I have known all about the statistics of myeloma ever since somebody first removed a piece of bone from my body. They are statistics that I thought I had come to terms with and understood. As with everything else I can interpret as ‘bad’, I acknowledge it, and move on and then when I need to acknowledge it again, I do so and move on and that is how it goes. The issue at the moment is that I do not have a great deal to move on to. Myeloma wise, I am on a one way trip to an allograft stem cell transplant and this, my dear friends, I find absolutely terrifying.
I can pretend to not be scared by the 40 percent mortality rate and the various complications that can come with the procedure, but that pretence does me no favours whatsoever. I know this, because I spent much of the last fortnight of October bursting into tears as I spontaneously contemplated my own mortality, pretending that I was not worried by it. I believe I confused admitting that I have these thoughts were in someway admitting that I was not brave, which of course is not true. I am the bravest. I did attempt to talk about my fears, but it does really help members of my Support Network to think of my early demise either. The stock response tends to contain the words, ‘silly’ and ‘fine’ and then the conversation is shut down. I cannot shut down my own fears that statistically, it is far more likely that this could be my last Christmas than it would be for anybody else I know.
I have not lost complete control of my senses. Chill. It would be wrong to say that the forthcoming, on a date to be confirmed at some undisclosed time in my future, transplant occupies all my thoughts, but it is never far from my mind. It would also be wrong to say that I view the transplant as a negative experience, for I do not see it as such. Indeed, thinking of failure before the deed is done, could be seen as a jinx, if I was that way inclined. And to confirm;
I am that way inclined.
I did not know it, but my fear and the management of that fear, which I am told is completely normal, has manifested itself in superstition. Not just any old superstition, but overt, occasionally ridiculously, but almost always laughable and definitely without any scientific merit, superstition. Stevie Wonder might say that this ain’t the way, but what does he know? I am pretty sure that I am just being pragmatic and ensuring that I have covered all the necessary bases.
It’s just like taking my drugs…
It all started innocently enough. A few months ago, I was asked to consider doing something that I thought that if I were to agree to it, I would be saying that my treatment would fail and that, in a nutshell, I would die. If I wasn’t signing to confirm my early death, at a minimum, I was committing myself to a lifetime of complications much worse than those I experience now. The word ‘jinx’ was bandied around. A lot.
Since then, these thoughts have developed into something I could not have foreseen. I now see many things as potential omens. It is a logic that led me to purchasing a pair of shoes on my credit card, because they were too much of an investment for pre-transplant wear alone and my morals say that I need to be around long enough to pay of the debt. So you see? It was fine for me to visit the Russell and Bromley website. With that sort of mentality, I could really screw things up for myself.
It goes on…
This Christmas is nothing special. It’s just the same as another other Christmas. To say anything else would be, punch me in the face, pinch my nipple, condemning me to failure, sacrilege. In fact, I decided last week that it has to be called Just Another Christmas. No muss, no fuss. The only issue is, I am yet to decide whether this means I fight my Brother-in-Law for a Christmas dinner, because that is what I would normally do. Or, do I let him and Big Sister decide on how we spend Boxing Day, because I’ll of course, get to decide next year and for several years after . Just Another Christmas, remember? On the scale of jinxing, I’m not sure which route is the best one to take? It makes me feel quite uneasy.
I recently started keeping a log of all the films I see in a little notepad. The record started because I could not remember seeing a film I saw a year ago, but when I saw the size of the book, I realised that my transplant would have to be a success, because I had to be given the opportunity to fill the whole notebook. It’s a lovely little Moleskin in red by the way. For the first week or two, I felt quite confident about my new task. It was a confidence that started to fall away when I realised that there was a chance that I could fill the book before my transplant, and then, instead of it being a good omen, it became a bad one. I started the book on 9 October, and to date, I have seen 36 films I have not seen before. I am just under halfway through the book because I made the foolish decision to devote two pages per film. Foolish oversight.
A few nights ago, I found myself lying in bed fretting over what I had brought upon my house and I realised that I needed to introduce a contingency plan. Basically, I need safeguard after safeguard to ensure that everything goes to plan. Makes total sense right?
I decided that what I needed was a list of films to see that I had never seen before, or, as I am calling it, ‘Films to See in Life’. Notice my language here, there is an alternative name that would roll far more easily off the tongue, but my superstition will not allow it. I stayed awake, deep into the night compiling the list of Films to See in Life. As the list has been formalised in a word processing app, it means that I now have to complete it and I am fairly certain that it will take longer than two years to do so, for my list criteria does not include forthcoming cinema releases or random things I come across on one of the three streaming services found in my flat. The added beauty, inner beauty if you will, of the list is that I can always add to it, thus creating an inbuilt contingency should I find myself able to watch multiple serious films back to back, for days on end. I should add here that this scenario is highly unlikely given my current and future medication. If you do not believe me, try and follow the plot of Robert Altman’s Nashville after you have been awake for 24 hours and you are suffering from a hangover and then you’ll sort of understand what it is like to be on the Revlimid, Dexamethasone, Cyclophosphamide, MST and Diazapam cocktail.
I was once somebody whose beliefs were very much grounded in reality, but fear does funny things to a person. At least to me anyway. You all know that now and you can be mindful of it. Housemate is on board too for yesterday he bought me an early Christmas present (I actually think it was a late 30th birthday present) in the form of a Moleskin 240 page Film Journal for us once my little red book is full. Guess what?
I think it bodes well…
In case you were wondering whether this makes me mentally unstable, mind your own business. Sure, as an aside, I was slightly worried about it as a long term management tool, but I have been told that it is completely normal behaviour when one is in quite extraordinary circumstances that they have absolutely no control over.
Just do not tell me that everything will be ‘fine’. Make it ‘fine’.