So, I have been very quiet on here for some time.
I finally had my surgery in Leeds in November just gone, and without doubt it is one of the best things that I have ever made the decision to do. It was however one very big procedure and it has taken me some time to lick my wounds, and get my head around the changes my body has undergone.

I don’t for a minute regret the decision – I feel and know that I am lucky to be alive, to be well (as much as I can be with EDS) and not to have already ended up paralysed or dead (something I wasn’t made aware of until after having surgery).

I will be writing a series of posts on the processes involved in having the surgery, but today I wanted to start with where I am now – and the other big decision that looms over my head.

I had always told myself that having a preventative double mastectomy (I carry a breast cancer gene mutation) would be pointless to even think about until I had my neurosurgery. There was no point going through the turmoil of chopping off two very important parts of my body until I knew I would be alive long enough for it to really make a difference. I spent going on three years fighting hard for neurosurgery, and during that period of time, BRCA2 slid to the back of my mind and got shut away in a box marked ‘saved for later’.

The odd thing about having the neurosurgery is that I no longer have an excuse to ignore the two rather large problems positioned at the top of my torso. The stress of 6 monthly testing (they found an area last time they wanted to keep an eye on) affects me particularly badly having witnessed a very close friend die of cancer, and the more poking and prodding that takes place, the more I feel its time to start thinking about surgery.

I would love anything other then surgery to chop my two girls off, but logically it makes sense to follow through – I have so many other health problems that adding cancer to the list just seems plain silly if I have a way to prevent it. After all – total strangers and so many caring friends and family have just contributed to a surgery that has literally saved my life – I feel that not having this surgery sort of throws that back in peoples faces.

I am by no way ready to follow through just yet, but I am in a place where I am starting to figure out my headspace and what I will need before surgery.
I am researching, talking to professionals, other BRCA carriers and generally perving at pictures of different reconstructions – its all boobs these days!

I know that to feel ok about surgery, I absolutely need to get ahead of my very distorted body image, and find a way to judge myself on the person inside my body, and not on the body itself. I need to connect to the person I locked away decades ago and allow her to be judged on her strengths, not her body, not how she achieves and certainly not her sexuality.
Quite how I do this, I have absolutely no idea – but I know full well that chopping off the only parts of me I have never hated will have a serious impact on my mental health if I don’t.

I also know I need to start talking about it. Start building a support system full of wonderful and supportive people who will stick by my side on days where I can’t pretend to be ok anymore. I need all the bad boob jokes, all the silly conversations and funny upsides to living with ‘imposter boobs’. I will need people prepared to hear me cry, and prepared for the very dark humour that so often follows.

It was so easy to lock the BRCA box and throw away the key – but I know that if I leave this until its too late, I won’t forgive myself.

So my second boob MRI is this Thursday, and I am intending to ask to talk things through with a surgeon in the near future. I want to know what reconstructions they would be prepared to offer an overweight bendy body like mine. I know I want a flap reconstruction (using my own tissue taken from other parts of the body) – but I don’t yet know if its something they will consider for me. I know the recovery is much harder, but I also know they will feel more like my own, with the added perk of perhaps changing with weight fluctuations like my own little ninjas do.

With so much to think about, I will leave you with my latest BRCA2 artwork… I will be back very soon with more on the rest of my body and surgery!

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