Instead of buying cards and presents, I got Dennis and me a journal each. They have Roll On Summer embossed on the front. I don’t know if Den is using his. It’s not in his nature, apart from meticulous details of each record acquired in whatever format since somewhere in the 60s. But he’s surprised me quite a bit now and then since September. If he has, there will be nothing about himself; probably just observations about me, my symptoms and my behaviour! I haven’t shown myself in the best light so far. I’m simply not a warrior!
My journal has grid pages and I try to keep a meticulous record on one side of medication, self-care, fluid intake and food intake. The right page is comments on how I feel, any changes (both physical and mental) and simple observations. I’ve maintained it every day, although recently there have been a few simple ‘ughs’ and only yesterday is virtually blank.
Everyone’s experience is different. I had an easy first five days. Steroids, of course. I ate better than normally, drank adequate fluids to maintain my 1.5L target, took the occasional cyclizine just in case I felt nauseous (I didn’t but I wasn’t going to risk it) and gained 6lb. That was a bit disconcerting considering my Christmas Day sales binge to re-equip a skinny person wardrobe but no worries - I soon lost it again once the steroid tablets ran out. Oh, this was going to be a doddle. How ridiculous and destructive to my confidence all that catastrophising had been.
I’d dreaded the steroids, having experienced a too-rapid withdrawal a couple of years ago following an inner ear problem. Now I just wanted them back. First the tingling began, then the heaviness so I could barely move. I felt like this was not my body. Going to have a pee was a major expedition. Constipation set in. I could do very little but feel utterly miserable from Day 6 onwards, tune into YouTube self-hypnosis (thanks again Michael) and ride it out. The last few days, I’ve not met my fluid target so I’m dehydrated; I’ve lost my appetite, so I’m weak and pathetic; and worst of all, I’ve felt anxious, resorting to diazepam when I really don’t want to.
I postponed my hair loss appointment as I could never have managed it. In the end, I rang the hospital for advice about the bone scan, which was scheduled for today. I didn’t fancy being radioactive anyway but physically I was pretty sure I couldn’t manage the trip. T answered the phone, to my surprise, asked pertinent questions, provided reassurance and clear advice. It was time to put some effort into all this (my words, not hers), stop lolling about feeling sorry for myself and help my body along (her words). She advised that I ate a snack (something that will fit in the palm of my hand) every two hours and drink, drink, drink. Add some movement, a change of scenery and, if moving around exhausts me, don’t return to the invalid bed.
So here I am, still in my pjs but not in bed, trying to use my brain again, eating every two hours, sipping energy drinks and suspecting that I hit the bottom of the trough yesterday and things may start to look up. It’s only Day 11 of a 21-day cycle after all. Roll On Summer.
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