Not your usual Thursday night.................
For the last year I have been attending a support group called "BRA" which is held at the John Radcliffe Hospital in Oxford. BRA stands for "Breast Reconstruction Awareness" and is a group for women who are having to consider what type of reconstruction they may like to have following their mastectomy.
I attend as a "post- op" lady who is happy to stand naked so that those women who are scared, can see an actual body and see the scars and realise that it's not as horrifying as they imagine it to be. It is an amazing group, a real mixture of professionals - the surgeons, nurses, pre-op, post- op women - an opportunity where actually all these roles become equal - we are all the same, all women with the same bodies, the same fears and a mutual understanding that can provide such comfort.
For me, it is a reminder of how lucky I am.
I am one of the very few women in that group who never did get cancer.
I can't share in the horrors of chemotherapy or the nightmare of diagnosis. All I can do really, is show my body and tell my story.
And get my nipples tattooed live for them all to see!
(Imagine being asked your job and being able to reply "I'm a nipple tattooist"! Brilliant.)
So I went last Thursday at 7pm to the meeting and lay on a bed in the hospital while the lovely nurse, Jane, tattooed my boobs. I have never had a "normal" tattoo so I am unsure whether they use the same method, but basically....the nurse has a small pen-like stick. On the end is a needle that rapidly goes in and out and dots ink under your skin. Initially we had to discuss what colour I wanted (as I was being observed by many women, I couldn't really make any obligatory gags about "glow in the dark" options or green gingham etc). For those women who only have one breast reconstructed , it is possible for the nurse to "match" the nipple colour as best as she can. For me, she had two blank canvases with little raised nodules on that she could colour as she pleased. At first I sat on the side of the bed with my arms down and Jane drew too large circles where she felt my aureolas should be. She then slowly coloured in the circles using a mixture of browns and pinks. She carefully made tiny semi-circle patterns and little dots creating an incredibly life-like nipple. The very centre of my boobs was then coloured in a darker brown. Meanwhile, as I was lying on the bed, I could see the faces of the observers all telling me how clever it was and how good they were looking.
For me it felt like Jane was holding an electric toothbrush up against my chest wall. I could feel the vibrations of the needle and a sort of buzzing sensation and although they bled a bit, there was no real pain. When she was happy with the result, she carefully dabbed off the blood with a swab and put a square plaster across each boob. I was told to keep my boobs dry for the next 48 hours - rubbing vaseline on them as a water repellant when necessary. Although immediately they looked so much better, they were also very inflamed and the blood created a sort of crust
that took about a week to disappear. I came home and stood in front of the mirror for hours! just in awe that I really do now have such "normal" looking boobs. From a distance, even when naked, you would just never know I have had a mastectomy. You would only comment about how round, pert and cracking my boobs were (even if I say so myself!).
I realise my blog entries are becoming further and further apart. You see I forget that I have this gene now. I have nothing more to write. My journey through this jungle is over and I have come out the other side and can only reflect on where I have been. My priority now is to concentrate on helping the next generation, on helping other women who may need to follow in my footsteps. I want to try and make sure that masses of research into the BRCA2 gene is now carried out so that if my darling Jemma and Ben should have inherited it, then they can just take a simple pill that could paralyse this gene rather than having to have any of these operations. I organised a Black Tie Ball last week that raised over £10,000 for Genesis Breast Cancer Prevention and I have further fund-raising events in the diary.
I want to end by telling you about something I did with the children last week.
To my amazement I have kept my running up and am running 5k three times a week. I follow the same route and this takes me across fields, paths, through a golf course and over two motorway bridges (well over the A34 to be exact). As I run over the bridges I look side to side and see the cars approaching over the hill and under my path. Each car is filled with a stranger going to and from their destinations. I have never met the drivers and never will.
I realise that for some, these bridges and this view is a lonely, isolating and frightening place.
For the suicidal it is a possible escape route from their misery. It could make you feel "left out" of society, purely a witness to the busy adventures that appear to be happening to everyone else. It is a very visual reminder that these
drivers seem to have a "purpose", a destination that we imagine to be far more fulfilling than our own mundane existence. In short, a depressing, noisy place.
Last week I took my children along my running route as a chance to get some fresh air and walk the dog. We came to the first bridge and the children peered through the wire netting and silently watched these noisy cars zoom past. I then had an idea.
I asked the children to spread out and to stand directly in front and above the incoming cars (I am very aware of the dangers of distraction so I apologise in advance for this).
I asked them to start waving.
If ever you are struggling with life or feeling flat and unhappy for any reason. I urge you to take some small children with you and stand on a motorway bridge and to wave.
One by one the drivers began to wave back.
The lorry drivers began to flash their lights. The strangers below us lent forward in their cars and we could see them smiling and wildly waving their hands up towards the children. My children were laughing and cheering loudly every time they got a response. To my amazement about 80% of the drivers responded. Some of the lorries even beeped their horns. These "strangers" were suddenly potential friends, they were people who wanted to make us smile and to make the children feel happy. I also realised that in doing so, they themselves were also suddenly breaking into a smile when they spotted us.
I have learnt that by being kind to others, smiling at others, I have received such kindness in return. We tend to be dubious and untrusting of people we don't know but actually we are all made of the same ingredients and are all striving for the same happiness.
99% of people are lovely.
It is Christmas next week.
I have a 4year old and 5year old who are bursting with excitement.
I may not write again for some time.
I have a new completed body that no longer threatens to kill me.
I have a lot of living to do.
Happy Christmas xx
Well I have just come back from having nipple reconstruction and once again feel it would be beneficial to describe the procedure for those women who may need this surgery.
Big and I arrived at the John Radcliffe at 9am and at 9.30am I walked into the side room attached to the theatre. Mr.Coleman was there dressed in his official scrubs (slightly unnerving) and asked me to get unchanged. As I stood there in my pants, he carefully drew on my boobs, marking out where the nipples would go and making sure the marks were symmetrical! I was then handed a gown and escorted into the theatre.
Now normally I would be awaiting the usual routine of canulas and general anaesthetics but today I was conscious throughout. I lay on the bed looking around the room at the computers and lights and trolleys and general equipment. Mr.Coleman then started to clean my abdomen with swabs then inject my boobs with local anaesthetic and also my side (where he was going to remove a small piece of skin from my scar). My boobs are numb so that was pain free and my side just stung a bit, but once again there was no real unbearable pain. A sheet was then put up in front of my face so I couldn’t actually see what was happening, I could only feel, listen and smell!! All very surreal as I became aware that he was cutting open my boob and then using a laser torch to burn off the surrounding tissue. This produced a rather unnerving sound of burning and I tried desperately to concentrate on Michal Booblie that was ironically playing in the background!!! Images of Christian Grey and that sodding book came to mind as well – “Five hundred and fifty shades of black” more like it! From the disk of tummy skin on my boob, he made incisions and then lifted the skin up, turning it, raising it and stitching it into a risen bump.
Different equipment was requested as nurses hovered like bats over me. I managed to make conversation throughout – but was also aware that I didn’t want to distract Mr.Coleman too much in case he put my nipples in the wrong place or made a third by accident!! After about half an hour Mr.Coleman then walked around the table and started working on the other side. This was the side with my appendix scar on so it took a little longer as he worked out how to keep a blood supply going right to the tip and managed to make the protrusion slightly longer in case the end should die off. The skin from my side was then removed and he sewed me back up. I was very curious by then and dying to see what it all looked like, especially as the nurses were all commentating on how clever it all was, and so I was allowed a quick peep before the dressings were applied.
Well, they are AMAZING!! Just two simple little knots of skin that already resemble the rugged texture of a nipple. Although I have breast fed both my children I don’t really remember ever studying my nipples in that much detail but all I can say is this pair are neat, perky and facing North rather than South. Two rather alarmingly large foam pads were stuck on top and then waterproof dressings applied and then I stood up and walked out of theatre. My dressings are square foams with holes in them to allow the nipples to poke through so not quite as alarming as conical armour-like ones! However, I am conscious that my bra is bulging with foam and for the next 6 weeks I actually have square like nipples. Nothing a scarf or pashmina can’t hide though.
So……..once again…it was easy and nothing to worry about. No pain, only 2 hours in hospital and then home. I can have a bath, swim etc. The dressings will slowly peel off after a few days and I will need my nipple protectors tucked into my bra for the next 6 weeks or so. As with all my operations the waiting and anticipation was the worst bit. My journey is so nearly finished. I am booked into the tattooing clinic in December and that is just to colour in these “knots” that he has made me today.
I tell you, I have the best, roundest, firmest, pertest most perfect boobs in Newbury and even more so now the cherries have been put on the top!
The Twins Birthday
"The Twins" - should I name them individually? there must be some humour there somewhere.... "Patricia" and "Edith"? "Pinky and Perky"? the choices are endless!!!
So it’s been a year.
The last few weeks have felt slightly surreal. I would write the date on my case notes at work and see dates such as 17th May and remember the anxiety I felt as the 31st May was approaching.
Menopause has become part of me and I can’t remember the Claire that didn’t flush or sweat at night! It’s bearable though. The worst bit by far is the weight gain - well I have only put on about 7 pounds but it is a constant battle not to eat every minute of every day. My tummy remains flat but excess weight appears to be sneaking round to my back! Perhaps a "fat back" is something that age naturally brings but it’s not a great look. In all seriousness though I do remind myself that having had a lifetime of Weight Watchers and Slimming World memberships, it is not worth beating ourselves up about. We are here. We are alive and happy, fat back or no fat back!!!!!
It’s as if I have been looking out of my windscreen for miles and then suddenly think to press my windscreen wipers and spray. Suddenly the screen in front of me is beautifully transparent. I had no idea it was dirty until it was cleaned. The sun is brighter; the essence of life is more poignant and exquisite.
I can honestly say it has been the happiest year of my life. I remember when my father was dying he said how he felt "almost in love" with his cancer. I was puzzled by this at the time but now recognise that major surgery or disease actually prompts people into being loving and supportive. I have never felt so loved, so confident as a result, so empowered.
I am loving having a dog.
Margaret, well "Maggie", has become a cherished member of the family. I walk her twice a day and I have taken her to all the dog obedience classes so she is whistle trained and a joy to have. The children climb on her and embrace her and I think she is cathartic for all of us. She has become my shadow and has finally meant that I am doing some exercise on a daily basis. I can now understand why people get so obsessed by their dogs and so devastated when anything happens to them.
I have also started to be a bit proactive in my quest to help others who may find they have the BRCA2 gene. Every 6 weeks I am going to the John Radcliffe Hospital and helping in their "BRA" group (Breast Reconstruction Awareness Group). Women who are about to have a mastectomy and who are frightened, meet with some of the consultants and nurses to discuss what they will need to take into hospital etc and then I stand naked so that the women can actually SEE what you look like at the end of the surgery and the scar patterns etc. There are a number of us "show and tell" women. It is the funniest feeling saying "Hi, I’m Claire I had my surgery a year ago" and then dropping my gown for them to stare at me! But I think it has helped these women and I honestly do like my new body so I feel proud rather than ashamed.
I am also organising a Black Tie charity event for Genesis Cancer Prevention Charity which is the only charity that looks solely at Breast cancer prevention and prediction. Jemma and Ben have 25 years till they may be at risk and I am not prepared to sit back in the hope that someone else might raise awareness and find a cure that may paralyse this wicked gene.
I still look a bit odd without nipples. It is worth noting to those women on this journey that the whole body reconstruction takes years not weeks. I was hoping to have "nipples for Christmas 2011" but actually I will not have them until Christmas 2012. I see my Mr. Coleman at the end of June to discuss how my nipples will be made and then they won’t be tattooed till December.
Nipples continue to be a source of huge amusement. As I have explained my appendix scar runs along my left boob so we are not sure whether we will be able to create a blood supply to the new nipple on this side. If we can’t channel blood through it then it may fall off!!! HOLY MOLY can you imagine?!!
"I’m terribly sorry but could you pass me my nipple from under the table???!!!".
Oh the imagination runs wild! I will keep you all posted........
The nipple tattooing will be another hot spot:
"Cath Kidston design on my right please and green gingham on my left?!!"
What else can I say?
I have learnt and have had to confront the reality that we will all die. Its something that everybody knows but no one really talks about. It is inevitable but how often do we really actually acknowledge that one day you will die. I had to face that and now have a silent understanding that it’s ok. I am going to die but not yet. I hope my efforts in preserving my life have meant I have many more bonus years to enjoy and in the meantime I have learnt to cherish every second.
I will write again following my nipple surgery. Meanwhile, I have a birthday party to organise........
Now I look like I've been in a ring with Mike Tyson but it actually doesn't hurt as much as it looks like it should! If that makes sense?!
Big and I arrived at the John Radcliffe hospital at 7am and we were then seen by my two favorite people -surgeon Mr.Coleman and Jane Quinlan.
Shortly after 9am I was then taken to theatre.
I had got myself so worked up over the last few days leading up to this minor op but yesterday I felt calm and I wasn't frightened. It was agreed that they would tidy up both ends of my abdomen scar, carrying out liposuction to both boobs, open up the vertical wounds running under each boob to tighten up the shape and finally to lipofill a slight crease at the top of my left boob!!
I said goodbye to Big but neither of us were tearful this time and I walked into theatre. That bit is always a bit strange, lying there feeling so normal but knowing I was about to go unconscious. Jane put the cannula in and then we agreed that I was going to imagine Jemma and Ben skiing down a beautiful slope in the Alps. I was expecting to go under within seconds but was happily talking about them serenely gliding down the slope and nothing was happening! I asked Jane whether this was normal and she nodded and eventually my head went woozy and I smiled saying "ok, here we go".
I woke about 3 hours later feeling like someone had darted me with an elephant tranquilizer! But I was in no pain - the lady is a genius!!! As usual my blood pressure was very low and I was aware that I was being monitored very regularly as my arm was grabbed and the pressure gauge wrapped round it.
On either hip I have two big white dressing and already the telltale black bruises are beginning to leak up and down my sides. I have white plasters under my boobs and then just deep bruising running under my arms and round the sides of my boobs. I was desperate to leave the hospital as I knew that it would be far less complicated for the children if I was just there to read them a bed time story and they could see that I was fine. The staff were eager for me to stay overnight as I was still completely exhausted and blood pressure low but having promised to come straight to bed we were off in the car and on our way back to Newbury.
Today I am spending the day in bed - this feels very indulgent but I also recognise that I am sore and tired and perhaps, for once, I need to just give in for a bit.
Considering this bit of surgery was completely for cosmetic reasons, my mother asked me " are you ok? Was it worth it?" to which I replied " yes and defininetly!".
This is a funny journey to be on and I can see the finishing posts just round one more lap. Nipples can not be formed for another 6 months now and then they will be tattooed and then I will run through that finishing ribbon with pride. For other women at this point, post- mastectomy but considering final tweaking and tidying up, I would urge them to do it. There has to be some positives and if we are now given the opportunity to have really neat, pert boobs with flat tummys then I think we deserve it!
On Wednesday I go back into hospital for minor corrective surgery. Tomorrow I once again put the cream up my nose in preparation and start the systematic cleansing and washing with the red body wash.
My left boob is slightly bigger than my right and they poke out at the side a bit so I am having liposuction to reshape them and reduce them a bit. I am also having the sides of my abdomen scar tidied up. Minor ops – only about 2 hours in theatre and I should be home Wednesday night. I have Jane amazing Quinlan as my anaethatist and Mr.Coleman working his magic again, so I know I am in safe hands. Apart from the risks of another general anaesthetic, this should be simple and not life threatening surgery. Why then do I feel so scared?
Come on logic, kick in please.
It’s different this time.
It’s the same ward with the same people but it is different, it shouldn’t be scary.
My head has felt preoccupied all day and it is a relief to be sitting here trying to unscramble it. I am revisiting a place emotionally that I don’t like. I am revisiting the same ward with the same nurses. It feels a bit like revisiting the site of a car crash and I am trying to hang on to logic. This next bit of surgery is purely cosmetic – I could just stay with my new boobs as they are but then that feels silly and I’m not a wimp and I don’t want to be all melodramatic about everything. Why do I feel sick then? Why do I find myself with my shoulders all tense and my hands clenched?
I can recognise a sense of “don’t stick any more injections in me, don’t cut me again, don’t make me hurt”. It is back to that ironic feeling of going into hospital to get broken and not fixed. I want to sit in a foetal position and hug my knees to my chest.
Liposuction surely can’t be that bad? Celebrities have it done all the time don’t they???
It’s going to be fine and just think of the body I will have at the end of it all.
It’s going to be fine.
Medicine for menopause………there is a minefield of advice and recommendations depending on who you talk to.
The oophrectomy in hindsight was fine. The mastectomy was surprisingly fine. Menopause is EASILY the worst bit about this journey and the bit that I gave the smallest amount of consideration. The symptoms of menopause don’t allow you to lead a normal life – they constantly remind you that your body isn’t right, that something very important is missing.
I have dithered about sharing my decisions on this page as I do not want anyone to think that they should do what I have done or that my decisions are right. As always this is just my story and what I personally decided to do. The amazing staff at the Breast Cancer genetics website will clearly say that it is now recommended that it is safe for people in my situation to take HRT. Most people in early menopause take HRT and have no problems with it and constantly praise its amazing benefits. I just couldn’t face it though and although I am sure they are right, it just didn’t sit comfortably that I had my ovaries removed and then would be taking substitute hormones. Nope, although I theoretically don’t have any breast tissue left I would just be mortified if after all this HRT managed to trigger one cell into becoming cancerous.
However, I had an intruder in my head. An intruder that made me irritable, so snappy, so passionately impatient with those people closest to me. I found myself breaking down in tears having shouted at the children, riddled with guilt about what a horrid mother I was being. Being argumentative with Big and just wanting to scream with frustration at the smallest of things. And flushing. I know I have gone on about it but I was having hot flushes every hour – they just got worse and worse. So finally I saw my lovely GP.
I don’t know what it is about my GP but every time I see him I want to howl my eyes out. I sit in the waiting room, perfectly fine and just wanting to ask his advice, I take one look at him and his sympathetic enquiring face and I burst into tears. Its cos he is so nice to me!!! I trust his judgement though and I always leave feeling he has helped me and the correct medication has been prescribed. Having explained how hard I was finding menopause and how terrible the flushes were, he has given me…………...
Now I like to think that I am one of the most positive people on the planet and I certainly don’t suffer from depression but he explained how one of the side effects of Prozac was that it would stop my flushes and also it would work as a thermostat emotionally – preventing these extreme mood swings and making me feel more normal. Well I have been on them for a month now and they are brilliant! Initially I felt a bit disorientated and spacey but sure enough they have stopped all my flushes and I can once again function as normal. Perhaps HRT would have done the same but for me this has been a better option.
A few months later I also found that my libido disappeared. I felt so sexless – no ovaries, no real boobs, dry eyes, nose, grumpy, tired all the time and I also wanted to confront this. I am not prepared to settle for a marriage without sex and so believe how important sex is and so another visit to my GP was arranged….
Mildly embarrassing…yep. But again laughter and honesty have to be the way to go! After a giggle and honest admissions he gave me a testosterone patch (like female Viagra) to try. Prozac and Viagra eh??!!! Now I didn’t see those two prescriptions coming!! But this last year has taught me how we should all be striving to make the best out of our lives. I want to live, I don’t want cancer. I want a healthy, fun sex life, not a marriage of feeble excuses and physical avoidance. I want to embrace this second chance that I now have and to get it right. To love my new body, to remember how lucky I am and to cherish and nurture the relationships around me. So the patch was stuck on!!
Well firstly, it made me laugh that I was wearing it – like having a secret under my jumper! Every time a man walked past me I consciously looked for symptoms in case I had the urge to grab him and rip his clothes off! The first symptoms were that I couldn’t sleep – wide awake at night (which quite frankly would improve the likelihood of Big’s chances considerably as I am usually exhausted by about 9.30pm!). I then had incredibly saucy dreams!! – always about people I knew which felt very embarrassing the second I woke up! But yes, without going into detail, the patch did work – much to Big’s relief!!
I kept the patch on for three weeks. It was brilliant and taught me to enjoy sex again but the lack of sleep has meant I have taken it off for now. It is nice to have in the cupboard though and to know that if again I need some help then I know where it is.
Last week I also saw my plastic surgeon again. He is so nice and just so so clever. I have given my permission for him to use all the before/after photos of my boobs and tummy for research etc and now it is time for the next bit of surgery. Mr.Coleman is a perfectionist and I have agreed with him that we might as well make these new boobs as cracking as they can be! Therefore in January I am going to have them reshaped slightly and slightly reduced in size – to make them more rounded and even more pert!!! – well I might as well after all this!! Then three or so months down the line, he will make nipples and then these can be tattooed – I will obviously write about this procedure in detail when it happens. So no new nipples for Christmas this year!! In fact I don’t think my final boobs will be completed until this time next year. It is a long process but I have little feeling in them so none of the other procedures should hurt.
Talking of lack of feeling – 2 things happened that took me by surprise….Firstly on Remembrance day I wore a poppy like everyone else but was rather surprised when I got changed for bed to realise that I had stuck my pin through my boob!! On another occasion I hadn’t realised that my bra was rubbing and I had a blister under my boob. For those about to embark on a mastectomy – remember to check your new boobs and not to stand too close to ovens or to use hot water bottles etc If you burn or cut yourself, you don’t feel it so be careful!!
I love Christmas and this year I plan to drink champagne all day – infact all week. Last years Christmas was scary and surreal. I thought I was going to die. This Christmas I feel safe, so loved and so so lucky.
Happy Christmas x
Big and I have just come back from a holiday of a lifetime. A chance to spend quality time together after a year of hospital appointments and surgery. A second honeymoon and a chance to have fun without responsibility or routine with some very old school friends who I grew up with. One such friend had decided to marry in Hong Kong and my mother agreed to have Jemma and Ben, it happened to fall within half term and for once our bank accounts were not empty. There were no excuses not to go. So we decided to jump on a plane for a week’s holiday on the other side of the world. Selfishly it felt like we deserved a break from hospital appointments and fear. Although still “nipple-less” my body has healed and once again become familiar so before the next round of cosmetic alterations, this felt a good time to have a major treat.
I ended up exploring Hong Kong with three enormous men. Big is clearly big and the other two men were Somerset farmers who I have grown up with as a child. I have always preferred male company. Stag do’s have always sounded so much more fun than hen do’s. I have decided that actually boys do have more “fun” and laugh more, are more silly and immature and less concerned with appearance and shopping. Well, Hong Kong although very westernised is still made up largely of short people so travelling with these dear friends was amusing from the moment we stepped off the plane.
Immature humour and drunkenness made me laugh until my tummy hurt. I allowed myself to dance on chairs till 4am, to forget responsibility to relax over boozy lunches ignoring “bath time”, “story time” and to just have fun. Pure unadulterated fun. Boat trips, market trips, champagne toasts, massages, manicures, shopping, horse-racing, Buddha visiting, cable cars, beaches, we didn’t stop for a week.
For those of you who haven’t been to Hong Kong it is…tall. Your neck aches at the end of the day from looking up. Incredible buildings that reach the clouds and pavements that put a new definition on the word “busy”.
For the westerners living out there, there is an opportunity to have a life of pure indulgence. The tax is so low that everyone has an obscene relative amount of disposable income. The norm is to have live in helpers who basically appear to do everything! For the western woman there is no need to shop, clean, cook, and walk the dog, to even drive anywhere. Their sole focus can be on self-grooming in the form of manicures and massages and fitness and the world of colonial sports clubs. These women really do “lunch”. Initially I found myself quite star struck and giggly. Imagining myself not in Honey bottom but as a beautiful groomed, slim, trendy, calm and elegant lady living on “Mid-levels”. One night we had champagne in the tallest bar in Hong Kong (and I think the world?!) over looking the lights, the harbour, the tiny luminous dots of the taxi drivers as they weaved themselves up and down the grids of roads.
I looked out of the window in silence just absorbing these new mind stretching sights. I was aware of the silent shifts that were taking place in my brain. No longer would London look so busy or the busiest. The memory of buildings and the norms were all being stretched. Light displays and the pure concentration of inhabitants and activity were just breath taking.
But all this free time allowed me to reflect on so much.
On our final day in Hong Kong, I wanted to explore the other side of this incredible island and to see the world of the locals and the traditions and the pavements that are littered with cardboard rather than designer shops. We had a whole day to kill so hopped on the MTR to Prince Edward, to see the flower markets and the famous bird markets.
The flower market was beautiful. We smelt our way there like drug hounds. Amongst a city of alarming smog and neon lights we discovered streets of real beauty. Flowers that could never be reproduced by man, colours and scents that were far more exquisite than any Gucci perfume found on the other side of the island. Shop windows bursting with extreme colours yet intricacies. And I noticed that there was immediate evidence of appreciation. At the front of most of the hundreds of florists were buckets of individual roses. Closer examination of these buckets revealed that someone had taken the care and the time to carefully wrap each bud with fine netting, capturing and containing the perfection of each flower. Unlike England where most supermarket bouquets contain at least three stems where the bud has carelessly been snapped off, these flowers were carefully protected and appreciated in a simple yet symbolic way that made me notice. The poorest Chinese woman who had clearly worked an unimaginable day of real labour were spending there precious pennies, not on clothing or shoes or technology, they were spending their money on bunches of flowers. Flowers they could take home and place on their tiny balconies on the 111th floor, in homes that are so small they resemble kennels not houses. But these tiny buds were encapsulating real beauty and surrounding them with treasures of a far more valuable kind.
Rather than smelling our way to the bird market, we could listen and follow our hearing. The noise was incredible. Hundreds, no probably hundreds of thousands, of tiny birds all contained in small wooden often individual bird cages lined the streets.
Previously I have never been a fan of birds. I still hate the way that an animal that has the unique and enviable ability to fly across the open skies is then cruelly contained and restricted. It remains something I disapprove of but that day did teach me some lessons that I will take to my grave.
Chinese people don’t seem to smile much. The taxi drivers that I met during that brief week had frowns on their faces and were not interested in even making eye-contact. The maids in the hotel would scuttle into the elevators and look fiercely at the walls having hammered their required floor button with a clear impatient resentment. They also always appeared to be in a hurry. The drivers were keen to throw you out of their cabs or cram your bags into the boot in a record breaking time before joining the carriage way with an impatience that felt rather death inducing every time! They drive with their heads down elbowing the neighbouring car with reckless disregard of any driving laws or regulations. Positively terrifying most of the entire time to be honest. Your plate at the restaurants is cleared whilst you are chewing your final mouthful.
But the bird market, nestled within the busy grid of streets away from the designer shops was a place of complete serenity and opposites. Initially I was struck by the sheer noise coming from the market, the auditory volume of the streets, the noise that countless flocks of birds can make. The smell of bird poo and the dirt and dust around the endless open mountains of bird seed and bird paraphernalia. But if you stop before your enter the market, you notice that the locals are not feverishly arguing and grabbing at the stock with a desperation of bartering that occurs at every other market. Instead the customers are generally old Chinese men with faces of serenity who look almost smug as they slowly peruse and peer into the tiny bars of the cages. I stopped and sat on a wall watching them. It became apparent that many of the men were holding meticulously woven and clean cages that they hadn’t just bought or wanted to sell but that they were holding with pride and with a sense of real social status. They were not flashing the label of a designer product or trying to sell you something whilst armouring you with flattery and cold refreshment. This tiny microcosm had discovered a secret, the priceless, the uncopiable, the beauty of nature and of life.
The Chinese man that caught my eye was about 80 years old and his face and body were brown with dirt and engraved with experience. He was lifting up his tiny bird cage and peering into it with a face of pure enlightenment. His tiny eyes were as round as they were capable of getting. His pupils enlarged and absorbing every trace of beauty that they could retain and capture. He was smiling with a sincerity that mirrored pure happiness and enlightenment. He was looking at a yellow bird. A small yellow fluffy bird that was picking seed from the tiny but noticeably beautiful ceramic birdseed container that had carefully been attached to the side of the wooden cage. It was just a bird, like all the birds that continually inhabit our gardens at home, like all the birds that fly past our windows every second of the day. It was whistling and whistling a very similar sound to the ones that whistle in our gardens that almost disrupt us in the mornings and sing to us in the evenings. But this old and very wise Chinese man had stopped and taken the time to really look at it and to listen to its call. To contain it, perhaps only for a short period but to appreciate it and to wonder at its life and the magic of its existence.
To look at its tiny beak and to smile at the wondrous whistle and song it could effortlessly sing. This was life in a cage. A priceless entity that even the Chinese can not copy and reproduce.
What feels very potent to me now is that I am once again sitting back at home in my study in Honey bottom. Its 5 o’clock in the morning as my body clock struggles to find normality. But as I tap away at these keys, I can hear the sound of bird call out of my window. I have brought back from this amazing holiday, a suitcase full of fake bags and watches and presents but also an awareness once again of what really matters.
I have saved my own life. I have been given the opportunity to appreciate these new sights and to embrace the things that are really important in life. For that tiny yellow bird was singing such an important message. It is not what we look like and what scars are drawn across our bodies. It is not how much we earn, where we live, what cars we drive. What is important is our contribution to this world. Appreciating the tiny quiet song of the yellow bird and making sure our own song is as beautiful and as priceless.
“Hi Claire, wow you look great” – awkward glances whilst the speaker tries desperately to not look at my new boobs.
“Its great to see you” – their eyes dart from my eyes to my boobs.
“Umm, you, umm they look so real” – I raise my eyebrows whilst they go bright red and eventually I rescue them from their pool of embarrassment……..
I love my job. I work at a Primary School for the Hearing Impaired called Mary Hare School. It is a tiny school with around 25 pupils who are all profoundly deaf but who are nurtured and taught with such personal concern and care. I have only worked there a year – only ten hours a week, but they have been so incredibly supportive and have sent me endless flowers/presents/cards etc whilst I have been away.
It felt weird to be back. Life so nearly returning to the identical routine. Did it all happen? Did I have all those operations? Are they really over? It feels like they didn’t happen and yet I feel such a different person.
It’s been a funny two weeks. Firstly, I am now the proud owner and am completely smitten with……an 8 week old Golden Retriever puppy. I have always wanted a dog and now just felt the right time – both children out of nappies, one at school and a reason for me to now undertake regular weight-bearing exercise. The children wanted to call her “Margaret” which had Big and me in hysterics (especially since their goldfish are called “Colin” and “Frank”)! I then had an email from the Breast cancer support centre enquiring about my blog and realised they were called “Maggie’s Centre” – “Maggie” it is and she is affectionate, loyal already and a complete joy to have in our home. I find myself stroking her in a quiet hypnotic state and it is such a good stress relief. I can silently organise my thoughts whilst at the same time meet the eyes of a puppy who is gaining trust and companionship with me.
Last week I had an appointment back at the Genetics Department in Oxford. My GP had arranged a check up so that we could talk about where I go from here and whether or not I was a cancer magnet to any other forms of cancer and in which case what further preventative measures I could take. I was looking forward to the visit and to see Dr.Sulieman again. She was the lady that quietly opened my results envelope back in October and given the unenviable job of telling me I had the gene. She has a quiet disposition and will often nudge her chair forward, closer to you, leaning forward in a nurturing manner that makes you feel at ease and relaxed. She came out to the waiting room beaming, clearly pleased to see me. Dr.Walker later walked into our consultant room greeting me warmly with “Media Claire!!”. Their referral rate has gone up and they were obviously pleased with the positive publicity I had managed to attract. I was able to reflect how far I had come in the last 9 months, how different this visit felt compared to the last. I couldn’t help but ask her:
“NOW what is my risk of breast cancer???”
She smiled in a knowing and gentle way “2%”!!
Now that felt better…….
She went on to explain how my risk of ovarian cancer was similar and certainly did not warrant any concern. I felt very smug. I went on to ask her further questions about Jemma and Ben.
It is felt that IF they have the gene, they will not be at risk till they are in their early 30’s. I think we have consequently agreed to recommend to them that there is no point them getting tested before then. I want them to grow up knowing they may have the gene but that it’s not a big deal and certainly not a death sentence. As I have described before, I am grateful for the precious years when I didn’t know I had the gene mutation and I don’t want Jemma to have to even think about the possibility of breast cancer or anything the gene may provoke. For Ben, if he had the gene then his predicament is much better than I had realised. His risk of breast cancer is still raised but only to about 7% and although his risk of prostate cancer would be much higher, he could have the blood test to monitor his PSA readings (Prostate Specific Antigen) on a yearly basis to monitor this. More importantly Dr.Sulieman kept pointing out that my two littlies are not at risk for another 25 years and hopefully by then the whole scenario will be so different. If Jemma is then found to have the BRCA2 gene then I am hoping she will be in a position to look at me with utter disbelief that I had to take such drastic preventative measures when a simple pill was now available!
I have had numerous emails from women in America indicating that new studies are suggesting a higher rate of skin cancer in BRCA patients – statistically unproven at this point but already raising eyebrows. For peace of mind really, it was agreed that I would be seen by the Dermatology department once a year so that any present or future moles could be checked.
I was then seen by the neighbouring dermatologist who carefully examined my entire body. At one point I had to smile…..
He was using a circular hand held magnifying glass to look at each mole and to check the outline. Having examined numerous moles he found one on the lower part of my tummy and said:
“Keep an eye on this mole, it looks like it may be changing shape” to which I replied:
“Could it look like that because four months ago it was up by my cleavage???!! He laughed and then silently nodded. The miraculous nature of my surgery clearly being recognised!
I drove home smiling.
I have also done another bout of publicity. I had a long live interview for Radio Berkshire with Sally Taylor. .She is an amazing woman who is the face of South Today BBC news (television). She herself developed the beginnings of breast cancer and quickly took preventative measures by having a double mastectomy. It was nice to be interviewed by someone who clearly knew what it all felt like and her constant references to this blog has led to numerous new emails/hits on the site. The messages I receive continue to amaze me. Women using this site as an easy way to explain to friends what the gene mutation is all about. Women who are about to embark on the operations or have just found out they have the gene or are awaiting their results…all so positive and I can honestly say it feels lovely that my journey may now be helping so many other people.
My menopause symptoms continue to be dreadful if I’m honest. Now that I’ve had the mastectomy I know I am eligible for HRT but it just feels crazy to have my ovaries out so as to not produce hormones and then to fill my body with Hormone replacements. The argument is that I now have no breast tissue that could ignite but I can’t help but recognise that it is likely that there are a few minute breast tissue cells left and I just don’t want them to go on and develop breast cancer. I have said to myself I will give it a year and if the sweats and mood changes continue then maybe…… Actually, if the mood swings don’t improve then I think my husband might hold me down and forcefully stuff my mouth full of hormones so I am easier to live with!! I am aware that one minute I am crying with sentimental slush about my perfect husband, daughter, son, puppy, cottage etc and the next minute screaming at the children to get dressed, shouting at the puppy to stop eating the kitchen table and scowling at my husband!! Hmmmmmmmm maybe HRT isn’t such a bad idea?!
We have had a lovely summer as a family and been on numerous camping trips. During these trips I have shared a king-size blow up bed with Jemma and Ben (If you met Big then you would know that it was virtually impossible to share an inflatable anything with him as every time he got on the bed, my nose was significantly closer to the roof of the tent!). To hold my children whilst we were all snug in our sleeping bags listening to the rain on the tent or watching them toasting marshmallows on the camp fire, allowed me time to absorb my fortune and to slowly recover emotionally from the ordeal of the last half of the year.
I am seeing Mr.Coleman again at the end of November to arrange nipple reconstruction so I will write again then.
I am aware that over 25,000 people are now following this blog.
I feel very humble.
It’s early, in the 5’s and I’m hot.
It starts in my toes, just a little tingle, a little warning sign and then it begins.
Hot blood runs up my veins and through my limbs. I can visualise it in my head as it happens. A tree of arteries across my back that becomes flooded with heat. Immediately spots of perspiration try pathetically to compensate. My body rapidly becomes all clammy, sticky, I feel my face flush and the back of my neck drip. I instinctively want to almost start panting and find myself becoming restless and pacing round the room.
It doesn’t sit comfortably inside my head either. It is a reminder of my interference. It feels as if my body is suddenly needing something that it can’t find and instead responds in panic. It’s not right.
I’m not sure what I could/should/shouldn’t take. I think I could now have HRT as theoretically I have no breast tissue left (or very little). But I have had my ovaries removed so as to remove all hormones and to now just replace them all artificially?……seems as bit crazy.
And if there are just a few cells of breast tissue left and the HRT ignites my gene then ………….boom…….., I have triggered something that may lead to cancer.
I think there are plant based substitutes available but the cynic in me just feels the doc would have prescribed them if there was any real evidence that they worked.
I have interevened to such a ridiculous level and now surely I should leave nature to rescramble and to heal me?
But I’m hot. Most of the day and almost all night…..
Today I had my 8 week check with Mr.Coleman to see how I was healing and what further procedures I may need.
I always get a funny feeling when I walk back into the John Radcliffe hospital now. I find myself crossing my arms and scowling.
I feel safe there but uncomfortable.
I don’t want anyone to operate on me again and yet I fully trust all the staff and the plastic surgery department.
Anyway, it was nice to see God (Mr.Coleman) again. I felt almost proud of myself. I wanted to somehow show off to him and say “Look, haven’t I done well?? Aren’t my tummy and boobs great?”. I pushed my skirt down a bit so he could see the incredible scar that runs from hip to hip. Already it is fading and now I just have a pink thread-like line running right across my bikini line and hips. I knew that there were a few stitches that he needed to remove as they were poking out and were really spiky against my clothes but he did this and then sat back and admired his surgery.
I then took off my top so he could look at the scars around my boobs. Again there were two stitches that he needed to remove but my boobs are completely numb so I didn’t feel a thing. One of the stitches gave me the heeby-jeebies though….it was on my left boob and it was obviously there to make sure the circular tummy skin remained attached to my breast skin (basically where my nipple was). God carefully got hold of the end of the stitch and to my horror pulled out about 15cm of nylon that was inside my boob. I was slightly concerned that the whole disc would then full off and the contents of my boob sort of slither and slip out onto the floor but unsurprisingly this didn’t happen! The circular scars around my boobs are all healing nicely and in some places they are literally invisible.
Both my boobs are around a DD-cup but with a critical eye they are slightly wide and sort of bulge out at the side abit (this is only noticeable if you really try and measure them, at a glance they are fine). God explained how we are now going to wait till November to see whether they drop a bit and whether this shape alters when the final bit of swelling goes down. I don’t think I am going to need lipo-filling or anything though – if we want to be supercritical he may alter the shape slightly when he creates the nipple but at the moment we need to wait a further 3 months to let nature reorganise itself a bit. My boobs feel very soft and natural though and I think everyone is delighted with the result.
Emotionally I feel stable and content. Last night I went out for a beer with an old school friend who I haven’t seen for a couple of years. It felt surreal describing from start to finish what has happened since November but I also felt proud.
So that’s it really! I will write again following my appointment in November and then describe the procedure needed in order to create nipples and the final tattoeing that will eventually take place. I do not want to bore you with waffle about my everyday life and want to keep this blog very specific to my experience as a BRCA carrier.
I have binned most of my old underwear (off-white pants that I think I must have owned since primary school and beige bras that I honestly did mean to wash by hand but that somehow snuck their way into the washing machine every week and now are unrecogniseable). I now only wear matching brightly coloured underwear - something I think all women should do as it makes you feel a million dollars no matter what you are wearing. And I can tell you I am almost completely healed and I am happy.
Life is good.