Thursday 6th June 2019
“The whole time, you’ve not moaned about anything anywhere near as much as you have this” —  Jayne Evans !

Just shy of the 3 month mark since chemo finished, and it’s almost gone and forgotten. One obvious reminder is the hair ! It’s still not grown back fully, but it’s growing back now to the extent it did before. It seemed to take an age to get started, but now I’ve had my first haircut just to even it out, and I imagine it’s only a few weeks away from being back to as it was before. I had to renew my passport a week or two back, so a mugshot of me with a close cut has been immortalised in time for the next 10 years. Lovely !

The biggie though, I mentioned a number of times before the pain in my hands, Peripheral Neuropathy. At my appointment in early May I mentioned it to the Dr, and it’s just a case of waiting it out. It was starting to subside, and I’d say by mid May the pain had pretty much gone. It definitely has at this point, but….

They itch like an absolute bitch, pardon the phrase. Since mid May, over the last 4 weeks or so my hands regularly itch like mad, the itchiest itch I’ve ever had. Not an itch on top of the skin, itching that feels like it comes from inside, deep inside/under the skin. It seems to happen when I get warm/hot. For example, during the day it might happen if it’s warm in the office, or if I’m in a meeting room where it starts to get warm. A rise in body temperature seems to set it off.

I believe its the tail end of the nerves repairing themselves. Go back about 2 and a half weeks, and it would start to happen pretty much every night like clockwork at around 9.30pm. Apparently your body temperature rises at night, and it seems to trigger it. I’d get in bed, then the itching would just go mad and stop me getting to sleep. Then it will wake me up repeatedly when I do drop off. For the last 2 weeks, I’ve slept with no covers on, under the ceiling fan (and some nights with the dyson fan pointing at me too) to keep me cool, and it’s still started to itch and kept me awake after going to bed around 10.30 until about 2am – 2.30am in the morning. I’ve been really tired too because I’ve not been getting enough sleep.

I’ve bought creams like E45, 3 different anti-itch creams, and I also tried taking over the counter anti-histamines. None of said medications had worked, and it’s got to the point where I’ve itched so much that I’ve developed a rash on my hands. I also started getting the itch around my ankles, behind my knees, and on my elbows. I’ve also tried using the ice packs I bought, which do a great job of stopping the itch while they are in place, but it comes back as soon as I take the ice packs off. Now I just use the ice packs to try to lower my body temperature by putting them on my neck or arms.

So last Friday I went to see the GP as my next appointment at The Christie is in August and it’s becoming unbearable. I explained the back story with the Chemo, Peripheral Neuropathy etc, and got prescribed anti-histamines (same type and dose I had bought already) and some steroid cream for my hands. They’ve not made a difference and it carries on, although the last few nights it’s not seemed as quite as bad, but then the house has been cooler because it’s not been as warm outside.

I called the nurse at The Christie this week, who is there for advice. I am still under their care, so he was going to email my Dr for advice. He did say though, it was classic symptoms of Peripheral Neuropathy / nerves repairing, and it was likely I’d just have to grin and bear it. The nurse explained these symptoms are a good sign of the whole thing resolving itself, almost like this is the last stage, and the likelihood would be I just have to grin and bear it. He confirmed the stuff the GP prescribed won’t touch it. I remember the Dr said there is an anti-depressant that might help but it comes with it’s own issues.

Either way, the painful hand thing was a real disruptor, I needed help opening tins of beans, coke can’s and stuff. I am glad it’s passed, I like beans and diet coke. This itch though, I think I’d trade it away and take the pain back. I need a decent night’s sleep. I’m kinda coping with it, but I can’t wait for it to just ease off a bit, it’s gone on for weeks now. Plus I’m sick of itching, and my hands are sore now. Hoping the fact the last night or two haven’t been quite as bad is a good sign.

If you’re here reading it, hopefully my trial and error problem solving might help you find relief a bit quicker than I did. I’ve trawled the internet for help with this but there’s hardly any mention of the itching. CIPN – Chemo Induced Peripheral Neuropathy.

As Jayne says, I didn’t really moan about much when it was all going on in Jan/Feb time. This though, I desperately wish it would just bugger off, and quickly…