Tuesday, 8 December 2009

74. Strong, Weak. Weaker.

2 comments
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.

Tuesday, 1 December 2009

73. I need your vote

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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.

Wednesday, 28 October 2009

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

3 comments
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 :(

Tuesday, 27 October 2009

71. OkeyDokey Ovaries

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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!

Friday, 2 October 2009

70. Bra meltdown

5 comments


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?



Wednesday, 2 September 2009

69. Body changes, stitches, spots and looking back

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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!

Friday, 31 July 2009

68. Pause on the ovary plucking?

3 comments
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.

Tuesday, 14 July 2009

67. Light at the end of the boob tunnel

2 comments
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

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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..

Tuesday, 16 June 2009

65. Can I still do that?

1 comments
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.

Monday, 8 June 2009

64. So how am I doing 3 months on?

2 comments
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.

Monday, 1 June 2009

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

3 comments
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?

Saturday, 23 May 2009

62. My Race for Life

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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

Wednesday, 20 May 2009

61. Nip 'n' tuck 'n' physio

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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.

Friday, 8 May 2009

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

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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

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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.

Wednesday, 29 April 2009

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

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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.

Friday, 24 April 2009

57. Pangs and hurty thangs

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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!

Thursday, 16 April 2009

56. Time to disturb the mothballs

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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.

Saturday, 11 April 2009

55. Progress and challenges

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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

Thursday, 9 April 2009

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

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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.

Friday, 3 April 2009

53. Where has the funny gone?

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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.

Thursday, 2 April 2009

52. Recovery time

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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).

Saturday, 28 March 2009

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

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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..

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