New Year, New Pain Cave

On a good day, if I take my time, listen to my body and grudgingly accept the reality of my many physical limitations, I can do almost anything.  On a bad day, the only priority is to avoid pain and stay as comfortable as possible until it feels like I might get to the end of said day without too much suffering and imagine there will be benefits, maybe in terms of rest.  On such days, I just hope I don’t have anything much to do.  Who am I kidding? My life is now grinding to the kind of halt where there really isn’t much left to do.  And though I don’t find my bones grinding (as some do, especially dying people double my age) to the point of needing artificial joints and such, I do find myself spending a lot of time in what ultra endurance athletes refer to as ‘the pain cave’.  What is the difference between the pain cave and straightforwardly being in pain?

Choice.

Some might choose to visit the pain cave or spend as long as possible in there, chipping away to construct entire rooms.  But the pain cave is a hotel, not a permanent residence.  No one would choose to endure the kind of suffering that comes with being a latter stage cancer patient and… this is the important bit… without being able to leave, like the cave doesn’t have any door handles. As in so many situations…it’s not the horrendous ordeal that’s the problem.  It’s not being able to escape.

It comes in all forms: muscular, skeletal, muscular-scelatal, digestive, and all other kinds that I don’t want to commit to currently feeling as I’m still waiting on a CT scan.  So is the pain team, palliative nurses, district nurses, various PAs, oncologists, the chemo ward and probably even the people who carry out CT scans themselves.  This particular wait has already pushed back three appointments and the phrase ‘let’s wait for the scan’ is now extremely familiar.  As an X-ray was easier to book in, I do know my fluid on the lungs isn’t ’fluid on the lungs’ but of course we need to wait for the scan and see if the worrying title of the current theory is the ‘bulk of disease’ (by which they mean the cancer itself) is what is in fact, making breathing so difficult. But I can’t claim to have spent the entire festive season in the pain cave and have been delighted to go around meeting friends old and new as well as celebrating the 40th birthday I didn’t think I’d get round to.  I’ve discovered I’m no so good at remembering to take photographs but plenty of fun things did happen, including a family meal and show for my birthday, various nice meals out, far too much cake, three concerts conducting, two concerts playing the trombone, a journey down south to celebrate a nice family Christmas and, thanks to that lack of a scan, no chemo to get in the way of it all.

Maybe I’ve overeaten and pushed myself too hard…
Maybe I’ve spent too many days sleeping in unfamiliar beds…
Maybe this low was always going to counteract the high…
Maybe I should expect the pain medication to be regularly readjusted…

Whatever, it still hurts!

One thing that became apparent on New Year’s Eve was the extent to which not really being able to breathe has become a problem.  A mere two weeks before, I’d played the same music on the same instrument to the point that others in the band were pleasantly surprised that I was able to do so.  But on that Wednesday night, I really, really struggled and using limited supplies of air was my only distraction from the other aches and pains.  Later on, and at least half an hour into 2026, I did experience something quite life affirming.  Such epiphanies are probably the result of small adrenaline surges, but no matter – I felt something that night (or should that be early morning?).

How did this life affirming epiphany present itself? Simply with a two-chorus solo on the most straightforward 12 bar blues structures of Route 66.  Even on the unwieldy instrument of the bass trombone, that’s all it took for the pain to somehow disappear.  I really hope to feel this again, but if I don’t, so be it.

Music. Is. Magic.

But unfortunately, music doesn’t quite get you through the worst of end of life-type pain and suffering.  Whatever is going on, I have spent most of the last week or so in considerable discomfort and (not for the first time) can state without the smallest hint of irony, that I wouldn’t wish this on anyone.  There’s a reason people continue to feel sorry for me and it’s not at all pretty.  Oh how I wish all it took for me to feel better were opening a few doors or encouraging me to ‘rest up’ no matter how well meant.  The first song I wrote about cancer has a line about nights that ‘merge relentlessly to days’ and it feels like that now.  If I can just make it ‘til morning, I’ll have a slightly different set of aches and pains to try and manage.  Then if I find a way to lie/sit in bed, that might just bring me enough stability to be able to listen to a podcast or something and while away the hours in just about enough comfort for it to feel tolerable.

This is the kind of story I’ve told before and it’s been as much a result of the treatment as the cancer itself.  But this is all down to the ‘bulk’ of the cancer itself.  I’ve spent many a day not being able to imagine being dead before the end of February.  It’s that accumulation that tells me I must surely have a bit longer left than that…but stringing enough bad days together, like this, starts to turn the tide…just a little…maybe I’m closer to that ultimate choice of ‘hospital, home or hospice’ than I thought I was.  This feels a ridiculous thing to imagine.  After all, I can still walk around the house and still don’t need any carers.  But it only takes a few steps to just about exhaust me thanks to that infernal (Internal?) bulk of disease.

Be all that as it may, I’m still not completely housebound.  Long may I continue to be able to say that!