Considering my physical condition, people often tell me how well they think I am doing psychologically, and that they don’t know how they would cope if they were given the news that they were terminally ill. I tell them it’s like thinking you’ll ever be ready to be a parent. You never will be; nobody ever is. Even those who have close insights into parenting through family or work, or who have planned and prepared it all out methodically on a spreadsheet (haha suckers, good luck with that one!)
The day that baby comes along, nothing is as you thought it would be, and you have no choice but to grab a helmet and get on with it. Similarly, the chances are the day a young registrar gives you a terminal prognosis, is the day that you will start the coping process; and those that commend me on my handling of the situation will probably do exactly the same as I have, and play the cards they are dealt (while wearing a helmet?)
This perception of my heroic stoicism is very unbalanced though. Those that praise me only generally see me when I am feeling well. They don’t understand that the only thing holding me upright are the invisible crutches of drugs. What they don’t see is the seventy per cent of the time when it takes me a day’s bed rest to recover from doing the ironing (proper army ironing, mind you!)
On those days when I feel well enough to socialise, it’s actually very easy to be positive in the moment. It’s a blessed relief from the bloody boring fatigue; the subtle institutionalisation that comes from being an inmate serving out your death row sentence in the open prison you call home. Being normal for an evening, laughing with friends, and completely ignoring the alcohol warning on your medication.
When I feel physically unwell (and other than close family, people don’t see that part), I get psychologically down too. Exactly as with the parenting analogy above, behind closed doors you secretly think dark thoughts, you have times when you want to tear your hair out (chemo left me mine), you wonder how the hell you are going to get through the day, and how come everyone else seems to be able to cope? Of course, the rational me knows the reality, but the emotional me likes to bitch as much as the next person. I fear that when it comes time to go ‘over the top’, I may well not have the courage to do so with some dignity. Or fuck knows, maybe I’ll welcome it?
Before that day comes though, I continue to be surprised as I stumble over unanticipated experiences and thoughts. For example, as you would expect with progressive terminal cancer, I have been feeling more pain recently and some of these pains have been in my left chest and abdomen. Until now the tumors have been restricted to my right lung and lymph nodes. I recently had a CT scan done to check the cancer’s progress and while it showed an expected, but disappointing increase of 300% in the thickness of the cancerous plaque enveloping my right lung, it showed no tumours present on the left lung or the abdomen.
You would think the natural response to this news is elation. Growth of current tumours is one thing, but the day they start appearing in new parts of my body is the day I start packing my mental luggage. Unbelievably though, I felt a twinge (maybe more psychosomatic pains) of disappointment that the tests hadn’t confirmed my predictions and validated my pains. I was ‘unhappy’ there weren’t new tumours showing! “What The Fuck is that all about?!”
My wife also recently found out about a new clinical trial that is being conducted internationally into mesothelioma and looked into the conditions for eligibility. It appears there is one small, but critical condition that I don’t comply with. Nevertheless, my wife asked our consultant if they would still consider me bearing in mind the rarity of the cancer in people my age. After all, if this worked it could save my life, literally. Remember back in the Eighties when being HIV positive was a short sharp drop? Now with the help of medication, it is possible for some people to live full and meaningful lives practically symptom free. Maybe that could happen with mesothelioma?
Despite my wife’s hopeful denial, the consultant replied the only way he could. I would not be considered for a trial unless all the selection criteria were met. No exceptions; otherwise it would skew the data and invalidate the whole study. The astonishing part is how relieved I was to find out I was ineligible. I wouldn’t have to make that decision, or go through any of the inconvenience of going through the trial. Surely I should be desperate for any chink of light, but apparently I’m too lazy to live. Again I pose the question, “What The Fuck is that all about?!”
Bizarre reactions like these come and go soon enough, and whether it’s the drugs or my generally sunny disposition, I came out of that consultation feeling that the overall news was more positive than I had expected going in. I had worried I may have hit the tipping point and might have to start the process of explaining to my children the morbid realities of the situation, (never mind the horrors of drawing up the step by step process sheets on how to turn on the TV for my wife.)
However, instead of staring down that particular double barrelled emotional shotgun (and all that exciting technical documentation), I started fantasising. Imagining that life might actually go on for longer than I previously felt was possible or realistic. Maybe we aren’t just talking months here, maybe I could still be here for (and I whisper the word), years?
My consultant is keen for me to start a new round of chemotherapy as soon as possible, and if that goes well who knows how much extra time that might give me? If that was to happen though, what would that actually mean? I honestly haven’t even contemplated the possibility. The truth is somewhere down inside my subconscious all my plans have been designed around me having a couple of years, maybe three at best, from my diagnosis in January 2012. But what if I live longer than that? What if I live another five years? Or ten? I haven’t prepared for that at all. Could I go back to a ‘normal’ life?
It was at this point I remembered I take permanent opiate pain relief, steroids, and a tub full of pills and potions just to get me out of bed in the morning. Who the hell am I kidding? I have to have a nap after doing long division for goodness’ sake. Nevertheless, I realised that despite the unlikelihood of such an outcome, the idea of returning to a ‘normal’ life scares the shit out of me; maybe even more than the cancer. Shouldn’t that be my ultimate dream? For what I expect will not be the last time, I ask myself, “What The Fuck is that all about?!”
I mean, seriously, WTF?!