90. Pre-Op for the Finale (Phase One)

After a second night of insomnia and only 2 hours sleep I had to get up for my Pre-Op assessment on Thursday.

What is a Pre-Op?

Pre-operative assessments involve blood pressure, weight, blood, swabs and a chat about medical conditions. I can highly advise taking an 8am appointment if you can, as with doctors surgeries, the team gradually run late by the afternoon. I have, in the past, on a number of occasions now (I am getting old hat at surgery now) spent over 4 hours in a Pre-Op Assessment ward with an afternoon appointment. Hot, stuffy, boring as hell. My 8am appointment was over in an hour and half, brilliant stuff and the best experience of Pre-Op yet.

6.45am  Alarm...eurrghh!

6.55am  Cup of STRONG coffee

7.10am  Lashings of anti wrinkle cream

7.35am  Out into the crisp new autumnal air and into the 8am rush hour

7.45am  Discovered the 8am commuters are grumpier than 9am commuters and way more aggressive.  How rude!

7.58am  Arrived at the hospital and was spoilt for choice with parking spaces, this is a rare, rare event and I liked it.

8.01am  Entered the doors to a gentle world of fresh shift of hospital staff willing to help, smile and direct me to where I was supposed to go.  Felt sad that most would leave feeling knackered and frustrated having walked past some of them clocking off and going home on my way in.

8.03am  Arrived in the peaceful and friendly Erme Ward, filled out my form and took a seat, watched the Paralympic hand cycling.

8.10am  My name was called and the poking and prodding commenced.

Step One: Blood Pressure & Weight

Having just driven there with a bunch of aggressive driving commuters, I wasn't completely relaxed, plus I always get a little anxious entering hospitals. It always baffles me why they do this bit first for that very reason. My blood pressure was fine, 112/75 (blood pressure explained), but apparently I should have been dead with 238 heartbeats per minute!! Holy cow! Thankfully the machine wasn't working properly, so it was the old fashioned wrist and watch beat count = 75bpm. Phew! I was still alive!

The next bit was the depressing bit, the weigh in. I think all weighing scales in hospitals make you heavier than you are. I had an progesterone implant put in 4 months ago, and suddenly put on 8lbs in weight, which is good for my upcoming surgery but highly unusual for my stable weight record. Back in November 2011, comedy surgeon was concerned that I didn't have much fat for him to work with for fat transfer. I can officially confirm that he now has plenty to suck out and juggle around.

Step Two: Chat & Questionnaire

I ramble at this part. Sat in room with a closed door and a nurse, there is a 4 page questionnaire that the nurse goes through with you, asking about eyesight, allergies, previous operations (which I find weird as they have records of these..surely?), mental health etc. It is this stage that I realise I'm pretty healthy at 39 years old and feel lucky to be that way. The nurse was a lovely lady, we laughed a lot and found out that she had never had a general anaesthetic - lucky woman!

Step Three: Bloods & Swabs

The blood and swab nurse was lovely and chatty.  She took my nose, throat and groin swabs for MRSA tests and took my bloods.  A few pokings, a small scratch and a nice compliment about my dress later I was done, free to leave.

9.35am  Walked out of the hospital feeling good.

9.37am  Walked past the medic team waiting for the air ambulance to land.  As it landed about 50 feet away, a sudden upwelling of emotion came over me as I remembered the day my ex-fiance didn't quite make it to hospital in the air ambulance that tried to save him.  He died as it landed on the helipad at Salisbury hospital after a big RTA.  That day I should have been driving, not him, that day I was spared my life or serious injury at least, and although I have endured other battles, I am still here and I can still fight them.  My mortality is very real to me.  Most people don't think of death but I am very much aware that I am alive and I want to feel it everyday, not sit when I am 80 and realise that I sat on my arse, watched tv too much, stayed indoors, never took risks, did nothing with the time I had here on Earth.  I shed the tears that came from nowhere from the moment, wished the person inside made it, and then sat in my car and smiled to myself remembering some good stuff and then made my way to work.

The countdown starts here for Finale: Phase One = nipple reconstruction, back scar revision (part 2) and fat transfer for breast augmentation (amending one flat one to match the other with a little extra pillow plumping).

Weeeeee!! Here we go!

88. Podge, Pondering & Self-Esteem

For the last 3 years I've enjoyed some hard earned emotional respite and peace from my genetic breast cancer worry.  Facing more surgery in the not too distant future has new and interesting mental challenges.

Podge  Since comedy surgeon gave me strict orders not to change my current weight in preparation for my fat transfer surgery, I've struggled a little.  I am currently fluttering around my trigger weight, the one that normally makes me kick my own arse into action and exercise more and eat less shite.  Looking at the scales everyday and knowing that I can't lose any of those 'oh my god, sort it out love' pounds is, quite frankly, bizarre!  It's made me learn to accept that being a little fuller figured is okay.  Age may be playing its part here, having recently edged ever closer to big  4Oh my god! 

Pondering  People are like teddy bears; they are nicest when they are brand new or when they're worn at the ears and nose from years of love with stuffing knocked about from many adventures. I had my stuffing pulled out by my surgeon and it is one of the biggest adventures of my life, both emotionally and physically.  I have lost and gained (not talking the extra poundage here) along the way.

Self-Esteem  Most women struggle with their body image and I was once one of the many. I had such a negative view of my body and I forgot how to be feminine, how utterly sad. In the past, years of school days bullying by boys teasing on the size of my curvaceous rear end and the teasing that continued by a man that I once loved, damaged my body confidence deeply.  It took years of comforting words from my incredibly caring and loving husband to change that, but it wasn't easy, I had to believe he meant it and I had to allow myself to feel it.  The problem with being BRCA+ is that once you know your genetic status you have to choose to either stay as you are or chop your breasts off.  The latter comes with major issues, body image issues involving risks, scars and body changes that some cannot face. I know a lot of very amazing BRCA+ women who have been through the mangle with surgery and their emotions. They are more beautiful than they ever imagined, radiating confidence, living life, loving people and being free despite being scarred mentally, emotionally and physically for life. 

There is something incredibly liberating about facing your own mortality and flirting with your survival instinct. It is utterly priceless - a life adventure. Most people who have pulled a mooner in the face of death tend to live life fuller, love deeper, risk more, are kinder and more forgiving of others.  Thats the way everyone should be, but it takes some major event to scare the shit out of you before you take a long hard look at yourself and what you feel about everything.

What was the purpose of this blog post? Just a vent, another fugly morning mirror look at myself and sorting it out for the day moment. How being a little podgy is not the end of the world, that I've come a very long way and I'm not who I used to be.  What a fabulous thing!  I wouldn't change any of it.

87. Plumping my pillows

What an absolutely gorgeous day it was today.  As I drove around the fringes of the city towards the hospital, the school kick out traffic slowed my pace.  I was able to people watch a little and sat perched on bus stop benches in the sun were women in colourful skirts, exposing freshly shaven legs - with freshly cut and blood scabbed shins.  Lovely!  Guaranteed, the minute the sun comes out, the first 'exposure' shave will end in tragedy with blobs of tissue stuck all over the place to stop the never ending bleed that comes with a razor skinning.  

As usual, nowhere to bloody park.  I drove through every single car park in the hospital grounds before I found a spot, where I wasn't supposed to park.  Sod it!  On entering the Outpatients some woman was ranting about photocopying a piece of paper, which obviously needed the attention of ALL FOUR RECEPTIONISTS AT ONCE!! Two other patients and I waited a polite little while until I wanted to shout, 'Get the fuck on with it will you!!', but I didn't, I'm too pragmatic in such situations so I just stepped right up to the desk and forced one of the receptionists to deal with me.  She stretched with here hands on her face and yawned, "Can I help youuuu?".  Rude cow.  The usual security questions were asked.  Security, seriously? If anyone wanted to steal someones identity, just hang out in Outpatients where patients reel off all manner of personal details aloud for all and sundry to hear.  Good place for stalkers too, phone numbers given out and addresses - genius NHS, utter genius...

For once Waiting Room 2 was nearly empty and the open window seats were free.  Phew, it was hot - like 22C hot, nice for outside but not sat in a stuffy hospital.  Comedy surgeon was late but I did't mind, I was twittering to some funny ladies and looking at the people as they were called for their appointments, one by one, emptying the waiting room further.  Finally it was my turn.  Into the small room I've seen many times before along this journey but no gown today which can only mean no boob flashing.  This was a first, I often feel exposed (of course) and talk a lot with nervousness when I'm half naked in front of two men who poke and squeeze my boobs.  Comedy surgeon and sidekick surgeon entered the room and smiled with familiarity and I felt comfortable.  I proudly announced that today we were going to talk fat transfer.  He flicked though my two inch thick file and his notes, nods and mumbles then told me to stand up so he could check me over for wobbly areas.  Thankfully I'm harbouring enough lardy bits (thank you cake, pizza and revision laziness) to make the operation possible, but I am not allowed to lose weight.   

We discussed the downsides of the surgery; possible infection, cysts, fat necrosis, loss of fat cell percentage (30-50%), uneven breasts, bruising and soreness.  I have to stay in overnight for the first procedure so they can manage the pain levels.  I'm sure it won't be that bad, nothing can compare to what I have already been through with my first surgery.  

The positives of this type of surgery are that the fat transfer is natural and good results are achieved.  The fat that forms new blood supplies in the breast tissue will stay forever and change with my weight, which is one of my big issues, and I will gain volume in the upper part of my breast too which will help fill a bra cup more fully.  Obviously I will have a more svelte bottom, thigh and tummy region where they liposuck (sp??) the fat from and bigger boobs.  Yay!

The first procedure will take 3 hours maximum as my nipples are being done at the same time.  The second and third procedure will just be fat transfer via liposuction so I can grow some more podge in between each session (about 2-3 month intervals).

So, by Christmas I might look more like Dolly Parton and less like Popeye's wife, Olive in the boob volume department.  No, seriously though, I will be happy to gain a cup size and some fullness so I can go back to normality, as close as I will ever be.  Just waiting for the appointment now and I am excited!  

86. Fat transfer appointment...tomorrow!

Note:  All links used in this post are NHS pdf files and previous posts within this blog.

After a couple of phonecalls to comedy surgeon's secretary, an appointment arrived promptly in the post.  Tomorrow I go to meet comedy surgeon and discuss my fat bits (joy!).  I've been holding off reducing my wobbly bits in anticipation of this meeting.  Hanging on to the wobble for a few more weeks.  Never have I been happier about saying, "yes, I have fat bits, isn't it great?!!".

My risk of breast cancer was so high, 85% high and after three years of waiting for everything to settle down after my LD Flap breast reconstruction (you can read more here) I've finally arrived at the end stages.  I lost a whole cup size and a couple of inches through my surgery, despite being told they would use small implants if the muscle, skin and fat was not enough to match what I had before (I was a perfectly formed 36B when I was a complete woman) yet they were never used.  I'm pretty pleased about that, I never wanted implants anyway but I never expected to be so much smaller than I was.

From the front I look even and proportioned and they appear even but a side profile reveals the loss of volume and I can't find any bras to fit me.  The left is much flatter than the right.  Tomorrow I will go to get measured for a bra fitting and take that info to comedy surgeon.  I'm 63kg at the moment (about 3kg over my norm) and even that small weight gain makes me feel flat chested.  My body spreads its weight well, I'm an all over girl, but my breasts never change size with the rest of me.  I didn't realise how much that would bother me and it was never really explained that it would happen.  The reason is due to the location where the skin and muscle was taken from; my back.  Most people don't put much weight on their backs, unlike TRAM Flap which is stomach fat and muscle, an area where women tend to gain weight easily.  Fat transfer may change this for me, introducing fat from areas of the body that store fat; hips, thighs and stomach and so, as the cells settle in, they will act as they always have, gaining and losing fat with the rest of me.  About 40-50% of the fat injected will be reabsorbed and several visits are required to achieve the results discussed.  The maximum increase is usually two cup sizes.

I'm a little apprehensive but quite excited.  Comedy surgeon has seen me change my mind a few times but this time it feels right.  My time is now, lets do this thing and get on with the rest of my life.

85. Justification for Cleavage

A bit of someone else's cleavage. 

Cleavage.  I miss having cleavage.

I would like enough to

a) wear sexy bras again
b) be able to nuzzle into

If you lost yours wouldn't you want it back if you could?  Well, at least you would look at the offer before you shut the door on it, right? This is a sore subject for some who have had less than sucessful surgery like mine, through implant rejection or cancer and I have deep admiration for those that have been truly scarred for life.  Those women will not scorn me for my choice but rather rejoice in the fact that I have the choice at all.  The whole point of knowing my BRCA1 genetic mutation was being able to choose between life (minus original boobs) and the gambling game of my life and cancer risk.  I chose.  I also get to choose again. I have been given the opportunity to play around with fat transfer for breast augmentation.  I know I said I wasn't vain enough to get them done, but let me explain that when I have tried many a push up bra on (used to be my favourite), I get creases, like old lady boob skin crinkling, going on instead of the full breasty-breastiness of real boobs.  Basically my top bit is a bit empty of boob.  Fat transfer can sort all those bits out a little.

The procedure can take up to 5 hours, its not easy, bruises will be a-plenty on the first visit but the fat is stored for the 2-3 revisits top up injections.  My hourglass figure has become more pear shaped these days and when I put on a few pounds everything puts on weight except my new reconstructed LD Flap boobs.  They look great though, I should be happy but saying no to this would be like waving goodbye to 'beautiful, what you used to have boobs'...forever!!  How can I resist?  Oh the vanity of it all.  I suppose this is the question to myself, am I fully justified? Do I need it? Why do I need it? Just because it is offered to me, should I take it?  I suppose you need to lose parts of your body before you can answer that question.  The answer to myself is, yes. The body sculpting part isn't even part of my justification or reasoning.  It's all about the boobs. Simple.

84. Before I actually say no to the boob plumping

I have just seen some fat transfer videos and can't believe how amazing the results When I was keen on this surgery a while back, comedy surgeon reckons it wasn't really worth it but that was a couple of years ago.  Now the procedure is more common, he is offering it to me and I thought I wanted to be finished as I am, but now I am not so sure.  Maybe I do want a bit of re-sculpting all round - as weird as that sounds - a part of me wants to experiment down the path of 'lets make your boobs bigger with fat transfer' (non-graphic fat transfer breast augmentation video here) and a fantastic before and after photo gallery of natural breast augmentation.

Now I know in my last post I said I wasn't going for this but my 'this will only be offered to you once, you only live once, why not' brain kicks in.  So, I think before I get trim for the summer maybe I should just relocate it instead? I am calling my comedy surgeon tomorrow and telling him I want the complete finish me off works.  A girl only has one life and although I am on my second pair of boobs, they could do with a little enhancing of the natural variety.  Fuck it, why the hell not? 

83. Time to get Nipple-tastic!

Time, as it does, has passed.  It's been nearly a whole year since I last posted and, as usual, its been a mixed bag of life, adjusting, accepting and blossoming in the esteem department.  The revisions that were done a year ago worked out really well (indentations now gone) but there is still work to do and I popped back for a visit to my cheeky surgeon about two weeks ago to discuss the end.  Not any old end, the end of my surgery (I hope) apart from the tattoo maintenance that comes with reconstructed nipples.

For the first time there was no woman present, which I thought was odd but it didn't bother me and I was introduced to the young male assistant I assumed was a doctor in training. 

My comedy surgeon to young male Assistant: "Now this, this is a very tidy breast reconstruction!"

I was unveiled for his perusal.  The eyebrows raised and a pleasant or surprised look crossed his face (probably a mix of both, it was hard to decipher).  He didn't say a word for the rest of the appointment - maybe I scared him a little, I can be a bit motor mouth at times, particularly when feeling nervous or exposed!

My comedy surgeon starts to discuss nipples, how they will be made, explains how they will STICK OUT ALL THE TIME.  Yes, I know this, but it poses a problem.  I hate wearing bras since my reconstruction.  Nothing fits, nothing is comfortable.  You go without a bra for 3 years then try and put up with one all day long...my god it is torture!!  Rip the bugger off at the earliest opportunity!  Bloody hate them - pretty things but not for me anymore.  And so the problem of permanently erect nipples.  How am I going to live with them?  I guess I will just have to let people stare and wonder what type of floozy I am to wander around without a bra on, letting my nips stand out for all to see, all the time.  Well, fuck them...fuck them all.  If they knew what I'd been through physically and emotionally in order to get them then they can friggin' well enjoy them too.  I am not covering them up all the time with a boa constrictor of a bra in order appease their narrow minds about women's undergarment choice.

To the procedure - here's a pic of how comedy surgeon will make my origami nipples:

Having done Graphic Design at college, this strangely reminds me of flat pack designs for packaging for toys but in real life, I've seen a friend's and they look amazing.  I just hope mine do to.  

As for boob plumping, I've been offered fat injections to make them a bit bigger but that might only last for 3 years, and the fat cells may not even take and I don't want to face anymore weirdness thanks.  I've decided that my vanity is not strong enough to want them bigger, despite old grievances about the loss of my perfect 36B breasts.  My new ones are lovely, forever pert, small but beautiful and they just need finishing off.  The ends of my 16 inches of back scars need rectifying again so that's booked in at the same time...UNDER LOCAL ANAESTHETIC!!  Local he said, where I am awake.  WTF? I did ask him if I would put him off with all my talking..and what if I sneezed?  I have no idea how this is going to work but he convinced me that I can in fact have myself cut up whilst I am awake..and I agreed.  Gas and air will be at the ready - maybe I need a training run on that to make sure I don't giggle my ass off (I can do that without gas and air) and end up with extra nipples.  I'm up for the challenge - at least I can keep an eye on them and, as comedy surgeon says, I will find it fascinating! True I guess.

So I await my appointment for the knife, again.  Hopefully my exams will be over and I can then get on with my summer and getting some areola tattoos done.  

The end is in sight.  Smooth and sticky out I shall forever be!

78. Breast Cancer Care Family History Forum UK

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!

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

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

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

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?

62. My Race for Life

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

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.

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

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.

57. Pangs and hurty thangs

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!

52. Recovery time

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).

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

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! : )

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

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?

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?

36. MRI Breast Screening - Surveillance for BRCA

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