Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/
Wednesday, 10 June 2015
Why Breast Reconstruction isn't for me
Coke Floats & Chemo: Breast Cancer Acceptance, please, not Awareness: Why breast reconstruction isn't for me
Why breast reconstruction isn't for me
Am I the only person who, whenever I hear those three particular words together Breast and Cancer and Awareness, wants to roll my eyes to the heavens and find myself heartily wishing that Scottie was in those clouds and eagerly about to beam me up? Maybe the phrase served a purpose 20 years or so ago when nobody liked to mention the "C" word, and women weren't reminded during every scroll of their Facebook feed of the importance of regular self-examination.
We've moved on now though, and "Breast Cancer Awareness" has become a meaningless, overused and cliched excuse to talk about tits in the most puerile, insensitive and cheap way possible online, all the while pretending that it's somehow showing women like me compassionate solidarity. Hello? It's not.
If you want to hold a coke bottle between your breasts, feel free, please go ahead, but don't tell the world you're doing it for me. Even if I wanted to, I'll never hold a coke bottle or anything else between my breasts ever again, because I haven't got two of them anymore.
Really - only one? I see the question so clearly in their eyes all the time, and then there's often the inevitable follow-up question carrying a very subtle note of disapproval - "So why didn't you have a reconstruction.... didn't you want one?"
There is a very clear but usually unspoken sub-text. I'm somehow letting the side down because I'm lopsided. I obviously didn't do it properly, I'm still broken and I've failed the breast cancer contest.
Losing a breast was hard, but it was by no means the biggest thing I've lost since I had breast cancer, nor was it the hardest. Losing a breast was easy peasy lemon squeezy compared to three lots of major surgery, five months of chemotherapy and the third degree burns I got from radiotherapy. Yes, I cried for over a year quietly and privately about my mutilated body, and I couldn't bear to look in a mirror for a very long time, but it was still easier to cope with than the treatment.
To be honest, I was horrified by my own emotional reaction to it. I was no beauty queen, I was well past my prime and I'd always considered myself the least vain person imaginable. In those last few weeks before the operation I was very matter-of-fact about the whole thing and I thought that that practical pragmatism would carry me through whatever traumas lay ahead.
Instead I was crushed. Totally, utterly and comprehensively. I was a wobbly, pathetic, mushy mess about the whole losing a breast thing for months, in fact probably considerably longer than that.
I also felt overwhelmingly ashamed of being so ridiculously fragile over the whole missing breast thing. I didn't tell a soul, I thought they'd laugh at me for being so bothered about it.
At first, I fully intended to get a new breast, but it wasn't ever going to be easy, and it would have meant that I would have been even more significantly mutilated. My breast cancer was in both breasts, and in the one they removed the tumour was so large, 14.4cms across, that they had to remove so much flesh that they struggled to leave enough skin to stretch across my ribs. My sharkbite-like scar is 12 inches long, trailing from where I once had a cleavage, past where my boob used to be, then under my arm and it finishes about three or four inches around the corner, halfway to my spine.
I had developed a serious infection just before my mastectomy surgery, which completely ruled out immediate reconstruction, and that wouldn't have been an option anyway - if you are going to definitely need radiotherapy, they normally won't even consider reconstruction beforehand.
Now, though, I'm so pleased I never bothered, and that's something most people simply can't fathom. So just in case you're reading this desperate to know why but far too polite to ever ask me, these are my reasons for staying "Half Flat and Fabulous".
- My boobs tried to kill me, they aren't my friends. Why on earth would I want another one?
- I've been dealing with having a very serious illness for over just over three years now. I've had extensive surgery, chemo, radiotherapy and I'll be on quality-of-life changing drugs for the rest of my life. I so love the good days. Why would I want to waste three more precious months of my life feeling like death-warmed-up while recovering from another operation?
- I love not having to wear a bra ever again.
- To create a new breast for me would entail an 8 hour long major operation with very real risks attached.
- The operation itself is gruesome, with transplants of flesh and blood vessels from other parts of my body leaving new and livid sharkbite scars. There are loads of potential complications, and the whole thing might not be successful, which would mean I'd be left battered, bruised, scarred and weakened and without a brand new breast to show for it.
- What happens if the cancer came backt to where it used to be? All that new flesh plonked on top of where it might be growing could mean I wouldn't notice any new lumps in time.
- Reconstructed breasts often feel very different, many women have little or no sensation in their new breasts after reconstruction. For me, the risk of going through all that surgery to achieve a new breast that might have no sensation in it whatsoever seems a bit pointless.
- Before I had breast cancer, my body image was appalling. I always felt so fat, so ugly and so unattractive that I felt I was an "also ran" in the human being stakes. Like many women, I felt that unless I was gorgeous and slim I had no worth as a person. Since I was diagnosed, all I've had is bucketloads of love and warmth and goodwill from people. For the first time in my life what I look like simply doesn't matter a jot, I now understand that other people value me for so much more that what they can actually see, and I've learnt to feel good about myself for the first time ever in my life. I have been so swamped with kindness and concern that I have finally realised that if they can accept me regardless of my looks, I can and should be happy with who I am and what I look like. My self-esteem and confidence are no longer linked to my superficial appearance or the number of breasts I own, and hallelujah for that.
- It's still wonderful never having to wear a bra again.
- Ten months after my initial diagnosis, they found that my breast cancer has spread to my spine. Staying alive and being happy now transcends all else. I have other and different priorities, and pretend breasts don't even feature in my life anymore.
- Now when I look in the mirror I'm proud of what I've been through and I'm happy with who I see. My scar is now my badge of honour, and it's part of me and who I have become. I actually quite like it now. It took a long time but we got there.
- Having a new breast can't turn the clock back and undo the past three years. It won't make everything all right again or wipe the slate clean, and thank goodness for that. Cancer has changed me, it has altered the way I look at things, sometimes in a good way and other times not so good, but this is me now, this is who I am.
My reasons are right for me, but they won't be right for everybody. Maybe if I'd been prettier or thinner, maybe if I'd had the option of an immediate reconstruction, maybe if my cancer hadn't progressed to my spine, I too might yearn for a new breast to feel whole again.
For me though, I've never felt as whole as I do now, and that's a great feeling of liberation. I no longer feel pressured to look fabulous, I'm not in that pitiful self-imposed race of gorgeousness anymore. That was a race I was never ever going to win, so I now don't have to set myself up to fail every day even before I've got out of bed.
Reconstruction is the absolute right thing to do for many women, and their decision is every bit as valid as my decision is. As long as it is really their decision and they don't feel pressured by societal norms and the expectations of conformity.
Breasts are perceived as an iconic symbol of being a woman, a feeling that is sadly echoed in every silly attempt to hold a coke bottle in a perfectly structured cleavage. That's why women like me, whether we opt to have a reconstruction or not, are hurt and offended by so much of the "awareness" stupidity. Breast cancer acceptance is what we'd really like, but the Facebook photos of whatever that looks like would never quite catch on.
Are you on Facebook? If so, have you seen the
Coke Floats & Chemo Facebook Page, offering support, information, news and hope to anyone coping with cancer, sharing the best relevant posts nearly every day?
I also have another Facebook Page called The Special Parent’s Handbook. It’s full of information, advice and support for families of special needs children
If you'd like to read my most recent post on my Special Parent's Handbook blog, it's about taking the stress out of cutting children's fingernails
Yvonne Newbold named by HSJ as a Top 50 Inspirational Women in Healthcare 2014
Author of "The Special Parent's Handbook"
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