My Guest Blog at Genesis UK

Hi everyone again,

I am guest blogging at genesisuk.org this week and telling my story so check out the link. Thanks Karen for the hook up.

Here is the link: http://www.genesisuk.org/blog/

Genesis Breast Cancer Prevention is the only UK charity entirely dedicated to the PREDICTION and PREVENTION of breast cancer. 

Genesis' established a purpose built breast cancer prevention centre, Europe's first, was completed in 2007 and they aim to support its services by sponsoring people and science.

They will achieve this by providing a strategic programme of clinical research, the UK's largest family history clinic, plus a training centre for specialists in all breast cancer disciplines.

Genesis promotes breast screening and early diagnosis, and research into new treatments to stop breast cancer in its early stages.

Thanks for reading,

OBB

FYI - I posted the text below which is pretty long in case the link becomes unavailable. Wiorth reading but of course I am bias. :)))

My Story Part 1

I started my blog following my first mastectomy for a number of reasons. The first being that as I was so far from family and friends, I needed a way to let everyone know what was happening without sending out dozens of emails and phone calls. My other reason came from my desire to help inform and empower other young women like myself – those free from cancer and also those young sufferers like myself who belonged to a very small exclusive group within the breast cancer world.

When I was diagnosed, I was like any other 31 year old woman – my worries were fairly surface and breast cancer was not something I even remotely thought about. However having been through what I have now, I have had readers tell me that through reading my story it made them more aware of their own body and realise the importance of noticing changes.

Cancer is not something that only affects older people. It is indiscriminate and terrifyingly ruthless in its pursuit. So when the opportunity to write for Genesis came up, I jumped at the chance to tell my story.

I always thought that if I can prevent one person from going down the same road that I did then I was having a positive impact. Given the focus that Genesis have on prediction and prevention, I was happy to align my experiences with them. I can only hope that with the all the vital research that Genesis fund, my daughter will not have to worry about this disease. That is my wish.

Nearly two years ago, I was like any other new mother with a baby who was nearing the one year mark. I was consumed by the daily routine, distracted by sleeplessness and thinking everything in my life was pretty idyllic. I had been living in a new country for a year and my husband and I were so utterly in love with our baby girl. I obviously knew about cancer, specifically breast cancer and remember the pink ribbons everywhere in October of that year. But that is where my knowledge and connection to the disease ended. No one I knew personally had suffered from it and all I knew was that it was the most common cancer amongst older women. I never ever thought it would happen to me.

I remember the evening I noticed a massive lump in my right breast that showed up one day.  It definitely had not been there the day before and I was breastfeeding so I didn’t worry too much. Of course I worried as anything weird in our bodies is distressing especially for me – the obsessive hypochondriac. I went straight to the doctor the next day who sent me straight in for a mammogram and ultrasound the following day.

Good news!

Nothing sinister could be seen from the photos – it was just an infection. Now I go over that day thousands of times – what if they had seen something different, what if they had caught it then? Why could they not see anything despite the fact a sinister creature was lurking? And what if I had never had this infection in the first place? Would the cancer have lain hidden for even longer and become an immediate death sentence? I have realised that going back and forth over the things you wish had been different is a fruitless exercise. The end result is always going to be same – cancer.

My case was no different. Five months after being treated for an initial infection that wouldn’t go away, they finally intervened surgically and a routine biopsy changed my life.  The weird thing is that they said that my original complaint seemed unrelated to my actual breast cancer but I don´t know. That boob was doomed from the start! But I do take some comfort in thinking that by having my daughter when I did caused a chain reaction of events that got me to a diagnosis. I might have never found it until it was much later and in my case, months would have made a huge difference to my outcome.  And to be totally honest – I didn’t pay that much attention to my breasts nor did I check them regularly. So in my mind I feel that my daughter saved my life in a way – is there no greater gift than that?

Unfortunately, the reality of a cancer diagnosis provides little other comfort to the sufferer. I always tell people that I was living in a new country, had just become a new mother and suddenly was also a breast cancer patient – all by the tender age of 31. It rattled my world to the core – it scared friends and pushed some of them away.

At my age, our greatest worries were about choosing where to holiday or what car to buy next. Very few of us were fighting for our lives and dancing around the room with our own mortality. But when your world comes crashing down on you, it really shows you what the people in your corner are made of.

There was so much love and support from all over the world which ensured that I rarely ever felt alone. It seemed like there was a new card or care package in my mailbox every day and people came from all over to see me and help. And let me tell you Norway is not really the easiest place to get to. I recently read an article about a study that found that women with strong families and friends around them tended to survive breast cancer more than those without. I was definitely not short on support and definitely think it helped me deal with my diagnosis and treatment.

To be continued…

Part 2

If we break it down simply – cancer plain sucks. I had more good days than bad but I still felt a lot of anger over the whole thing. I still have those moments nearly a year on from finishing my treatment, when I look in the mirror after getting out of the shower. I see these two long red scars across my chest that still ache with loss and pain. I still don´t feel at ease touching them. I often ask myself how I got here? How did I go from a bubbly 31 year old with a long mane of hair and two perky breasts to this? I know after I eventually have reconstruction (In Norway it is not common practice to do mastectomies and reconstruction in the same procedure and we must wait years for new breasts) I will feel better but never ever the same, not even close. I will always feel slightly uncomfortable, slightly asexual and slightly different from everyone else. And no matter what they can do surgically – I will never ever have nipples again! I cried on the operating table for both of my separate mastectomies – cried for my youth and for my femininity.

Now I am focusing heavily on the bad things here but don´t get me wrong, I am a positive person and I almost always have faced my cancer head on and found the good in nearly everything. Cancer taught me that I am so much more than what people see and it taught me about what truly matters in life (hint: it isn’t that next promotion at work, the size of your savings account or the next it bag). What matters is your health and the people that surround you. We all need a roof above our heads and food on the table but beyond that we need love.

I often thought about all the boys I had dated over the years and wondered how they would have dealt with this had they been my partner through my cancer journey. Then I think of my husband. I could not have had a better man by my side. From that first moment when he picked up the phone and a nurse told him he had to come now as his wife had just been told she had cancer – he was there. Solid as a rock. My refuge and safe place when the world around me was churning pure chaos. He told me I was beautiful the day I shaved my head. He told me that if losing my breasts meant I would stay here in this world with him, it was a small price to pay. With or without my body intact, he would love and cherish me. He has stayed true to his word and of course there have been some tough times, but I am so grateful that i had and still have him with me to weather the storms and anything else that lurks down the road of life. Because that is the thing about breast cancer that people who have never had it don´t understand. Once you have it and do everything possible you can (double mastectomy, axilla lymph node removal, 6 months of chemo, a month of radiation all topped off with 5 years of hormone therapy in my case), there is little relief at the end. We don´t magically return to our original selves the day after our last radiation session.

There are losses to mourn and traumas to overcome. But perhaps what is worst is the fear that  it can come back even if you do everything right and there is very little you can do about it. That is the bitchy and unfair side of breast cancer. Especially for those of us with triple negative cancer which tends to have the worst relapse reputation. Of course my body would thrive to over achieve in the world of cancer and be the more rare and deadlier kind. Yeah me! But we breast cancer patients try to forge onwards and accept that uncertainty is just par for the course – or course.  Acceptance is huge and like my diagnosis,  I have learnt to accept that I cannot change my Ki67 values or tumour grade. What I can change is how I decide to live my life and how I interpret and react to information.

None of us know which women will be okay and which will not be so lucky but god do we wish we had a crystal ball to answer this dreaded question. The fear of the unknown in the world of cancer is awful. Every time I see my oncologist all I want him to tell me is that i am going to be okay but he can never really ever tell me that. They don´t know, we don´t know – no one knows but those anonymous little cells floating around our bodies deciding what to do. Makes you feel very helpless at times. I try to not waste more of my life worrying about relapses but it is so hard not to. I don´t want to die of this awful disease. I want to live a long happy life and say goodbye to this world, wrinkled and grey in my bed under a warm duvet, surrounded by my people. That is what all of us breast cancer sufferers and survivors want.  A chance to live.

So that is just a bit of my story. I could write about it for pages and pages and I have even left out some of the bigger parts of my story. There just isn’t space for everything and cancer is a long long story and it feels like mine continues on and on. I know there are still hurdles to overcome, operations to do and hard conversations to start. My cancer story is complicated and the web it consumes seems to grow by the day. But it doesn’t mean I or my family wont overcome it.

You hear that cancer? Yeah that´s right – I think you can just bugger off.

OBB (I began my blog as the One boobed bandit but amended it to 0BB as it the number zero).

OBB is now 32 years old and living in Norway with her little daughter and husband. Following her treatment for triple negative breast cancer, she is now cancer free and back in the working world.