Since Tuesday I’ve been in hospital to investigate a horrible new pain in my lower back. It started suddenly and unexpectedly, but fortunately it came on AFTER a really happy week in Sydney with Mum. I’m glad to have had that. The pain is sciatica, with spasms shooting down the back of my leg. (Of course, as much as I can, I’m trying to sit cross-legged and do the other relevant yoga.)
I have had MRI and CT scans, and yesterday the top Palcare* Professor was here at my bedside. She said the cause of pain may be a little tumour in a lymph node which has begun to press on a nerve, or it could be something else. She thinks radiation therapy may help, and tomorrow we will discuss it with others in my medical team before deciding what to do.
They are looking after me really well in hospital and I would be comfortable if not for the pain. I’m mostly ok while resting, but the problem is visiting the bathroom. It’s terrifying! Yesterday’s huge breakthrough was finding a better dose of the right drugs for the times when moving is unavoidable. I am building confidence again, and when I relax, the pain is reduced. I’m learning some new strategies for relaxation and distraction, including deep breathing, also singing in foreign languages (for example my new Bulgarian repertoire).
John and the kids have been really fabulous and so thoughtful! They cheer me up a lot. I think they have had a very rotten time of it all.
I had no chemotherapy this week because it’s the 4th week of the cycle when I have a day off for recovery. However, instead of my first holiday, I was booked to have a portacath installed under my collarbone. It’s a handy little device allowing access to a vein for blood tests and for chemo. The idea is to give my arm veins a rest from all the hole-punching. The surgery was supposed to be on a day visit, but conveniently I was here in hospital and had it done on Thursday.
As this hospital stay was unscheduled, I had to wait for juggled appointments and there were 2 long days of nil-by-mouth, hungry and waiting for surgery! However, weekdays in hospital are very busy with visitors offering physio, pharmacy, psychology, nursing, palliation, shower assistance, blood tests, oncology, nutrition, and more. It is hectic being a full-time patient again. I wish I could go back to part-time.
Back-tracking, my first 3 weeks of chemo went quite well with not too many side effects and I have been full of energy, enjoying myself. The only bad thing is sore and cracking thumbs, exacerbated by the daily struggle with my heavy-duty compression stockings. The doctor recommended BOZ cream (containing boric acid, olive oil and zinc) and I think this helps. Also, Robyn, years’ ago you gave me a tube of Eulactyl Gold which I’m still using and feeling very grateful to you.
Meanwhile my hair has been falling out all week. This morning a nurse shaved off the last spindly fluff and now I’m bald. I’ve continued to be troubled with lymphoedema in my legs and abdomen, and starting to feel sympathy for Petunia Dursley, Harry Potter’s aunt who puffed up and floated away!
THANK YOU for your well wishes and please know they are reaching me and working their charm. I seem to be unable to keep up with proper replies to everyone at this stage, however.