Life After Getting My Head Screwed On Properly!

Life After Getting My Head Screwed On Properly!

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!

BRCA2: The Journey Begins

As many of you will have read, I decided to undergo genetic testing a few weeks ago. We have significant family history of breast cancer on my dads side, and are of Ashkanazi Jewish decent – this is a big risk factor. Due to this combination both dad and his sister were tested for the breast cancer genes, and sadly came back as BRCA2 positive.

The choice to go for testing was not an easy one to make. I did my fair share of burying my head in the sand, but no matter how much I tried, the thoughts would randomly pop into my head. Fear of the unknown, fear of having the faulty gene, fear of my siblings having it, fear of cancer – just lots of different flavoured fear really. I would be in the bath, or driving down the M1, and all of a sudden my mind would flip onto it, and I would find myself going round all of the scariest scenarios possible – namely that I would test positive, and life as I had planned would no longer be an option.

At the just shy of 29, my risks would not have been out of the ordinary – for breast cancer, the risks start climbing at 30, and around 40 for ovarian cancer (at least thats the information I’ve been given). ¬†However, it is more then just the risks to me I was worried about. I have always wanted a family, and although I am free and single at the moment (rather perfecting the art of the crazy dog lady), a positive result would have implications as far as my future children would go. So, knowing full well that I couldn’t put it off forever, now seemed as good a time as any to find out.

After a nail biting few weeks, I went to the genetics clinic to get my result.
Its amazing how much of an effect a few simple words can have on the rest of your life.

I sat down, and the genetic counsellor came strait out with “I’m really sorry to say this, but you’ve tested positive for the gene’.

I don’t really remember a huge amount more from that appointment, other then absolute terror, and a fair amount of water pouring from my eyes. The life I have that is already full to bursting with health problems just got a million times more complicated.

Yesturday I was upset. My gem of a neighbour who had offered to accompany me to my appointment escorted me back to hers for 3 very strong cups of irish tea. We spoke for an hour or so, thrashing around all over the place as my mind furiously sifted through too many scenarios to count. She was extremely patient with me, and allowed me to get my head together in my own time – I honestly don’t know what I’d have done without her being there. I then decided I should keep busy, and as much as I didnt want to, I headed to jewellery class where I could spend a couple of hours hitting things (mostly metal, but my hand is a little worse for where… it turns out my aim leaves a lot to be desired when I’m stressed!)

Today I just feel numb. I know that there are a million and one feelings hidden underneath, but I just can’t seem to find them. The prospect of now needing to consider prophylactic surgery is extremely daunting, and what effects will this have on my already difficult dating scenario? At what point would I drop this one into the conversation. “Hey, by the way not only do I have the body of a 90 year old, but these boobs you see here are for a limited time only, and if you’re up for having children its likely to involve microscopes and something resembling a turkey baster”… Not the ideal selling point.

It will be a process of letting go of the things I had dreamed of doing. A big thing for me has always been that I wanted to breastfeed any kids that I had, but if I choose to go for surgery, this will no longer be an option unless I risk leaving it till I’ve had them. ¬†I had also never fathomed having the one part of my body I’ve never hated being lopped off by a surgeon and replaced with imposters. This will be a grieving process on a very personal level.

Fortunately, I really have stumbled across some amazing people who are supporting me. For all of the friends who have been dropping me little messages to keep my chin up and calling me and allowing me to talk until I find a stopping point without complaint, I can not say thank you enough. There are also 2 rather fantastic charities providing me with access to people who have trodden this path, and this is absolutely invaluable to me. I got a call from one volunteer to ask how my appointment had gone, and her response was exactly right for me – “I’m so sorry to hear that, but welcome to the mutant club!”

So, from one very stripy BRCA2 mutant, I will leave this post here for now. I will keep posting this journey alongside that of EDS and POTS, so I certainly won’t be short of ideas!