Yeah it’s all a bit rubbish! After a reasonable weekend things took a turn. i called advice line yesterday about sore throat/white tongue plus godawful burning pain in fingers, they suggested mouth wash from gp, but despite me asking for it to go to local pharmacy GP sent to wrong place and went to online version so have a wait for delivery. And the nurse on helpline spoke to registrar who said the finger pain ( that’ll be peripheral neuropathy)wasn’t something they could do much about as a known side effect though it may inform next dosage. It’s so hard to even get painkillers out of a packet!
However although I felt it was a bit vague, I felt I had down my bit in calling. And one thing the helpline always seems to do is call back the next day to follow up. So I was expecting a check in, and got the most amazing nurse who was most frustrated about the pharmacy mix up, and was very sympathetic to how awful am feeling… and who has, I kid you not, said to leave with her and she offered to DROP IT ROUND TO MY HOUSE on her way home from work as she knows I don’t drive😫 she also thinks I may need flucanazole as well as mouth wash as my tongue so white and was going to talk to oncologist (my main oncologist, not registrar) to check. Assuming she finds my house okay I should get an early evening drop off of medication which is reassuring. She said if things get worse I probably will have to go in, as am obviously feeling dreadful, but thinks I am okay at home for now.
Once again I am overwhelmed by unexpected kindness.
To be honest I realised I have one flucanazole iny drawer if absolutely necessary but obviously they are trying to supply mouthwash to and I think just seeing the nurse will reassure me a bit.
Had district nurse yesterday and while she was cleaning pICC I came over all funny and had to lie down with legs in the air! She was very kind too and said she’d be worrying about me all day! I think I look how I feel this week!!
My PICC took a long time to settle @nib32 but it is a good thing and does make life easier. You also get a weekly visit from district nurse, which can add extra reassurance sometimes if you need a second opinion about calling advice line!
I know people have used suzzi pads for hands to prevent neuropathy during treatment but not sure how they keep them frozen when I am half hour from hospital, and allowing for traffic and delays it’s usually an hour and half at least before chemo kicks off, by which time the gel pads would have defrosted surely? I have no idea.
Positives: less intense nausea than eC. I could not have coped with that on top of this, mentally
Also it brooks no arguments, I have to stop. There’s an odd relief in knowing you just have to lie down, that you can’t possibly work, there’s no danger of pushing yourself or dithering about doing things because it makes the decision for you. That’s a flip side to a negative.
So bed for me and riding it out and hoping next week is better. Hoping nerve damage does not get long lasting though. I am an artist, the idea of my hands being like this long term is distressing….