“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. 

 


Comments

Mercedes
05/09/2011 23:42

25,000 people follow your blog because you are an inspiration! I am sure I speak for all of your followers in saying how marvellous it is that your risk of cancer has dropped from 90% to 2%.

PS can we see a picture of Maggie pls :-)

Reply
14/09/2011 20:53

I just found your blog. As a fellow cancer survivor, my thoughts and prayers are with you.
Also...Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blogs Lists” with over 1400 other personal cancer blogs at www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources, reviews and more.
If you have not visited before or recently, please stop by. If you agree that the site is a worthwhile resource for those affected by cancer, please consider adding Being Cancer Network to your own blogroll.
Now that you are listed, you can expect to gain a wider audience for your thoughts and experiences. Being Cancer Network is a place to share and communicate.

Take care, Dennis (beingcancer@att.net)

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