The fear

Sometimes for a brief moment in amongst the daily muddle and confusion of living with this disease I experience glimpses of my past, the ‘c’ word submissively disappears into a black hole and for a split second none of this ever happened. These momentary fantasies are usually cut short by an overwhelming urge to think about my future, thoughts which offer nothing productive just abject fear at all the uncertainty.

Fo the last seven weeks I’ve had very limited contact with the hospital, no treatments, no scans, no meetings. The moments of forgetting I have cancer had become more frequent, I experienced the trip of a lifetime in India (post to follow on this) and spent a weekend away with friends in Cornwall. I enjoyed some of the fabulous weather that occurred during the British summertime (a welcomed rarity), went to Wimbledon, twice, managed to blag my way into centre court (thanks to my friend Louise) and went to the Queens tennis final. I spent lots of time with friends and family, started back at work and booked my party (24th November at Paintworks in Bristol. Hope you can all make it).

Seven weeks would never be long enough though, particularly given the first half was spent picking myself up off the floor from 11 rounds of hell we call chemo. Maybe I’m being greedy but seven months would have been better, seven years and I might have actually hugged someone.

But seven weeks was what I got until it all kicked off again and now I’m sat in the waiting room at the Royal Marsden for yet another CT (I don’t have enough fingers and toes to keep track of how many scans I’ve had this year), a stark reminder of a life often stuck in limbo waiting for a miracle or the inevitable. Over the last week I will have had an MRI, a CT, two blood tests, two meetings with my oncologist and a few meetings with other medical professionals.

Days prior I sat down with my managers at work declaring that I was absolutely ready to come back full time, however sat here now knowing my cancer is growing again I suspect this might need revisiting!

Of course with such a challenging week my brain has fallen quite rapidly into overdrive, stress levels have rocketed (a big no no for cancer patients – advice I find utterly hilarious) and all the wellness tips learnt from India have escaped me faster than Houdini in a pair of Fisher Price handcuffs.

Instead I have unwittingly opted for a classic Sophia meltdown. The one which starts with wanting to give up and quickly spirals into chaotic self destruction, panic and pandemonium, pushing everyone away from me whilst allowing seething levels of anger and frustration to take control rendering me a virtually unrecognisable contradictory mess and quite frankly bloody hard work to be around.

In India I thought I had finally got my head into a space that could control these tailspins, I saw no reason why I couldn’t continue with life like everyone else, but back home the reality is much harder. I’ve always known I will be going back on chemo and I know this time there won’t be a break. Whilst I accept this is lower dose (also known as ‘maintenance chemo’) the fear and anxiety of going back on treatment is horrendous. Much worse than I thought it would be. What if the pains come back like they were on my last chemo? What if I’m in a&e again on average four nights a week screaming the hospital down and demanding IV morphine? What if when they finally add Avastin in two weeks my bowel perforates, (a very real possibility given that I’ve already suffered one very minor perforation) which my oncologist unreassuringly makes very obvious still scares him, because we all know, given the level of treatment I’ve had so far what another perforation will mean… (on the plus side whilst it’ll be painful, at least it will be quick! – sorry mum).

The only benefit to these episodes is that when I’m backed into a corner and everything has crashed around me, fight or flight mode is triggered and I immerse myself in medical journals, research papers, websites and meetings with more medical professionals in search of more options.

As I sit here now I know that I have a plan for all outcomes of this scan but all plans involve more treatment, more chemo, more pain, more side effects. All plans also involve Avastin, so there is no avoiding the fear hurtling through my veins at break neck speed thinking this might be my last few weeks. I know I can’t live like that and I know it’s highly unlikely anything bad would happen. I trust my oncologist with my life and I know he has taken every precaution to make sure the odds of this happening remain as low as possible, however I seem to have a knack for hitting poor odds so whilst I try to, I struggle to rely on this for comfort.

Determined to get out of this hole I’ve decided to start speaking to a mental health professional again to help control the anxiety and growing number of panic attack’s that are debilitating my progression. So far I’ve not found this process that useful but I’ve been reassured I just need to find the right person. I know I cannot dwell on what might happen to me in a few weeks, instead I’m thinking about the surprise trip to Iceland I’ve planned this weekend for two phenomenal long term friends who have supported me through all this. Im so excited to see Iceland and share this experience with them. I’m also planning ways to see all my other wonderful friends and family and keep myself distracted. I must remind myself that life is good and however much of it I have left, I’ll make sure it’s filled with more laughs and adventures.