65. 3 down, 2 to go… and the devil reappears

So a quick update on last night’s post…

Radio #3 today

Yesterday’s radiation on my back was fine, still no increase in pain and no tiredness. It’s a bit hard to know what to expect this time round; last time I got radiation in one dose, the side effects arrived around four days later, and a day or so after that I felt good again. This time, I’m getting twice the dose but over five sessions. So I’m not sure when to expect the side effects – the daily dose will be lower, but the overall is greater, so the wet fish could rock up and slap me at any point.

This morning (after having had two sessions), I woke up to a slightly different world. I felt more pain in my back (I expected that) but also in my hip again (I knew last night’s post would tempt fate!) I went to the hospital for my third session, and found the place in near shut-down – no patients allowed beyond the front desk, until they’d been asked if they had any Corona symptoms. The symptoms I was feeling were what I expected from radiation (albeit earlier than I’d expected), so I said No. I was allowed through and headed down to the Radiation department.

They set me up on the bed, lined me up to the drawings on my chest and started the pre-zap scan (they do this every time, to make sure I’m in the right position). But what usually takes a minute to check the scan before cracking on, took a good five minutes today so I started to wonder what was going on. But eventually they went ahead with the zap and I came home.

About an hour later, I got call from Dr Jonker (my Radiologist) to say they’d seen some swelling around the radiation area. This is normal during treatment, as the body’s immune system sends edema to the site to check out what’s happening. Edema… my old adversary… for those who have followed the blog since brain surgery, you’ll recall that it was the volume of edema surrounding my initial brain tumour which put pressure on my motor system and paralysed my left arm. This time, they’re concerned that that same thing could happen where they’re radiating on my back – around the 2nd thorax vertebrae in my spine, into my spinal canal, very close to my spinal cord.

Dr Jonker suggested they could give me some ‘medication’ to reduce the swelling… and I knew what was coming next… the devil I battled for months last year… dexamethasone. I f***ing hate this stuff, it made my life hell – on top of isolation, throw in huge swelling (I put on 10kg), moon face (my neck disappeared and eyes went back into their sockets), mood swings, depression… the list goes on. Since then, I’ve given dexamethasone a wider berth that anything in the world.

Unfortunately, because the selling has started after just two sessions, and the location of treatment is close to my spinal cord, they want to be sure it doesn’t get worse while they finish my treatment. However, dexamethasone brings another risk – its job is to reduce the edema by suppressing the body’s immune system. Great! While the world goes into pandemic precaution / protection, we’re considering suppressing my immune system?!

OK, so I’ve fought off worse, right? My platelets dropped super low last year (normal is 150-450, 100 is a concern, 80 is very concerning, mine dropped to 13). They wanted to give me a blood transfusion but I said no; I’ve got this, my body wants to fight, and it did – I bounced back and my blood returned to normal.

So they’ve suggested we use a low dose (just 2mg – I was up to 16mg before) for 5 days (less than 7 days and you can just stop taking it, rather than have to ween yourself off it – I was on it for 7 months before). So whilst I don’t like it, I’m going to do it.

Dexamethasone is my kryptonite

To me, this stuff is the devil in tablet form. It brings back memories, worries and fear of the worst time of my life; when I hated how I looked, I despised how I felt, I was ashamed of how I behaved, and I couldn’t have felt further from myself.

But I have to remember that I also took dexamethasone (in smaller doses) during chemo back in 2016, and it didn’t have those side-effects back then. It’s also a lesser evil than the potential of swelling against my spine. I’ll be on it for a short period of time and, during that time, I’ll 100% isolate at home, on my own, and only go out for radiation. Luckily, my local cafe is doing deliveries and Gerben has already offer regular Picollos 🙂 And Amsterdam has a Greenwheels scheme where you can hire cars by the hour from locations all over town – three cars are within two minutes of my place, so I’m booking a car each day, wiping it down with Dettol wipes (AN: I’d love to say other brands are available, but judging by the supermarket shelves, I’m not so sure), driving myself to/from the hospital and going straight home afterwards.

So this afternoon, I’ll head out to collect the devil from the pharmacy, bring it home (will probably share a photo for entertainment purposes!) then I’ll be in lockdown for the next week.

The upside (there’s always an upside!) is that I made a deal with the Radiologist – I’ll take the dexamethasone, if she also prescribes me paracetamol (so I don’t have to go out and queue with every Dutchie in town to buy the minimum quantity they’re rationing at Etos!)

And this time next week, I’ll be back at it, back in the frustration boat with the rest of you, and will relish that first walk in the park like anything!

Until then – bring on the devil…

#BoxyOut

5 thoughts on “65. 3 down, 2 to go… and the devil reappears

Add yours

  1. Bok – it never rains but it pours! You continue to inspire me. I am literally falling apart – another bit of tooth fell out this morning – but I always think that if you can be positive, so can I.

    Thank you!

    With love


    Dick

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    1. Your tooth? I thought it was your eye? Have you tried antiseptic cotton wool, or perhaps rearranging the furniture (for full affect)… xx

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  2. Hell with the looks! You are fabulous all the time. It’s crap when you know the medicine creates hell for you! You have your experience to fall back on and help you through this lightening storm. I’m looking after the parents here (89 with leukemia) and 86 (COPD & diabetes). They have been isolated for weeks 🤞 for all with immunosuppressed systems. Sending you good vibes over the oceans! Xo

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  3. Sending you love and strength, Rebecca. What an inspiration you are! Can’t believe Richard is falling apart, he’s a mere youngster! Take care xx Jane xx

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