Trapped in a Well with a Crocodile (or cancer)

Have you ever been trapped in a well with a crocodile?




Captive in a limited space, confined and confused by the darkness, unable to gain a foothold because you can’t see through the dense thunderhead all around you. Making sense of this foreboding abyss with its slippery walls, isolating silence and icey cold waters is petrifying… and that’s not all.  Somewhere in the well lives a crocodile. It’s in there but you have no idea exactly where it might be. It might be far below  or about to break the surface. It might be about to seize you in a death-roll or look you straight in the eye. It might bite you once then leave you alone.  You know you need to get out and all the while you imagine how powerful that crocodile is, you sense its huge mouth and razor-sharp teeth.  You want to break free yet you know the crocodile might just as easily  swallow you whole.

When I was diagnosed with an aggressive cancer in 2012 my relationship with my body changed.  Instead of seeing it as a safe haven, a place where my sentience could frolic, it became the well.  I was trapped inside and in there with me was a crocodile called cancer.  I knew there was no way out of the well and I knew a death-roll with a crocodile was a bad idea.  Losing part of my body was better than losing my life and so, for me, the journey through surgery and chemotherapy was better than letting cancer swallow me whole.

Whenever I could I tried to turn any negative thoughts into more positive ones. Having surgery meant removing the obvious signs of cancer from my body and that was a good thing.  Undergoing chemotherapy (something that frightened me because I’d witnessed my Mother’s experience) meant targeting any remnant – rogue cells that lurked in my body as yet unseen. Although the side effects were unpleasant, the chance to stop cancer biting me again made treatment  worth the time, effort and side effects I encountered.

We all have different views on our bodies, on our femininity or masculinity (because men get breast cancer too). We all have different views on what makes us who we are, which pieces of ourselves we love or loathe, the things that make us ‘normal’ or ‘a freak.’ In Western society it seems so much of who we are becomes entangled with how we look that any affront to our physical wholeness becomes an assault on the very essence of our being.

When faced with cancer the prospect of surgery means facing the prospect of never again being physically whole.  Keeping a sense of perspective when nothing much makes sense is important. I realised quite quickly that my life would  not depend on physical wholeness, but it would depend on eradicating the cancer that had taken root in my breast.  Viewed in this way the prospect of mastectomy also became an opportunity to prolong my life.

As it turned out, mastectomy was the correct choice. Aside from the cancer I’d discovered for myself there were areas of high grade DCIS and atypical hyperplasia, both of which had the potential to become new cancers in time.  Having exchanged one cancer containing breast for a silicon fake it seemed counter-intuitive to retain the “good” breast in the hope that the cancer crocodile would only bite me once.

Two year’s after my initial cancer encounter I was able to complete risk-reducing surgery – mastectomy and replacement of the remaining breast with another silicon fake.  I can honestly say I’m glad I did.  As research progresses we learn more and more and it seems DNA changes are already present in the healthy breast tissue of women with cancer. My family history made having breasts a game of Russian roulette. If anything, I wish I’d fought the system more rigorously to undergo risk-reducing surgery before finding myself facing cancer head on.

Its been a long journey. This summer will be four years since my original diagnosis and my trips to the operating theatre are still not quite complete.  In a few weeks I’ll be in for some revision work, things that need to be taken care of following the original surgery of 2012. In the grand scheme of things it’s very trivial, a small price to pay for the four years of life I’ve enjoyed so far.  I’ve learnt that my body is not invincible, that hidden dangers may lurk beneath the surface and things go wrong even if we do our best to adopt a fit and healthy lifestyle.  I’ve also learnt that I don’t really care about my fake breasts, my Herceptin damaged joints, or my lack of physical strength, I can exist quite happily with all those little niggles.  The things I care for most – my family and friends – can only be taken care of if I’m here so preserving my life was always going to be more important than preserving physically beauty, ‘normal’ femininity or bodily wholeness.

This little piggie

I am part pig.

When I was diagnosed with cancer and opted (fortuitously) for mastectomy with reconstruction instead of wire-guided lumpectomy my consultant used adermal cellular matrix (ADM) to make a pocket for the silicon implant. ADM is specially prepared pig intestine and in the UK it’s expensive, so much so that the Chief Executive of the healthcare trust had to approve my consultant’s plea, prise open the NHS coffers and sign a purchase order for another few thousand pounds worth of cancer treatment on top of some equally expensive Herceptin.

I feel hugely grateful that my consultant went above and beyond to get the right materials for reconstruction, and that she’s so skilled and up to date with plastic/microsurgery techniques. She is truly amazing in all senses of the word. At another level I remain somewhat conflicted because an intelligent and sensitive creature gave up its life so that mine might one day return to something approximating normal. That creature – a specially bred pig – didn’t get the ‘tick here to opt out’ box and as a result part of it is now very much a part of me.

On Monday I returned for my annual follow-up and “what next” discussion. Cosmetically there is plenty of tidying up that could be done but I’m not bothered about aesthetics. For me what next has always been removal of the other, “good,” breast before it starts wreaking a trail of destruction through my life. I know too many women whose “good” breast went “bad” after being assured contralateral breast cancer is very unusual. It’s nowhere near as unusual as they or I would wish. For my consultant the original priority was to get rid of the active cancer and start systemic treatment. High grade HER2+ tumours have a propensity to spread and on balance I conceded that dealing with active cancer was our joint priority; we’d return to other potential sources of untimely death later on, when my life wasn’t so readily at stake.

Later on happened to be Monday when we went back through the roll call of women in my family who’ve died of breast cancer at 50 or younger. The list is depressing, more cataclysmic disaster than family tree and although I’m now well versed in talking about it from an emotionally safe distance it retains an ability to trigger unwelcome thoughts and pitiful images. Things I’d rather not recall.

Multiple generations – 8 or more women – wiped out by breast cancer leaves the current generation (me) increasingly convinced that highly predictable trends seldom stem from random coincidence. I am and always have been in a very high risk group. Two decades attempting to convince various GP’s something is amiss in my version of the human genome and finally my consultant declared point blank that she too is absolutely convinced. Coincidences on this scale are not coincidental – her words, not mine. Whilst she’s optimistic science will unravel the faults in my DNA within the next 5 years she’s mindful that 5 years waiting for another high risk (highly predictable?) cancer event to materialise is unacceptable. We’ll be going to theatre again, the fourth time together, just as soon as a slot for surgery comes up. We’ll also be calling on another of our porcine friends so silicon implant no. 2 has a suitable pocket to rest in.

Once this surgery is complete I’ll definitely be ‘this little piggie,’ more pig and plastic than human female. The thought is both comforting and disconcerting.

I stand facing another major surgery which is not without consequences. There’s a chance untoward change is already happening in there (we have to cross that particular bridge if we come to it). There’s a chance things might go wrong – infection, haemorrhaging, skin death. Even if all goes well the surgery doesn’t come with an ‘opt out of breast cancer forever’ guarantee, it reduces risk, not the same as removing risk entirely. Ideally no other animal would have to lay down its life for me but it seems that’s an unavoidable part of this cancer dance too. I guess one way or another the unlucky pig would’ve ended up consumed by humans. At least this way it won’t be turned into sausages…