@EachandEveryone I agree with reaching out to the palliative care team. During my 5-week hospital stay in January and February palliative care team were amazing and very pro-active in terms of managing my pain and anything else I needed. And were a shoulder to cry on. I didn’t even have to ask for them, there must have been a protocol that triggered it.
Funnily enough, I also kept spiking temperature every single day, around 39 every single time. Usually in late afternoon, like bloody clockwork. Eventually it got better but I was on 3 types (if not 4) od antibiotics, all given via IV, I never had a break from being hooked up to IV for about a week. At one point I was hooked up to 2 of them, left and right. Which made going to the toilet, ahem, interesting.
Your medical team cannot just give up on you like that. I almost gave up myself and made up my mind to go to the hospice as my mucositis was that bad (oramorph didn’t really touch the sides, especially at night time) and palliative care team were so supportive in terms of leaving it up to me what I wanted to do next, At no point did I ever feel pressured to “give up”. In the end it was my oncologist who indirectly persuaded me to give this weekly Epirubicin a go. Which in my case is the last treatment NHS can offer.
Can you speak to a member of staff voicing all of your concerns? Is there anybody who is willing to listen and advocate on your behalf?