‘Watchful Waiting’, it sounds like a fairly innocuous phrase, but I am discovering hidden layers, predominantly driven by my own psychological nuances. Firstly, there’s ‘waiting’, there’s no doubt that ‘waiting’ and I are temperamental bedfellows, I don’t like it and often I’m just not prepared to do it; queuing is a particular bugbear. But the issue here is ‘what am waiting for’? I’m certainly waiting for my energy to return and it is, but very slowly. So, the issue then becomes, have I waited long enough to do the things I want to do with the energy I have; this is a troublesome area, characterised by over ambitious assumptions of my available energy as compared to my likely energy expenditure. It sounds like a thermodynamics problem and I’m quite good on thermo-theory, but it seems not so good on the practical side. As I have reported before, ‘spoon-theory’ is the route suggested by my wife, and I have dabbled enthusiastically, but then I’m just ‘waiting’ for more spoons, so ‘waiting’ again; clearly, I’m not a good ‘waiter’.
Of course, in the broader context I’m simply ‘waiting’ for my cancer to become castration resistant and the next stage to commence, this then brings in the ‘watchful’ element. My wife will tell you that I was woefully attentive to listening to my body prior to the onset of this disease. I would work in the garden, manfully wrestling brambles or building infrastructure, and on return to the house my wife would enquire as to where all the blood was coming from on my: i) face; ii) arms; iii) legs; or, iv) back (please select one – maybe two). I would then discover some wound that I was blissfully unaware of. Since my diagnosis I have become hyperaware of my body: its niggles, its aches and pains, its changes – or not, its response to medications, the impact of side-effects, etc. During my chemotherapy, I found this new found skill very useful. I had lists of side-effects, I could easily check-off those that were present, those that were not and changes between these states – all very scientific and (you have to bear with me here for a geek comment) quite fascinating to do. Now I’m into the ‘watchful’ phase, but there’s no specific list of symptoms to ‘watch’ for, so I’m ‘watching’ out for anything that’s unusual - and there’s lots! Little aches and pains, significant aches and pains, energy level changes, being out of breath – or not, being tired – or not, etc. So, at what point do I re-engage with my consultant? I can’t ring them every day, but equally I don’t want to miss anything - so, a confused, and occasionally anxious, 'watcher'.
That’s where I am with ‘watchful waiting’ and this week I have been prompted to re-engage – my ‘watchfulness’ has initiated a ‘non-waiting phase’. A couple of times over the last six weeks I’ve had a dull aching in my lower back, these aches have correlated closely with exercise and haven’t lasted more than 48 hours before disappearing. However, last week, after a more vigorous bout of exercise initiated by Shirley, the aching started, became more significant and didn’t go away, by Monday I determined that ‘waiting’ would have to be suspended and I: i) did some research of my own; and, i) called the hospital.
My research suggested the most likely, but by far not the only, reason for the aching / pain is bone weakness caused by spaces left from the tumour dying back which have not yet been fully replaced with new bone. In these circumstances, exercise can cause micro-fractures in my vertebrae, which can lead to deformation causing the bone to press on my spinal column. In these circumstances, aching and pain are common (tick), numbness / tingling in legs are likely (a partial tick for this in my left leg), bladder / bowel control issues (no tick – thankfully, this does no sound pleasant). When I spoke with the nurse, she asked about my legs and bladder / bowel – we were, as they say, ‘on the same page’. The outcome, I’m on OTC pain killers for five days, I’m to keep a ‘symptom diary’ and I should take things easy. Three days into it now, the aching / pain has receded – I know I’m on pain killers, but it is less in the morning when I’ve not had a pill for at least eight hours, so the signs are positive … so maybe ‘watchful waiting’ isn’t so bad. I’m certainly looking forward to getting back into the ‘waiting’ phase and hoping it lasts a long time!
