Mainly, because it’s horrid.
It’s odd at the moment – being back in the full throes of treatment and being a patient and ending up in hospital at all hours of the day and night because one part or another of my body has decided it isn’t going to play ball. Because it feels like so long since I’ve felt ill. The treatments have been going on, the scans have been happening, we’ve been full steam ahead and life has been normal, but since having the electrochemo at the beginning of May, it’s been one thing after another and I have to keep reminding myself that it’s only been like this for 7 weeks and it Will Get Better.
After the electrochemo there were the headaches and the flashing lights and the being told that I had cancer in my brain. Then came the radio. As ever, the team at UCL did the most amazing job of looking after me and the actual process of having the radio was very dealable with. I went in to have my mask fitted (weirdly like a very clinical facial where a warm, soft plastic sheet is laid over your face and gentle hands pat it down to form a snug mold of your face). When you go in for the treatment you lie on a table, your personal mask is placed over your face and then bolted into place so you can’t move out of the line of fire. There are a few beeps, then a long eeeehhhhhh sound (during which I recited a little mantra “the cancer is dying the cancer is dying the cancer is dying”), then a gap, then another eeeehhhhhh (more mantra), then the clips are off and your head’s free and you’re off into the big bad world again. From lying on the bed and having your nose mushed into your face to the clips springing free was 10 minutes max. If that. No messing about. In out, shake those pesky tumorous cells all about.
The ONE annoying thing about radio though… I’d been warned about the hair loss, I knew it was coming, I had the wig ready, I was primed. Not a SINGLE hair fell from my head until the last day. Ten days in and out with lustrous locks. Thinking I’d beaten the system. I’m now sitting at home in a baseball cap. Lured into a false sense of security and living it up like the Hamlet cigar man.
And so onwards. I knew the side effects would last after the radio – occasional headaches, tick. Maybe the odd flashing light, tick. Tiredness. Tick. Curling up on the sofa for the afternoon watching yet another antiques programme has become quite the past time for me and Ma B. All doable, all fine.
And then just when I thought I was coming out of the woods and would be crawling into feeling normal again……………. Pancreatitis. It’s horrid. Thursday night was spent in excrutiating pain – I went to bed at 7pm to lie down because every muscle in my abdomen felt like it was being wrung out like a sponge. Couldn’t lie down flat though. Or on one side. Or on the other (although that was marginally less horrendous). Deflatine for trapped wind I thought! No. Paracetamol? Nothing. Ibuprofen? Pah. Morphine? Proper drugs? Nope. You just lie there writhing about a bit love. So much for my “if I fall asleep my muscles will miraculously relax and all will be well with the world”. Doesn’t work if you can’t fall asleep. Or if that’s just quack medicine made up in your own head. So at 4am I had to call poor Nse one of my amazing chemo nurses, wake her up and ask what the heck I should do. By quarter past four me, Ma and Pa were hoofing it to the Whittington and by quarter to five I was in a bed being hooked up to a drip and having very lovely A&E doctors very tenderly prodding my very sore and very distended tummy. I looked like I was about 3 months pregnant.
The pancreatitis diagnosis came quickly. There was something in my blood that should read in the 30s or so. My level was 457. Not good it turns out. Painkillers and fluids and the loveliness that goes with everyone who works at the Whittington and a few hours later I was transferred up to an amazing private room with views looking over the whole of London. As we’ve seen before, you very much have to look for the silver lining in this game and that room was the biggest treat.
I then spent the weekend whinging that I wasn’t even proper ill. That I’d BEEN proper ill and this wasn’t it and was just bloating and a bit of pain and it was all just too frustrating and boring (for most of my bending over backwards to win NHS patient of the year I can be a right old whinge-bag to anyone who’s not a doctor or nurse sometimes). Luckily, Analie advised me from Googling what pancreatitis was, so I just carried on feeling sorry for myself, drank my water like a good girl, weed into the buckets they gave me, and accepted everything that came my way. Until Sunday when the pain and bloating had significantly reduced and I (somehow) managed to get myself discharged on a Sunday evening. Unheard of, and very gratefully accepted.
I saw Dr Spurrell on Monday, after going in for them to check all my blood levels were continuing to return to normal. Seemingly the pancreatitis has been triggered by the steroids I needed to be on for my head, so I’m weaning myself off them as fast as medically recommended and possible. SHE thought I was big enough and ugly enough to know what pancreatitis was, so she told me (after telling me that often it’s something that big boozers get and I haven’t even had a SNIFF of wine since Rome, and even that was on a very pared back level). Apparently it’s when your pancreas gets inflamed and starts leaking digestive juices. Which, because they have nothing better to do, start digesting you. Like, your innards.
So yeah, proper ill. Just for a day though.
But anyway, I’m out now and better and looking forward to clambering back to feeling normal and being normal and getting right back on the board.