 and we need each other. Few and far between but forced to seek sanctity in a place where others know just what its like to face difficult life choices about coping, having a family, breast and ovary removal, screening etc. Our future is in your hands. Donate now. Want to sponsor us? Contact us for more details."

I have been contacting potential clients to advertise with us to help generate revenue whilst offering our Members relevant ad links to companies offering services or products they need, such as Mastectomy Bra or Lingerie Companies in the first email wave.

Help promote my fundraising cause by copying the widget pasting this widget into your own blog or website.

Sponsor us through advertising. If you have Cancer related services, products etc, you can advertise here or through BRCA Umbrella.

OUR STATS:

This blog site has had over 6,500 hits in 15 months. That's over 440 hits a day.

BRCA Umbrella has had almost 30,000 visits, 186,910 Page Views and an average of 6.5 Page Views per visit. BRCA Umbrella visitor stats average at 1,875 visits per month, 61 visits per day.

So, a lot of activity and therefore a thriving network, an alive network of people needing each other and so, in order to keep that place safe, I ask for donations from you. Just give up one small treat, a bar of chocolate or cup of coffee and donate now.

DONATE NOW! Visit the Chip In page to find our more and DONATE NOW!! Visit BRCA Umbrella Donation Page

78. Breast Cancer Care Family History Forum UK

2010-04-29T17:24:00.005+01:00

It was a bit lastminute.com but I made it to London (UK) to the first Breast Cancer Care Family History Forum. It was so good to finally meet two of BRCA Umbrella's Administrators, Jennifer and Caroline (who escaped this photo unfortunately), and to catch up with Lisa, Elaine and Rian from last years Race for Life weekender. It was good to meet some new faces and sad to see so many women with this damned gene mutation.

It was was a very well structured day that started with human bingo as the icebreaker, an intro from the Breast Cancer Care team and then a much needed tea, coffee and biscuit break. The day's highlights for me were the break out groups, with me in the preventative surgery and gene mutation identified group. The first session was an hour of just general chat amongst ourselves, sharing experience and questioning each other about things. The second session was recorded and guided by a facilitator so we didn't veer horribly off track. She asked key questions:

What support needs do you feel are missing from the NHS?
What do you feel was missing from your surgery care by the NHS?
What would you like to see developed as a support system for BRCA community?

We talked of many things, like;

- being asked for moulds of our nipples for prosthetics before they get incinerated forever.
- being put in touch with some form of support group long before surgery is decided.
- having an MRI following a positive diagnosis for BRCA1 or BRCA2 or identified as High Risk.
- having the right to see any breast reconstruction surgeon anywhere in the country instead of being channelled into just what procedure your local surgeon does
- having regular face to face BRCA support groups to meet and discuss all these things and more with real, live people.

There was a great talk about Genetics by a specialist and she answered as many questions as we could fire at her. I think this highlighted the need for a proper forum to discuss these things with professionals rather than scaring ourselves witless with things from the internet!

All in all..it was brilliant. 50% of the attendance were BRCA Umbrella members and we wore our badges with pride, we found a way of supporting each other in the absence of such support, we made BRCA Umbrella the support community it is and it is time to step it up a gear! Watch this space!

77. Out of touch

2010-04-22T09:58:00.002+01:00

I went awol for a bit there. Sorry folks. Nothing BRCA related, well, not really apart from the abnormal CA125 (ovary screening blood test)that came back and I had to retest. It is the first time I have really worried about my ovaries. With no evidence of ovarian cancer in my family history (even with the BRCA1 gene risk factor of 40-60% lifetime risk) I sit on my laurels about Ovarian Cancer and maybe I shouldn't. My doctor told me only 2 days ago that I just can't be thinking about ovaries just yet, or revision of my reconstruction scars, or nipples, I have to concentrate on my current health issues: neck and lumbar spine.

Yes, the saga continues. I have an MRI scan for both next Tuesday which I am actually looking forward to. My hip pain has worsened in the last year and my lower back pain that I used to ignore has now become a daily chore since my surgery. I think the lack of Lat Dorsi muscles have exposed an existing problem and it is time to sort it out. My neck is still troubling me everyday and even light exercise on the Wii saw me in agony for a week with daily massage and disturbed sleep. I am signed off at the moment and damned glad. Both problems make daily life painful and tiring...it is so boring.

Good news! My sinus infection cold appears to have passed (6 week companion) and my bronchial infection is mostly gone but is still lingering but I am using an inhaler for the first time in my life to see if this helps...or else it is off for a chest x-ray.

So, you see..i have more than enough on my plate at the moment, BRCA stuff will have to wait, which bothers me because it bothers me and I want to be on the complete list. I am more than frustrated with my lot right now. Well, them be the cards dealt, gotta live it out and all will resolve.

I would like to book a calm period in life please, a bit like a holiday where there are no worries.

I am frustrated to not be able to log my breast reconstruction progress in an ordered manner but that is just the way the cookie crumbles.

76. Nip n Tuck Cancelled

2010-03-10T11:22:00.006Z

Has it really been 4 months since I last posted? Shocking!! It is because nothing at all has moved forward since my last post, in fact it has all gone backwards. They cancelled my surgery the night before I was due in. I was ready, after months of pondering, preparing for its coming, I was ready and again the rug was pulled from under me. Great!

I was so annoyed that I told them I couldn't go through that again in a hurry so not to rebook it within the next 2 weeks, my studies were getting busy and deadlines looming for assignments. A week later I got another surgery appointment - with a weeks notice. I sat on it for a while, waited for the confirmation message they always send to your home phone for you to accept or decline the appointment. At that moment I would decide how I as feeling and whether I could go through with it. I was so scared they would make things more uncomfortable or make my scars worse, infection etc. The day before the surgery I planned to call them and find out what was going on if I had heard nothing. I got a phone call at 11am from my PS surgeon's secretary and this is how it went;

Secretary: Hello. I am phoning to confirm your surgery is scheduled for tomorrow.

Me: Hello. Um, I haven't had the usual advance telephone message to accept or decline the appointment.

Secretary: Oh, I see..well are you coming in or not?

Me: I am not sure. I did ask for it not be scheduled so soon as my studies will seriously suffer. I can't keep messing about with my life.

Secretary: So are you coming in tomorrow or not?

Me: I would have to say no now, I am sorry.

Secretary: Oh great! You could have let us know sooner. Now we have a large gap in the surgery schedule!

Me: Excuse me? When I last saw my surgeon he told me not to worry about cancelling, he would read a book instead. He knew how unsure I was, how scared I am to come in again. He also said that they can take this reconstruction process at MY pace.

Secretary: Right. I shall take you off the waiting list then.

Me: Um, okay. I will go back through the system when I feel I can face it again. I am sorry but I just can't do it now, as I explained.

Secretary: (She hung up on me).

Me: How polite! I LOVE NHS secretaries, you are all SO people people!

I was livid! Livid! She was so rude. I don't think she gave a rats ass that I was seriously concerned.

No surgery for me for a while. I didn't have it done and I am still thinking about it. I think I will go back to the GP to restart the process in May so I can go in over the summer. I have a serious phobia about vomiting bugs and the outbreaks in the hospitals in winter just freak me out. Winter hospitalisation would be my idea of hell on Earth!

So I am still as I was. Well, actually that is not true. I am STILL suffering with my neck injury and 'YAY' I have to have an MRI scan. The physio signed me off back to the GP as she couldn't help me after 4 months. Recently I have had numbness, pain and tingling in my shoulders and hands - not good! I can't carry my laptop into uni anymore and driving is very uncomfortable. Bloody hell - give me a break someone??

AND on top of that I have the cough from hell. 5 weeks now. I lost my voice and then the cough started, antibiotics didn't touch it and I am not taking another round I was given by my GP, that would be 3 lots in less than 2 months! Nope. I have already picked up a snotty cold on top of the cough. My poor immune system is really suffering. Before September I hadn't had a cold for 6 years!!

What a whinge that was. Better out than in as they say! I hope to post some nicer news next time. Maybe Race for Life in Plymouth?

75. Physio, Tidy Up & Fix It Surgery

2010-01-04T10:11:00.010Z

Happy New Year All!

I am joining the January surgery mob (other BRCA Sisters out there are also on the list and we step forward together). On 16th December I had an appointment with two Plastic Surgeons and two other doctors. Five of us crammed in a small room and all intensely talking about my breast reconstruction, my boobs. It is a thing you get used to. I have lost any kind of shyness I may have had about getting them out with the amount of viewings they've had!

I told them about my problems with tightness, spasms and pain and they asked me to do the side front, bend twirls.

My main Plastic Surgeon is not the guy who did my Breast Reconstruction and he said he needs to discuss the surgery and how it was done with the original surgeon. They are planning to de-nervinate my Latisimus Dorsi muscles which now form the volume of my breasts. They are both still reacting to movement and tensing. Sometimes I get twitching so strong I can feel it for ages after the initial spasm, like they lock up and stay hard. Today I am going to record a video of their magical moving properties so I can look back on the changes. I will post this in BRCA Umbrella for everyone's amusement! Remember the pec dance clips of the past? Maybe I can do a version of my own. I found one!! Check out this video ->

http://www.youtube.com/watch?v=8utKIVvxaPE

Risks: as the surgery to cut the nerves from my Lat Dorsi muslces that now reside happily and unhappily in my boob skin is detailed, they could potentially cut the blood supply to the muscles themselves instead of just the nerves. Not good but I have to take the chance.

Physio says: My pectoral muscles are too strong. This is pulling my shoulders forward and I seem to be getting more and more tingling in my hands and elbows like nerves are trapped. She made me do some moves that sent a stinging and intense pain down each arm right through my elbow to my wrist. Ouch! I have some moves to do to help stretch them out but the Lats help keep your shoulders back and without them I am compensating lifting with my pecs instead and seem to have overbuilt them. This explains some of my problems. I shall speak to the surgeons about her comments too. Something is restricting my nerves in my arms and causing the pain.

Will it ever end? Yes, at some point I will just say ENOUGH but for now I have to go forward. BRCA1 gene - You shit!

3 weeks now. I am looking forward to it and dreading it too.

74. Strong, Weak. Weaker.

2009-12-08T10:30:00.002Z

I have reached the point of no return, I cannot continue with the pain and problems I am having without expert opinion. I am a head down, get on with it person and I was repeatedly told after my reconstruction surgery to 'give it some time'. Okay then, here we are. It has been almost 9 months since my surgery, more than enough time for things to 'settle down' as I was told. I appreciate that everyone is different and all surgery has it's risks. But, here I am, in pain and suffering with a weak back.

I am an optimist, I see the good in people, I hope for the best, prepare for the worst and expect high standards. I didn't think that I would face any problems after, I expected not to, enough nervous energy was spent worrying about what was definitely going to happen to me immediately after surgery.

So what's my beef? Can I describe it to you...?...um..yeah, okay, think of this:

Walk around all day with a rolled up sock under your armpit, your numb armpit I should say. Then when you pick things up your breast contracts every time, tightening right across towards and under the armpit trapping the rolled up sock in it.

Stuff on the floor? No problem, just crouch down with the knees crunching and cracking my clicky knees and painful ankles, repeat accordingly for everything. This is actually the way to lift sensibly but you don't realise how much you can just bend over without this method to just grab things. When I do this I find I stick my bum out loads (not a good look) and I get that trembling thing in my back muscles like when you lift things too heavy for you, that straining thing, just from bending over at the waist. I miss my Lats. I miss them. I hate to say I regret it but maybe I should have gone with the majority and had implants with less impact on my physical self. The thing is, my local surgeon didn't believe in that kind of surgery. I didn't feel I had much choice in the matter. This is what we do and this is what you get. That is not how it should be.

They did warn me I might have a weaker back but I didn't realise how much until I tried to get back to normal. At 9 months on I feel I should be able to get back into DIY and carry a rucksack into Uni without suffering for it too much. I'm all healed now.

The last 3 months since I have become more active and resumed life in the mainstream again I have noticed the pain, tightening, muscle spasms, back and neck ache and injuries I am now encountering more frequently. Right now I am waiting for the doctor to call me to see if I can get a relaxant prescription for my neck. 10 days I have been suffering, I can't hold my head up without a deep ache and twinge in the top of my spine. I think it's from stupidly lifting a bag of plaster at 12.5kg...dumb I know, but I did it. I used to be able to do these things, I was strong and I forget to adjust. I just think I can get on with stuff like I did before and recently have faced the truth, I am not and I have to change.

I need exercise and free parking when going into Uni so I park on the fringe of the residents parking zones and walk in with my rucksack. I chose a comfortable one but lugging it around all day takes it's toll. By the end of the week my back and neck is aching and seized up. This truly sucks. I can't afford to park closer and I need to walk as jumping around exercise is not on the list of comfortable sport activities for me. What do I do? I don't know, I am just fed up with it. If I do nothing my back gets weaker and if I do something my back gets injured.

So, 15th December for a review and plan for the next surgery, what my Plastic Surgeon can do to help (or not) and tidy up surgery.

Doctors appointment at 3.30 for a neck/back inspection and some relaxant drugs probably. Yay..not. Sick of pills..so sick of pills now.

73. I need your vote

2009-12-01T16:57:00.004Z

I'm glad I've got your attention and now that I have, can you help?

I have a one answer poll posted in my sidebar (see right) and would like your vote.

The more who vote the more accurate the results.

I am interested to know why you read health blogs. That's it. Just click the answer that best fits you and click the Vote button.

The reason? I am writing an essay paper at University about the Ethics and Moral Conduct of Health Blogs. Your input will give me a better opportunity to understand why people read blogs about health related subjects.

Your help is greatly appreciated.

72. Nip Nip? No way! and 3D Nipple Tattoos

2009-10-28T03:06:00.003Z

My nipple reconstruction has been a thorn in my side for a long time now. What am I doing, getting them or not?! I couldn't decide for a long time but actually, now, I have a possible solution.

I worked out that I miss the size of my old danger boobs but I didn't enjoy wearing bras, even when they were untouched by the surgical knife, and I also miss my nipples. So what am I to do about all that?

I have put on about 8lbs since my surgery and my right boob has gained a little weight (I think) but the left one has not and the size difference is more noticeable than ever. I feel out of proportion when I used to be perfectly balanced. That is hard to deal with for me. I want matching boobs again that balance out my figure, like before my surgery, but that means wearing a substantially padded bra.

Bras are seriously uncomfortable and do not fit me at the top of the cup anymore so bras don't actually help, they just add to the problems I have. I can achieve a bigger sized chest in clothing but am crippled by wearing a bra, making my scars sore and my dog ears stick out underneath, noticeable in tighter fitting tops. Not a great look really.

No bra, no matching boobs and no pain.

Bra, bigger boobs, matching boobs and pain/discomfort.

Now bring some nipples into the equation.

Nipples = sticking out bits
Sticking out bits = bra to cover up
Bras = uncomfortable and bad fitting

Solution

Uncomfortable = no bra
No bra = sticking out bits
Sticking out bits = nipples
Nipples = dilemma

Bugger..

So after seeing a BRCA+ friend's recent '3D look' nipples I thought that this might be an option for me. They look so realistic and without identifying her I thought I would post a pic (with her permission) of what they look like below:

I am so amazed at the result that I thought about not having nipples again as a real option. This could be an interim solution whilst I think about the real McCoy...maybe.

Then I found these stick on bras which may be an instant solution for me. NuBra info at www.breasttalk.co.uk

I think I will order one set just to try it out.

Will report my findings once tested!

Quite excited and fed up with being lobsided and dented :(

71. OkeyDokey Ovaries

2009-10-27T17:20:00.004Z

Just a quick report to say that I my ovary screening (by transvaginal ultrasound or TVU) from a few weeks ago was confirmed by letter today as 'NORMAL'.

Phew..

And then the blood test arrived so now I have to go get jabbed again and the cycle continues.

Damned BRCA gene!

70. Bra meltdown

2009-10-02T12:14:00.008+01:00

So I am now a full time student at University. It's taking some getting used to but I am loving it so far, not a lot of work started yet but it's still intro stage I guess. Starting Uni and venturing back out into the world again after my surgery has thrown up a few problems, those which I hadn't really considered before.

I get a lift to the city outskirts with my husband and have been walking nearly 3 miles into Uni. I made sure I bought a comfy, extra padded backpack to carry my stuff but I am feeling the effects of my efforts. There has been muscle tightening and pain in my left breast, like everything is still pulling internal stitches. If I try to do anything too heavy going I suffer for days afterwards. I am calling my BCN today to see if I can see my surgeon and discuss any remedy for what I am feeling. Previous posts have mentioned my issues with my left breast and I guess I gave it enough time to settle down, but it hasn't. Even as I am typing this blog post 'leftie' is twinging in protest that I am writing about it in a negative light. It knows it is smaller or more spread out than rightie and has an image crisis.

I thought all was going so well, I was getting stronger, less incapacitated but it turns out, no..actually. I stupidly tried to push and pull a few uni doors and have grimaced at the effort required to do so. I can't be wandering through uni for the next 3 years as the woman who gurns when she opens doors!! The disabled button is welcomed!! Automatic doors in most buildings which is SO helpful.

The saddest of all the problems is that I realised how conscious I am of my dented nipple patches. I know they are going to sort them out but it scares me, I don't want them to be worse than they are now. I have been through so much already and I am worried about more deformity (although my husband still tells me I am as sexy as ever).

As I walked into uni the other morning, it was windy. I have only found one bra so far that kind of fits me okay but it is tight around my back and sides and I feel like I'm in a vice. I don't wear a bra and I love not having to but I have recently found some lovely fitting long sleeved tops but they show my dents through. I had an open shirt on this particular day with a tight top underneath but all the way in I was pulling it over my boobs to hide my dents. I was sad. I realised how much that still bothers me and I don't want people to stare or wonder what the hell is going on under my clothes!

To remedy the situation I went to the shops during a lecture break and hunted for a comfy bra. Eventually I just cried. I stood in front of the mirror in the fitting room and cried. I used to be a 36B but according to the bra measuring guide I am a 36A but I'm not. Not at all! I gathered different makes of 36Bs, 34Bs and 36As but all didn't fit. My new breasts are soft and the right one goes into a bra cup great but the left one doesn't. The surgery took a lot of tissue out from further up my chest but this hasn't been filled in by much. This means I don't fill the cup at the top. If I go smaller in cup size to compensate, the cups are too close together.

A 36B is comfortable around my body but the cup is too big, the top is empty and gaping.

A 36A is comfortable around my body but the cups are too close together and my boobs don't fit in them because they are quite a lot more fixed in position than my original boobs.

A 34B is tight around my body but the cups are in a better position and fit better.

What I need is a 35B I think but it does not exist. I had this discussion with my surgeon repeatedly, I almost begged him not to make me smaller as I would have bra trouble..and here we are, smaller and bra trouble. I am frustrated. Although I agreed I would rather not have implants I would like them if he couldn't make me the same size as before. He didn't use them even though they were on standby in the operating theatre.

Why does this matter to me? I will only get nipple reconstruction if I can wear a bra comfortably. If I can't wear a bra I will always have to dress in layers or thick clothing or wear stick on nipple pads to hide my permanently erect fake nipples! This whole dilemma frustrates me immensely and sometimes I get down with the amount of thought I give to this small problem, because in the grand scheme of things, it is a small problem. I need my nipple patches sorting out first and foremost, the dog ears make bra wearing uncomfortable too and they are going with the first tweak surgery. I won't go ahead with that until I have made up my mind about nipples because I want as little surgery done as possible and the tweaks can be done the same time as the surgery. I can't decide on nipples unless they can fix the pain and muscle spasm in my left boob. I can't wear a bra until the nipple patches are sorted and so I try and deal with my feelings, my self consciousness, my daily dressing dilemma.

It's getting colder so maybe I should just invest in some winter warming devices like these to cover up with?

69. Body changes, stitches, spots and looking back

2009-09-02T09:25:00.005+01:00

It's been a whole month since I last posted, proof that life moves on. I've helped paint the house (in short bursts and a long overdue job!) and been on holiday in the meantime.. and in 3 weeks I will be starting Uni. Very excited!

Although my body has adapted and improved immensely, there are still a few minor problems I deal with but in the grand scheme of things, they are minor.

My internal stitches are not so internal anymore, they still appear to be making their way out of my body through painful and pus filled spots (sorry about that!) around my scar sites. The good news is that my scars are paling a lot now, but as the stitch spots appear they leave small fresh scar lumps on top of the original surgery scars. I am fed up with it, it's been 5 months now.

On my back where the lat muscles were taken under the skin, cavities were left (which is where fluid builds up initially) but now, after time, the skin has stuck down onto whatever is left underneath (other back muscles) and new scar tissue has formed. When I bend over they show as low humps on my back (stop laughing now people!) where the areas have thickened. It's hard to keep massaging the back scars.

The other thing that still bothers me is the lump of muscle that sits to the left of my left breast and my armpit. It really shows when I raise my arm up high. Although I don't like it and it slightly spoils the shape of my left breast, it's okay. Underneath my left breast where the crease is there is a knot of stitching internally and muscle where it was stitched into place - this still gets bruised. If I do anything raising my arms or I sleep on my front with my arms up it aches for a couple of days. I think this can be sorted out because I don't think it will ever go away, it's pulling a fixed point everytime I do something and will end up scarring over and over. I must speak to my Breast Care Nurse about it.

I still hurt if I try and doe some things, I shook a blanket out in the garden that my cat had been sleeping on and the action caused me intense sharp cramping in both armpits and down my sides that lasted for about 10 minutes. I have to be careful with sudden movements. I had a thing about falling over for a while and the jolt of landing on my outstretched arms and the damage I would do inside, but I have survived this far so I'm feeling more robust.

I am still learning to be happy with what I now have, which has been hard. Most women don't really rate their boobs but mine were so pretty and pert. This is not something I talk about but I did consider them a real asset, that I was lucky to have a good figure, but I have now kind of chopped it up a bit. I know it will take a long time, years probably, for everything to properly settle down and fade away. It's been a struggle and there is still more to go but, but just to put it into perspective I searched for a graphic video of my type of surgery, and on reflection the results are amazing considering the extent my body was chopped about.

I found this rather graphic video of latissimus dorsi reconstruction skin sparing and through the nipple hole. I don't have the extra little cut this lady had next to the nipple hole.

WARNING!! PLEASE DO NOT WATCH IF YOU ARE SQUEAMISH! The end shows how it all just comes together..amazing..and makes me appreciate how well I have recovered and makes me wince a little too. The skill of my surgeon and the path I have travelled so far, immense and intense!

GRAPHIC LATISSIMUS DORSI RECONSTRUCTION SKIN SPARING REMOVING NIPPLES VIDEO

I am so grateful to everyone who has got me to through this. I couldn't have done it without you all! Thank you!

68. Pause on the ovary plucking?

2009-07-31T09:34:00.003+01:00

I got a letter the other day from my Genetics Counsellor and a further letter from my Consultant Clinical Geneticist, both stating that I was likely in no immediate risk from Ovarian Cancer in the years leading to my 40th birthday.

"I thought that I would just write to reiterate the information that the risk of ovarian cancer over the next few years is really quite small. One of the original studies of BRCA families found that less than 1 in 100 women developed ovarian cancer before the age of 40 and after this age the risk became much more significant."

I was invited to come back at any point if I was worried or changed my mind but that it would be advisable to chat again closer to the age of 40.

So, how do I feel? I've had a blood test returned from me CA125 test as within normal range. The range being between 0 and 35. My results were 32.4. Does this high end of normal result worry me? Strangely, not a lot. I feel strangely unpanicked about it, even though my lifetime risk is upto 60% because of my BRCA1 gene, no-one in my family history has developed Ovarian Cancer that we know of. This is obviously a contributing factor to my relaxed feeling about the disease and my high risk. Before, when I had my natural breasts, my danger boobs, I worried about ALL of it, all of my risks were heightened to me but now, now that I have had my breast reconstruction surgery, I feel calmer, relaxed. It is amazing. It was a sacrifice but a no brainer really. I am alive, well, strong again. I am a different me, stronger.

I found this interesting study about women who developed cancer with BRCA mutations, the results are pretty scary averaging about 70% of those in the study developed cancer by the age of 50. risk for hereditary cancer

So I rest lightly on my laurels for a while. I cannot even contemplate getting my ovaries out right now or in the next couple of years, there is much to do and without any medical benefits of doing it now, just a prolonged risk of osteoporosis for being without the hormones and a few less periods to endure, I will wait for a couple of years before I delve into this again.

I will stay vigilant though. Ovarian Cancer is not silent as most thin, there are signs but subtle ones. Here is a webpage about symptoms if you are worried or interested. Ovarian Cancer Symptoms.

67. Light at the end of the boob tunnel

2009-07-14T21:09:00.005+01:00

The boob tunnel? Light? Yes..yeah. Today I saw the end. I don't want any complications thank you, just straight forward tidying up surgery, just like I've ordered. I am stoked as surfers would say, stoked. It's been almost 4 months since my breast reconstruction surgery and things have settled down really well, fantastic actually. I made a decision to just take things a little slower and not to rush the nipple building quest.

So I battled the hoards of visitors for a parking space at the hospital today. The outpatient department was heaving..not like the Primrose Breast Clinic I usually attend. I suddenly felt like one of the many. It was odd. Every time I went to Primrose I felt my situation was more serious but now, sat with all these people with a variety of health or physical problems, I felt quite normal. How refreshing!

I wondered what they were all here for. The lady sat in front of me was elderly and frail, the lady next to me had a boisterous baby and the couple next to me were concerned about running late. I waited only 5 minutes before being called by Sister. She was quite a cold woman, no eye contact and left me with a gown in a room and I felt my heart sink a little. Had I made a mistake being referred away from the Breast Care Clinic? I'd asked to be referred to Plastics team to look at the tidy up work, nipples, dog ears (the ends of my scars) etc. My Breast Surgeon is a very busy man, he has reconstruction and cancer patients to deal with. I'd had my appointments with him shifted around so many times and waited hours to see him only to have only minutes of his time, I felt like he wasn't listening to what I wanted, my concerns, my views on how my body was behaving, changing, how I felt. I felt like I was being railroaded into having the nipples that my Breast Surgeon does and that I didn't have much choice in what they would look like. That bothered me a lot. I spoke up and I waited for a referral. I feel quite guilty for taking away my Breast Surgeon unfinished work and taking it to someone else to complete. As a creative person, I would be bothered by that. It's like baking a cake and letting someone else put the icing and cherry on the top!

Minutes later I was in my gown, marvelling at it's pattern. Anyone noticed that the NHS gowns are covered in multicoloured words: 'Hospital Property'. What? What would possess anyone to steal one of those gaping at the back gowns? It made me laugh and I also had a quiet snigger to myself when the Sister explained that I must put it on with the split at the front because the surgeon would be inspecting my chest area. Really? Well I never! ?? Sister left and a cheerful nurse came in and was surprised to see me. She complained that Sister often interfered with her patient list and she should just keep busy elsewhere. We laughed. She explained that the Plastic Surgeon (PS) would be in shortly. And she was right. He was a relaxed, comfortable man and I immediately felt happy. He studied my notes, chit chatted with me, made some jokes and then we got down to the business of boob fixing discussion.

(Boob Flash count..3 more today. I must get a total together.)

We talked about nipples first, he talked about creating new ones with the existing skin, grafts or prosthetics. I questioned him about taking moulds of my nipples before my surgery so that a replica of my old faithful nipples would be made instead of creating something different. He was impressed at the idea and saddened that it had not been thought about. He would try and get that in place so that all patients who are seen for preventative mastectomies get the mould option. I told him I was happy with creating new nipples from my nipple patch and he proceeded to draw on me a bit like the image below but with less triangular ends.

Before, I had been offered a semicircular cut and a twist to create a button of a nipple. These go flat again quite quickly and I wasn't keen on this option at all. This option is longer lasting and more realistic. My nipple patch is about 5cm across which is bigger than the areola area of my old nipples. This makes my new boobs feel a lot smaller because of the large pink scar rings that are currently there. I asked if they could be made smaller and the PS agreed and said it could be done but they may end up being more oval. He can make a new circular cut and bring the outside edge in to meet it. I think I will see how things fade in the next 6 months to whether we try to make them smaller or not. I guess I was worried about having a big scar ring around the outside of my new nipples. Would they look like targets? Hmm..anyway..I have some deep indentations at the bottom of each nipple patch where one edge has healed inside the other creating a lip. These need sorting out and will be done at the same time as nipple creation and dog ear tidy up.

Levelling Left Boob. My left boob is not as defined as the right, there is more muscle and fat under my left arm and side than the right. They hoped it was just swelling but it's not. This means that the 'contents' of my new left boob were more spread out than my right. I guess I have a little less volume in that one and it doesn't hang the same as the right one. It has always seemed to me that the internal tissue was stitched too far down my body and stopped the hang crease appearing. PS is going to go in through the nipple patch and reposition some contents with some stitches at the bottom of the left boob at the front. This is good news as it means I might be able to wear a bra more comfortably.

Dog Ears? The ends of my back scars near my waist. On that subject he will cut an elongated oval to take out the extra tissue at the end of the scar and close it up again. This will make my scars longer but they will be fine and fade. I guess I will have two 10 inch scars on my back but hey, I have 2% risk of breast cancer and not 85% so who cares about my back scars?

So, there we go - all sorted. PS will speak to Breast Surgeon and discuss the way forward. He expressed that surgeons are used to completing their work but actually what is important is the patient and what they want, afterall it is their body and they have to live in it. He did say that Plastics were now working more closely with the Breast team to do the finishing work after the major stuff was done. This would give them more time to deal with the major stuff and Plastics could deal with the less time pressured stuff, the tidying up. I was happy to hear this and I am happy to have a talkative, considerate and funny PS to carry out the cherry topping surgery to my new boobs.

March 2010..yay! I feel like I can actually relax for the rest of the year now, get settled into uni and start moving forward with my life again. No more limbo. I am in control again, not my BRCA1 gene!

OVARY UPDATE! I had my UKFOCSS blood sample results CA125 test = normal range. I await my transvaginal ultrasound scan appointment of my ovaries. Phew!

66. Off to Plastics

2009-07-14T13:20:00.002+01:00

It's been a while since I last posted. Not a lot and a lot happening in life.

Today, in an hour, I have my first meeting with a Plastic Surgeon to review my current physical state after my initial surgery, talk about the way forward and nipples. I am apprehensive but excited too. There is little time to get surgery organised to fit around my first term of uni but I am sure that I can wait a good while now and not panic. I think I would really like to move things forward in March, that will be a year on and I will be on Easter holiday so can recover comfortably without worrying too much about settling into uni. I will almost be through my first year by then.

Well, not a lot has changed physically, I am active again, I still have tightness, some muscle spasms but very few now..still oversensitive in some areas, numb in the back of my left arm and both armpits (which makes shaving them an adrenalin sport these days..will I cut myself or not..so far the game is in my favour Me = 50 Armpits = 0!)

Better get sorted out, I have to fight for a parking space and get some wedge to pay for the trip!

Update later..

65. Can I still do that?

2009-06-16T12:00:00.002+01:00

Three months ago I thought there were things that I would never do again or do them weakly, yet here I sit and ponder the obstacles I have overcome, all the small ones and the bigger ones, and I marvel. The power of the human body to heal. It's survival instinct. And on the bare face of what I chose to do to my body was my instinct to live, to survive.

Daily life loads up some new physical and mental challenges as time goes by. So the repeated question is: "Can I still do that?"

Drive? Yes, fully functioning packed with pillow for added comfy.

Sleep? Yes, despite the initial challenges of front and back wounds, I now sleep normally and sleep is the best time for your body to sort itself out pretty pain free. Good physio, without the effort.

Dress? Yes, fully but struggle with tighter tops - getting out of them can be hard work but new techniques develop and you adapt.

Gardening? Yes, gently, then medium flow, then with gusto (involving lifting, wheelbarrowing and pruning shrubs and trees - which I am not at just yet). Medium flow involves cutting the lawn, digging in by spade and trowel small plants. Just one or two at a time, anything more is considered with gusto (see above).

Loving? Yes, hugging my amazing husband, family and my stepson (who has been amazing in understanding my pain and listening to me and for gently hugging my head for the first 6 weeks). Head Hug works a treat although can mess up your hair a lot but hey, a hug is a hug!

Sport? Yes, a few days ago I remembered my mountain bike has full suspension so should be comfy over bumps. A successful short but invigorating cycle with my stepson. Lovely! Other recent sport - moor walking (not a pavement in sight!) and a spot of light paddling in the double kayak.

Shopping? Yes, carrying bags is very much a NO NO NO in the beginning but light bags and great assistance is required once you get back into things. Lifting is the problem, carrying is less stressful and just use more bags than you normally would. The staff in Tesco were amazingly helpful at the til but it takes a little explaining what you need. I just said I'd had major surgery and was not to carry heavy objects yet. They understand completely.

All good - I sometimes think this is quite nice now, do I want more surgery yet? I think I might wait a while longer, maybe even next year for tweaks and nipples. Maybe I should give myself this timeout on surgery, just wait a while longer and let my body settle down even more. I am worn out so far, it's been tough.

Emotionally, I am feeling so much better - the ups and downs you see are real, this is my life living BRCA1 positive. The self-esteem has been boosted recently, learning to overcome some old feelings and adapting to my new body. It's nearly time to put it into a dress.

64. So how am I doing 3 months on?

2009-06-08T09:53:00.004+01:00

Great! Apart from some setbacks emotionally which I am sorting out now, great. Much greater than I imagined.

The warnings attached to having my kind of surgery are that back pain may be experienced initially and weakness in the shoulder. Now this worried me. I think anyone facing life altering surgery will be apprehensive about the future and their physical limitations, I guess I did think that I would be quite impaired for a long time. In reality, yes I am - I can't lift heavy things, hold anything weighty out in front of me for any length of time and it is only recently that I noticed holding up the phone to my ear for over 10 minutes doesn't make my shoulders ache.

The initial 3 months have seen me go from not being able to dress myself, wash my hair, sleep well, find 'comfortable', cook, drive or walk even to yesterday mowing the lawn, digging in some plants and pottering in the garden. I even attempted some Wii Fit boxing and aerobics the other day but the after effects left me feeling a little overworked and a bit pumped in the pectoral muscles. My Latissimus Dorsi muscles are stitched into place on top so they may have absorbed some of the workout and I felt very firm for a day or two - it was quite weird. Aside from that, life returns to normal pretty much. Pain is still a frequent visitor to my body but is nothing compared to Week 1 and 2!! I have odd twinges but actually, all in - things are pretty good. I have got used to the tightness in my back and my husband is helping me massage my back scars to loosen them up. I have can sleep on my front although if I was of any real size I am sure this would still not be possible comfortably. I can also sleep on my side but have recently been waking on my back with my arms up by my head on the pillow which is uncomfortable after some time. Waking up is still mildly painful but I am moving around like normal now in my sleep and I thought I would never find comfort again but I have.

I am still waiting for my tidy up surgery and nipple consultation but in the meantime, I face my emotions. Something has been haunting me lately and I cannot shake it. Self esteem is critical in recovering from such body changing surgery and nothing can prepare you for how body critical you can become in living through it. I have struggled with the loss of some breast size - it bothers me and I am bothered that it bothers me! I had a perfect hourglass shape and now I feel pear shaped, unbalanced and I cannot shake the sadness right now. I also don't feel sexy at all..where has it gone? I don't know but it will pass. I have expressed to my BCN how sad this has made me and to my doctor and I am embarking on some CBT Cognitive Behavioural Therapy to help keep things in perspective. Some people suffer depression after such surgery and it is important to keep a healthy mental state. I don't feel depressed, just a bit confused and lost with my feelings. I have spoken to many women who face the same risks as me with their genetic mutation and some have suffered depression. It's to be expected - its huge what we do, it's not just surgery - its the whole deal, the risk, family choices, telling everyone else, facing it, worrying about cancer. It's draining and on top of that you have to work, keep sane, run a house and family.. we are not superhuman..we are just human and we need everyone around us to get through.

So, in an hour I am off to my first CBT session and strangely I am looking forward to talking to someone completely unbiased to my situation about my life and my struggles with this whole malarky.

63. Did you want nipples today? Sorry..we cancelled

2009-06-01T09:49:00.004+01:00

I am thankful for my strength of composure and character in what has been the farce of organising my tidying up surgery after my breast reconstruction op. I could have lost the plot by now otherwise. If you remember, this was brought forward by two whole weeks which left me with just one week to get mentally prepared instead of three!!

A couple of weeks ago my nipple reconstruction and tidy up date was 8th June. I organised my pre-op appointment for 3rd June and then I go away for a weekend, come back and it's 1st June. So I cancelled my pre-op and tried to arrange another in time as I literally had days to get in and get swabbed for MRSA, blood test etc. I couldn't get hold of them all day one day and then when I got through the lady who organised the appointments was away from her desk. Then when I got through they told me I could arrange it anytime, even just turn up and wait. So I called my surgeon's secretary just to advise her that there may be a problem if I couldn't get seen in time.

Please note that it is Friday..

Me: "Hi there, I'm booked for surgery on Monday and I am concerned that the appointment was moved without pre-op being arranged in time. I think I am going to have to cancel."

Sec: "Let me just check the diary."

I can hear her flicking through pages.

Sec: "..erm..we haven't got you booked in for surgery on Monday. You wanted to speak to Eric about nipple reconstruction before you had the surgery done so the appointment was rescheduled."

Me: "Right. When was I going to be told that I wasn't having surgery on Monday? I was prepared to go in at 7am! And my husband has taken the afternoon off from teaching to pick me up. Eric was going to call me as time was short so we could discuss the surgery rather than coming into hospital. He hasn't."

Sec: "No, I am so sorry. I can only apologise that he hasn't done so. He has a note to call you. He is on annual leave for 7 days."

Me: "This is the second time he has rescheduled my surgery because he is going on holiday. I am not very happy really. He's enjoying himself and I am preparing to go under the knife. I don't enjoy being messed around, this is my life!"

She apologised some more and insisted that she would be on him first thing on Monday to explain what had happened.

Me: "Sorry Sandy, I'm annoyed as you can probably understand. You said the surgery has been rescheduled, when for?"

Sec: "22nd June."

Me: "Oh that's great. That's my birthday. Anyone check my file? After what I have been through in the last six months I would like to spend my birthday doing something nice, not getting chopped up again."

I didn't raise my voice, I was just blunt. I can't believe that they can be so insensitive. I guess it's just a task to be done but me, on the other end, I have feelings and life to deal with.

On further discussion Sandy explained that the surgery method was a semi-circular cut for the nipple which is then twisted. It creates a button-like nipple. I explained that that kind of method flattens and has to be redone. I was not in for multiple surgery. I also asked her a few questions:

Why, upon breast reconstruction contemplation, was I not asked about my nipples and what I would like to do about them.
Why was I not offered a mould of them so I could consider prosthetics as an alternative to surgery?
Why have I not be talked to about the various methods of nipple reconstruction?
Why was I not offered different kinds of surgery with different surgeons who specialise?

I expressed to her that I felt I had just been pushed through the NHS machine and I had been given few options, even though Latissimus Dorsi reconstruction was the best option for me and that I was happy with the outcome, even if we had talked about implants on threat of making me smaller - which happened, yet no implants were used. I am happy that Eric did a fantastic job. I said I wanted to see some alternatives to the 'button' nipple option. Sandy said she would speak to the BCNs (breast care nurse) and see what they recommended and that she would call me back. Which she duly did and told me that she would get me referred to the Plastics team for consultation.

Why didn't this happen initially? Why didn't I go to see a plastics team to discuss ALL the surgery options for everything and then decide? Why is everything so damned complicated and irregular? I have some issues to raise with my genetic counsellor about what a person with family history of cancer needs when considering surgery. I am annoyed!

So..I wait some more. Will it ever end?

62. My Race for Life

2009-05-23T06:53:00.005+01:00

It's here..tomorrow..Race for Life fundraising 5k for Cancer Research UK. I've raised over £600 so far. Tomorrow will be hard last time it reduced me to tears seeing all those women doing something in memory of people who have died horrible deaths from cancer. This time I am not alone - there will be 10 of us with a long list of In Memory Ofs pinned to our backs. As a group I hope we raise some awareness about hereditary cancer and about BRCA Umbrella the support and social network I set up back in February.

I am excited to finally meet with Lisa, Susanne, Flo, Rian, Michelle and Elaine. I am proud of what we are doing and that I am not alone. I feel better for knowing that I shared my journey through all these hard, life altering decisions about surgery, feelings and life with these women. (Karen, Rhonda, Karen and Amy - I wish you were joining us!! xx)

So, to double check my packing, get some fuel, start my journey to Birmingham.

It's going to be a long day. I have to drive 4 hours in total and tomorrow I have to do my Race for Life..9 weeks post surgery. Whew!

Thank you to everyone who has sponsored me, your messages, your kindness. Thank you for caring about me and about my cause.

Time to go..time to leave :D

61. Nip 'n' tuck 'n' physio

2009-05-20T09:08:00.006+01:00

10 days have passed since my last blog post. I haven't heard from anyone about the results of my blood test so I must ask my GP tomorrow. I am getting fed up with not having a purpose in life. I have some goals to aim for but I have no routine and feel like I am in limbo waiting for Uni to start in September. Getting made redundant, being skint, struggling to pay the mortgage, surgery, decisions and mental wellbeing have taken their toll. I feel fed up and frustrated. I was just getting used to my body, its pain, restrictions etc and then I get talked to about nipples and more surgery.

I've not seen any photos of just nipples, I don't even know what procedure my surgeon has planned for me and I feel, again, that I have no choice in what will be done to my body. Getting nipples is not important for me at the moment, what I want done is the dented nipple patches (skin from my back) cut around the perimeter and left to reheal - flat. Imagine a jelly with a circle of card on the top - press it down and the result will be a rounded edge on the outside with a flat circle in the middle. That is how some areas of the my new boobs look. One area in particular has an overlap and I have to clean this with a cotton bud. These need sorting out and my surgeon agrees. So..how do they make them? I can only find the procedure below on the net but then there are prosthetics too ..is this seriously an option? I would like to 'try' some first. I think I want my scars to settle before I get nipples. I am also thinking about my future paddling and rub syndrome. With no feeling could they rub to nothing and I bleed to death slowly without knowing?

There are also the 'dog ears' on my back which are the ends of my scars near my waist. Due to the eye shapes of skin being taken from my back, then pulled together and stitched, skin gathers at the ends and protrudes. Its a bit like wrapping a round gift at Christmas - my body is not flat either and straight lines and bodies don't work. So these will go too.

The last thing that can be done at this stage is nipples. I just don't know how I feel about them. I don't want repeated surgery and so feel a little pressured by time to get them done. I quite like not having to wear a bra - not that I could right now and I am wondering if I could just wait until much later to get them done. I'd like to get all the painful stuff out of the way.

On Monday I went to Derriford for my first physio appointment. Lisa (the physio) was impressed with my scars but said I am a little stuck down in the middle. She said it almost feels like the skin and scars have fused on my ribs and that they must be massaged daily to free them. This tightness will not help my movement. The good news is my mobility is between 80-90% which is excellent considering what I have had done. She compared me to a single mastectomy lady who had problems after 6 months and even radiotherapy was less restricting than my surgery. Effectively the latissimus dorsi muscles have been wrapped over things under my arms and some of my tendons have shortened. I have some exercises to do and some press ups at angles to increase my pressing/pushing strength which is weak without the key muscles to do that (being my lats).

All was well and I left after making an appointment to see her again on 3rd June before my booked nip and tuck surgery. I then went to another department to make the pre-op appointment for the same day. On returning to the car some very kind person had parked six inches from my car on an unnecessary angle facing me with the difficult task of trying to get in the bloody thing. A man offered to get in the passenger side and get the car out for me after I briefly explained my lack of twistiness. I declined his kind offer and squeezed painfully into my car and sat and wrote note to the badly parked car owner and stuck it on their screen before I drove away. "Next time try and park your car straight with maybe enough room for both you and I to get in and out of our cars sensibly. Those of us recovering from major surgery do not see squeezing down a 6 inch gap to get into their car as a pleasurable experience! Thanks"

Annoyed I drove home, feeling a sore and tired. Then I opened an NHS letter. They moved my surgery forward a week. Again? My husband has just got time out of work to pick me up and I just made those other appointments. I guess I have to undo them and I have even less time to think about nipples.

Just over 2 years from now it will ALL be over. After my 400 mile paddle I will have my ovaries out and be done with all this crap. I am sick of being in an out of hospital and being nudged about the appointment system. I want my life back.

60. Boob flash count today = 4! 2 expected, 1 unexpected and 1 surprise!

2009-05-08T15:02:00.005+01:00

As they happened, here are the memorable things that happened today surrounding my check up appointment:

1. I DROVE MY CAR! For the first time in 2 months, I drove my car to the hospital. Yay!! It was that or catch a couple of buses with my trusty stolen NHS pillow in tow or get a pricey taxi. So I thought it was about time I tried to drive again. My range of movement is sufficient to let me do it safely and the seatbelt doesn't hurt my chest now as t did as a passenger. It was fun at first, I was free from the house again, to travel about but then I had to park in a tight space and getting out was a bit tricky with my lack of body twistiness.

2. I met a man who had a boob reduction. Yep, whilst sat in the waiting room a man came in looking nervous, I smiled at him and he sat one chair away. It was busy in there and I could feel some eyes on me and almost their thoughts.."she's young".."I wonder what the problem is"..then the man arrived and I felt less like the odd one out. Most women were well over 50 years old and with their husbands. It was when the waiting room was quieter that I got up and grabbed a couple of magazines, giving one to the man, an ice breaker. I was interested to know if he was a male breast cancer statistic or not. We started talking after I asked him if he was one of the rare men who got breast cancer. He said that after he'd got leukaemia he had grown breasts from the drugs and hormone treatments. He'd got fed up with people staring at him and decided to get it sorted out but he'd been coming for fluid draining since his operation for 12 months. It wouldn't go away. I talked about my drains and the fluid I'd had on my back and he was amazed at my surgery description too. We shared the same surgeon. As I was called through (an hour late) I touched his arm and wished him the best, hoping he would heal this time.

In the treatment room I stripped to my waist as usual, donned the amazing little cape that makes me laugh everytime and scratches my neck with the crumpled velcro. Eric came through with a sidekick doctor (a trainee I think). He went to shake my hand and I told him I needed to hug him instead. He hugged me back, nicely, not awkwardly. It was a real bond thing. This man changed my life. I shook the ladies hand but for a moment I think she thought I would hug her too. She smiled at me. Eric asked to see how my boobs were doing so I performed flash no. 1 to two people. I was expecting a two person flash today so I was ready.

They were both impressed with how my new boobs looked. Eric explained that I was all natural, no implants used and reconstruction was made using the latissimus dorsi muscles in my back (cue model spin to demonstrate back scars). I thought her eyes might pop out of her head in amazement. Eric was glowing about the results. I felt so much better for seeing him again. I felt pleased too and realised how much I liked them, despite my anxieties about body image creeping in. I listed my issues:

Hairy Boob - skin/body shock, testosterone - blood test to check levels, should fade with time and go back to normal.

Dog Ears - they can be snipped off and sorted at nipple creation stage. No worries. Hoorah!!

Overlap in nipple patch - not likely to flatten out, maybe both sides will need tweaking - can be done at nipple creation stage. No worries.

Different shapes - Left problem child boob can be tweaked after 12 months to make sure that it won't settle first. He agreed that the muscle placement was a little lower on the left and it was a simple tweak that can be done. No worries.

Over the phone, my BCN kept telling me that things would flatten, go down etc but I was right - I need some minor tweaking with a knife. Not worried at all about that. In fact, quite pleased that it was so easy to ask for. Phew!! As I got dressed they left the room I heard the sidekick doctor go, "That's AMAAAZING!". She must've liked my new boobs too.

3. I had my photo taken! One unexpected boob flash. Eric was so pleased with his work and my progress he wanted to have some pictures taken. He knows I'm not shy about all this stuff now and said he wanted to use the photos and have them published. I will ask him more about this another time. It felt great actually, like I am his model for promoting his surgical prowess. It made me feel like all the tweaks that will be done, the nipples I get will be done with pride.

4. Got my blood tested. I found my way to the Outpatients department for blood tests. Took a ticket and five minutes later I was in the chair chatting to the lady. She asked about my surgery so I explained about my gene and surgery. She was listening intently, fascinated so I asked if she wanted to see. She lifted my top at the back and gasped then I showed her my boobs = One surprise boob flash! She was amazed. I told her that if you get breast cancer you can have this kind of fantastic surgery done straight away now instead of mastectomy and then revisiting. Lots of women don't know that. She was gobsmacked. The other blood taking lady came back in and knew she'd missed something. I told them it would give them something to talk about for a while :D

5. I bought some strawberry plants. Retail therapy at the garden centre. Much needed but I torture myself by falling in love with a plant and then not being able to walk away without a severe feeling of disappointment. Today, in light of the sold surfboard, I indulged in a plant I fell in love with. Gorgeous! Now time to got planting..carefully. Gardening gloves and cup of tea at the ready! I'm off to the shed :D

59. Time for a check up..another flash episode

2009-05-08T09:02:00.003+01:00

I've lost count with how many times I've had my boobs inspected now. Today I will go to see my surgeon and breast care nurse who will rate the progress of my new boobs.

As a woman I have a few little things I would like sorted out, after all I am a healthy, young woman with a figure and lost a great set of boobs to all this and I would like some reasonably nice ones to keep in exchange. Sometimes I feel like I am being picky but actually, I have decided that it is MY body and I want it to look good. I have already dealt with the loss of a cup size and I didn't have much to give away in the first place so the least they can do is snip off my dog ears (the ends of the scars on my back near my waist that stick out) and nip and restitch the muscle in my left boob which is not the same shape or hanging the same as the right one. This will cause me problems with ever wearing a bra again as they are at different levels and the underwired bras, the pretty ones that can also give you some extra if you want it, will hurt me. I have a long way to go before I get to wear a bra again but I am planning for the future. I have a school prom to attend with my husband next month and I have to wear a dress without revealing my still kinda scary looking scars on my back, my sticking out dog ears and actually fitting a dress cup. The problem I face now is I used to be an all round 12 and not my upper body is a 10 and my lower is 12. I have come a pear shape and I hate that. That is the thing I am struggling with. My body used to be balanced, equal, in proportion and now I am bottom heavy. I can't explain how upset this makes me, even as I write this I well up. I didn't really appreciate how beautiful my body was before, how perfectly designed, how balanced it was. Now I have a distorted view of myself and I know I will get over it with time but right now, I struggle.

So, I will update my blog later after my appointment. Right now I have so much to write about but trying to stay off the internet to let my brain rest. I think I will do some retail therapy at the garden centre and cheer myself up on the way back, pick up some new bird food to feed my hungry couples who increasingly frequent my bird tables and in turn they will bring their new families to my garden..and hopefully return as adults in the hard winter months. Right now though..spring has well and truly sprung.

58. I might be evolving..into a Woolly Mammoth!!

2009-04-29T14:25:00.003+01:00

A Mammoth? Yeah..maybe but how? Tis a surgical hormonal miracle I tell you!

Went back to the health centre today to get my scar goo, stitch poking out problem looked at again. The nurse hadn't seen my boobs before (I am calling them boobs a lot..smoobs seems to be used in jest only these days). She was initially impressed and then asked what the problem was. I explained about the stitches sticking out and the weeping areas on my back scars. I turned around.."Oh my - wow that's pretty major surgery!" I guess my 7 inch scars are still impressive and shocking. I turned round so we could talk and she comment on how 'hairy' I was. Now this is something I hadn't talked about because I was hoping it was my imagination. I told her that I was not hairy (only my forearms). I even showed her my 'needing a shave' armpits (they are still hard to sort out as I can't feel anything if I cut myself to shreds)to demonstrate how not hairy I am. She agreed, then checked my back which is also not hairy. I told her that since my surgery both my husband and I have noticed that my left breast is getting hairy and pimply like more hair is trying to grow through.

Now there is downy body hair that women have and then there is this..this is wrong. The downy hair has got darker and seems more. Maybe it's just darker. I'm not imagining it. The nurse even commented on it. Weird thing is, it's mostly the left breast, the one that is not quite so good as the right one. It's the problem child.

Aside from that little issue and discussion about being hairy, I had two stitches pulled out of my back. One was the 'knobble' I mentioned before in my previous blog post. She cleaned up the hole (!), put some iodine on it and a dressing. Back to flannel washing again. Damn it!

All looks good otherwise. I am booked in to see both the nurse and a doctor on Friday to get a blood test. She thinks it might be hormonal. Maybe my body is sending hormones to my boobs and my boob skin doesn't know what to do with it so it's decided it would like some hair..not really had that before..this'll teach her for chopping me about.

Thanks hormones..now I have one furry, spotty, not quite so good smoob.

Just what I need! Um...no.

57. Pangs and hurty thangs

2009-04-24T19:22:00.003+01:00

After overdoing it last week and thinking I was doing just great and surely after 4 weeks my body had started healing pretty good by now, I started to suffer for my exertion. I had been moving some rocks (yes rocks..not big ones) around near the pond as we tried to fix a leak. It was a job that had to be done and I tried to be careful. Two days later I felt like I'd been punched in the boobs, back and sides! I still do but its a weird sensation, like an internal bruise ache but only in my boobs now. I guess that will go with time as the muscle inside sorts itself out.

So after my overdoing it incident I started to really look at my back more closely. I noticed a puss-like area on one of my back scars. After having a bath it had disappeared but left a red sore area and there was a black spike sticking out of my back - a stitch! If I look over my shoulder in the mirror I can see my back scars, just, and so by using a hand held mirror and contorting my body a little I can see a bit closer. I spotted another black bobble too - another stitch end. I've been using Bio Oil for the last couple of weeks (week 3-4) to help my scars soften but I have stopped for days now since my scars have started to weep and gone a little yellow and dark purple!

I decided (after much persuasion from Chris, my husband) that I should go and check it out. I called Jenny my Breast Care Nurse (BCN) and left a message about my scars and asked what to do. She called back some time later and told me to go to the GP or to drop in and see her if I could. I decided to think about it over the weekend and then by Wednesday things hadn't improved so I called my local doctors surgery to make an appointment.

Thursday, 1.30pm - Health Centre

I booked in, chose a seat and scanned the room. Virtually empty apart from a couple with a very chatty and happy little boy abour 4 years old. I was happily sat watching and listening to them and their son, smiling to myself. And then, as they got called by the buzzer, the woman stood up and turned towards me. She had a huge bump. And the significance of this? I had a pang of something I thought I would never feel. Sadness. Sadness about pregnancy. It was something deep and as they went through the door my eyes welled up. I blinked it all away. I tried to stop being cruel to myself, I've dealt with all that stuff, the kids stuff. And just as I think the feeling has passed, and as buses do, along came another woman with a huge bump..on her way out of her appointment. She stroked her stretched belly affectionately. I shrank inside. I curled up.

My nurse came and called me in and I asked her for a tissue as my nose was running. I disguised my moment from her and went into the issues of my scars and surgery. This helped me forget the minutes before as I launched into the hows and whys and the BRCA1 gene. She was very interested and very impressed with my surgery. She couldn't believe my boobs had been rebuilt with my back muscles and skin. I let her touch them so she could feel how some areas are still hard inside. She was quite amazed all round.

On looking at my scars, she confirmed the stitches had made it through my skin and there had been some scar opening up and weeping but it had dried and started healing again. Maybe I'd been overdoing it or too much physio? I told her I'd been a little too active in the garden and that I would take it easy. We switched my prescription from Codeine to Co-Codemal so I don't have to take Paracetomal and Codeine and get less of a dose of Codeine which is constipating opiate. I had to make a follow up appointment to see a nurse again in a week to keep an eye on the 'bobble' and stitch end that had been pushed out through my skin. That made me feel better, no antibiotics, no infection just some monitoring.

I have done little all week, no physio, no lifting, nothing. I feel better for it and the fluid on my back is now almost gone. The seroma at the top of my scars on my back has gone down a lot now and is itchy but I know things are getting better. I still hurt but it feels like a world away from the week in hospital now. Your body and mind is equipped with a blurring mode to help forget bad stuff. I am glad to be distancing myself from all that worry, all that stabbing pain, all that fidgeting.

I actually slept on my back with just 2 pillows last night for the first time in 6 weeks. I only woke once, briefly, and I can lie for very short periods on my side now, enough comfort to doze. It's great. Truly great. Normality will be mine again. Yes it will!

56. Time to disturb the mothballs

2009-04-16T16:51:00.013+01:00

I am doing my bit for chaity again but I can assure you that doing Race for Life this year is more challenging for me than it is for you to get your debit or credit card out and pledge a LARGE or a small donation online for Cancer Research UK. Check out my page --> http://www.raceforlifesponsorme.org/leighannjones

Me abseiling 200ft off the Civic Centre in Plymouth

Me running (yes running) the Race for Life on Plymouth Hoe (5km)

This year is special. I am meeting with some very special women who have shared their own intimate journeys, feelings, choices..some even photos of their own scars and knowing them has helped me get through this. These women also have BRCA1 or BRCA2 gene mutations, some have unfortunately already had cancer, some have taken the preventative surgery route like myself but all of us have struggled through our diagnosis, the implications of knowing about our high risk of cancer and how it can filter through the family. We have all endured many family deaths from cancer and we unite this year to make our gene known - we go to promote the support site I set up and we need your cash.

Me in my stylish umbrella hat!

BRCA Umbrella - the support site I set up for people with BRCA gene mutations

Imagine if you had to watch your children agonise over whether to have children or not because of a gene you had passed onto them, imagine watching them decide to undergo 10 hours of surgery to remove perfectly healthy breast tissue or wombs or ovaries.

Now imagine a moment when all that had to happen was a gene mutation fix, where family was no longer an agonising worry, where cancer was no longer a threat..for life.

Your money can help research get there.

55. Progress and challenges

2009-04-11T09:02:00.006+01:00

So here I am, 3 weeks and 5 days on from surgery. I didn't to document every up or down day as they happened, or spend all my time fixed to my screen either. That's a good thing in itself as it shows me that I am not focused on one thing anymore, that life is returning to me and I have taken off my blinkers. Probably a massive relief to all who have to interact with me frequently! I'm sure that it got a little boring but that is what support is, being there, listening, for as long as it takes.

So, as I said before, here I am. Here is far enough away from surgery that I have little 'pain' and the discomfort that was pain is now just discomfort that I have become used to. That takes some time to adjust to, in knowing your limits you can find a smooth rhythmn of getting through a day rather than hurting yourself.

Dressing myself
2 weeks ago I could barely put my arms far enough behind me (not much past the backs of my hips) for my husband to get the arms of my clothes on. Now, with 3 daily physio spurts (which take less than 5 minutes each) I can get my arms behind me at a 45 degree angle or out horizontal. This means I can dress myself and have been doing so without assistance for about a week now. At first it was a juggling act but not it is so much easier. Socks are still tricky to get on but it is possible but I don't ask for help now.

Bathing
I am unfortunate in that I don't have a shower but wish I did. Getting out of a bath is tricky, needing to pull myself up to get out. I can't wash my back still and my husband has to do this for me. Now I am healed really well and risk of infection has pretty much passed, I will invest in some back scrubbing device that I can manage. I don't like the fact that they are sat around drying out after use and the bacteria that forms in such items worried me at first.

Drying Off
Hmm...at first it hurt to touch my body, especially around my armpits. My husband would wipe my skin down with a towel, much less aggravating than rubbing and the way they do it in hospital. I couldn't dry my bottom - very frustrating - I could actually only just reach (and with pain from stretching) wiping after the loo. That is not too much information for those considering the same surgery as me so for those of you who are reading and don't have to worry about such things, it's completely fine for me to say such things. It is one of the things I worried about - would my husband have to wipe me after using the loo? No, he didn't but I worried he would! All dignity would be lost in such a moment but he was prepared to do that for me because he loves me and we are married, exercising the vow 'in sickness and in health'.

Hair Washing
I was so desperate to get it washed that I found a way to do it when I wanted it done. I washed my own hair within the first week of being home. I filled the bathroom sink and could dunk my head in and use a plastic jug to pour water over and rinse. At first it was a massive effort and I hurt a lot after but it was worth it and all part of physio. Now I can sit in the bath and use the shower head off it to wash my hair as I can raise my arms above my head vertically with my elbow bent.

Sleeping
Oh dear. Sleeping. I have had one night of full sleep, 7 hours straight. I was so tired I slept quite literally like a log, without moving all night. I was numb and stiff. Naturally in your sleep you fidget and move around your bed. I couldn't and can't. This week has been better as I can slightly turn on my side for some light relief and it is a small thing - so small but it is huge for me. I have spent 3 weeks led like a log propped up on 2 overlapping pillows with a V pillow (nursing pillow) on top and another pillow for my head. My body could take 3 hours led like a log with pain killers taken at the point of laying down, waking as my body had had enough and my pain killers had worn off. I would wake up, plump my pillows as best I could and take some pills to find comfort enough to fall back to sleep. Now I take my painkillers before going to bed and when I wake up in the night, which is still once or twice, I just plump my pillows and go back to sleep..I've dropped the painkillers. My body seems to have adjusted though, I am not losing sleep at all, just having disturbed sleep every night because my body gets numb laying in one position. Of all the things I want to change, sleeping has to be number one. I cannot wait until I can sleep on my side, lie flat even, sleep on my front again. Sleep is key and I want it back.

Helping Myself
I can now reach the bowls and small plates in the wall cupboards in the kitchen. We have a small house with a small kitchen and so everything has pretty had to stay where it is. I am lucky that I have had my husband here to help me recover, without him things would have been very difficult indeed. He would have had to lay out all the things for my day that were too high to reach and then I could manage well enough until he got home.

Cooking
A week ago I tried to chop up an apple. The downforce required took almost all my effort and I just gave up. I would end up cutting myself or making a right hash of things so I decided to give it a week before attempting chopping again. Last night I challenged some carrots and an onion and won. I made a fantastic chilli which was greatly appreciated by my wonderful hubby who had been out for a sea kayak paddle with his mate JB. He needed a break from me and for his sanity - so I showed him I can cope now and that when he goes back to work he doesn't need to worry about me. It was good to eat my very own meal. It's been almost a month since I last cooked a meal. The microwave is broken too so no instant meals for us. More expense we can't afford. Maybe we don't really need a microwave at all. I might try to live without it. More space in the kitchen.

Painkillers
I was sent home with Paracetamol and Ibuprofen initially, which was just beyond me after I left the hospital that very day after taking Codeine and Morphine!! I had to call my Health Clinic and request Codeine and Movicol (morphine and lying in bed and not eating for 4 days messes up your system..and after 10 days I needed help to go to the loo!!). I was taking the combo of all three every 4 hours in week 1, then dropped some of the Codeine for night time only and day time when I was really feeling it. By week 3 I had stopped Codeine in the day and saved it for getting to sleep when my body was tired from the day and hurting. Week 3 is Paracetamol and Ibuprofen 3 times a day but next week I will try and take Ibuprofen only just for the fluid that is still on my back and in my body. As an anti-inflammatory I figure it is the best one to keep taking but it MUST be with food - it can cause stomach ulcers or bleeding alone, as can Diclofenic. Codeine is now only an occasional thing and only when needed. I don't take any painkillers during the night now but everyone's pain threshold is different and mine is fairly high.

Physio
Three times a day and less than 5 minutes - they are simply exercises that make a massive difference. Anyone too lazy to do these after surgery will pay for it with a much longer recovery. This is the leaflet I was given (.pdf) --> Breast Cancer Care - Physio

Round up of simple yet difficult tasks include:

Lifting and filling a kettle - life without tea? OMG!
Opening the pull ring tins - pulling anything is difficult still
Opening jars (done up with man strength) - this must be how elderly people see jars! Impossible to open!
Getting dressed - socks and pulling up fitting jeans are hardest still but arms were the impossible to start with.
Wiping my butt - Manageable now but I am a size 10/12 and reaching around is still hard work - it would be harder if not impossible if I was a bigger size)
Washing hair - arm reach is crucial and not getting scars wet.
Walking - yep, walking - week 1 and 2 at home wore me out. I ventured into town but after 30 minutes standing on my feet I was dragging my feet. Walking is something to do nearing week two.
Eating - Eating? Yep, having to lean forward towards a plate of food and lift a fork into my mouth..wobbly.

It's a different story now. Nearing 4 weeks on, my life is so much easier. My husband has fed me, collected many things for me, reached for things I couldn't, come to my aid many times, washed me, dressed me, massaged my scars twice a day with Bio-Oil, cleaned the house, done all the washing (and I produced lots in wear once to eliminate infection mode), fed the cats, done the food shopping, watered my plants - all with his own pain. He is amazing and he has suffered for me so that my own suffering was as minimal as possible.

Chris, my dearest husband. I love you. Thank you x

54. And the results are...(drum roll please)...

2009-04-09T16:09:00.005+01:00

My breast tissue dissection and examination after full surgical removal was...

Clear - Normal - No pre-cancerous or cancerous cells detected.

It is official - I cut completely healthy organs from my body.

Hoorah!

Breast Cancer and I had a race and I ran so bloody fast it didn't touch me! I win!

When so many find out too late about their genetic destiny, their BRCA mutation. I made a choice when I found out, my choice was to eliminate my high risk and to undego preventative surgery in order to live a longer life. My breasts are made from other parts of me but they are still me and I can live with my scars comfortably.

I now have a 2% chance of breast cancer - NOT an 85% chance.

Surgery was worth it. My perseverence, my peristence, my determination..my survival instinct drove me onwards through fear and uncertainty and into the unknown.

I won the race against my high risk of breast cancer - I gambled my life on an operating theatre table against the odds of getting breast cancer.

My surgeon helped me prolong my life - he has restored a sense of normality for me, released me from anxiety, from fear, from worry. All that wondering before, fear of pain, fear of disfigurement, stuff deeply troubling me..I weighed it up and it was just so simple. Surgery.

My future has returned.

53. Where has the funny gone?

2009-04-03T12:14:00.003+01:00

I'm all out. I thought I'd experience the misery path for a little while - didn't like it at all so I have battled through the brambles and thorny gorse bushes back to the positive outlook, happy path. Don't go down the misery route - it stinks big time!

It's hard, I prepared to be down some days but it's like walking a cliff edge all the time. If you slip you fall a long way down. I will stay further away from the edge now and try and tread the slopes of beautiful Devon and the cliff paths until I reach the beach of comfort and warm soft sand under my feet. I will close my eyes, raise my face to the sun and smile.

One day..maybe in a few months, maybe a year? I know it is out there, that feeling. I am tired of hurting, of being numb, of tingling, of stabbing pain, of lack of sleep. I am happy to be living with a 2% chance of breast cancer and not an 85% chance of breast cancer.

All the scars in the world are worth living without the fear - the anxiety. I don't care about scars - I can't see them anyway, they are on my back. I will wear vest tops again and people will look and wonder what happened to my body. I will let them wonder, they will be behind me and I will not see them. All that stuff will be behind me in more ways than one.

52. Recovery time

2009-04-02T16:33:00.003+01:00

I have been home for 11 days now and it's been 17 days since my surgery and all is going very well.

When I came home I was a bit of a mental mess. I had become used to no TV, no concentrating on anything, no real company. I found coming home very hard but I was very glad to be back all the same. During my couple of days I wondered how the hell I was supposed to cope at home with my husband in such pain of his own with his knees. He was so tired running in and out of hospital visiting me, not sleeping properly, worrying about me. When I got home his schedule got a whole lot busier and I hated to ask him for anything but initially I needed as much attention as I did in hospital - I could barely do anything for myself except get to the loo, eat and drink. I felt extreme guilt at asking him to do anything and so forced myself to become more independent than I should so early after surgery. My requests for drugs and things upstairs just caused him more problems and eventually we fell out with each other a little. I found being an invalid at home really hard as there were jobs I would just do without ever asking them to be done for me. I had to shut off. I couldn't do things I wanted to do, just what I needed to do.

Day 1 and 2 at home were the most difficult. I hurt, I couldn't get comfy anywhere. I got the post-op blues and cried quite a lot. Its all the drugs wearing off and the emotional relief to be out of hospital and realising you are incapacitated. I just had to let it out. Then nature thought it would be really funny to just launch my period on me. Nice one! I just wanted to curl up and disappear at moments. Day 2 at home I had to wash my hair - it was grimmer than grim. It hadn't been washed for 9 days and it felt like it was crawling on my scalp. Euwwww! Trying to lean over the bath to the shower head was a physical challenge. Both my husband and I were in agony after but we did it and I felt very refreshed.

Day 3 (Wednesday) at home I managed to wash my hair on my own in the bathroom sink with a jug and I was chuffed. I also had my stepson visit with my in-laws. He was a little freaked but wanted to see my operation results and so I happily showed him. It helped him understand why he couldn't hug me or be rough or play fight (this is a big no no and sorely missed :( ). I was knackered by the time they left.

Day 4 (Thursday) I managed to straighten my hair (don't even ask how..I must have been crazy) but I did it. I wanted to look half decent to go back into hospital to have my dressings taken off. I walked so slowly into the hospital, it was taxing. I felt so weak. I made it though. As we made our way through the people I realised I was with a man on crutches and people were dodging him and had no idea how fragile I was too. I was paranoid about being nudged, bumped or knocked. My back started to hurt a lot as I held myself upright for a long time and walked practically a marathon compared to my recent walkabout efforts in hospital and the house. Jenny my breast care nurse (BCN) was pleased to see that things had healed really well but one area on the right nipple patch was still bleeding slightly so she put a couple of big plasters on and told me to keep the scars dry until Saturday. Flannel washing is not effective enough. My armpits felt so sore and nerve damaged that I could barely have them touched and couldn't reach them to clean them myself. My skin is gross, my pores are clogged, my skin is flaking..I cannot wait for the day I can immerse myself in a bath again. I am stinky I'm sure.

Day 6 (Saturday) A bath! I sat in the bath up to my hips - it was lovely for a short time but my back started to ache a lot. It was painful but worth it. My husband washed my back down with a moist cotton cloth I brought back from hospital. It was weird to feel pressure but no sensation of touch on my back. He wiped my armpits which hurt like mad, like flu-skin all the time. I have no idea what is going on there. The surgeon told me later in the week that it was probably referred pain. That means that my arms are not damaged but the nerves have been cut under my arms where the muscles have been pulled through to the breast area and that my brain has panicked. My brain thinks my arms hurt because the nerves have been severed. I may never regain the feeling in the backs of my arms or my armpits but only time will tell. The sensation is horrible but I am trying to convince my brain that it is not painful. I hope this will help it get over the trauma. Me talking to my brain..It's okay brain, my arm is okay and so is the other one now stop sending me pain signals because its rather uncomfortable and weird and I am not enjoying the experience. Ta! I do hope my brain is listening to me.

Day 8 (Monday) I stopped day napping. Although I feel tired I can't seem to nap anymore. I know sleeping is the best therapy but I can't. I just rest instead. I wish I could just sleep but sleeping at night is hard enough without ruining my sleep pattern with day napping too. I gave up trying and just spent the following days just taking it very very easy.

Day 9 (Tuesday) I resigned myself to a day in bed. I needed comfy rest. I spent almost 5 hours in bed watching TV and just shutting my eyes. It was worth it.

Day 10 (Wednesday) Fluid draining and post op check up!! I managed to survive a ride to hospital to meet Mr Cant (seeing me in Me Drabble's absence) for a post op check up. All is fine. I haven't heard about my breast tissue exam yet and I assume all is well but I forgot to ask about it so, in the absence of news, I will assume good news and there was no cancer found or they would be on me about chemo or radiation or something I'm sure. A real 'no we didn't find any cancer' is what I wanted but I still don't know. We discussed numbness and weird sensations and he kept reminding me that it is early days (impatient me again) and that the lump in the left breast does feel like muscle and might not ever go down but should do with time. I hope so. Mr Cant felt very clinical and as I questioned the feelings in my body I almost felt like he was telling me tough, you chose this surgery. I know that's probably completely irrational but that's how I felt. Mr Drabble is much more personable and reassuring in manner. I thought Mr Cant was very clinical but very factual in our discussion. I felt a little sad though, I would have like both my breasts to be the same now, my right one is so much better than the left. I had matching boobs before and now I don't I am not sure I believe they ever will be. I know time will tell but I have to face maybe never having symmetry again. I have to focus on being alive not perfect!

Whilst I was there I showed him the fluid on my back that had been building since the drains had been removed. I managed to lay on my side (just) and didn't feel the local anaesthetic injection in my lower right back. Then a pushing sensation and then a liquid noise. 100ml of fluid removed from the right where the muscle used to be in my back. The left was less comfortable. I felt the needle go in, stinging me then burning like mad under my skin. I sucked air through my teeth in pain and squeezed the nurses fingers hard (sorry!). She told me to breathe deeply through it. Finally it subsided and then the pushing. He pressed my back and air came out as well as 150ml of liquid. My husband said it looked like I was having a wee out of my back. Nice! I asked what colour it was and if I could see it. 250ml of frothy topped lucozade orange cloudy liquid. Cool but also yuk! I felt a whole lot lighter and smaller! My back was squelchy again on the left as I moved but I prayed the fluid wouldn't come back again in such quantity. Hurry body, heal!

We then went into my husband's work to drop off some paperwork. He is a secondary school teacher and it was great to see inside his work and a school again. It was a fleeting visit and then we popped into Tescos to get some shopping and I felt utterly exposed and vulnerable. Everyone was potentially going to hurt my fragile body. I must have looked so paranoid AND lazy as my husband pushed the trolley with one hand and one in a wrist crutch. I couldn't reach anything much and I just looked totally pathetic. I felt useless. My back was killing me by now. I had already done way too much. We returned home and had lunch then I managed to sit in the car for 40 minutes travelling to see my stepson. I held up all afternoon, out in the garden, sitting in the conservatory, ate dinner at my mum-in-laws and then made it home again in the car for another 40 minute ride. I couldn't have made it without my soft pillow to lean on. Travelling right now is still very very uncomfortable and leaves me tense with no means of relaxing my muscles in my back. Oh for a massage!!

Day 11 (Thursday - today) A take it easy day. I woke twice in the night but went back to sleep without any painkillers. I think this was due to the fluid drain. I was so much more comfortable. I felt so tired when I woke up though. I decided to just hang out in the garden. Poked around in the pond and sat in the sun, not a lot else. I was totally knackered after yesterday and it was just a ridiculous amount of stuff to do so soon after my operation. I am a fool. I feel okay though, just very tired. I must slow down now, I know I am doing to much and I do not want any repercussions from my stupidity so for the next week I will try to nap at least 30 minutes a day and take it easy. Which is something I find hard to do.

I so need a trip to the beach! I could sit for hours watching people surf, fish, build sand castles, dig trenches, dams and fly kites. I have to go soon. I know I can survive the bumpy wiggly country lanes from here to the beach. It's 20ish minutes..I am going to schedule it in for next week. I have to get there. In the meantime some river sitting action wouldn't go amiss. I have started with pond sitting for now and will build up to the big stuff by next week. I need to get out! I am missing my car and I will start walking alone next week too. I need to before I go mad (or more mad).

51. My week in hospital - Day 2 to Day 7 and home we go!

2009-03-28T17:32:00.027Z

This is the biggy - the full hospital encounter.

Day 0 and Day 1 were spent getting pumped with fluid and mostly on the operating table and so I recalled the day leading upto and the morning in my last post.

Fluid changed me from this..

To this in 8 hours.

Day 2 and Day 3 - Waking up to face the heat!

Day 2 and Day 3 were days of personal challenge and tolerance. I am so glad I barely remember this bit because it was hot...hot as hell and I was chubby as you like from about 6 units of fluid they put in through my Canula on the back of my hand. I sweated, a lot. The morphine was on tap with a thumb presser. I remember the nurses kept coming and going checking my morphine use and telling me I could use it when I wanted and commenting on how I wasn't using it much at all. I was though, I was not in pain as such more discomfort. The more morphine I used the more I itched and no-one told me until later in the week that I could have taken anti-histamine tablets to stop the itching! It would have halfed my personal torture I can tell you. In and out of morphine haze I remembered the physio had told me to clench my buttocks and wiggle my feet, bend my knees periodically and breath deeply to reduce DVP (deep veing thrombosis) and pneumonia chances. So I did. The bear hugger blanket kept my body temperature at 38 degrees Celsius to help the healing, open the capillaries in my blood and such other good for me reasons. It was nauseating hell! It didn't help that when I did the physio I kicked the bear hugger inflating tube and it would deflate, I would cool, I would call I nurse on the button and then, when reconnected to the inflatable blanket my body would try and aclimatise to the nauseating heat again. It was a nightmare. It filled me with dread every time it came loose. Day 2 I was visited by my gorgeous hubby who I was so glad to see.

Day 3 was the worst day for the bear hugger - during a bed bath it was disconnected and I had to endure sickening pain as I moved to aid the nurses change my bed linen whilst I was in it and to get me clean. I was so exhausted from all the moving and the morphine itching (that I couldn't reach or hurt myself trying to scratch), the shifting relentlessly to find some comfort (without much success) as I led on my drains in my back. As I was sponged down by nurses my mouth dried so much I couldn't speak or swallow and I was scared, genuinely. The nurses were busy sorting my drains out as there were 10 of them and bed baths and bed change is not very friendly to drains! I panicked and then tears streamed down my face as I got stuck in a sad, painful, too hard place. I had never felt so low or so afraid in my life. What the hell have I done to myself - why do I have to do this to live? Why? The nurses plugged me back in just before lunch arrived and my temperature soared. I tried to eat some toast but I took one bite and then wanted to cry as the nausea reached a point where I nearly asked for one of those cardboard bowls..but I survived. It passed. I controlled it and then I knew it would be okay. I was tough. I heard a lot of women in the nearby wards who were not so well, I felt for them - I had major surgery and I was well. I was more well than I realised as people kept telling me so.

Day 3 lingered and my tolerance waned as the deadline to remove the bear hugger came closer. At visiting time in the afternoon my husband and my mum-in-law arrived. I was grumpy. I was so hot, so sick of the itching, so tired that I spouted utter crap that I don't really remember. I apologise to anyone I offended if I did..it was hard. I was suffering under that damned blanket. I sprayed myself lots to cool down. I counted the hours, the minutes until it was off. I celebrated the moment everytime someone came in - telling them that today it was coming off. Then..as if the moment would never arrive..it was coming off!! Whoooopeeeee!!! A nurse said the most precious of words to me.."It's nearly time..only 15 minutes to go. Shhhhh..I'll take it off now as I am in here. Okay?" I wish I could have hugged her (no pun intended). It was the best thing ever. Get it off!!

Above is a picture of the very very very helpful healing bear hugger blanket that I loathe. It had moments where both the heat and the morphine combined to create a moment of peace and null void feeling. I remember little really and very glad about that!

At 5pm two of my favourite nurses came in to transform me back into a woman! It was bliss! Another bed bath and a breast surgery nightie (wide and able to slip elbows into arm holes). Angela (my angel) brushed my hair and made me happy again. I felt amazing and by the time that my husband arrived back for the next visiting slot I had been transported half way back to his wife again. I was happy! And I had beautiful flowers and messages of support. Surgery, bear hugger, morphine drip now off the list. I was down to catheter and drain removal now. Halfway there...halfway.

Day 4 was a celebration of surviving Day 3 and getting out of my stupid air mattress bed that made my bum numb and sore. I sat in my chair for the first time and it was almost bliss. Comfort. I ate for the first time in 4 days. I marvelled at the size of my thighs whilst I carried so much water still. I took a photo of my anti-DVT socks...hate them, itchy, get them off too!

I sat for hours and paid for it when I was helped back into bed. I tried to sleep that night but I woke with my teeth chattering, feeling scared. My body had got so used to laying numbly stiff like a log and the drugs had worn off but I didn't wake up in time to be ahead of the pain. My body was in shock. I called the nurse and told her I was shivering. She got me a blanket and left (I was a little stunned). I couldn't settle..still shivering and teeth chattering I pressed the button and asked for pain relief and to get back into the chair so I could sleep. The air mattress was so uncomfortable to lie on with my drains I couldn't stand it. So they changed it at 3am in the morning (sorry ladies) and I slept upright in my chair for 5 hours. Bliss!

Below is a picture of the bum eating but but bed sore preventing air mattress which alternates inflation tubes. You get comfy and then it deflates and you shuffle to get comfy, then it re-inflates..the process repeats. Stab the mattress!! ARRRRRGH!!

This is a picture of one drain - I had 10 of these babies! OW OW OW OWWWWW!!!

Day 5 out came 5 drains! Woohoo!!

It was time, they were coming out - finally some peace. Unfortunately the ones coming out were the ones in the front. My back ones were still draining well and I was not happy. They were agony to lie on. I reminded myself that they would be out soon - the levels of fluid were less each day. The nurse thought it would be the next day they would come out. I hoped, prayed, wished. They didn't come out until day 7 after some mishap with labelling new exchange bottles for some of the drains and the output chart was out of sync. I suffered another 2 days instead. I was a little angry to say the least.

This is a picture of me on Day 5 - tired, exhausted, pained, fedup me! This is what the drains and the bed and the blanket did to me. God I need a facial!! ha ha!

My day improved again when my lovely physio Martine called by to take me for my fist wobbly walk - which I did twice along with catheter and 5 drains in two little handmade shopping bags. Excellent - I was up! I was strong. It was harder than I imagined, like I had been hit with a steamroller but it felt good.

Day 5 was a great day! I began to enjoy my food and the evening hot drink and some light entertainment as the week went on. Things were on the up!

My least healthy meal of the week - cheese and onion pasty and beans with strawberry cheesecake and after dinner drugs! Tasty! I took this one for the hubby!

Day 6 will I ever get out of here?

I looked so much more like me, I had finally got some rest (some) after sleeping for only hours at a time and suffering lots of drain pain. But things were better and the final day was approaching. Although I hoped my remaining drains would be out, they weren't. The mix up with output levels prolonged their stay until Day 7. I coped, I had my catheter out. Still constipated (thats morphine and lazing around for you!) but able to walk up and down the corridor with my shopping bags filled with delicious drain juice bottles! Tomorrow I would fight to get the damned drains out..tooth and nail, I would fight. It was getting silly.

Day 7 Release Mrs Jones!!!

Finally, the day had come. 7 days after I had arrived, 6 days after surgery - I was freed. I was scanning the drain charts with my husband and showing him how they had been messed up and I knew they were ready to come out 2 days before but hadn't been removed. I could see what had happened but in the grand scheme of things, it didn't matter because today I would make them come out. As we studied the charts my surgeon arrived, asked for a boob flash to check healing, checked my drain bottles and paperwork - recognised the error and said that was it, they were coming out today and I could go home! I was speechless!! HOOOORAY!!!

I gulped - held my breath and gambled that the very last drain would be the worst, the one that had haunted me in my sleep. I was right..it was last..it was the best feeling after though as they were all out. WOW! How different my body felt. I had been so tight and now all the spaghetti tubes were out. WOW!!

Angela (my angel nurse) wheeled me and all my stuff, balloon floating high and hidden behind bunches of flowers to the main entrance whilst my husband negotiated his way out of the hospital on his crutches to get the car and come and collect me. I hugged that wonderful lady goodbye and kissed her, thanking her and all her fellow nurses for caring for me. I was free. I was going home!!

Home

So quiet, so peaceful. It was good and weird to be back. The garden was looking great, buds bursting and flowers blooming. The start of the real recovery was here. 4 days after getting home I had my dressings off and everything was looking good and healing well.

Phew..

50. My week in hospital - Day -1 and Day 1

2009-03-28T10:09:00.008Z

Arriving at hospital - Sunday 15th March 2009

Arriving at Derriford Hospital was freaky - this was it, my time..my operation. Chris was cool and calm as usual. We made our way to Primrose Ward and booked in with reception and was shown my room. A nice but small room with an en-suite toilet. Very private and with a view of Dartmoor! Bonus!

We sat and talked for a while and then my consultant/surgeon arrived to go through the surgery one last time and to mark my body the areas where tissue would be removed and to be moved. Chris was tired by 9pm and so he left me..the complete me. I told him I would see him in the morning and settled into my room and bed.

At 10pm I was offered a hot drink and I welcomed it with open arms..I hadn't eaten anything since the morning when Chris cooked a large full English breakfast! I played Nintendo DS games til I couldn't stay awake anymore and tried to sleep on the air mattress as best I could.

Surgery - Monday 16th March 2009

I woke really early and watched the sun rise over the moor from my room. It looked like a beautiful day and I waited for Chris to arrive. 6.30am he left home and arrived with me about 6.50am. We had a good 2 hours together before the hustle and bustle started outside my room. We'd met the anaesthetist who was lovely and ran through some paperwork and questions. She was gentle and made Chris feel good about who was dealing with me whilst I was asleep. Mr Drabble arrived (my surgeon) and lots of nurses with theatre gowns and head scarves on. I became one of those people you pass when visiting, the people in the beds being wheeled around. Chris came with me as far as he could and then we said goodbye. I told him to have a great surf and prayed for myself and for perfect surf for Chris, he would feel better about me if he was having a perfect session. The trolley was wheeled by a man and woman nurse, they were calm and negotiated me through the hospital with ease. The woman and I talked a little and she talked about how she lived in the city but had 2 ducks. It helped pass the emptyness between room and theatre. When we got to the waiting bay I started to shake, almost like shock and the lack of food and sleep had kicked in. A lovely nurse called Karen arrived, rubbed my feet kindly, joked about some things and then broke the news that there were no theatre beds to wheel me in.. I had to walk into the place you only see on tv. MAD! I said it was cool and that I would be fine but I needed to cover my bum because of the split gown. They wrapped me in a sheet and I joked about looking like a ghost wandering the corridors as they opened the anaesthetist doors and we passed through the little room that is normally the last thing you see before you wake up again, into the vast theatre.

It was light and very big. There were people almost hiding in the side wings, waiting for me to get settled. I wonder if they had all been told to hide away so as not to frighten me. Apparently there would be about 10-12 people in the theatre with me but I only saw about 4 and some hiding as I jumped up onto the high stainless steel slab of the theatre table. I led down. The anaesthetist came in and identified herself in case I didn't recognise her all dressed in green gowns and head scarf. She gave me the G 'n' T drugs that make you woozy before they add the knock out juice but I don't remember another moment, I must have passed out with the first stuff.

I was gone..I was in their hands and I would wake up any second. Everyone else would be waiting another 12 hours before they saw me awake again.

I went in at 9.45am and I came out of recovery at 10.10pm over 12 hours later.

Recovery Room

I woke up feeling sleepy but good. A man and a woman were there in green gowns but no other patients. I remember asking if the room was normally so empty and the man explained that there were normally a few people at a time there. The next thing I knew I was almost at my room again with Chris smiling but looking apprehensive. He gave me flowers and kissed me. He was relieved and so was I. I woke up. Chris told me everything had gone really well and that the surgeon was pleased and so was he. I don't know how long he stayed, I barely remember a thing from there. I complained about the hot blanket (bear hugger) apparently but I do not remember doing so. Later that night I remember a nurse in white who asked about my catheter and told me she had to change it as it wasn't draining. I told her I felt full and then I passed out. Apparently my catheter was not draining my bladder and I had another fitted whilst I was out of it.

The hard part starts here, the heat endurance, the nausea, the morphine itches.

49. The dressings are OFF!

2009-03-26T15:51:00.001Z

I have realised I use far too many exclamation marks!!! I am gonna try and give it up a little (if I can).

Not quite up to recalling my week in hospital but I will soon.

Today's update is that I had my dressings off. Everything looks clean and healing really well. I am so pleased. Voiced my concerns about the slight swelling around my left armpit and side of my breast which is where the muscle has been pulled forward under my armpit and into the breast skin. The right side looks amazing but the left will need a little more loving and softening to get it to 'relax'. I know it will take time but I am rather impatient but a realist too so I am not expecting perfection.

The pain of wounds and bruising has subsided immensely ovenight - weird! I am experiencing more middle back pain as I spend more time supporting my upper body sitting. My bottom is numb a lot from the amount of lying down and sitting I am doing but a quick get up and walk around is sorting that out. In saying that, having my arms hanging is quite painful in itself. My back is now compensating for the loss of the latissimus dorsi muscles and I will have to take it easy and do lots more physio. I think I will be ready to do some more advanced exercises in a few days. Things are so much easier today but the mammoth walk into the hospital and out again was slow and tiring. I was with my husband who is on forearm crutches and people would assume I was with him and not there for me. I became quite paranoid about being banged or knocked as people avoided the more obvious disablement of my hubby. The lift made me edgy - people jammed in and I sheilded my chest and thankfully had worn a nice puffy feather gilet which made me feel more protected from a knock.

My BCN (breast care nurse) is pleased with my results and said Mr Drabble has done a good job for me and it is all looking good but that I must take it easy.

Now that moments of comfort are appearing here and there it seems I can enjoy getting better.

I have had some days of sheer frustration, dropping things, can't pick them up, making my hubby bend down with his bad knees and help me. I thoroughly advise anyone who does the back muscle op to get one of those long reach grabbers for picking up small items that go to the floor - getting down there is hard work. My core muscles and glutimus maximus are getting a good workout I can tell you.

Anyway..all is good. 2 weeks of body torture are worth every moment I stop and remember that I don't feel the fear, the anxiety. It is totally priceless and drives you onwards, even when you think you can't get out of bed, or you can't sleep. The tiredness is the hard thing, it makes everything else so difficult but it seems to be fading now..just 11 days ago I was out of it..6 days ago I was in agony..today I feel good, twinging, aching, sore but good.

Today is a good day. And I got flowers from family and they are gorgeous. Never had so much nice post in my life, its like a prolonged birthday and it is so appreciated.

Something perks you up everyday. Surgery is hard - harder than I thought but the feeling is amazing and it makes accepting the body change so much easier. I have been given a life and I want to hug my consultant and everyone. I stopped a lady I recognised in the hospital who had only popped her head in once during my stay, I thanked her and told her I was doing well. She said I had got up and on my feet, coped and progressed so much quicker than most women they had seen. That made me feel good - I know I am doing well. I am so glad.

Whew...tired arms now..signing off.

BAck in the social scene again soon..at the moment, its all about me and I only have small time slots on the internet (hubby will kill me if I am on here too long: ) x)

48. Back Home...at last

2009-03-24T10:50:00.004Z

Hooray!! I made it home..in one piece(?)..or several rearranged pieces anyway.

The sun is shining and my garden has blossomed with a beautiful week of sunshine. I can now enjoy my hard work and relax (??!! I 'will' know what this feels like again one day).

Thank you for your well wishes, your thoughts, I had a good operation and the results are brilliant! Some of the nurses said it was the best reconstruction work they had ever seen so that's reassuring. I think I am about the same size as before but it will take some time for things to settle.

I feel relieved though - not something I can explain here and now..I feel free of the worry. It is truly something I never thought I would feel and I have to sit and think about this some more.

Its good to be home but it is even better to be without my drains. I had 10 drains, 2 from under the breasts each side and 3 from the back where the latissimus dorsi muscle was taken out for the reconstruction. I don't want to detract from the gladness of being home but I am in pain. They sent me home with paracetamol and ibuprofen which often feels like a joke but they take the edge off enough to stop a lot of wincing. I can't lift anything, I can't dress myself, I can't get up in the night and put on a dressing gown..it is a nightmare. Having no arms sucks. The operation means the muscles from your back are tunnelled under your skin, under your armpits and the bruising and ache is hard work. My poor disabled hubby deals with his own pain and now he has to run around after me too. Nightmare..but it will get easier..it will.

It seems like such a mammoth journey to write down at the moment and so I will save the full detail write up for another day when I have the brain power (fuzzy does not begin to describe my memory, speech or concentration right now). My darling hubby has taken lots of photos to document the process, the healing, the changes that occur and I will post these privately on BRCA Umbrella when I can.

I have followed lots of blogs and seen lots of photos of other reconstruction work but not ever really found anyone who had the back muscle reconstruction work done. Most women seem to opt for the implants or TRAM Flap (tummy muscle) option. Everyone seems to say it is not that bad and the drains will be out and things will feel better but with the back muscle (see below image of Latissimus Dorsi muscle) and the site of the drains, you have to sleep and lay and rest on your wounds and drains.

I cannot tell you how uncomfortable it has been and still is. I am not pretending that it is easy. I got no rest without morphine, I constantly shifted my body through pain to ease the pressure on my drains in my back (long tubes under my skin attached to vacuumed bottoms to suck out the weep (sorry for the gross description but that is what they do). It was relentless and I am exhausted from lack of sleep and the pain. The drains, although everyone says that you just breathe in and the nurse tugs them out, were a nightmare to pull. I had 5 each side of me trailing off the bed and put my hands on them trying to lift my body to move and shift, tugging them. My back was so drum tight where so much skin was taken (a large eye shape each side) and the drains touched nerves and my skin was bruised and sore from lying on them all coiled under my skin. This was never going to be a pretend everything is cool site, the enormity of this operation is not to be underestimated..it is tougher than I imagined.

This has to be the hardest thing I have ever done in my life but everyday it should get easier. I am plateauing at the moment where my body is healing now I am more rested without all the nurses coming in and out, checking blood pressure, emptying my catheter, giving me pain relief, feeding me, offering water, seeing how I am, visitors, cleaners..it is relentless. Home is where you heal and rest - hospital is where they put you back together and give you a headstart, care for you at the very core.

I watched the amazing nurses of Primrose Ward, Derriford Hospital, Plymouth work flat out, juggle priorities as they constantly change, meet the demands of their patients, share a moment with me, hold my hand, wash my body, ignore the irritability, the tiredness, make me feel safe. I am humbled by the beautiful women they are, they work with their own disabilities like MS, joint problems, single mothers juggling family life, working shifts, being short staffed. They are paid nowhere near enough for what they do - they are amazing and they do an relentless and tiring job. I wonder how many people say thank you to them - tell them they are brilliant? I did, I made sure that I thanked everyone for tolerating me, for helping me, for caring for me, for sharing with me, for feeding me, for cleaning my room. I have shed tears at how stunning these people are, the ones that help people get well again. They have touched me deeply and my week in hospital, for all the pain was worth it to have my faith in humanity restored, to jolt my life back into perspective, to allow me to see the beauty in people again.

I felt like Neo in The Matrix.. I could see all the positive in the process, I feel blessed to have been given the opportunity to live a longer life - and I am ever grateful!

:)

47. One day to go..one day

2009-03-22T10:17:00.002Z

I look normal again. On monday i was so pumped with fluid for the op i had no creases in my eyelids. Look what i week can do! And 2 nights of decent rest. Full update when i get settled back at home. 5 more drains to come out today..eek! :)

Leigh-ann's surgery

2009-03-17T07:54:00.001Z

Hi all,

As most of you know, Leigh-ann had a double mastectomy with reconstruction yesterday, and to cut a long-story-short she is doing fine.

I went into the hospital at 6:50am yesterday to be with Leigh-ann whilst she went through the pre-op prep, and she was taken down to theatre at 8:20. She went into theatre at 9:45 and then didn't get back to the ward until 21:50; that's a whopping 12 hours (2 hours were in recovery). The surgeon is initially pleased with how everything went, though we'll find out more today.

Leigh-ann is extremeley tired and hot (she is kept at 38 degrees to promote good blood flow), and very agitated and irritable, but she is pleased it is over (though I think the hard bit has just begun), and last night she was drinking and talking happily.

It was a phenomenally long day, but when I left Leigh-ann at the hospital I went straight to the beach with my kayak. I knew everything was going to be fine when I came over the hill to find glassy smooth 2ft waves peeling over the sand bars, and there was no-one else in sight!!! On such a perfect day I knew nothing could go wrong and so I happily surfed until 12:00 and then got a load of stuff done at home before I headed back to the hospital.

Thanks to everyone for your wishes, Leigh-ann appreciates them all.

Chris

46. With danger boobs - pre-op blog entry

2009-03-14T18:47:00.002Z

So, here I am. Less than 24 hours until I am sat in my own hospital room on the final countdown. I have been fine all day..all week actually but today I had a 'moment' when I realised the enormity of what I am about to do. I just talked myself round that women do this everyday, they survive and cope. I am fine now.

I have been gardening and completing paperwork today. Its been a weird but nice day, slow..long. I have just completely lost my appetite but at least I have eaten today..going to try and have some dinner when I sign off.

So, here's my list of things to take with me. I am not going overboard, I haven't read anyone elses list and I think I am being practical here.

Body
Toothbrush
Toothpaste
Wash stuff/flannel
Shampoo
Wipes (useful for keeping cool and clean)
Hand gel (I am a bit of a germ freak)
Bio-Oil
Tissues
Ear plugs
Alice band
Hair bands
Hairbrush

Clothes
PJs
Slippers/slipper socks
Jog pants (for going and coming home)
T-shirt (for going and coming home)
Undies (no bra though - lol!)

Gadgets & Entertainment
Mobile phone (now that you can use them in hospital)
Charger
Nintendo DS (keep the brain busy)
Charger
MP3 player
Notebook
Puzzle Books
Pens

And that's it..if anyone knows of anything I should take but haven't listed - please let me know. I will log on tomorrow (Sunday) but not posting again until I am awake (which Chris will do for me - thank you honey x).

I know I will be nervous but I have no choice now, no control, no options other than to just go forth - go with the armour that is my strength and think about the blessing that I have been given.

And finally, some Thank yous..

Mum - thank you for doing your DNA test and for being so level headed about things.
Dad - thank you Dad for coming to see me this week and for talking with me.
Lori - my in-law mum - thank you for gathering so many bits for me and for your kindness throughout.
Bob - my in-law dad - thank you for being you and for supporting us.
BRCA Umbrella friends - thank you ladies..thank you for your continued kind words and for sharing intimate stuff, your lives, your feelings, your thoughts, your photos. It is a priceless gift and I wouldn't have made it this far without you all.
Selina Goodman - my genetic counsellor - you have been a peaceful oasis of calm every time we have talked. Thank you for understanding me.

And finally..

Chris - my wonderful, thoughtful, patient husband - I adore you, you have been through all the hard stuff, wiped my tears, held me when I have been scared, felt alone, talked sense to me, kept me grounded and stood by me through every wobbly moment. I love you more than I can tell or show you. You are my rock. I know you will love the new me as much as the old me and I love you for helping me through this - without you this would have been impossible. Thank you x

Whoa..okay folks..signing off now, going to the beach tomorrow for some fresh air, relaxing quality time with Chris and then taking my mutant ass to Derriford hosptial for and overnight stay and then some major danger boob removing surgery on Monday!

45. Pre-Op Check - all systems go

2009-03-13T10:59:00.002Z

I spent hours in the hospital yesterday having my blood taken, swabs up my nose, my groin and mouth for MRSA testing, blood pressure, weight, height, filling in forms, answering questions and finally, a last chat with my BCN (breast care nurse).

She asked if I had thought about if the surgery went wrong or not to plan. I could wake up with one breast, no breasts even. Although it is not likely, I have already thought about it and I cannot control that. I would be upset for a little while but I know it would be temporary and I could have follow up surgery to fix it. That's all I can think about that really..no point worrying now, its too late..its happening on Monday.

I have to go into the hospital (Derriford) on Sunday evening at 6pm and stay overnight. My surgery will be 8-9am on Monday and I will be in a side room for about a week. The Primrose Ward is a cancer ward and it will really hit me that I have been very lucky but also a little guilty too. Silly? Yes, I can't help that I know, I have fought long and hard to know - to change my future. I just have to focus on being strong and a good patient. I was told that I am not to suffer in pain in silence, that pain meds will help me heal because my body will be relaxed.

I probably won't be on my feet until Thursday, so thats 3 days flat on my back, sponge baths twice a day by the nurses, the hot blanket for the first 2 days and morphine on demand. It all sounds okay. I can handle it.

There are some other major stresses going on in the background that poor hubby is dealing with and I think we are both just very, very worn out right now. CSA crap and money issues just don't make life any easier but we have to keep moving forward.

Well..time to get on with my day. Got a lot to do. I will probably post again tonight. My packing list will make a feature I'm sure. Mum-in-law has been amazing and gathered lots of bits for me to keep my overactive brain occupied. That will also help with pain management.

Lets hope its gonna be a walk in the park but I am ready for whatever happens.

: )

44. Make way..here comes the Operation Queen!

2009-03-09T16:04:00.003Z

The title is for my hubby - he (and my sepson) call me the Queen of all things..the Bead Queen (hence my jewellery website name www.beadqueen.co.uk), Gardening Queen, Photography Queen..generally you are the "fill in the blanks" Queen, attached to anything that I am doing at the time. I love it..I know that I am appreciated and loved because I am their Queen.

So..today I am preparing to be the Operation Queen.

I am sat in my conservatory on a less than sunny day, a bit windy, a bit dull and dreary. I have a cup of tea and my laptop (for those concerned..yes it is staying at home and not coming to hospital with me).

This morning I went to see my GP and I explained that I needed a few signatures about stairlifts and my sick note for my op and recovery period. He signed me off for 10 weeks, to be reviewed but that should be plenty for me to get back on my feet with no complications. I also told him about my secret worry: my right breast with an area of thickening, the one that got needle biopsied when I was 27. He examined me and said it is free moving, although lumpy but nothing to worry about probably but with my family history and the BRCA1 gene, it was worth highlighting to the surgeon. He called the hospital whilst I was there, just so they can check it when I do my pre-op medical check on Thursday.

He wished me well and I left feeling much happier about my lumpy boob. Its always caused me concern but I just hope that I am about the nail it from ever becoming anything other than a breast thickening. Whew!

I pottered about town after that, gathered some ingredients to make a delicious Chocolate Guinness cake (yum!) and made my way back home. The phone has been ringing increasingly over the last few days, understandable I guess and today I have spoken to BT (telling them to go away and leave us alone), Jenny my breast care nurse, my Dad - twice, my husband, my mum-in-law and my dear friend Sam.

Jenny, my BCN (breast care nurse)called to see how I was after the shock announcement about my surgery date moving. She wantede to re-organise another time to meet with me before my op and so I'll pop in to see her after my pre-op checkup and just run through the final questions and maybe take some bloods etc. I am due into the hospital on Sunday but I am not sure what time. I have to be in the night before my op so that I am not delayed at all as the surgery will take all day (approx. 8 hours).

I feel strangely calm, I felt very alone for so long although Chris has always been there but recently confessed that this BRCA thing has taken over our lives a little. That's the thing with it all, it can be all consuming but soon, I will not be the worrying BRCA bint - I will be free of the boob worry. I cannot wait. I think I might cry with relief.

I have lists of things to do, what needs to be packed, what I want to ask, what will happen on Sunday, checked around the house for things unreachable, been through my clothes for easy to wear things (do up at the front is preferable but I am short of such items!).

The hoover is still pathetic and so I will spend a few hours trying to get as much clean as possible before the week is out.

I feel very tired today. I think the mental strain is telling. All the years, months, days of the nag have almost come to one point. I am amazed that it is nearly here. This is the biggest goal I have ever aimed for, it has taken the longest time, the biggest of battles and once Monday evening arrives and I wake up..I will have made it.

My goal is in sight. My breast cancer free goal. Sod off thickening - you are just that and nothing else. I am going to beat you to the finish line.

Cancer? No..not for me. No No No No No!

On Monday evening I am blowing the biggest, fattest, rudest RASPBERRY at you Breast Cancer!

I am winning..I am the Operation Queen! : )

43. All aboard! This train is going FAST FORWARD>>>

2009-03-06T16:14:00.006Z

My phone rang earlier..Private, just missed it. I picked up the message left, it was my surgeon, Dr Drabble. He just said he would call back again or if I could, to call him or his secretary.

So, what could it be? Either a cancellation or a postponement of my operation date - logic says. I'm sure he wasn't phoning for a general chat.

I call the hospital and ask to be put through. Dr Drabble's secretary picks up the call and then tells me to hang on and she will pass me over to him.

"Hello Leigh-ann, now..you know we were planning your surgery for the 30th, well I am afraid I am going to be away for some time around then. I'm sorry, but we are going to have to move your operation date."

"Right.."

"We can bring if forward 2 weeks to 16th March."

"...oh..um..when is that?"

"That's a week on Monday. I know it will make it might make it more difficult for your hubby to be able care for you. What do you think?"

"I guess I'd rather have it done sooner rather than later. We will have to sort something out."

"We could keep you in hospital a little longer until you are feeling a little more able to cope, if it helps."

"Yeah..we will see what happens. I guess I am just a bit..well..you know..shocked. I was ready for 3 weeks. I guess it's okay. I won't see you before now, not until the surgery. Should I speak to the Breast Care Nurse instead?"

"Yes, we are making all the changes that need to happen here, to bring it forward so if you could speak with the BCN that would be good. We'll be in touch. See you then, Leigh-ann."

Okay...so someone pressed the fast forward button on my life. I had a minor panic attack, light headed moment after I got off the phone. My dumbass period and hormones mean I am very sensitive at the moment. Yesterday I wanted to cry in the job centre when, yet again, the dumbasses forgot to tell me I didn't need to drive all the way into the city, pay for parking and queue for 20 minutes. I was livid! 3rd journey in a month that they have wasted my time now. The whole place makes me edgy - if you can get beyond the frontline hardnuts and security guards (yes, security guards!), there are real people sat at desks, thankfully.

Chris popped in on the way through to pick up Max. We were both shocked and both a little tense about the date move, but - it will be fine. I am just worried about Chris and school and time off. He will be so knackered running around after me, school won't give him the time off and that's why it was planned for Easter. What a mess.

So here we are..9 days until I have to climb into a hospital bed. I just want it over..I want it over. It's been the longest time coming - eons in fact!

So..all my DIY plans, my gardening plans..all gone. No time left. To top it all off, the hoover had a big accident today. Dyson fell all the way down my steep stairs and dust poofed out all over the place..bits pinged off him and he lay, battered on the bottom step..parts strewn around. Only the pipe suction worked on it before and now..after the accident, he has little energy at all and is virtually on deaths door.

Dyson is just how I feel today. A little battered, had the wind knocked out of my sails but it's okay because I know there will be a replacement one day soon.

Just like my replacement boobs.

Give me strength to get through this week calmly. This is the beginning of the end.

Monday 16th March 2009 - Operation Boob Removal commences!

42. Where am I? 27 days to Operation Boob Removal!

2009-03-03T13:31:00.008Z

I decided to stop pacing around the house trying to fill my day..I decided to make coffee, sit down and get this out of my system.

My last blog was sadder than I intended. I'm okay though. Being at home with my mind is hard work - it needs feeding all the time. I must learn to slow down now or I will face frustration whilst laid up. I am keen to do DIY in the house and I am scared that I won't be able to do much of that after. It even made me think about implants instead but I don't know..it's so close now, I can't change my mind. I also know that after my op I won't be having a gardening extravaganza either and I am a keen gardener. Lots of jobs seem to loom ahead of me in the next few weeks but I can't do them all and I have to think that I will be fine after, that I won't suffer back pain or shoulder weakness. I will make myself good again - it just seems massive at the moment, I want to be normal me but I will be changed me.

It's lashing it down today and the conservatory is just warm enough to hang out comfortably in today. I may have to employ some cosy blanket around the house though for added comfort. It's a wheatbag day coming. I can feel the dull ache building. Getting my daily dose of daylight which brightens my mood even when it is lashing it down outside.

OTHER TOP NEWS..

Boat renovation. I helped hubby with his surf kayak repair project last night - masking up the stripes and revealing the great results just before bedtime. He is pretty amazing really. His blog is Adventures in Kayak Surfing!!! if you are interested. Chop a cheap battered boat up and restore it. Looks GREAT! Looking forward to the launch..camera, flask tea and the beach. About a week to completion.. : )

Life update. We might be getting a stairlift to help Chris look after me for a while and maybe permanently. Cool? Yeah..kinda :)

Nature action. Groped female number one hasn't been seen since her ordeal with many male frogs. Three lots of frogspawn made it though. I hope she is okay out there.

A stunning new female frog is in the pond and had two suitors already. But she is facing an ordeal too. There are about 10 males in our pond..she is the second to brave their mug the woman tactics. Well..update soon.

That's all the news for today.

Back to my seeds and garden plan.

Smile.. : )

41. BRCA Support Group anyone?

2009-02-24T16:48:00.012Z

Its been a couple of weeks since I last posted, believe me, it is not because of lack of things to post, just very busy dealing with the complications of what is my daily life right now and developing the BRCA Umbrella social and support network site for BRCA+ people like myself. My feet haven't really touched the ground since it was born whilst in the background my operation draws ever closer.

Today, I went to a support group session with other BRCA+ people at the Royal Devon & Exeter Hospital, Force Centre (not in any way connected with FORCE USA, just a coincidence of name). I met my first two ladies outside of my family with BRCA+ gene. We didn't chat in depth about ourselves but conveyed our struggle through the system to find information. Both ladies had already had breast cancer and then been diagnosed with their gene mutation but I am ahead in the race at the moment. Anne Searle is a genetic counsellor and conducted the group, gleaning information and experience from us about where the NHS BRCA support system could do with refining. I think that is probably an inadequate word 'refining'..more like to identify the missing gaps in the system - chasms sometimes.

So much in depth discussion happened during the session that I can only summarise that it showed the enormity of being BRCA+ and the multi faceted problem of living with such knowledge with the consequence of its power to effect the rest of your life, your maternal feelings, your health and your entire family across generations.

All ladies there today are facing their BRCA gene and its risks and the implications carried beyond ourselves, all concerned about the next generation, what to do, how to tell family, what surgery to I have, who to talk to..etc. We had all struggled to find our way into that room today but were very thankful to be listened to. Change is coming.

So, the BRCA gene mutation; a missile, an opportunity to blow the chances of breast and ovarian cancer risk out of the water but with so many bloody knobs and buttons to guide the damn thing to a destination of safety. Sometimes I feel like it might go off mid-flight. I don't want to pilot this thing all the time I would like someone else to please take over for a little while.

I wish I could forget - is there a time when I have been free of this thing? Probably but so long ago I can barely remember..oh, hang on..skipping through fields of wheat with my friends on a summers evening - days when I was free, when I was a child.

Sometimes I worry about my sanity, this BRCA thing is just a sliver of my life yet everything hangs on it at the moment but that will pass and life will continue. I just wish everything else wasn't so complicated at the same time. My poor husband came home today unhappier than I have every seen him. His job makes him so tired yet we need it to keep struggling on financially. Being partially disabled he is tired, worn out, mentally at a crossroads about work yet financially under pressure to be there, worried about his knees and the increasing pain he is in these days, looking after me when I need him, keeping our house, keeping things going and in the background the recurring worry about his son and his ex's selfish behaviour. It just feels like too much. We are both tired. I hate to think what this would be like if we had kids to look after too. Life feels very unstable at the moment, I am grateful to be free of worrying about my children too.

I wish I could change things for us, I am trying real hard. I just feel very helpless in my own personal life whilst my campaign in sharing my and other people's BRCA journey continues in positive great leaps and bounds. I hope that someone reading this who is struggling with their own diagnosis, I hope you reach out to others and share, isolation is very hard and life gets in the way of this thing you are trying to fight too. I have realised that my passion is in trying to make it less of a desert, more of a comfy sofa coffee morning place to find answers and share.

BRCA Umbrella - gather, shelter, weather the storm and on a sunny day - go for a walk back into your life and move on.

Tears today, lots of emotion, sadness for my husband and his struggles with everything.

And the clock is ticking..how many weeks now?

40. Operation Boob crunches into 4th gear!

2009-02-11T19:07:00.004Z

Back at the hospital..again. On arrival the car parks were rammed again. I eventually found a space and faced an immense battle with the ticket machine. Being a bit rubbish at having money in my purse because a. I rarely need it and having it makes me buy small bars of chocolate that I don't need! and b. I am just a bit rubbish at being organised in car park change..aways have been. So, armed with a bag of 5ps..(who the hell passed the design on 5ps? they are MINUTE!!) I fed the hungry machine..46 of them..except it would only accept 24 until it ate and spat out the bad 5p and refused to take any more and spat all my money back out. Feeling the eyes and "oh no..she is using 5ps!!" thoughts of the people behind me, I offered for them to go ahead of me. Attempt #2. 21..22..23..24..25..bad 5p..clunk, clunk, clunk, clunk, clunk..x 20 more. If I'd have been on the pier or at a casino I'd have been happy but not in the hospital car park, now late for my appointment and stressed worrying I will get a ticket or clamped. They are building a lot on site and closing access around the grounds = parking nightmare.

So..I am parked as far away from the Primrose Breast Clinic as I can get, outside the maternity entrance - which is a sore poke in the eye from yesterdays appointment.

I make it 15 minutes late. The woman at the reception desk asked me lots of questions to make sure that I am me..including,"what ethnic group are you?".."....ummm....white?" like I might get it wrong. I guess it made me laugh because I am very obviously white, not tanned in any way and thought it was weird security question. Anyway, the second I get to the waiting room and before I sit down a nurse comes and calls me so I go in and meet my surgeon again. I told him off for not being there last week and he would now have to answer all my questions.

So, we covered:

Q. When does he get to eat lunch and pee?
A. After he stopped laughing, he said that he does the mastectomy bit first - removing the tissue and nipple from inside the breast skin and then goes for a cuppa and lunch, maybe. Then flip me over, take the muscle and fat flap and bring it round to the front to make my new boobs, maybe have another break..then complete!

Q. Will I be on a ward or in intensive care straight after my operation?
A. Apparently I am having a room to myself for a whole week with an en-suite bathroom. I was stoked! It is because I will be fairly immobile for the first few days and will need constant care from the nurses which can disturb other patients on the ward, especially in the night.

Q. How long before I can start exercising and stretching my body and arms to build up strength for paddling and kite flying?
A. From week 8, just gentle stretching but not to the point of pain, just to the start of uncomfortable. I have 1kg hand weights picked up for next to nothing in Tescos for such exercises! I should be able to paddle again and fly kites but probably not rock climb. The surgery will remove the whole latissimus dorsi muscle in the back and I will lack the strength to lift my body up..so chin lifts are out too...darn! (ha ha ha ha..)

Q. What pain killers will I be on after the operation and to take home with me?
A. Morphine on demand in hospital and paracetamol and diclofenac to bring home, maybe some opiate based painkillers such as Tramadol if necessary. I don't ever take painkillers, I have a good pain threshold and have never been a pill popper for headaches and period pain so I shouldn't need much.

Q. What if things go wrong after - necrosis, infection etc.
A. He says that once fixed breast reconstruction can be looked at by another method if necessary and wanted.

So, there we go..I feel better for knowing and another appointment is booked two weeks ahead of the operation, just for last minute chat, checks etc.

Ok..so commences the waiting game..the clock is ticking.

39. Pop goes the bubble..our hearts fall down

2009-02-10T20:01:00.003Z

Yep..pop went the smallest of bubbles that contained a remote idea or maybe a hope that I could have children of my own..burst into nothingness. After my meeting with my genetics counsellor today my small glimpse at a potential family has pretty much had the curtains closed on it. The timings of my age, my breast surgery, Chris's 8 year old vasectomy, our inability to actually afford a child at the moment and the problems with freezing embryos all contribute to a very low success rate of actually having a baby in the future. I can't say that I am surprised but I had to look, just one last time before I closed the door on bearing a child of my own. Although I have the option to talk to the University College of London (UCL) to discuss Preimplantation Genetic Diagnosis (PGD) and our situation, I hold little hope for it to be a tangible option for us. So, its back to adoption if we want to in the future, which is always where I have seen my real motherhood role anyway.

My gut instinct was that I was not destined to have children of my own flesh and blood but I agonised over my desire when I was younger, with the wrong man at the wrong time in my life. Now I am with the right man it is the most impossible task ever.

Why drag myself through years more heartache, torment and emotional distress in trying to get to the point of pregnancy by IVF which may only have a 5% chance of success? Its not worth it, not even for the most perfect child in the world. There are so many children out there without loving parents in their lives and maybe one day we can offer a home to one. I have been through enough now.

So, I sat in Tescos car park and listened to a song that took my back some years - to 8th October 2002 when I didn't get in the van to go to the speedway meeting. The day the rest of my life continued whilst my fiances ended. Madonna released 'Die Another Day' that week and it spurred me into living. The words touched a deep nerve today as I sat in the car with the volume turned up - watching the seagulls in the blue sky and people struggling with their bags. In a few weeks..I won't be able to struggle with bags, or much else for a while but my life will go on and I am reminded that I can do good with it.

My life experience so far has made me tougher than I would like to be, more introvert than I would like to be, more anxious than I would like to be. So I choose to be useful, to do good, to help others.

Today I offered myself to help the local BRCA support group run by the hospital and it was welcomed.

I am glad for my life and at the end of the day, survival is key - I am still alive but I have a whole lot of life to fill up now.

I am sadder than I thought I would be but I will just get a hound one day, a loyal, loving, doting dog who I cherish and who I will probably outlive but that's okay.

38. BRCA Umbrella - Social Network for BRCA+ people

2009-02-09T23:29:00.003Z

I stumbled on an excellent, user friendly social networking site, 'Ning' that allows you to set up your very own social network - so I did! I called it BRCA Umbrella so that everyone who finds it or is directed there can come and huddle under the umbrella.

The name..well, I love umbrellas. I have one with dragonflies on it, Mum gave it to me. I have shared umbrellas with people, random people, briefly..sheltering from bad weather, wind and snow. It's amazing how people will reach out to each other with an umbrella yet they wouldn't stop and let you get into their car if it was peeing it down would they? The phenomenon of umbrellas..complete strangers inviting you to share intimate space with them. If you haven't done it, try it..or if you are a BRCA+ lady (or man) and want to share the BRCA Umbrella..follow the link and register - it's free! You can blog, post photos, videos, links, chat, there's a forum and also a lot of fantastic, brave, inspirational and beautiful women to share and guide and hold your hand when you need it.

BRCA Umbrella - bringing BRCA+ people together

37. Bang, bang, bang my head..gently on my keyboard

2009-02-06T15:13:00.009Z

Sometimes..just sometimes you have to wonder if you are actually meant to be here. I do, but just sometimes. It seems that everything I do at the moment conspires against me, in every way. I won't go into huge detail but the job centre are appallingly inefficient, unhelpful and rude. I know they are all under pressure with the amount of people now being out of work but honestly, they all have jobs and its also MY problem. I am currently trying to apply for a job set up just for me and they don't seem to want to let me become employed again! Joy!!

Another minor setback - Uni want to meet with me as they didn't get my qualification information on my application - even though we quadruple checked it before it went out to them. More joy! So I still don't now if I have a place or not.

And finally, to top the last week off I went to meet with my breast surgeon today to after being re-referred back into the system in order to plan my surgery within their 13 week deadlines.

I get there, pay £2.30 for parking and find out as I am checking in that the woman behind me is also seeing my Breast Surgeon at the ame time as me. I checked with her in the waiting room and she was confused too. It turns out that the surgeon isn't even in the hospital and won't be seeing either of us. He had a teaching day booked but no-one thought to tell us. So I was led into see another breast specialist and told to strip down to the waist..then my notes came out, then told that I didn't need to be examined at all and to pop my clothes back on again. Apparently no-one really knew why I was there, other than to make a firm appointment for my breast reconstuction surgery and there was no-one to talk to me about it. I tried not to feel disgusted but I was, I felt let down. I complained that I had driven into the city, paid to park and I wasn't leaving until I had spoken to someone about my operation, physical expectations and my after care plan. They left me sat in the room for 15 minutes alone waiting for them to make something happen.

On exiting the room the other surgeon asked me who my breast care nurse was.."You haven't assigned me one". The surgeon frowned worriedly and shared an "oh my god" moment with the two nurses waiting on his next move and flustered about in various directions trying to get someone to speak to me immediately.

So, I sat in the waiting room again..and waited. Thankfully a lovely nurse (now my breast care nurse) came out and took me into a side room and we briefly discussed how long I would be out of action with a kettle, a shopping trolley, a hoover and a car - likely 1 month no heavy lifting objects or objects above the waist and 2 months for normal daily tasks like kettle, hoovering etc but that was a minimum only. I didn't know this but they are going to take the whole of my latimus dorsi back muscles out..OMG! She told me to prepare myself for that and that physio might be needed, especially if I want to paddle my kayak again. She did say a lady they treated now rides horses again but does feel weaker than she used to.

I realised as we talked that I had so many questions and although I have had a disjointed and rather bumpy journey towards my breast reconstruction surgery so far, a lot of which I have had to push for myself, I am still grateful that I am able to do something about my BRCA1 situation. If you are following my blog and wondering about your own family history, my journey is not the norm, most people are steered through the shortcut route whilst I, like the very day I was born feet first with my umbilical cord wrapped around my neck, chose to go the difficult route. Do not be put off by my journey - just let my discoveries help you think about things you may not have thought about already.

So, to list some things for recollection on Wednesday (when I finally do get to meet my breast surgeon again). This is useful for me and anyone else waiting for their surgery too - I guess there are so many things that you do not think about and wish you had.

Q. Will I get to discuss what is going to happen to me when I get to hospital, my operation and stay in hospital?

Q. Will I have drains in my body after the operation?

Q. Will I need to sleep upright at home?

Q. What will I be able to do and not do and for how long?

Q. When will I be able to live normally again, without fear of tearing scars?

Q. How long will I have to take painkillers?

Q. When will I be able to drive again?

Q. Do I have to have someone empty my drains at home? Will that be my chosen carer (Chris) or visit my GP or what?

Q. What will I need to sleep in whilst in hospital? Especially having scars front and back at the same time - how will they clean my wounds?

Q. How long will I have a catheter after the op?

Q. Will the painkillers give me constipation as they are likely to be opiate based?

Q. If so, can I take other things to counterbalance the effects as exercise will be zilch and drugs will be daily?

Q. When will I be able to wear a bra again?

Q. Will I get an MRI scan before or after my operation?

Q. Will I be in an intensive care unit initially and for how long?

Q. Does the surgeon have a lunch break during my 8 hour operation?

Q. When does he go for a pee?

Q. When do the nurses go for lunch and a pee?

Q. Who will be keeping an eye on me whilst I am under anaesthetic and everyone is eating lunch?

Q. What support is there after my surgery for psychological support, if necessary?

So..that's all for now..I think I might just give them this list to answer. I need to know all these things, is that normal? I dunno.. I am giving my life to them, to the surgical team..and I need to know these things for me. Giving your car to the garage for an MOT, you don't question, but this is my body and my life.

My life..

36. MRI Breast Screening - Surveillance for BRCA

2009-02-02T09:37:00.008Z

Following my recent discovery of the lack of funding and availability for MRI breast screening for women with a high risk breast cancer, I decided to start investigating MRI breast screening..so I wrote to the Health Secretary, Alan Johnson.

"Dear Alan Johnson

I am 35 and have a family history of breast cancer and subsequently diagnosed with the breast and ovarian cancer gene BRCA1. In March I will undergo surgery to remove my healthy breast tissue in order to reduce my risk of cancer from 85% to 1%. This is a huge decision and will effect the rest of my life but it the only one I feel is sensible given the alternative.

The alternative is Mammography - proven to be very ineffective for women under 50 and with the gene mutation I carry, could trigger the very cancer it looks for! I recently spoke to the NHS Breast Screening Programme who stated that an MRI breast screening pilot scheme is being rolled out across the UK this year (2009) to women with a high risk of breast cancer but that it is only available for women over the age of 40.

My Aunt died at 27, my cousin had a double mastectomy at 33 and I am 35. It is known that BRCA1/BRCA2 gene increases the chance of cancer at a much younger age - generally under 50.

I would like clarification on this pilot scheme and hope that I have been misinformed on the age limit. The Government's strategy is to increase cancer detection services and the many BRCA+ women I am in contact with feel they are faced with little choice other than to remove their healthy breasts because there is no MRI funding for them to undergo surveillance instead. This is just one facet of the gene mutation - another is the lack of ovarian cancer screening and whether to have children or not, or HOW to have children.

I would appreciate clear response on this matter.

In Canada it is standard practice for MRI screening surveillance and MRI screening before breast surgery to ensure effective surgery is planned.

Will I have to continue to undergo Mammography x-ray and take the trigger risk and the ineffective results?

We need change - we account for 5% of breast cancer patients and therefore it is a small funding factor. It would make the very difficult decision to remove your breasts less of an option if reliable annual MRI screening was available to women diagnosed BRCA+ from the age of 25.

To summarise:

Q. Is the MRI breast screening pilot scheme for high risk women available to ALL BRCA+ women or just those over the age of 40?

Q. If not, WHEN will it be available to ALL BRCA+ women from 25?"

I will keep this subject posted when I receive a reply. I may need to campaign on this matter - even though it is too late for me to choose MRI surveillance, with my surgery booked for March and currently it is not offered by the NHS.

Watch this space!!!

PS - Further information I discovered - The Government have plans to implement the changes made to the NICE Familial Breast Cancer document (see link below) updated October 2006 "3.26 Currently the surveillance of all women identified as being at high risk is managed at a local level to varying protocols. The NHSBSP offers the opportunity to manage such surveillance to national standards, ensuring women receive a consistent and high quality service. The NHSBSP will take on this surveillance, which CHAPTER 3: DIAGNOSING CANCER EARLIER 47 will include access to MRI scanning as stated in the NICE partial update of the Familial Breast Cancer Guideline (October 2006). It is expected that this new system will be in place from 2009."

Click here for for information about breast screening women under 50 (PDF)

Click here for NICE Familial Breast Cancer - screening information

Click here for Department of Health Cancer Reform Strategy (exerpted above) stating the MRI screening plans

35. Friday blip out - thats blip not blimp!

2009-01-23T11:41:00.010Z

Definately not a blimp out on my favourite foodstuffs - just a mental meltdown. It went all quiet on here for a wee while - been either busy, feeling ill or crying in the past 5 days. Hard work but a lot has happened.

Friday - emotion overload!! Tears, tears and more tears and talking for hours on end. First I spoke to the genetics counsellor after a merry-go-round of calls and getting lost in the new automated voice recognition answering service at Derriford Hospital - OMG!

NHS thingy "Say the name of the person or department you would like to speak to"

Me "Genetics Department"

NHS thingy "I heard 'Gavin Hartmen' - is that right?"

Me "No"

NHS thingy "Say the name of the person or department you would like to speak to"

Me "Genetics Department"

NHS thingy "I heard 'Gavin Hartmen' - is that right?"

Me "No you dumbass - operator"

NHS thingy "sorry, I did not understand, please repeat"

Me "That's because you are a machine goddamn it!!"

NHS thingy "sorry, I did not understand, please repeat or say Operator to be put through to the Operator"

Me "Operator"

Operator "Derriford Switchboard"

Me "Genetics Department please."

Genetics Department "This mailbox is full. Please try later."

Great!! A little internet research reveals that the genetics department number is wrong - even switchboard don't know it! Rubbish!! If I was a time waster I could have some mindless fun just screwing up the automation system for a laugh..

Me "Deafasa Post"

NHS thingy "I heard 'Deaf as a Post' is that right?"

Me "Yes you dumbass!!"

Blimey!!

I did finally speak to my genetics counsellor after speaking to the rudest woman at the MacMillan centre. I was just looking for information about MRIs and explained that I couldn't get hold of Genetics. I tried to explain to her that I just wanted to speak to someone because I didn't know who I should be speaking to. She repeatedly talked over me, non-stop and prevented me from explaining. I reluctantly bit my tongue and got of the phone by basically saying "W H A T E V E R !!" in a polite way, "Yep. Okay. Thanks (for nothing)." Honestly, she was crap! Definately in the wrong line of work. Good job I'm not phoning for emotional support about a dying family member about cancer, but then she wouldn't have known that would she..she didn't let me explain WHAT I was looking for!! Trout!

Upon finally having a sensible conversation with the genetics counsellor I covered a few questions that I had about my upcoming surgery and MRIs.

Q. Will I have an MRI scan before I have my surgery or after? Apparently neither!! I am due for my annual mammogram in the next month or so and I explained that I am feeling anxious that I am not having one. I also explained that if I am having major surgery, would it not make sense to screen me before the surgery in case they find that I am already harbouring breast cancer? She agreed but said that it probably wasn't scheduled and that there is no MRI screening options for breasts at present, although they are fighting to get this for at least people like me. She is going to write to the head radiographer and ask as I am particularly anxious and would like a clean bill of health in the breast department.

When stories like this are posted - its no wonder I am questioning. The news seems to be tracking my life story at the moment! Damn it!

http://uk.news.yahoo.com/5/20090128/twl-tests-pose-extra-cancer-risk-3fd0ae9.html

Q. This link connects to my next question - is there MRI screening for my mother - aged 55 who has BRCA1 (obviously) and is not having preventative breast surgery? I explained that my mum currently,although positive for BRCA1, had no screening programme other than mammogram once every 3 years and never spoken to anyone from the NHS about her gene mutation since finding out. On enquiring (after our chats) she had been told that she was too old (over 50) and that MRI breast screening had no funding so wasn't an option! This means mammogram only and the link above shows the catch 22 situation faced by BRCA+ women.

The genetics counsellor nurse is always calm - she is lovely, softly spoken and sure of her words. I felt better for venting my frustrations. She was very worried that my mother appears to have been left out of the BRCA care regime (if there is such a thing!) and we discussed the need for a standard information pack or phone numbers - although everyone is different, everyone needs to look at all the options - not some of them. It is this that has caused me to stall, go back ten paces, go forward again.

So it is all in hand - she is finding out about everything - my mum's care routine, MRI screening and arranging a date for my next counsel meeting with her to discuss embryo freezing/screening.

I cried a lot more that day - about other worries, out came the past box in my head and my heart and a lot of talking with hubby commenced that evening on our way to stay with friends in Southampton. I can only say that I looked less than appealing and more like a frog than my usual self upon arrival. I explained, just in case they thought I had come down with some awful lurgy or had a pepper spray incident with the police on the way there!!

The rest of the weekend was great - social, fun and then I felt ill..and then better and now back to normal. Back on track - I think!

Time to go and get some milk - before Chris gets back. It will be cuppa and hug time!

Hooray!

34. The future is firmer

2009-01-19T20:20:00.004Z

I woke early and put on my gorgeous new red cord coat (I love it!!) and teal scarf..all positive and vibrant. I had clothes on too by the way - in case you were wondering for a moment there. I arrived at the doctors surgery at 8.30am ready for my 8.40am appointment..which was actually meant to be 8.20am!! WHAT?! Bugger..I even wrote it on my calendar straight after booking it - 8.40am. I even checked this when I came home. Anway..the receptionist said not to worry because the lady behind me had now gone in early so it was fine..but I did worry, I must have screwed up the whole day for my poor doctor. Arse.

I apologised to him profusely - Christmas and New Year had gone between booking and arriving and I was all over the shop during that time. It helps that he is an young, attractive man because otherwise I would be a bit fed up with myself for being late when I thought I was early. Instead I enjoyed the view and chatted openly about what was coming up and my dismay at finding out that my mother has slipped through the BRCA+ care net. She is only getting screened every 3 years and hasn't talked to anyone since finding out about her own DNA results. They have just left her behind. I am livid and I tell Dr Harris about this. He gave me copies of my letters to send to her doctor and get her back into some good care routine. I am gobsmacked that mum is left to fight her way back into the system!

When I've expressed my concerns about that, we talk about the letter he'd received from my breast surgeon, Mr Drabble about my 're-referral'. This means that I can now actually book the pencilled in date planned for 30th March 2009 for my surgery which was previously outside of the 13 week deadline the government have set for the NHS. C R A Z Y ! ! !

I guess most people just get sick and get dealt with. For people like me, who have a genetic condition and need to plan to have surgery..everything is delayed and nothing is solid or in place until 13 weeks before. Basically, I stressed how much I hate hospitals to my surgeon, told him I would rather have it done when I know my husband will be around to look after me while I convalesce. With his being a teacher, he has little time off and can only get 3 days to look after me...when I need at least 2-3 weeks immediately after. So we are 'planning' to have my surgery done around easter school holidays when Chris will be home. This meant that in October, March was too far away and was outside of the 13 week deadline!! So..(take a deep breath)...they write a letter to my doctor telling him to write to me to get me to book an appointment with them so that I can go back to Dr Drabble and book my surgery date in....!!! How stupid is that?

Dr Harris shared my opinion..but all said and done, he was onboard with the plan which is a result quite frankly. The NHS normally deal with people who are sick..not deal with people who will probably get sick eventually and need major surgery to prevent them doing so. Its strange, but because I am not sick, I feel like I am inconveniencing everyone around me and its planning it to fit in with them and not just for me. If I was poorly with cancer, everyone would just reach out and deal with it but this is planned surgery - not the norm. The NHS doesn't allow for people like me in their rules and regulations but the wonderful staff are bending them to accommodate me. That is lovely.

Oh...AND we talked about fertility and the recent news report. He looked a little edgy about it, telling me it was fairly new but that it was definately something to look into. He had referred me to Dr Attacheny (or something like that) who is the guy I spoke to over Christmas. Lovely on the phone and I am quite excited about meeting him in the flesh. I liked Dr Frappel but he was clinical (lol) and his secretary kinda sucked at her job!!

Ok..epic writeup over. Back with some more soon..keep you posted x

33. Breast cancer symptoms - what do they actually look like?

2009-01-15T13:25:00.014Z

This is so stupid. I can't quite believe this dawned on me today and that it is probably partly denial that I haven't really looked into it until now. Those who have experienced breast cancer first hand will know what breast cancer actually looks or feels like, some may not. Finding a breast lump is every woman's nightmare but what does a lump actually look or feel like? I found a lump (more like a hardened area under the skin) at 27 but it was inside my breast tissue to the side (armpit side). Thankfully it was nothing and hopefully it will stay that way but today's thought has led me to delve into the wonderful Internet to find out some information about real visual images of breast cancer symptoms.

Why am I talking about this when I am so close to getting rid of my own 'original' boobs? Well, probably for you, maybe all this might save just one person and that's worth the effort. I stumbled upon one particular image that shocked the living crap out of me. I think the photo I found was of a woman living in a third world country where breast awareness and screening are probably at a minimum. Women lucky enough to be in a wealthy country (erm..might have to revise that bit considering the global economy right now!) have breast screening available to them and doctors who are in the know.

From here on I do not wish to offend or distress anyone in my post today but this is more of an 'ugly truth exposure blog entry' and in doing so I admit my own ignorance of how bad breast cancer can actually get and what symptoms actually look like for real - not the pretty leaflet pictures you get telling you to look for this or that.

Q. Did you know that the majority of breast lumps found (approx 80% of them) are from non-cancerous causes? This is great news but something most of us are not aware of.

Q. Did you know that men can get breast cancer? Male breast cancer

Q. How many types of breast cancer do you know about?

Ductal Carcinoma in Situ (DCIS)
Infiltrating Ductal Carcinoma (IDC)
Infiltrating Lobular Carcinoma (ILC)
Lobular Carcinoma in Situ (LCIS)

Rare cases of breast cancer are:

Inflammatory Breast Cancer
Medullary Carcinoma
Metaplastic Carcinoma
Mucinous Carcinoma
Paget's Disease
Papillary Carcinoma
Phyllodes Tumours
Tubular Carcinoma

Q. Do you know what you are looking for when you are checking for breast abnormalities such as; 'puckering' 'orange peel' 'inverted nipple' 'breast lump' 'nipple discharge' 'indentation' 'retraction of the nipple'?

WARNING - the following link will show you images what breast cancer symptoms can look like.. hang on a minute..

just one more WARNING!! before you click on the link..

At the bottom of the linked page there is a further link to 'Advanced Stages' which show very explicit images of advanced breast cancer so please read warning before clicking.

Real photos of Breast Cancer symptoms

So get breast aware and check regularly, monthly, straight after your period. Get to know them and get breast familiar.

32. The BRCA gene free babe is born! Happy Birthday!

2009-01-13T11:28:00.005Z

At last..she has arrived! The first British BRCA gene screened baby is born!! The baby of hope for childless BRCA+ couples.

See full article here -> http://www.dailymail.co.uk/health/article-1110244/Britains-cancer-free-designer-baby-born-screened-deadly-gene.html

Happy Birthday to you!! Welcome to the world.

31. Fresh as a daisy

2009-01-13T08:50:00.002Z

..almost. Its amazing what a bath can do for you.

Its also amazing what support can do for you. Thank you to all of you who have passed comment and offered kind words in the last 24 hours - its lovely to know you are out there. You are the people who will help me reach my surgery mentally in one piece. As predicted though, 24 hours has passed and I don't feel like I'm possessed by the hormone devil anymore!

Phew..lets get back to jolly.

Not to go too far off subject, thought I'd mention that I have been posting to Facebook groups about the BRCA+ parents with children approaching 18 subject. For those with a Facebook account, follow these links - those without one, sign up its free and there is a wealth of support and information hiding in the social networking site.

http://www.facebook.com/profile.php?id=1300676972&ref=name#/topic.php?uid=2373995702&topic=7168

Will post again on Friday afternoon after my eeeeeek 8.40am appointment at the docs.

Take care y'all

MWAH

Oh happy Tuesdaaaaay...oh happy Tuesdaaay..

30. The Monday pit

2009-01-12T10:37:00.003Z

I'm feeling a little low today. Every passing month reminds me that I have functioning ovaries and today I hate them. They punch me from the inside to remind me - they shout really loud at me! Pain, nausea, tired, crippling twinges, grumpy miserable cow. Whilst I can't wait to be free of the negative emotional grip they hold over me on a monthly basis, I am glad they appear to look healthy and okay for now. This morning the BBC news was talking about screening embryos for unborn babies with autism and throwing the issue of screening embryos into the limelight again. I wanted to get up and get on with me day today, yet here I am...blogging about embryos and children again..( see blog entries 23. Freezing eggs and 27. Spin, spin, spin my brain..gently down the stream)

I think I just want to sit in front of the doctor this Friday and ask him what the hell I do now about my ovaries and embryos and surgery. I have missed my slot to just have them out because I am looking at the embryo screening options. If the embryo freezing is not free to us (link will give you NHS costs), we can't even comprehend borrowing the money for it, it will cripple us financially. Sometimes I think it would be easier for someone to turn around and tell me that I just can't have any children rather than this emotional and controversial dilemma I face in looking at trying to have them...maybe...one day...after my surgery is over.

I looked at my counter today..its below 80 days now. Shit! Mild panic but its ok though, I am starting to plan out the things I need for hospital, the things I need done before I go in and lose the use of my arms for a while. Will I need a nightie? I don't own any and I will have stitches that need dressing and sorting out both front and back so what the hell will I wear?? Split front AND back gown? Front and back bum flash on the way to the loo - excellent!! I hope I get a room on my own..is that likely? I have no idea.

One thing I do know is that I feel low today..its Monday, I feel weepy, stupid and vulnerable. I'll stop there though because I can't beat myself up over nothing - it won't last..I'm used to it and I can't wait for it to be over. No more periods, no more.

My husband will sigh a big relief, I have no idea how he puts up with me.

I loathe negativity - its so destructive.

Make it stop now.

Make it stop.

29. Welcome to 2009!

2009-01-07T10:48:00.005Z

Happy New Year to you!

My news so far this year...

University stuff arrived - avidly studying and applying.
Battle of wills and rights with stepson's mother - stepson won.
Telling Job Centre that I don't need them and their negativity no more - smiling about focus in life!
Great Bird Sadness:

Attempting to rescue an oyster catcher with a broken wing near Dawlish Warren - bless it..vet put him to sleep.
Watching my cat maul to death my favourite bird in the garden - a Goldcrest. I'm livid but thats

nature.
Oh..and its very cold!

28. My own personal heroes - Part I

2008-12-30T20:43:00.018Z

I think, before the year is out that I should dedicate a page to highlight a few very important people in my life..those that are there when I need them, when I have been sad, lonely, angry about all this cancer gene thing.

These people are special and I am blessed to have them in my life. There will be others along the way and those that I haven't sourced pictures for just yet.

Appearing in no particular order..

Chris Jones - My wonderful husband!

How I came to marry such a fantastic man is beyond me. I guess he was sent to look after me. I do believe that we were fated to be together and I was told (by a spooky friend) that I would meet him. I knew that he was the one I was meant to be with and all he has ever done is love me..regardless of my past, my present or the future. He is just always there and I sees me in all my guises..and he knows me.

Sometimes I just sit and smile that I am so lucky. I adore him!! Without him by my side, I am not sure I would be where I am today or be as mentally stable as I am through all of this. He is my rock.

Carol Crane - My Mum

Always calm, just takes everything in her stride. She has never faltered in front of me I don't think, not even when she went through her own breast cancer. She has been through so much grief losing her sisters to cancer, losing her father, supporting her mother through cancer and now caring for her into her final years. I know that when I need her she is there for me 24/7.

She is just kind and lovely.. I worry that I burden her with my woes sometimes.

I love you Mum - you are just gorgeous! x

My Jones In-Laws

Endless support and understanding from them both. Most people don't like their in-laws - mine are fantastic! Lori has the biggest heart ever and treats me like her own daughter. I am lucky to have all of them. Bob is strong and kind of heart.

I love you both very much x

My Friend - Sam Haydock

An endless source of humour and honesty. She is beautiful. I miss working with you Sam
(and Sue). Both saw me go through the initial panic of finding out about my gene thing..when Mum was going through her testing. I think this was the worst. I cried more often than not when talking about it all. They were both there for me, talking to me, calming me.

A true friend. Big fat hugs x

And last on this Part I page of heroes goes to..

Lisa Roy - BRCA2+

Lisa found me looking for info on Facebook and contacted me. She started a blog too and you'll see Lisa's blog, My Choce in my blog following list telling her own story after discovering she was BRCA2+. She's sent me messages of positive thought when I have had a blip (as too has Karen McCluskey - also BRCA2+).

She's shared intimate photos of her breast surgery and been strong throughout her journey. What else can we do but just get on with it? Sharing my own journey with others like me has made things easier to cope with, easier to understand and easier to reach out to others.

Thank you Lisa..you are a gem. Enjoy your new year, remember it always! Your first with your noobs and peace of mind. Enjoy and stay in touch x

27. Spin..spin..spin my brain, gently down the stream..

2008-12-29T14:20:00.007Z

Yep, brain spinning. Why? The lovely doctor (gynae) has just called me, as promised, to talk about the option of freezing eggs or embryos. He was lovely about everything and above all else, above all his 'targets' set by the government, he was concerned that I make the right choice and in my own time, not in the 13 week deadline set by Labour! He asked me to think about it carefully, to talk through things with Chris and go and see my GP about the options.

So the upshot is that I CAN have my eggs frozen but it is less successful than embryo freezing and I CAN have embryos frozen, taking sperm from Chris (explained about the snip) and starting them off, bung them in the freezer for if/when we fancy putting a bun in the oven. I know its not that simple but just knowing that it is possible and I will still have a womb, that I CAN still have children beyond my surgery.

I know that some people will be enraged at the thought of messing with nature, about screening embryos and rejecting those with the BRCA1 gene mutation that I carry in my DNA. Those people who think it is wrong I would like to ask them if they have ever had an operation or got sick and been healed? That's also messing with nature, helping nature and not leaving it to make its own natural selection. This is not designer baby stuff, not choosing a girl or boy and tweaking blue or brown eyes, this is just choosing the best of the bunch for a healthy life. It is in fact less traumatic and morally wrong than screening for down syndrome and aborting a child showing positive results for the condition.

Quite frankly, laying it all out on the table, I am doing the NHS a favour by either not having children or screening those I might have - my gene mutation is costing them thousands of pounds as it is - imagine if there were many more of me..more gene screening, more operations, more embryo freezing.

I am feeling content that I have options. I am still a little nervous about delaying my ovary removal but I'm sure it will be fine.

For those that think I should just not have kids at all..ask yourself why you are on the planet and what you feel your purpose is.

I think we are all here to survive, to continue..everything on the planet strives to continue..to exist.

I've been fighting that and I just want to put it in a box for another day rather than make a decision now. I have been hurried into having a family by most of the health professionals I have met along my BRCA1 gene journey and I can honestly say that I am glad I didn't listen to them. I channelled my own path through the sea of "hurry hurry Leigh-ann, it will help protect you against cancer". No..no it won't, my mum had me and she still got cancer. The pressure and ticking of time and life hiccups have been immense.

I am free to think now.

Thank you Dr Charrier..thank you.

26. Back home and happy

2008-12-27T10:51:00.006Z

After all my scroogeness and "I hate Christmas" my family and in-laws made it just great.

We were relatively poor this Christmas due to my being out of work and it was quite hard.
It made me truly appreciate the wonderful gifts we both received and the thought that had gone into the surprises. I thoroughly recommend stripping away the materialistic Christmas that usually engulfs us all and take £100 and see what you can do with it. It was tough but we had to spread it around. Most of it went on my stepson and it was worth it - he was overjoyed with his gifts and is excited about coming to play with all his new bits. I made cheese and bacon twists for a friend (and shared out the rest!), donated an old digital camera, gave a money tree in a happy pot and a pot of jelly beans as some gifts. I think I spent my time realising how much I love everyone around me. A cold sunny walk to a hill fort on Christmas day was just what I needed too.

Right now I'm sat next to our bedroom open fire keeping warm because the damned boiler decided to throw a fit after Chris bled the air out of the radiators today. It is 2 degrees outside and we live in an old Victorian granite cottage...brrrrrrrr....the boiler people aren't open until tomorrow so we are snugged up here with the moggits and the tv. Hooray for log fires!!

Looking forward to seeing my Dad in March. He said he will be over in time for my operation - which is nice to know..I won't have seen him for 9 months by then. I think he is worried about my operation but I told him I will be fine..and it would be great to see him.

Anyway, not a lot of boob or ooph op chat today, just a happy but chilly Christmas. Hoping you all had a great one.

Only 1 mince pie and a third of a bottle of Baileys to go..then its all good eating again. My body doesn't like me at Christmas, I eat too many treats and luxury stuff and it is crying out for veggies and fruit..I can hear it screaming at me.

Detox and Wii Fit frenzy coming soon!

25. Great news!!!

2008-12-23T09:31:00.002Z

I am not feeling crazy anymore..not that I was but just in case anyone out there was a little worried about me I'm just fine. This is one of the reasons I want to get rid of my darn reproductive system - its not my friend in any way and makes me irrational and far to contemplative for my (or my husband's) liking.

Time to relax today - going to visit a travelling friend today - go and be silly and let my mind free for a while. Nice..off to make soup for lunch first and get dressed. I am sitting here in my monsters inc. dressing gown still and its 9.30am! Shocking!

Wishing you all an excellent festive break..hope its not too full of mince pies and cream. I've had enough for everyone and need to sort that out in the new year. Hello Wii Fit...here I come hardcore stylee!!

:)

24. STOP!!! ........carry on..

2008-12-22T15:31:00.002Z

Am I going mad? I hope not. I have spent so long on the phone today speaking to every person that person diverted me to. I have 8 names and telephone numbers on the piece of paper in front of me. A couple of them, Sarah and Janet in particular, asked me if I had had counselling as the surgery I was due to undergo was life altering, especially the ovary removal. I explained that I had but that I didn't really feel I had been given all the avenues to investigate. Some people are good at research, others aren't..they expect the NHS to help them. I have had to find out these things for myself and no-one actually knows if freezing my eggs is an option...yet. Sarah has managed to speak to someone in the fertility suite and one of the specialists is going to call me on Monday.

What does this mean? It means that I will now have to put off my oophorectomy surgery. If my parents are reading this they may well be jumping for joy. What I feel is glad that I found out now and not after. I just need to know that I can revisit my feelings about children when I am on the other side of this crazy journey, when I am not anxious.

What I am anxious about is putting off my surgery. I have this stupid fear that I need to get rid of my ovaries soon though. Can I still have a baby without ovaries? Do I need them to make the baby grow? I haven't got a clue..this may not be possible and if it means that someone else would have to have the baby for me then I may as well just forget about it now because that is just not something I want to look at.

Why did it all get so much MORE complicated now? I don't know but I feel happier now and like I have exercised a demon of mine.

Maybe my little New Zealand dream will come true..outdoors, fresh air, a sheep or two (not for eating!!), the beach..maybe a family where its worth growing up. Maybe.

23. Freezing eggs

2008-12-22T11:52:00.003Z

As I have said before, I feel like my life timing has conspired against me every step of the way in my desire to have children without hideous complication. It is now something I just don't feel I can be bothered with in life now.. I gave in to the fight on this one, but maybe only postponed for another day. What my mother made me realise on the phone last night is that there is still a chance that I might be able to have children, that the recent news about screening embryos (whether you agree with it or not) is an option for me.

Maybe I can freeze my eggs before I have them chopped out?

Has this been offered to me? No. Guess what I am doing now - finding out. If this is an option and it hasn't been mentioned or offered to me during my counselling in preparation for surgery, is this from lack of knowledge by the people leading me through all this or is it just not available? If I had cancer now, before I went through chemo, this would be offered to me.

I think I panicked yesterday because this is final..what I am doing is final - no ovaries - no children. I will keep you posted on this and I will find out. Imagine if I could find a happy, non-cancer worry place in my future where I had the energy to try. Chris says he would try if I wanted to. This makes the whole deal a little less 'final'.

If someone is strong and says they don't want something, shouldn't you throw all the options available to them to see if they bite? If they don't then they are sure. Because I entered the system with fear for my future children and had convinced myself that I NEVER want children because I can't deal with the consequences, they just accepted it, they never challenged me about it once. Am I that convincing? Maybe I am angry at myself but if I hadn't been so strong I would have faltered on the way, been desperate..this has been my coping strategy. Look what science has done..it has introduced a mutated gene free chink of hope. I am not ashamed to turn about face on this - I don't want to make a mistake. I want to be free of worry and then I want to see if I really don't want children for the right reasons.

Honestly, some days I wonder if it would just be easier to get cancer and just deal with it. Those who have cancer wish they had had the knowledge I do. I'm not sure that this is any fence to hang over admiring the view and wishing it was yours and not your neighbours. I think we both worry we could die, both struggle to get through days, both face operations, drugs, children, life.

I admit that the knowledge I have gives me a small upper hand over cancer but it is not a definite that I will get it - even with my gene mutation. There is still a 15% chance that I won't yet I make decisions based on the odds which brings a lot of emotional dilemmas, which is why I am sharing my story with you. What my personal journey has revealed is that although there is knowledge, the journey has only been walked by the few with the knowledge and the system to support those who do and who will again, is protracted and convoluted.

Maybe this blog of mine will help others in their own BRCA+ journey and even if it is just one person, all this typing and thinking and sharing will have been worth it.

22. Take a deep breath

2008-12-22T10:11:00.005Z

..and relax. I am trying.

I bare resemblance to a frog this morning. My eyes are puffy and sore, tired but not green or slimy. After a difficult day yesterday I spent an hour in the bath and felt very, very alone. I realised that everyone I have met that is BRCA+ is not like me. Not one person.

I called my mum who is not one for having deep conversations and would rather not 'get morbid' but I think I made her see how much I needed to talk to her. I asked about her cancer, which just happened - lump found, cut it out, radiation - sorted. This is bizarre but thats the way she deals with things. She tells me I have too much knowledge and that too much knowledge is dangerous. I agree to an extent, but then too much knowledge will cure cancer one day - science will break it down to each little cell, atom - pull it apart and test is to destruction..with masses of knowledge. Knowledge is power. What I am doing is knowing my enemy so I can fight it. Too much knowledge has also made me slightly OCD (yes, I am slightly damaged mentally..) because I am a hand washer. I admit to the world (well, any readers out there) that I have phobias that are control based but it is mild and I keep it in check. Living all these years with the unknown have made me try and control my world a little and I know it is all connected to the BRCA journey, grieving, moving away from everyone I love..and lots of other things..all mixed up in a cauldron of worry. And today's recipe will make a lovely condition called OCD...taddaaaaa!! Magic.

So yesterday was tough. I cried for about 2 hours in total and I am paying for it today. What came out of my day of torment was the thought about the next generation of BRCA+s being born or who have already been born out there. They are blessed with childhood right now, ignorant in their wishes for Christmas, their birthdays, their tree climbing (do children still do this??) - innocent children. They don't know yet but at 18 years old they can find out, if they want to. In reality they will probably not realise the impact this knowledge could have on their lives. Teenage life, partying, having fun, growing up, life will get in the way and it will be blotted out as a future worry for most.

One day they will meet someone special..that's when it will become a reality.

Will their parents let them just carry on without a care? Will they pressure them to investigate? There is so much connected with the knowledge..the cursed knowledge.

This whole embryo screening thing has stirred things up and I need a new blog poll.

21. The link of hope - embryo screening and the BRCA+ reality

2008-12-20T14:16:00.006Z

Warning!! Controversial blog post going on here. I have been a realist on this whole thing, this BRCA+ thing.

If you are here because you have just found out about your own BRCA+ condition then I hope this post won't frighten you too much but it also lists the things that BRCA+ person may have to consider. For those lucky enough to have had children before knowing about their gene mutation the news today is fantastic, it gives hope for your children and their choices if they too are BRCA+.

It took me years to go through all these stages, decisions, thoughts. I had to list them all. This news story has rocked my foundations. I was steady, heading down my chosen path with unwavering thoughts.. and then this big monster jumped out in front of me. What do I do..what do I do?!! Think, thats what..think. So I blogged and thought and this is the result. It may seem quite angry but this blog is part of my self therapy, helping me vent, helping me cope. I hope it is of some use to my readers too.

This morning's BBC News report came a couple of years too late for me. Some of you (like my parents) might think this news is fantastic. I have spent so long conditioning myself to the prospect of living without children that this news just sent me into a spin. I just have to remember that it wasn't possible for me when I was ready, when I wanted a family - neither was my life ready.

Here's the BBC News link http://news.bbc.co.uk/1/hi/health/7792318.stm

I've spent a good chunk of today thinking about this. There have been times that I've welled up with tears, tried to talk to Chris, tried to understand why I feel so swung off kilter by it. So I put it into perspective:

The couple have screened their embryos because the FATHER is BRCA1+, not the mother. She is 27 years old and probably has the drive and desire to have babies. I did when I was 27..and years before that. The FATHER has the BRCA1 gene - what does this mean? It means that he doesn't have the same dilemmas faced by a woman with BRCA1. He doesn't have breasts and he doesn't have ovaries. Would he be having children if time was running out for him and he had the same life threatening risk and options which would take years to sort out? Can't be answered that one I'm afraid.

This is the black and white, consolidated reality in finding out about BRCA gene mutations :-

Got your Family history of breast cancer confirmed - investigate BRCA gene mutation..... ->

Age 30 - worried about family history. The NHS will not screen a woman until she is at least 30 years old. Hopefully things will change in the next few years as they learn more about genetic breast cancer. As they realise BRCA1 and BRCA2 can trigger cancer in much younger women, they may screen more women at a younger age. For me, I was 27 because I shouted loud but really it is not an option until you are 30 with a big family history. At 30 you have about 5 years of prime egg producing time left before things start to trail off towards menopause land. Stay calm - there are people out there who understand, who will talk and who have information for you. www.breastcancergenetics.co.uk is the site for information if you aren't getting any or can't find any and they run a helpline service open 24/7 365 days a year. Just pick up the phone and call them.

Age 32 - you are BRCA+. It takes 1-2 years to go through counselling in preparation for genetic testing results and to get DNA tested and results returned. Now you are 32 and you are BRCA+ but do you have a partner? Do you need to find one? How many years do you have to sort out the right man with so much else to worry about now that you have found out you are BRCA+? You need to think now..about you and what you want, how you are going to deal with this and what are you going to do next. There are options to consider:

A. Do you just want to investigate IVF and embryo screening programme? This will need counselling and probably a 1-2 year process to get to pregnancy if successful. Beyond children, you still have the gene and you still need to make decisions about your life.

B. Do you put faith into action and just go for raw baby making? There's a 50/50 chance of passing on the gene to the baby, whether boy or girl. The screening option will give your children options in the future if they are BRCA+.

C. Do you want surgery to remove your breasts and remove your breast cancer risk? If you want breast removal surgery it will take about 1 year to go through various counselling sessions to make sure that you are able to deal with this. For me its taken 2 years to get through the NHS system to the point of surgery date from the initial counselling after deciding to get tested for BRCA1.

D. Do you want surgery to remove your ovaries, go into menopause early and not have children? I was counselled heavily on this as it is a major decision. It is something I spent many years thinking about before I knew my my results. This is not to be taken lightly and you need to search the very bottom of your soul to decide this.

E. Do you ignore everything and just carry on with your life. Some people choose this but those people aren't here reading this and they wouldn't have taken the genetic test in the first place so E really isn't an option.

I hope that my BRCA+ sisters (and brothers) out there can push the awareness of this condition out there. It is not some random rare condition - it can be bred, increased - it needs to be faced head on. The impact on the NHS and people needing screening could increase as more people investigate their family history and demand testing. What if they do? The NHS need funding to support this cause.

I have decided to research as many personal BRCA+ blogs as possible and gather them together in one place. Sharing mine and others' stories will give those seeking support and information something extra, personal stuff that can't be handed out in a leaflet. This is a very personal condition, its not black and white at all. It involves many choices and can feel like someone put the fast forward button on your life. There are so many facets to consider and for some it will be overwhelming. I found the loneliness of my situation and worries quite hard and there was no-one out there to share it with or to learn from. I had to hunt long and hard to find people to share this with and it is only now at the point where I have made all my decisions that I have found them.

Thank you for Facebook and the opportunity it has given me to touch base with others who have BRCA+ gene mutations. I have made friends with some fantastic ladies. Together we will support each other. We are the foundations of the support system that is currently so disjointed in the NHS today. The next generation will benefit from the choices made by the women who face this today. We are the seeds.

I choose life.
I will not be broken.
I'm rock 'ard me.

I am here now, living, choosing and I am not going to die of breast or ovarian cancer, not if I can help it!

Not on your nelly.

Ok...blog rant over...and out.

20. More choice about music

2008-12-20T11:15:00.005Z

...for you readers! See right at the bottom of the page: I found Billy Ocean - SO 'feel good' and memorable I couldn't resist and Bob Marley.

Enjoy!!

19. Restylin' and going to a private hospital!

2008-12-19T20:42:00.003Z

So..I thought I'd make my eyes bleed with a heavy internet day - sick of the template so I thought I'd go spotty to match my complexion today. I was going to add a great tune to my blog that reminded me of my Dad - Bob Marley, Three Little Birds. I grew up with reggae music in the background of my life and I recall lots of ear bleeding Billy Ocean, "When the Going Gets Tough" (OMG Dad!). Anyway, I found another tune that is hugely important.. Space Raiders, "Laid Back" which played me into one of the hardest things I ever did before all of this BRCA malarky.. cremate my ex.

Had a bit of blip today too, probably the time of year, the music and my monthly cycle combined. The hospital rang to say that they are having trouble trying to get me a date for operation within their deadlines. The pressure for the NHS to perform is huge and I try not to give them a hard time. My stern attitude must have kicked that secretary into action (thank you hormones - use them while you can Leigh-ann). She was very nice, Janet, she told me I could go to the Torquay NHS or Mount Stuart private hospital. Erm...let me think a moment....erm the PRIVATE HOSPITAL PLEASE!! I felt a little safer in the thought that I would be one of only a few...not one of the many. Its quite sad that I would rather not go to the NHS because now I have a choice. I think the lady understood though and told me to Google Ramsay Health..so I did. It looks nice, small and nice and I will be in and out again in a day, maybe an overnight but probably not so its not big issue really.

I feel like I can relax a bit more now in time for Christmas..although I did cry earlier (stupid hormones again). I know there is a small part of me that is still sad at not having children but I will not let it consume me because, quite frankly, this is the best thing I can do for my health, both physical and mental.

18. Operation Ovary - When?

2008-12-17T09:39:00.002Z

Hope this posts - having a very intermittent internet day today. Very odd indeed! Probably all the last minute Christmas shoppers online damn them!!

The very useless secretary of Mr Frappell (my ovary removing surgeon) finally called me back last week to tell me that she still didn't have a date for my operation and that she had to now put me on the waiting list. So what have I been doing for the last 6 weeks? Sitting on her desk? I kicked off a little and demanded that I get my date as soon as possible and reminded her about my March boob op. Why am I not already on a patient waiting list? I cannot understand it. The rules say that I have to be completed in 18 weeks which means she has until March which is just not gonna work. She tells me that she should have a date by the end of this week.

Today is Thursday..6 days have passed since we last spoke and not trusting that she would call me with a date, I called her. Guess what..NO DATE YET! She told me again that it would be some time in the middle of January, probably. I thought it would be nice to have some notice so I asked her how much notice I would get as it was now only a week until Christmas and I would likely not hear from her again until the New Year, to which she retorted:

"How much notice do you need?"

Excuse me? You can probably tell this woman doesn't enjoy her work and probably doesn't have to deal with demanding people like me everyday. I am peed off today as it is, my stupid womb is killing me and I truly want the thing shut down and stop working altogether. Today is not a day to be shirty with me, so I pretty much kept myself to myself today - in case I upset someone. I was nice to her, polite in a stern kind of way if you know what I mean.

I noticed her tone change slightly after she realised how rude she'd been.

"..erm..I have to give 3 weeks statutory notice anyway. There are two ladies waiting as well as you and I am still waiting for dates, I'm sorry I can't make it happen any quicker, we are waiting for management to make decisions about the extra operation slots list."

Hello lady!! I am not a nagging customer in a huge queue at Argos waiting for a fondue set to get picked..

"Item number 987, Ovary Removal Operation - ready for collection at Desk A now please ..bing bong.. Item number 987, Ovary Removal Operation - ready for collection at Desk A now please.."

Lets just hope the darn things don't mess up before she gets round to pushing this forward for me. I bet the other ladies aren't waiting to have their boobs scooped out straight afterwards..I would like some recovery time if thats not too much trouble!

So, I feel like I'm sitting on the lonely luggage conveyor belt with two other luggage shaped ladies waiting to be noticed, to be collected..

..going around again..through the flaps.. ..squeak squeak.. ..and out again.. ..squeak, squeak.. ..through the flaps.. .. squeak squeak.. ..and out again.. squeak squeak squeak..

17. The future's SO bright I gotta wear shades..

2008-12-17T09:19:00.003Z

Timing is everything.

It makes comedy funny or not funny.
It cooks a meal to perfection or disaster.
It makes you early or late for an appointment.

Planning helps you beat time, to master time - to be in charge.

So here I am, planning - taking charge.

I have decided to go to university, the timing couldn't be more perfect if it tried. I do actually feel that the timings of everything in my life recently; redundancy, operations, work opportunity with the dearest Liz, family support..all timings have converged at this point - the point where I think beyond my high cancer risk life, my new future.

Life. Funny - I tried to think beyond before but it was all focused on now, the immediate future but now I have life plans. My horizon is expanding (I do hope that Dani in US is feeling this now, above her painkiller haze).

Things have happened recently that have forced me to think about where I am going. This is it, a new future. I sat with Chris and watched the clouds turn pink and orange as the sun set, watched the stars get brighter - watched the rotation of the earth as they moved across the sky. We talked about where we are going and I can almost feel the New Zealand grass under my feet. I will post some more on the subject of moving to another country with my genetic condition - it may cause a bit of a stir one day - another battle to fight but I will cross that bridge when I come to it.

The washing machine is on, rumbling away down in the kitchen alongside his friend, the dishwasher, who is also swishing along next door. I'm thinking about a cup of tea right now. A nice hot cuppa and some internet research..maybe a spot of bird watching over lunch later in the conservatory and then whisked away in the Jimster (Suzuki Jimny to you lot) to Teignmouth to see my stepson for the last time before Boxing Day (the 5th year in a row for me, the 9th for Chris).

Must get to the post office too - I am sooo crap! Its probably growing up with the internet that has done it you know, I lived without a computer once, now can't live without one - its all instant! My mother will never understand that the post office is just something I don't really do, I write emails not letters (and blogs).

16. A question for you and my opportunity

2008-12-12T13:00:00.006Z

I'm following a blog called My Journey by Danielle Chase - she is in surgery right now in the US, maybe out of surgery. She has been through the mill with her emotions before her breast reconstruction. I know that come nearer the date I will start to become more emotional, maybe unsteady on my feet about it all but I will try not to think about all the little things. I think the little things can grow if you feed them. I have to stick to the basics. I am having a big 8 hour operation that will give me the rest of my life. That's it, that's all it is. But its not is it..its about my opportunity.

I thought long and hard about where I am going, what I will do with myself, how will I make the most of the opportunity that science has given me. I know that living with a high risk of getting cancer is not something most people even imagine. Most people just live their lives thinking it will never happen to them, that cancer is what other people get.

Where did cancer come from? Its not contagious like a cold..maybe its spent many thousands of years just killing random people but as it gets its arse kicked more often by surgeons and scientists, its found a way to keep going - its in the genes. Its not contagious, yet mine is, I got it from Mum and she got it from her Mum and she got it from her Mum..but where did it start? How many generations back? We will never know.

My question to you..

Would you cross a road if you had an 85% chance of getting knocked over?

Or, if the common cold became a killer disease and you had 85% chance of getting it but were told that you could chop your nose off and you would never get the killer cold..would you do it or would you live in fear?

I'm not chopping off my nose but its a pretty important part of your face, of your identity. I'm chopping off my breasts, those which help make me feel like a woman, my perfectly formed, pert breasts. I love them - they are great but I will be mutilating them soon, forever. Its not really an option, keeping them, not for me. I dream of the day when I can relax on the other side of this opportunity. Would you cross a road if you had an 85% chance of getting knocked over? If you had an 85% chance of winning the lottery, would you bet? What if you had a 15% chance?

Hmmm...that would make you think.

So, the opportunity to live..what shall I do with it? Well, I have decided. I am going to University. A second go at my life, free of my nagging cancer worry - a new start, a new career.

After leaving my great job as a Capacity Development Engineer for Orange back in 2003, job life in Devon has been dull. I left a career but I was so blinded by grief that I just took off to lick my wounds and left it behind. I have mourned for that job but I am back, my brain is back, my future is back. Its time to move on, to get on the career train again.

Lets go!

15. Fluffing my nest

2008-12-08T12:44:00.005Z

I started to fluff my nest. The conservatory has been a non-plus room for us since we moved in 2 1/2 years ago so I have been resourceful in the last few days. My stinking head cold has passed from me to Chris and we are both sniffling, snotty slobs at the moment. Nice! Anyway, without any exciting job opportunities arising I felt I had to do something to improve the enjoyment of space in the home. I found www.freecycle.org - a nationwide recycling incentive managed by localised group moderators on Yahoo. Anyone can join and I am a big fan of recycling and free stuff.

I contacted a nice lady who was advertising a wicker/cane settee so I snapped it up for free and set about reorganising the conservatory so we can sit out and virtually be in the garden. I imagined the uncomfortable situation I will be in come Easter after my op and thought it was time to sort out a cosy happy space to spend my hours of convalescing in. I will be able to enjoy sitting out in the warm and watch the birds come and go in the garden, watch the plants grow through spring into summer, watch life. The re-org has proven a great success and I am clearing stuff from the house so that it feels positive and calm, not cluttered. Its amazing how long it takes to get rid of extra things you don't need or use anymore after a move. Its done now, there is little left that doesn't have a purpose or hold some beauty.

I am up here on the computer in my makeshift office space with no window and its a bit sad, its warmer than the conservatory but its sad too - no view. I need outdoors. I also need a job soon or my brain will turn to mush without the mental stimulation of work everyday. I need mental stimulation everyday, its crazy, I feel a little crazy. Plans are formulating..but what will it be. I am still holding out for one particular job but time will tell. I surely have a place among the thousands who are now unemployed out there - I am intelligent and conscientious..please dish me some luck.

Please..before I start dribbling.

14. Food for the soul - my recipe

2008-12-04T14:53:00.003Z

Aaahhh...gorgeous! Truly gorgeous. I made and ate my soup...mmmmm.

Chris had to go and post some 'proof of contact with his son' for the last 4 years to the CSA as his ex told them that he hasn't maintained any contact at all - which means she gets more money and he has been overpaying for the last 4 years as a result. She recently told them that he still had no contact, even though we collect and drop off his son every other weekend, on Wednesday evenings and 3 weeks of holiday over the year, hence request for proof and a refund of money. She is a bare faced liar. Will she get in trouble? No...good old fairness again. Excellent!

Anyway, he returned with a lovely soft baguette in tow and I served our favourite soup for which I have posted the recipe - if you are interested. It is far too good to keep to myself!

The biggest saucepan you have
Olive oil to just cover bottom of pan
Sage - dried - teaspoon
Rosemary - dried - teaspoon
(pestle and mortar together to powder and put into oil and heat gently for 2 mins)
Ground Pepper - a good grinding of fresh peppercorns
Chilli Powder - heaped tip of a teaspoon - just for a little zazz!
Onion - chopped
(Add to oil and fry off for 2 mins)
4-6 rashers of smoked bacon or lardons if you have them - 6 rashers gives good flavour without overpowering the butternut squash
(cook off for 2-3 mins stirring into onions, oil and herbs)
2 large carrots or 4 smaller ones - peeled and chopped
Butternut squash - peeled and chopped
(add both carrots and squash to pan of lovely bits and bobs and cover on med-low heat for 5 mins, stirring occasionally)
1 (or 2) veg stock cubes (depending on your tastebuds)
1 litre of boiling water
(when dissolved, add to pan. Must just cover the pan contents. If not, add another half or whole veg stock cube and make up with 500ml of boiling water as before and add until covering ingredients)

Bring to boil for 2 mins and then simmer for 20.
Take a slotted spoon, scoop out the veg and bacon bits and blend.
Add the blended soup back to pan and repeat until all the veg and bacon is blended up and mixed back together in the pan. Reheat gently if necessary.

Serve with crusty bread rolls...enjoy, enjoy, enjoy.

For those that don't think they like butternut squash - just try this..it is DIVINE!

Freezes well and warms your very soul. Yum! Yum! In my tum!

And now for some more job hunting..wish me luck

13. Positivity and rug pulling

2008-12-04T12:28:00.002Z

Ok..post 13. Positive? Hmmmmm...sceptical today.

I have just had a phonecall from the people I have an interview with tomorrow..sorry HAD an interview with. I was preparing all my questions, putting all my positive into getting that job. The phonecall was to say, sorry but our budgets have been cut and we have to put the position on hold until further notice. This is great! Just great!

At least Gordon Brown has thrown some form of lifeline for us, the mortgage payment help. I can't imagine how we will cope otherwise. It looks like Chris might have to have surgery (maybe) and all before I have my op too. I am worried, very worried.

The swimming sea of worry surrounds me yet I feel positive. I will trudge on.

I am going to make my famous and ludicrously tasty butternut squash and bacon soup for lunch.

Food for the soul.

Today is not a great day but I am about to try and make it better...then look for more work and burn my retinas some more in front of the monitor.

Ho hum...life is glum x

12. My nemesis knows my secret

2008-12-04T10:44:00.002Z

Who is my nemesis? Everyone who knows me knows but I'll explain. The woman who loathes me, the one who feels threatened by me, the one who barely knows me..the mother of my stepson.

Yesterday Chris (the hubby) had to go to the hospital for his first acute knee clinic appointment since I took him to A&E last week. The contact order allows him to collect his son straight from school ending time at 3.10 and as he has Parental Responsibility equal to his ex and should be able to designate a trusted other to collect his son for him if he can't make it in time..but no...she went mental when I did it and she won't even allow her son to hang out at his grandmothers house (which is around the corner from his school, literally) for the 30 minutes or so until Chris arrives. Her son walks past his grandmothers house every day and he is told that he is NEVER to call in to see her. She enjoys the same rights and anyone she likes picks her son up when she can't make it. Fair? No.

And what is this all about? Other women. She is frightened to death that she will not be the most important woman in her son's life. Imagine the shock she will get when he falls for a girl that she can't stand. Imagine the torment. Imagine the choice her son will face, lies, sneaking around, arguments, heartbreak, hatred. I feel sorry for the suffering he will endure one day because of her insecurities and I hope he is strong enough to stand up to her.

Sorry..that was off the subject but necessary for some background on the NEMESIS. I feel sorry for her, that her whole life is quite literally keeping up with the Joneses (ha! ha!). That everything we do she copies. They say mimicry is a compliment so I will look at it all like that but really, deep inside I see it as her keeping an even battleground - anything you can do, I can do better, no you can't, yes I can, no you can't..yes I can because I chuck money around at everything and that will win the day (we'll let her think that for a long while and then it will all come out in the wash!). I do things full of love and making the most out of nothing. I have honesty and love.

So, she knows. Chris stood on the doorstep yesterday on dropping his son back and told her that I have BRCA1 and am having surgery. I am glad that he pointed out that I don't actually have cancer. I am also glad he told her because it was in order to help her support their son if he is troubled at times about it. He is worried about me and its important that she knows so she can do some research and help him understand when he feels sad or scared or worried - if she can stomach supporting him over worrying about me that is, I hope so, for his sake. We aren't there enough to be able to and he knows his mum hates me so it will be tough for him.

She did actually say she would fit her plans around what we were doing over Easter (which is when my op is) which is a miracle. I know she goes through waves of hatred and niceness, she is a little unhinged in that respect, volatile.

I hope that she now realises more than ever how important her son is to us - he is my only son too and I love him dearly, across all the pain, hate, miles and time apart - I am always here for him and I know it will be difficult. I hope she realises more than ever that her son loves me as well as her and that she should be happy that he is surrounded by people who love him and let him love them back without guilt. Our bond will be more evident to her than ever as we near Easter.I am sorry to make him worry, he has enough troubles in his little life. I wish I could take it all away and I wish I could be there for him.

11. Rudely awoken, smears and the headache

2008-12-02T13:32:00.002Z

At 7.43am I was sound asleep.

At 7.44am I was rudely awoken by my mobile phone ringing. On the other end was the gynaecology and obstetrics secretary who had been off sick for 2 weeks. I had to chase and call and leave messages everywhere for her as no-one seemed to be covering her job. She didn't apologise for the early call and rushed into an almost rant and incredibly random. I am not sure that she knew anything about me or what she was calling me about. At least she know that I had seen the surgeon about my womb area.

"Are you having a hysterectomy?"

No, no, I'm not but thanks for checking my file and notes before calling me. Thankfully she is not the surgeon doing my op or I could end up leaving without my entire womb and possibly a kidney or two. I explained that I was having my ovaries and fallopian tubes removed but that I needed to book an operation as soon as possible as I now had a date for my PBM (Prophylactic Bilateral Mastectomy). She wittered on about how they had changed all the waiting times and the rules and that it might be a problem. Is that really something I need to hear at 7.44am? Is this really something I need to hear about at all? Do you care? Do you think it would have been better to say, leave it with me and I will see what I can arrange and call you back rather than offloading at me because you are stressed that you have 2 weeks of work piled on your desk and you want to get my phone call off your list of things to do? I just want you to sort it out now please.

"Maybe they can do operation when you have your other surgery. It would save you having two general anaesthetics, but that's up to the surgeons."

Yeah, thanks for the suggestion, I would love to be under the knife for another 2 hours maybe, great. Then when I wake up I will have painful breasts, back AND groin region - nice one! Um hello?? How do you think I will be able to move? Do you think I want to be in hospital longer than necessary? No. Do you think I want to face what I have to face all at once? No, and thanks for the consideration.

Am I over reacting? No. She was vile. People skills, nil.

When she hung up I realised my dumbass cold headache was back and I felt crap again. Then I remembered that I had a smear test to look forward to. Yippeeeeenot!!

Not so bad, but I told the nurses that I was used to being groped these days and told them that I had just found out about my BRCA1. I told them that I was going to do surgery and explained that although it wasn't great news I was glad that I had a genetic cancer that they actually know about and they can do something to help me. They both looked quite awed, that's all I can say really. It was weird. As I walked home I realised that I had told someone other than my family and friends. It was an odd feeling. It made it more real.

I popped into the shop to collect some goodies for baking and the chemist for cold remedies..which I wish I hadn't. Beechams all in one gives me an intense headache. Not helpful at all. I'll stick to my hot honey and fresh lemon.

What a weird day it's been.

10. I woke in the night thinking about the hot blanket!

2008-11-30T17:24:00.003Z

..about the hot blanket. The what? The hot blanket, just like I said.

What the hell is the 'hot blanket'?

Ok, because I am going to have muscles pulled round from my back, under my armpits (wince now if you like) and through under my empty boob skin to make the new ones. I have to wear a hot blanket to help everything stay alive and happy and keep everything toasty.

Hot blanket is going to be 36 degrees Celsius!! For 48 hours!!

The endurance of this sweaty 48 hours will be one of the toughest parts, now that I am thinking about it. I am gonna sweat my arse off!! I had a vision last night of being completely at the mercy of the nurses, just lying there sweating relentlessly with nurses coming and going with dripping sponges washing me down to keep me cool. That sounds awful, like some Japanese game show.

"She's doing well, into her 24th hour now, only 24 to go. It must be sweltering under there. Imagine it..like being led in the desert under the beating sun, unable to move, in pain, sweating. Will she make it? Tune in tomorrow to find out in another episode of the HOT HOT HOT BLANKET SHOW!"

What the hell am I doing? I am sure it will be fine..I hope it will be fine. I hope I don't get irritable. How will I sleep? I think meditation might be a good way to go. Is there any way I can prepare for this bit? I think I will practice with my beloved wheatbag, my little friend who helps me through evil womb and back pain. I won't need him anymore after the oophorectomy but I am sure that my stepson will take him on to toasty up his feet on cold nights, the perfect bed warming device!

Damn..the hot blanket - I'm quite scared of it..this is such a small part in reality but I have to trust that I will make it through sanely and that I am quite good at dealing with varying temperatures. Although now I am worried that I might suffer with menopausal hot flushes too but that might not be such a bad thing, it might prepare me.

"Everyone cheer, here come the nurses. Its been a long, hot and crazy 48 hours but she's there, she's made it through. It's coming off. Remove the hot blanket! WOOOHOOOOOOOO!!"

I think I will order ice cream to arrive on the 48th hour - ice cream please, with extra ice!

9. Telling my stepson

2008-11-30T15:47:00.002Z

Whilst sat in the conservatory trying to work out how to put the yellow Lego crane back together without the manual, Chris, my stepson and I had a chat about me and my op. I think at 10 years old he needs to know what is happening and that he doesn't have anything immediate to worry about, I am not about to die. It was going fine but then we mentioned the 'C' word and his little face went pale. I quickly reassured him that I do not 'have' cancer but that the chance of me getting it in my life were very high, much higher than the average person and that is why I am choosing surgery. I explained that if I just spent my life going to hospital for regular screenings, I could still get cancer and I would have to have operations then but it would be much worse so I may as well have them now while I am fit and healthy.

He looked so worried. We talked about it some more and later in the day I showed him the CGI video as it seemed to be the easiest way to explain what would happen to me and that I am going to hurt - a lot - and that I will need to be cared for. I think it made more sense to him.

One of my biggest issues with telling him is exposing my vulnerability to his wretched mother. I explained that she may not be one of the best people to talk to about it if he was worried as she wouldn't piss on me if I was on fire. He agreed and told me that he thinks she hates me more than his Dad because he thinks she is worried that he will love me more than he loves her, which is very probably true. Her insecurities cause him and us no end of problems and I am sure that when she hears the news she will skip around her house for weeks on end hoping that I die on the operating table. Do I care? Actually, no. If she causes any problems around then, we are stronger than she can ever imagine, untouchable. Anyway, that is just a small drop in the ocean of things at the moment.

I've just realised that I am going to have to get very busy in the garden in spring so that everything is sorted before I am incapacitated for a while! Chris will have to be on grass cutting and pond duty. Doesn't look like I will be able to get my gravelled patio area sorted this year unless some miracle gardening team whisk in and do it all for me - which is highly unlikely, unfortunately! Ho hum..plans for 2010 are forming already. Another delayed year.

And who is going to paint the house too? Bugger. Gonna have to rope in some family to help out I think. I can't have another damp winter, my house will fall down. I had so much planned. I wish that Chris gets some answers about his knees and he can live a normal, active life without pain. I wish with all my heart.

8. Weird thoughts

2008-11-28T22:35:00.002Z

Ok, so I started thinking about the surgeon. He is human after all.

What if he has a bad nights sleep on the Sunday before my op? What if he drinks too much wine and feels a bit rough? Do surgeons drink lots of wine?

He looks like a nice, proud man. Neat and tidy with warm hands. I started to think about him a lot. He is going to be responsible for giving me new 'boobs' and chop up parts of my body. He is human and he has good and bad days too. I don't want to put pressure on him to do his best job ever but a secret part of me wants him to. I want to be his very best work! I am willing to show people the results, to share with others who are where I am today. Maybe he thinks that each operation he does is going to be his best ever? What the hell goes through his mind before an operation?

Should I ask him to join me for a beer? I could pick his brains, tell him to be a good boy over the weekend, take it easy, sleep well.. Is this me trying to control the situation as much as possible? Probably..how sad.

So, should I? He could kill me or he could save my life, the least he could do is join me for a beer.

Crazy..but there you go. What colour socks will he wear? He looks like a funny sock kind of guy. Maybe I should buy him some so he can wear them on the day of the operation.

Yeah - I'll buy him some socks.

7. It's all arranged!

2008-11-28T21:53:00.004Z

I'm not sure how it happened. One minute I remember talking about the nitty gritty of nipples and scars, the next we were pencilling a date in his diary..planning my date with the surgeon for breast reconstruction.

Monday 30th March 2008

I told him that I am concerned about being smaller than I am now and although he is not keen on implants, I told him that I think being smaller will psychologically scar me for life. He agreed that it was important that he knew how I felt about that and would do his best to get the best shape possible with my back fat and muscle but would have some 'emergency' implants on stand by, just in case. I felt much better about that. I mean if I'm going to do this I have to feel happy about the end result. I felt quite selfish in my request to stay the same size as this man is trying to save my life and I trust him, I have to - if I actually had cancer and there was no way of having breasts again, I would just deal with the consequences in exchange for life. This is different, I have a say - I have a choice and I feel grateful just to be free of the high risk and feel cheeky asking for perfection.

Before today I felt very anxious with not knowing when to 'go ahead'. I guess there is never going to be a right time to chop your boobs off is there, may as well just get on with it. My biggest worry is about recovery. I am worried about how long it will take me to recover because I am still out of work and things are very, very difficult right now. I imagined being in a safe warm place in my life when I would plan all of this when Chris would be home over the summer and I could relax and get well, but its just not happening like that at all.

My Dad is living in another country, my Mum is miles away in Bristol, my Brother never calls me anyway, we are 40 minutes from my lovely in-laws and nearest family, I have few local friends since moving and my wonderful husband is suffering with serious knee pain and on crutches at the moment, drugged up with painkillers most of the time. I feel quite lonely but I am sure that people will be there when I need them, when it's critical.

On top of everything I have a cold. The last time I had a cold was 6 years ago and it was MASSIVE and I had it for a month... Reckon I went through about 389 toilet rolls, 5 layers of nose skin and a drugstore of Sudafed. The last time I had a cold, I was grieving heavily and I was wafer thin after losing Paul. Run down big time. Here I am again..in the pit.

I need a health plan. I am sure that it will keep me positive in all areas of life - I need it, I can almost hear my body begging me for it..for exercise, for fresh air. I am listening but not acting right now, there is so much on my mind that I can't even think about it right now..and Christmas is coming, and I am not sleeping good at all.

I just feel a bit confused today. It's real today. What if I get a job? How do I tell them that I have major surgery planned and need to have maybe a couple of months off work? It worries me and I don't want to jeopardise getting a job by having surgery. This is my BIGGEST concern at the moment - work.

I guess I will have to just deal with that as and when it happens.

OMG! 4 months..16 weeks (ish)

6. Christmas and tears

2008-11-25T11:29:00.004Z

Had a conversation with Mum last night about my stepsons Christmas present. I wish she could be more involved in his life but its complicated. I felt terrible after I got off the phone, I realised that I felt sad for her. Tears just flowed and I felt so empty. My decision about surgery has effected everyone around me and I try to remember that it is about me and not about what they wished for in life. I have to do this for me. Grandchildren make old age worth getting old for I guess, little people to tell bad jokes to, love and squander money and time on. My brother has chosen not to have children too as his partner has MS and there's a risk of passing on the BRCA1 gene for him too. My parent's hearts must be broken.

My Mum has spent some time telling me about the latest newsflash about how magical science is and how embryos can be screened for genetic disorders now. This is the hardest part of knowing what I know - helping my parents to accept my decisions and that they will not have grandchildren.

Christmas is not fun for me. Christmas is about family and fun and children. It just makes me sad and I need to deal with that one day and do something good with Christmas time. When all the surgery is behind me, I will change Christmas.

5. Oophorectomy: I'll have my menopause now please, pronto!

2008-11-21T19:06:00.008Z

I got a letter from my gynaecologist and obstetrician consultant, inviting me to call and book my operation for the oophorectomy. I am having both ovaries and fallopian tubes removed.(video link for info)

It was kind of a reality hit - this is it, if I do this it means never ever having my own children. But that's fine, I'm okay with that now, I am at peace and know that I have made my choice. No regrets.

It also means - T H E . M E N O P A U S E....by choice!! OMG!!

What will that mean for me? NO MORE PERIODS!!!

All together now.....

WOOOOHOOOOOOOOOOOOOOOOOOOO!!

On the symptoms side..who knows, I might not flinch an eyelash but I might sweat my arse off at night or I might grow a beard (although the surgeon laughed when I said this and he said I wouldn't). It also means I have to super healthy and get out exercising more. Early menopause means potential bone loss earlier than the average woman in her fifties after menopause and also a higher risk of heart attack. I have to eat good (thankfully I cook from scratch all the time anyway so no shock to the system there) and get lots of sunshine (more holidays then - not a problem, apart from affording them)!!

Sorted! Do you think the NHS will pay for my shopping bill and future holidays in the sun then? Not likely!!

I have listed five website links below that explain about early menopause, osteoporosis and Vitamin D and Calcium.

Early Menopause - Info
Early Menopause - Risks
Osteoporosis
Eat Well - Vitamin D
Eat Well - Calcium

Basically, good diet and exercise will help things out but fragility in old age is probably likely, but that might mean I spend some time in a groovy racing stripes granny buggy but hey..that's better than death by cancer so I'm all lets go go go!!

If I can get hold of the darn secretary to sort it all out...ho hum. I guess a date will come soon. I think I will ask Santa for lots of bed sheets for the potential night sweats, a sack of soya beans and a two week break in the Maldives! Nice...

4. Should I have children or not?

2008-11-21T19:01:00.003Z

To have children or not to have children? That is the question. I may ramble about this but isn’t the whole point in life to recreate?

This has been one of the biggest driving factors in finding out about the family gene. I have been through so many feelings on this subject I cannot fully explain, but the outcome has been based on many years deliberating facts and feelings.

In my early 20s I was full of enthusiasm and energy for having a family but I was with a man who didn't want children, under any circumstances. Not something you discuss on a first date but it was too late and I was madly in love with him. Most women figure the panic in a man about having kids is going to change as they mature, but its usually a no. 'Kids' were always a fighting point with Paul and I, and it broke my heart. I tried for almost 7 years to bring him round but I went through some very rough patches in the process, details which I won't go into, and I was hurt very deeply.

Paul was killed in a road accident 2 months after we got engaged but the honesty of the situation is that I had started to work out how to leave him so that I could have a family. I'm not sure too many people know that, but it is true. It didn't mean I loved him any less, just that my instinct to have a family was so strong that I would leave to find it. I remember telling him it was a baby or kittens. He chose kittens. It healed a gap for a while but I still wanted out but didn't know how to leave, it was all very complicated.

After his death, I started to question whether I was meant to have any kids at all. I was still worried about the gene thing and I pushed it hard with my doctors. Without a viable man in my life, I had lots of mental time to consider 'what if I have genetic cancer?'. In my time with Paul, my mum had a small breast lump found on a routine mammogram, it was cancer. Thankfully she had a lumpectomy, was very strong and just took it on board. I am not sure I ever saw her down about it, maybe it never sank in or she was just covering up. She'd lost two sisters to cancer and two aunties, her own mother and a niece had also had breast cancer. Maybe my mum is just very brave and used to heavy emotional stuff (unfortunately) and held it together for us lot.

When I met Chris about 6 months after I lost Paul, people probably wondered what the hell I was doing. I wasn't ready to love another man but I let him love me and I explained that I would love him as much as I could, but he understood. He watched me grieve. He was there through some of the hardest stuff that comes after the dust settles. In the early months I explained about the children panic I had. I was desperate for kids by now at 30 years old, but it felt more like a panic than a real option. I found out Chris had had a vasectomy some 5 years earlier and my heart sank, I was back to square one. I looked into how much it would cost to reverse it, what the success rates were etc. Not much chance. He didn't want more children anyway but wished he'd had his son with me and not his cruel ex. He'd been viciously scorned. Only days after his vasectomy operation around Christmas time he was kicked out of his home by his ex, separated from his 2 year old son. She let him have the op but knew she didn't want to be with him and waited until after it had happened before she destroyed his life.

As things unravelled between us I started to wonder if I would ever have children and questioned why I wanted them anyway, why was I continuously halted in my efforts for a family. Maybe it was fate. I think this is the turning point for me. I accepted that whatever I did, it was going to be very difficult. After two difficult years of grieving, fighting with Chris's ex for access to his son and moving home twice I sat up one day and realised that I had stopped wanting. I focused on my future health again, now that life was becoming more settled and structured.

I found out that my mum could have a genetic predictive test for a breast cancer gene on the NHS and I asked her if she would. I explained that it was so I could make a final decision about my choices of having children and so I could make choices about my future health. If I had the gene too, I wasn't having children of my own but if I didn't have it, I could look at the possibility, although a complicated one.

It took over 2 years to get her results. We were promised 12 months, but they had sent it to the wrong lab who took far longer return results. They knew that I was worried about my age and my youth to have children was slipping away yet the situation was dragged out to stressful lengths. After the first year, I chased the results. I chased, and chased, and chased. I was in limbo. Those 2 years were torturous for me. Finally, when we found out that mum had the BRCA1 gene and I got upset more than she did because I didn't want her to have the gene and I didn't want to have it either.

I was almost at my decision about whether I could have children or not by now. There was a 50/50 chance that I had the BRCA1 gene too and I had spent so much time thinking about it I accepted that I probably had it too and in the 3 years it took from getting mum tested to finding out my own results, I made a decision before I knew my own results. I figured it would make the news less of a hit. Pessimistic? Probably, but I have always been a planner, always two steps ahead. A problem solver. I prepared myself.

So, I gave up wanting children, I realised I had no interest in babies, in fact they were just smelly, vomiting, tiring and expensive things that I couldn't even afford in my life. Society is full of kids who take take take, who shoot each other, who drink and abuse. As I looked harder at reality, I found more reasons not to have kids. I finally listened to my body and it told me that it had had enough wondering, wishing, wanting. It was time to stop, it was tired. I weighed up my feelings about potentially passing on a cancer gene and realised I couldn't do that to a child, not with the knowledge I have. They wouldn't be able to do anything about finding out until they were 18 and I would spend even more time wondering, waiting. I thought about the potential guilt and sorrow it would bring. What if my children wanted kids? What if they felt the same as me about passing it on? What if I broke their hearts too? What if they resented me for it?

I was at a point where whatever the result, I was probably not able to have children of my own.

And then recently I found out. I was a BRCA1 carrier. I felt relief. It was over yet just beginning, and I was ready for it.

3. Surgery - the options

2008-11-21T17:15:00.007Z

Well, I thought I should probably post what surgery is available to me. For the feint hearted, there is no need to worry - no real blood was spilled in the making of these videos – all CGI! It's probably easier to show you these than eventually explain what will happen to my body.

Video of Oophorectomy

Video of Free Flap Breast Reconstruction

2. Family history and BRCA1

2008-11-21T11:24:00.020Z

So what made me investigate a cancer gene? My family history of breast cancer (and other cancers) which is pretty heavy-duty:

If you have one or two people in your family who have had cancer, it is highly unlikely to be a type of genetic cancer. Here is a link for Cancer Research that will give you excellent information if you are at all worried about this subject.

Cancer Research

So looking at my family history, it is hard to understand why a doctor would tell me I had little to worry about, but that's why I kept pushing to find out - for me.

What is BRCA1? Its known as the BReast CAncer and ovarian cancer gene. The BRCA part of my DNA is supposed to help repair damaged DNA but the BRCA genes are mutated and they put me at a risk of upto 85% chance of breast cancer and upto 60% chance of ovarian cancer development in my lifetime (to the age of 70). There is also BRCA2 which still carries a high lifetime risk of both ovarian and breast cancer but about 20% lower for both. It is known that the BRCA1 gene can trigger cancer in much younger woman than general sporadic breast cancer which tends to effect post menopausal women. With BRCA1 and aged 35 I feel like a ticking time bomb. It is not curable but loads of research is being done. Its only been identified since 1994 (see link below) but was a major discovery and a very imporatant one. At the moment though, there is no way of tweaking my DNA to repair the broken bits so I have to choose my path from here. Screening or Surgery?

My thoughts often play with the fact that I am a mutant, but only an 'identified' mutant. As my husband points out - I am not alone, there are many people walking around with genetic mutations its just that don't know about it. Not to worry you reader, but it is true but very unlikely. Genetic cancer is rare but I guess the knowledge of my gene mutation, although I wouldn't wish it and the worry it carries with it on anyone, it gives me options and hope.

Links - Cancer Research and Cancer Journal

1. Introducing me

2008-11-21T11:09:00.004Z

I'm a woman who has lived with a nagging question in her head for 20 years. At only 35 years old that’s a lot of worry. There's been a question that persistently knocked on the door of my rational brain, telling me to pursue the answer. What is the question?

Is there hereditary cancer in my family?

At the age of 16 I vividly remember sitting in front of my GP raising my concerns of the very evident history of breast cancer in my family (7 women that I can name). I remember he almost laughed at me when I suggested it might be hereditary and told me that the chances of me having genetic cancer were so small I shouldn't worry about it. I was there to go on the pill and I knew even then that the pill increased the chances of breast cancer and I was concerned. Granted, in 1989 there was little information available about genetic cancer but I knew it was still possible - so many woman had been through or died from breast cancer in my family, it just couldn't be a 'coincidence'.

So here I am today, in the knowledge that I have the BRCA1 gene; the breast and ovarian cancer gene. It took me 13 years to get into the 'cancer care system' of the NHS. Initially they told me I was too young and couldn't be screened until I was at least 30. At 27 I found a lump and that made them sit up and take notice. Thankfully it was benign. It’s taken a further 9 years to go through screening, counselling, appointments, my mother's DNA testing, my mother's results, my blood samples and genetic testing to find out my own results.

In August this year, I found out. I sat next to my husband Chris in the MacMillan cancer unit, Derriford Hospital and the lady told me that she was sorry to say that the results were positive for BRCA1. I didn't flinch. I felt relief, my gut instinct has been right all this time. I was probably relieved because all the energy I had wasted worrying and planning and deciding 'just in case' hadn't been in vain after all. I think I would have fallen off my chair or burst into hysterical tears if she'd have said that I DIDN'T have the gene.

And now? Now I have choices to make.