There has been so much written about cancer in countless blogs and books about people’s journeys – many I will never read and never relate too. It’s completely impossible, all these words: a fight with cancer, their battle with cancer, I’ve described it as a marathon, yet nothing really describes it. Can the essence of it be understood? My word at the moment is chaos. I am stuck in this black hole, never to pass the event horizon, everything even photons are sucked back in. Because basically you get to a place, or at least I am, where you have absolutely no …. idea what is going on. I live each day futureless. I cry on good beautiful days and I cry on the bad. I cry on the good days because Georgie and I know how great our future would be, (or we’re watching 24 hours in A&E). I cry on the bad days because I’m living a nightmare. I swear more than ever. I never used to swear much. I’ve even sworn in clinic. I’ve signed up to a trial where a group of pathologists will literally unpick the melanoma from my body before I’m cremated, at least in ashes I’ll be melanoma free. I said to the doctor “I will do anything to beat this … disease and if giving my body away is what I have to do that’s what I’ll have to do” (this is a family blog, but it needs to stay honest). I don’t know how often they cry, in oncology I guess you’ve got to be pretty thick skinned, but both the doctor and Clinical Nurse Specialist had tears in their eyes that day.
In some ways a more preferable death with more closure would be a car accident. Job done. Is that a sick thought? At least the narrative would be clear. I feel this line could be controversial, but I’m desperately trying to give real insight into how it is. I’ve had days when I’ve updated things like my CV and the dreaded medical portfolio thinking I’ll need this, and other days when I think what’s the point. The point is at 15 months I had hoped for some sort of certain narrative. I’m currently hanging on slowly, losing bits of me one by one. Brain mets stopped me flying in aeroplanes and driving a car, radiotherapy took my hair, (although it is growing back). Georgie said the last time we went on a Boris bike (about 3 months ago) that we had to do it, it was getting late and we were both tired, we needed to do it then or we may never do it again… We hadn’t until a few days ago. We walked past them and Georgie said why don’t you try it again, I feared having bad balance and my thighs have wasted (using a stick when I walk). She sat on a bench and watched me go round in circles round a little green. We were both pleasantly surprised and happy that I was able to do it and actually found it easier than walking, so the next day we went on a short cycle ride (but had to get a taxi back because Georgie was ill – turns out this was building up to an A&E and inpatient admission. But that’s a whole different story!).
It’s slow and cruel this disease. It has changed my mother, my father, my fiancée and my brothers into carers. Cancer doesn’t just change who you are but risks changing your loved ones’ perception and memories of who you once were. It corrupts your own memories. Even your mood becomes chaos. Personally sometimes I feel the steroids are almost worse than the cure, to hang on to life when half the time I feel slightly out of body or half the time manic, trying to come across not too irritable. Mid afternoon after the full amount of Dexamethasone I’ll probably have a heart rate of 110 and for an hour or so, it’s hard to focus on anything. I’ve got a farm in my mouth, taking Nystatin almost constantly only seems to keep the yeast (candida) to a field as opposed to a full cattle ranch in my oral cavity. I’ve got fat around my neck (buffalo hump) and central obesity with massive stretch marks. I sit down half way through washing up and my hand actually got so tired eating popcorn too fast during the cinema that I was concerned I was getting right sided neurological weakness. As I write this in the middle of the night, I realise it hasn’t just taken my sleep but it’s taken my dreams too. Being future uncertain makes all decisions so much harder. For example, do I continue the steroid appetite of basically eating what I see, because life’s too short, or do you try and diet to stop the stretch marks and looking 32 weeks pregnant? Although beating the latter is probably impossible because the metabolism of my body has been synthetically deranged by the steroids. It’s even hard to summarise who I am now, a bald disabled fat erratic man with a stick who cries a lot. This is from only months ago when I was a half marathon doctor, running with a beautiful fiancée and being my brother’s best man. I now have a sad thought, of me wasting even further looking more like withered old man with Dave literally carrying me from place to place… I’ve chosen diet and more exercise but will it help?
Is this all too negative? The point is it probably isn’t. I try to be positive because I find the positivity then resonates around me. I also consider myself a positive person. But the reality of this limbo of survival is impossible. It’s borderline, it could go either way. If life was fair, Georgie and I should be living together in a cosy flat making wedding plans, me with a job on A&E, and Georgie finishing off her degree.
The immunotherapy seems to be keeping me alive and, giving me that all important thing of time, but as I think I’ve made it quite clear, at significant cost to the health and sanity of myself and well, those around me too. Stuck in chaos makes you want to scream. To loosen up, Georgie and I the other day just listed all those words that still mean something. You know the ones, the angry horrible ones. Dave and I have had our voices imitated much more than most of our friends over the years, due to the bumbling and mumbling nature of it. This has improved over the years and I now like the uniqueness of it. Being slightly incomprehensible has worked for Boris Johnson after all. The beauty is, people don’t think this voice, which is far removed from anyone starring on Jeremy Kyle, would come out with anything vulgar so that makes swearing that bit better. It means when I say them there’s still that feeling, that relief of tension, that inexplicable emotion related to living your worst nightmare. A nightmare you cannot even describe. Forget how you’re supposed to relax, yoga etc. And in your head or out loud just scream that word and maybe just maybe you’ll feel better. You might then have some idea how I feel, because I certainly don’t. All I know is I’m grateful for every second of every great day that I’ve spent with those I love. Life is great. But I can’t help thinking that with a perfect fiancée, a good job, and a lovely family, cancer is a cruel … disease.