I’ve been reluctant to moan for a while; everyone’s struggling with their own shit at the moment, so reading mine will hardly help, will it? But I also felt it’s time I did an update, as the blog’s not just about helping other people, it also helps me, both in releasing any frustration as well as negating the need to repeatedly give people an update on how I’m doing!
On the plus side – I’m corona-free (as far as I know!), although I’ve seen a drive through testing centre?! Last week, I had a routine appointment for an Xray on my hip (this was scheduled for eight weeks after radiation, to check it was doing ok). I’ve had barely any pain in my hip since radiation, just first thing in the morning, which wears off as soon as I’m up and about. I’ve also since had radiation on my lungs and they’re now giving me barely any pain (just the occasional twinge, which soon goes – it’s more like Mutley just reminding me that the battle’s not over, he’s just been put back in his box for a bit).
Radiation definitely provides respite, there’s no doubt about that. I generally feel a bit lethargic for a week or so afterwards, but the pain goes away within a few days and tends to stay away for a few months. So I’m able to handle treatment whilst leading a normal lifestyle, and don’t need any support. So even having more than ten treatments during lockdown, I managed just fine. In Amsterdam, they run a similar scheme to ‘Zipcar’ in the UK, where there are hire cars parked up all around the city, which you can book by the hour on your mobile. You use your phone to locate, unlock and lock the car and I just take Dettol spray and wipes with me, give it a good clean before/after (those days of valeting cars as a University job have come in very handy in knowing the places to wipe down!) and I avoid the risk of contamination on public transport or taxis (it’s too far for me to cycle there and back). So treatment has been a breeze – I’ve carried on working, writing and doing the usual stuff, and probably seen more people than most during lockdown (the hospital is super quiet; seating areas cordoned off, and the only departments open are radiation and maternity. The hospital I go to is primarily outpatients, or day clinic appointments, so there’s no coronavirus cases so far).
Last week’s Xray was at a different hospital, which was equally quiet but had a corona virus testing point outside (which I assume was for incoming patients) but I was pleased to see it empty. The Xray showed a slight growth in the cancer masse in my hip, but it’s still not touching the cortex of the bone, so fracture risk is still low, and as it’s giving me no pain, they’re happy not to see me for another eight weeks.
This and the radiation effectiveness are all good news, but they’re palliative – they’re treating the effects of cancer rather than the source. So last week, my Oncologist put me onto a new hormone drug – it’s the fourth one we’ve tried: the first one (tamoxifen) didn’t work work; the second (anastrazol) worked for a short time before the cancer got smart to it; the third one gave me nasty side-effects, so we stopped it; so we don’t have much hope for this one, but anything’s better than trying nothing. So last Tuesday I started taking exemestraan. As with any drugs, there’s always a risk of side-effects and as long as these aren’t detrimental to my quality of life, we try and put up with them.
But as this journey continues, I keep learning.
Sometimes, I learn great stuff, like the value of fresh air and sunlight (of which I felt terribly deprived while in hospital after surgery – being wheeled between hospital rooms, I still remember the first time I was transferred while able to sit up in bed, which meant I could see out of the window – that view was the best ever!) Or the privilege of being able to travel (which I guess many people are also now learning – my first trip after recovering from brain surgery was to Baku, this time last year, and this weekend I was flicking through the photos from that trip and reminding myself just how epic it was, and how lucky I felt to experience it).
But sometimes the learnings aren’t so good. In 43 years, I’ve been lucky enough not to have experienced a migraine, as far as I know… the doctors always try and get me to quantify my pain on a scale of 1-10, but one person’s 3 could be another person’s 8, right? So when people talk about migraines as being like REALLY bad headaches, I reckon I’d never had one, because headaches have never wiped me out (and mostly been self-inflicted to be fair)! But in the past four days, I’ve had a constant banging headache which, every now and then (sometimes three times in an hour, sometimes with an hour or two in between), have escalated into a throbbing in my head which has literally had me crying and holding my head in my hands, desperate to do anything to just make it stop). So I guess this is what a migraine feels like? And I now consider myself ‘experienced’ in having had one… for four days. It’s awful – migraine sufferers out there – I now feel your pain, I can empathise and, whilst I’d never offer to swap with you, if it helps to know I get it, I get it!
That said, I’m also now faced with another issue which I’d not swap with you. I have a history of brain tumours. So the hypochondriac in me is wondering whether this continual headache is actually more than just a migraine?
It could be a side-effect of the new hormone drug (my Oncologist has told me that side-effects can be temporary while my body gets used to the new drug, and can wear off – in which case I should ride out the storm before stopping the drug, so we can see if it’s tackling the bigger issue – there’s a greater gain there, and if I have to revert to the old morphine again while my body adjusts, I’ll take that, if it means it’s fighting the cancer in my body). But it could also be a sign of something worse, and however optimistic I try to be, that’s a thought that never leaves your mind after you’ve had what I’ve had. I’d be lying if I said otherwise.
So my routine MRI (which was scheduled for 15th May) has been brought forward to next week and the docs are going to take a look, if nothing else to reassure me that it’s not Dastardly coming back for a third attempt.
But the realist (and planner) in me is also bracing for impact. I know from experience how fast this thing can escalate. So my will is updated, I’ve given spare housekeys to my mate (locally), and left a bag with a list (obviously) of what I want bringing into hospital, in case I have to make an unscheduled visit.
So there it is – the shit sandwich, as they say. Good news > bad news > good news. Hang on, I need to end on a high don’t I?!
Well there’s always good news… my folks back home are keeping well and occupied making and delivering supplies to the NHS, my cousin hasn’t been deported from Australia, and one of the first questions the oncologist asked when we spoke earlier, was whether I had any other symptoms than the headache (such as loss of mobility, sensitivity etc) – I’d been thinking about and looking out for this too… the headaches feel like I’m being whacked around the back of my head with a baseball bat, and that would cause spinal issues, such as paralysis. So I was VERY relieved to report no such issues, not even in my ‘dodgy’ arm (which is usually the first place I have issues when my body is going into ‘fight mode’). Nothing to report, I’m still able to walk, I’m still going out for a coffee every day, it’s not far and I don’t hang around long, but I’m getting out and have no problems with mobility, unless I bend down or get up too fast and the blood rushes to my head and the pain kicks off… And knowing my MRI has been brought forward gives me comfort that this time next week I’ll know more. And I always prefer to know – I’ve always said that, even if it’s a crappy outlook, I’d rather know then I can deal with it.
So there’s the good news to finish on. For now. And as soon as I get the results of the MRI, I’ll update again 🙂
In the meantime; stay home, stay safe, stay well and when this is all over, you’ll find me at the bar (preferably with bubbles, on a plane or in another country, assuming BA don’t become the next casualty of C-19!)