Syringe Driver
During my whole stay in hospital, I had to use a syringe driver, which is a small machine with a plastic needle that goes into your skin and (as the name suggests) it delivers a syringe full of medicine subcutaneously over a certain period of time. For me, it was anti-sickness drugs over 24 hours. When I got home, I tried moving onto oral tablets but my digestive system just wasn't able to cope with absorbing the medicine properly and I started feeling very sick almost immediately so May and June was spent hooked up to my little syringe driver friend which came everywhere with me, and the local district nurses came to change it every day.
Luckily, some wonderful volunteers at the Christie sew these amazing little bags to carry them around in, and I was able to nab a couple and bring them home with me so, aside from the tube coming out of my arm or stomach (depending where the needle was located), it wasn't obvious I was plugged in. Some things really make you feel like a cancer patient but when you're able to abate them with trendy little bags, it makes all the difference. Thank you so much to whoever makes them - it really does mean a lot.
When I was discharged, I was on SO MANY MEDS. Seriously, so many. It was ridiculous. It took me about an hour a week to get everything into my pill box.
Happily I am down from about 60 a day to around 15 a day now.
Cancer
And what of the cancer itself? Well, the immunotherapy did start working and tumours had started 'melting' away but in May, a couple of new metastases popped up so the team at the Christie and I jointly decided to start me on targeted therapy - a two-drug combination of dabrafenib and trametinib. These are tablets that I take at home with a three hour fast as I take them - very easy. They are new drugs which have only been available to stage 3 & 4 patients for a couple of years so the stats are fairly new. What they seem to show is that in a lot of people, they work for around 10-12 months before the cancer gets 'clever' and finds a way around the drugs. I'm going to cross that bridge when I come to it. If I come to it.
Side Effects
I've had some side effects from the dab/tram: severe joint pain in pretty much every joint, which I'm back on steroids and morphine for and waiting to see a rheumatologist about, very sore soles of my feet, and hair loss. The latter has really caught me off guard. I thought I would be totally cool if I ever had to shave my head or lose my hair but actually I have cried so many times because I am losing my hair.
This is the current state of my hair. Very thin and patchy. I went to the hairdressers last week to see if they could do anything, half expecting to come away with a shaven head because it really is very thin and I have never been blessed with thick hair in the first place. As luck goes, the hairdresser I got used to run the salon at the Christie and is used to dealing with 'cancer hair' as she called it, so she did a fairly good job of hiding the bald patches.
I do still hate it if I am being totally honest. I want my old hair back, down past my elbows. It's always been a good place for me to hide behind. This haircut ages me by about 10 years and is the shortest it's ever been. I know, I KNOW, that this is the least of my worries. This is one of the quirks of cancer: you just don't know what will hit you and how. If you'd asked me 3 months ago how I'd feel about losing my hair, I'd have told you it wouldn't have bothered me. I have been stunned by how upset I am. Part of me wants to just shave it off instead of dealing with the daily handfuls of hair that come out each time I wash or brush it.
Sadly in June I had to say au revoir to my lovely picc line when I woke up one day with severe pain in my shoulder and a really swollen right arm. I thought I might have just overdone it in the garden and got a soft tissue injury, but when it hadn't gone down the next day and my district nurse suggested I might have a blood clot, I hightailed it down to the walk-in centre, who promptly sent me to A&E. They confirmed the likelihood of it being a clot in the vein where my picc line was, and then spent 8 hours trying to unsuccessfully canulate me in every area possible including my foot (OWWWW) so they could give me a CT scan. Eventually they gave up and let me go home, on the proviso I came back the next morning for an ultrasound. Happily, this didn't require canulation, and the scan man was incredulous that they had spent so long trying for a CT that he said I didn't need and was totally pointless. In no time, he had pinpointed the presence of a clot which had, by now, travelled up my arm and was resting in the junction of my aorta and another vein. My eyebrows must have shot up at this news because he reassured me it wasn't as scary as it sounded, and so long as I injected myself with fragmin (blood thinning) injections every day for a couple of months then I would be fine and my body would break the clot up itself. So that's what I did. As horrendous as the idea of injecting yourself in the stomach every day is, it turns out you get used to it and it isn't as bad as it sounds (not that I would volunteer as tribute for it). Anyway, after a few weeks my hand and arm went back to normal size so presumably the blood clot has gone. It's a bit yin and yang - no risk of a PE but I do have to have my bloods taken the usual way again now.
Baby Steps
Sometimes I get so frustrated by how tired I am or how little I feel I can do. I have started back at work again two days a week, but I get home and feel shattered, even though I'm just sat at a desk all day. But then I look back and think that three months ago, I couldn't even climb my own stairs in one go. Now I am back at work, I've joined the gym, I am swimming over a mile each time and can easily walk over a mile now without getting too out of breath. It's just one baby step at a time.
My next baby step is in two days when I have my next set of scans: a CT for my chest, thorax and pelvis, and an MRI for my leg and head. They're every two months now I am on targeted therapy. On one hand, it's good that they keep such a close eye on me but on the other hand, it's crap to have to go through scanxiety every eight weeks. My last set of scans were clear but I know that could change at any time. I'll update you when I've got the results.
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