68. What’s going on?

So I promised to update again after the scan, and also said I know these things tend to escalate quickly. And lots has happened this week, and much is still uncertain. So I’ll give a quick update as promised, but can’t guarantee much detail I’m afraid!

Monday – the MRI scan

I was due a scan around now, but what I thought was a migraine last week, stood its ground far longer than a migraine should. Also, having never had a migraine before, I just assumed that’s what it was because it was far worse than any headache I’d had before. But when people started sharing advice on how to treat and manage symptoms (dark rooms, cold compresses, 3-4 days etc) and none of that made any difference, and nor did 4 x 1000mg paracetamol plus 3 x 800mg ibuprofen, daily, for over a week, I knew it was more than a migraine, so my MRI was brought forward.

So on Monday, I went in for the MRI expecting trauma – an MRI consists of a series of short c3 minute scans, one after the other, and the accuracy of the overall picture depends heavily on how still you can stay while they take each scan. By Monday, my head was pounding about every 30 seconds, for up to ten seconds at a time, and the only relief I found was by breathing heavily or holding my head in my hands (I swear my neighbours thought I was either having a baby or trying to make one, with all the panting going on in my apartment over the past week or so!). Luckily the scan was fine, but afterwards the doctors took one look at me and pretty much said ‘you’re in too much pain to go home, so you’re staying here, if that’s ok?’ So I’ve been in hospital since Monday.

The (as yet nameless) new intruder (bottom at the back

The dark circle is the cyst filled with fluid, inside which is the tumour (the white area) the darker shaded area above it is the oedema which was swelling into my brain stem, causing the headaches

The scan results quantified this decision, showing a new tumour in my brain, at the back, bottom left. The tumour is surrounded by a cyst filled with fluid. Together, these are around the size of a ping pong ball. As with my first tumour, this mass is also surrounded by oedema – fluid generated by my immune system – which causes swelling in the area while it tries to fight off injury. Last time, the swelling from this oedema put pressure on my motor system, which caused paralysis down my left side – that’s how we knew it was there. This time the  swelling from the oedema was putting pressure around my brain stem, blocking fluid from getting into/around my brain, and this was causing the headaches. So after Monday’s scan, they put me back onto dexamethasone to reduce the swelling from the oedema, and gave me a few huge hits of morphine by IV, to reduce the immediate pain. These two treatments now mean my pain is gone but I’m not out of the woods. The tumour and cyst are still there, and the scan also showed a number of other, smaller, new tumours in my brain, none of which are currently causing issues right now, but that’s just a matter of time.

So what’s the plan?

We have options, but the bottom line is now less about which treatment will do me the most good, it’s a balancing act of affect / benefit, vs impact on quality of life, and timing / availability of treatment in the current COVID-19 climate / capacity. These are conversations, decisions and plans which we’re working on right now, and we should have a clearer picture in the next few days.

So I don’t have answers yet. But I’m conscious of promising an update after Monday’s scan and subsequently receiving multiple messages from people wondering why I’ve gone quiet!

So this is where we’re at. I’ll update again when I know more, but in the meantime…
The headaches have gone; I am now on meds to keep in that way; and I’m in hospital (because it’s the easiest place to respond if anything changes – while we are in lockdown, I can’t simply just in an uber or on a tram to get to hospital, and even collecting meds from the pharmacy has to be planned!) But I can go home if I want to (I’m not at death’s door!) But I’m not in perfect health either (there’s no avoiding that). So I’m staying here in hospital for a few days (where I’m surrounding by people who can react if needed), just while we firm-up a plan of what to do next.

The rentals are still holding up the Yorkshire fort 🙂 and the Dutchies are brining wine into the hospital each night and tea/cakes during the day, so I’m probably actually getting more social interaction than most people at the moment!

But there will undoubtedly be more news to come soon, so as soon as I have it I will share it, as soon as we’ve had chance to absorb it first!

Big love
Boxy xx