Much as I’ve doggedly resisted thinking about anything but the strongest treatment, it might just be time now, to consider what I’m really prepared to go through now.
Nothing is ever certain, of course. People absolutely revel in telling me about a friend of a friend of a friend of a second cousin’s niece who was told they had ‘xyz’ months/days to live, but defied all odds to survive an extra ‘xyz’ years/decades. I’m not saying this couldn’t be me. I’m saying that if highly trained and experienced professionals are looking at a shorter time scale, then in the first instance, so am I. I don’t own a tin foil hat and I’ve never refused a vaccine. I don’t think 9/11 was an inside job or that the moon landings were faked. And I choose to believe my oncologist over someone who heard about someone once outliving a bleak prognosis. I’m certain that people have the best intentions when they tell me about such success stories. Or about the efficacy of some new wonder drug or other.
But at a time when it increasingly feels like I have no control over the life I have left, these stories don’t ’fill me with inspiration’. They heap the pressure on. Unlike some cancer patients who have a problem with battle language or around ‘ringing the bell’ I’ve definitely come to terms with the fact that I’m fighting a losing battle. No one can do anything about this – my body is ‘riddled with cancer’, as was so eloquently stated by Baroness Wheatcroft in the House of Lords last Friday. I have no idea how cancer and its associated symptoms might kill me or how soon. For anyone who enjoys a flutter, a seizure or pulmonary embolism are the top candidates to kill me quickly. General organ failure (the liver disease is currently quite advanced) promises to kill me more slowly, no matter how ‘determined’ I am or how much I ‘just believe’ or [sigh] ‘stay positive’.
Please can my mindset be left up to me? It’s got a big lump of cancer in it, but it’s still my mind! Given all the adventures I’ve taken on over what is coming up to three years since diagnosis, I hope by now I’ve earned the basic assumption that I’ll do what I can with any given day/week/[month??? I’m not sure if it’s realistic to think in months any more. Surely it must also be clear by now that I’m not exactly one to seek comfort and give up, whatever the task at hand happens to be. Indeed and especially recently, this has been my primary method of getting on – physically and mentally. To have a few bits and pieces in the diary to ‘look forward to’. Clearly I’m not alone in this as there is a charity set up in the same name, offering people in similar situations to mine, things like holidays and meals out. Well – I got a couple of holidays in this summer and I can’t wait to report back from the meal coming up this weekend! Gone are the days when I couldn’t really enjoy myself without having ‘earned’ it through some long run or other. Just like with everyone else, it really comes down to spending time with those you love.
Reading back, it’s clear the ‘scanxiety’ is real and there’s a tension to my writing coming even through the drowsiness caused by various pain meds. I have an appointment tomorrow where brain scans will be discussed and options weighed up between risk of brain bleed and efficacy of up to three different chemo options. As I understand it, a ‘good result’ will be making it to Christmas because of the reasons above and because even a good response to chemotherapy won’t necessarily keep cancer at bay. But maybe it will. Maybe I’ll emerge from my next 3 month scan clutching an image that presents little to no cancer. Maybe all the aches and pains caused directly by cancer will go away and the prospect of simply walking out of the door will no longer be a daunting one.
For this possibility alone, I’m certain I’ll take at least one more course of palliative chemo. The trade off is likely to be a few more nasty side effects, but this isn’t my first rodeo. Even with a huge drop in health and fitness towards the sedentary, I’m good for (let’s say) another 3 solid months of suffering. What if it gave me 3 months of ‘wellness’???
See – I’m being nothing if not relentlessly positive.
But what about next time…If there is a next time?
Do I exchange 3 months of chemo for 3 good months? 1,2 a few weeks? It’s not like anyone’s going to predict this using a graph or anything, but I wouldn’t be surprised if more than one doctor could give a professional opinion of how much ‘reward could come from which treatment cycle. Already, there’s an option on the table that has horrible side effects and doesn’t even do much to the cancer besides keeping it ‘stable’. If that became plan A, I hope I’d be forgiven for questioning the point!
In the meantime, what am I supposed to do now?
- Take up the ‘palliative’ mindset and aim to keep myself as comfortable as possible? This amounts floating around in a kind of morphine stupor, which is fine for a bit but quite a drag if I actually want to do anything.
- Relentlessly pursue all the fun things I’ve got to look forward to, no matter how consumed I am with pain and suffering? That really isn’t as fun as it sounds.
I suspect it’ll end up trying to live with a mix of the two. I’ve said it many times in the media – I really am receiving excellent palliative care and as I work with my team to essentially get the dosages right, it’s possible that I’ll go galavanting around like any other sedentary person. There might just be a place for me in the middle.
Having reflected in my last blog about my world shrinking specially, this one has become all about timeframes. From thinking in years to months to weeks, that old chestnut probably does apply now: ‘Take every day as it comes’. Well, It’s not at all easy to plan anything much to look forward to on a day by day basis but that’s where trust in the people I’m making plans with comes in. That I’m not letting anyone down if it’s not a good day and I fail to make a commitment. So far, it’s literally taken being admitted to hospital for me to fail to turn up. Well – here’s some advance notice: we’re all going to have to start getting used to this. Because though the mind is strong and able, the body really isn’t.
Thanks to all for your understanding at this difficult time. I’ve discovered what ‘difficult time’ means now: People having to hang around waiting for me!