THE NEW NORMAL #36 – THE TWIST

Well, here we are then. You locked down? We’re locked down. Mad isn’t it? Not as mad as the people who think ‘social distancing’ means air kissing or only having two pints before the pubs shut down but, still, it’s a wild time to be alive, right? I mean, our grand children and great grand children will read about this period in modern history the way we read about the plague or the second world war. Nevertheless, as long as folk have enough frozen pizzas and toilet roll, we should be alright, shouldn’t we?

Now, the original title for this entry was ‘The Other C Word’ as I was going to focus on the issues of having cancer during the coronavirus outbreak but events have somewhat overtaken me on that front. You see, I had my latest scan two weeks ago and I got the results on Tuesday over the phone which, well, they weren’t good. This is the bit in the movie of my life where you think everything is going OK but then a twist comes along to throw you for a loop and the hero (that’s me) crumples to the floor in disbelief.

It seems the four sessions of immunotherapy did little or nothing to the cancer on my pancreas which has now grown instead of diminishing as had been the not unrealistic hope. This basically means that the immunotherapy currently on offer via the NHS or any other mainstream medical route is of no use to me. The options, therefore, would normally be either chemo or clinical trials but, with the current lock down in place neither of those is massively practical nor likely in the short term. The prognosis, then, is months. ‘Months’. Funny how that can seem like an absolute age or the blink of an eye depending on the context. “I’ve been practicing the yo-yo for months” compares much more favourably to “I only have months to live”.

The weird thing is that whoever has to deliver this news over the phone almost always has to ask, “do you have any questions?” at the end of the call which is such an absurdly crazy thing to ask in that situation. I want to ask “How many months? Why? What did I do wrong? Why do I deserve this? How do I tell my wife and my stepchildren? How do I look my 5 year old boy who I adore with every fibre of my being in the eye and tell him that although I look fine, there is a strong chance that I will have to go in to hospital one day soon and I will never, ever come home?”. But you don’t, do you? You just say, “Not at the moment”. I even thanked her for the call. Christ I’m English.

Since getting the news on Tuesday (nearly four years to the day since I got my original diagnosis, timing fans) we have been through a range of emotions, almost entirely negative. I say ‘almost entirely’ because through all of the bitterness, the biting anger, the depths of despair and the overwhelming tide of sadness there has been love. I don’t mind admitting that I have sobbed uncontrollably at the idea of leaving my little boy without a daddy (that word alone breaks me), I have hugged my wife so hard and close through the fear of leaving her behind to pick up all the pieces and I have slumped to the floor in a hopeless heap after expending the energy taken to tell my family over the phone that I might not make it to Christmas. But, through all of that, I have felt love washing over me like a healing tide. Every message, thought, kind word and act of generosity has been truly appreciated and felt. 

Right now, I have made an appointment to finalise my will over the phone and I have started to think about how I want to leave things for my family but that doesn’t mean I’ve given up. There are outside hopes of getting on to a Clinical Trial at London’s Royal Marsden hospital or Christie’s in Manchester – Derriford hospital in Plymouth have stopped all trials at the current time due to the coronavirus – and failing that I will go down the chemotherapy route which works better for those that have already had immunotherapy but it’s a nasty treatment that isn’t great for quality of life. Beyond that we’re into miracle territory and I feel like I’ve probably had my fair share of those already in life so who knows.

There’s not much else to say other than that I am, as a friend said, ‘the luckiest unlucky fucker’ in the world as I have the perfect excuse to stay at home with my family in the sunshine. Making memories and getting things in order is the name of the game right now but I will do my best to document things as I go, for the sake of history and my son’s understanding of things when he’s older. I’ve been trying to think of how to describe where I stand at the moment and it comes down to two feelings; firstly, I find myself looking in to the future and seeing myself fade out of events like the family photograph in Back to the Future – school sports days, standing on the side lines of football matches, first pints, graduations, weddings, grandchildren. I can see them happening as clear as I day, but my presence is just a misty eye and a remembrance rather than anything more tangible. Secondly, I have this sense that the as yet unwritten roadmap of my life is being folded up before I’ve had the chance to complete the journey or at least see where the finish line was supposed to be and that feels deeply unfair. Partly because I had so much journey left to go and partly because I’ve always loved maps.

The bottom line, however, is this; I have lost count of the number of times my son has said “Daddy, look at this” or “Daddy, can you help me?” in the last few days but every time it feels like someone is killing a part of me, knowing that one day in the not too distant future he will forget that I’m not there any more and call out like this only to be met with silence. Deafening, tragic silence that will become his new normal and I hate myself for being the person who will make that his reality which, in turn, drowns me in guilt and so the loop goes on. Each day gets a little less disorientating and confusing but, then again, the current normality of living two weeks into a coronavirus lockdown is not much comfort. So, it’s a race against time – will coronavirus block me from accessing any new treatments or will I hang on long enough to get some help to prolong what now appears to be inevitable. There’s the twist in the movie for you but the end is not yet written so hold on, it’s going to be a bumpy ride to the end credits.

One thought on “THE NEW NORMAL #36 – THE TWIST

  1. Just to keep streaming love and total admiration of your painful honesty. It is unbearable, but you tackle it head on with such lucidity. Xxxxxxx Rachy

    Like

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