1. Kind GP with a lovely telephone voice (the one whose text I got at 00.15 one morning offering me a consultation if I rang back within half an hour?)...anyway, nice GP has made his referral to Rheumatology. At our last consultation over the phone - last Monday? - he told me Rheumatology had suggested he try me on a mild steroid treatment used for rheumatoid arthritis, which I don’t have, OR that they could talk to me. Since steroids and I do NOT make good bedfellows (I’ll end up with more side effects), we agreed on the conversation as my best option for now.
2. Nice oncologist, Dr E, made it clear she expected Rheumatology to have seen me and to have ruled out all rheumatological (?) problems by the time I next speak to Oncology on 10 July. She sent them a copy of the letter sent to me, rather vague and, like all oncology letters, still inaccurate, which hardly suggested any sense of the urgency there is. It just said that she and I thought it would be a good idea to be seen by Rheumatology before my next treatment.
3. Rheumatology is still in the lockdown mindset of See No Patients. They sent me a letter, following Dr L (GP)’s referral saying a clinical decision had been made that I didn’t need to be seen and my GP would contact me, as he did, to discuss their suggestions as a way forward. In response to then getting the oncologist’s letter, they sent me a further letter reminding me I didn’t need to be seen and that this was normal practice in the current crisis (understood). Unfortunately I didn’t receive that letter until I’d had the conversation with my GP and agreed that it would be better to take up their offer of talking to me so I don’t know if the ‘clinical decision’ includes that offer to talk to me or not.
Lost the will to live by now? That’s how I feel. I can understand a hospital clinician thinking maybe a GP’s referral can wait but not an oncologist’s. If you’ve got so far as to require the services on an oncologist, your health may not be the best and if you have had oncology treatment, it may well have affected your health in adverse ways as well as killing off those nasty cancer cells. I’d have thought the rheumatologist would recognise that the oncologist knows whereof she speaks (where’s that from? Probably Shakespeare. It’s always Shakespeare). Instead I get a feeling they already think I’m an outright pain/hypochondriac who needs a sharp reminder to stop fussing.
Am I fussing? My instincts say yes but my body and common sense say no. I can barely do more than hobble now, unless there’s a fair bit of preparation of my knees and heels. My hands are awful, with all the pain of rheumatoid arthritis but none of the visible effects (because I don’t have it). I have problems holding cutlery now. I’m clumsy and can’t do simple things like lift the kettle or open a bottle. My worry is, if this has been caused by the zometa and it’s still getting worse even though my last treatment was 5 months ago, what if the next treatment makes it worse? What state would I be in? It doesn’t make sense in that it’s 5 months since any treatment, but the onset and the deterioration fit exactly with the treatments. Something in my chemotherapy has caused this and I don’t care if it’s oncology’s or rheumatology’s responsibility so long as SOMEONE/ANYONE explains it and resolves it. I’m very reluctant to have the next treatment if there’s a risk.
But a phone conversation with an oncologist who will not be up to date with my notes (it’s always someone different) is going to be hard if Rheumatology hasn't ruled out the rheumatic side of things, putting the ball firmly back in Oncology’s court - where it belongs. I will only have the weekend to make a serious and informed decision, without much information, because I can safely predict the oncologist will say ‘we don’t know.’
By now you’ll have worked out why I’ve put off writing this. And I do apologise. As they used to say at the beginning of Soap (the comedy series in the ‘70s?) “Confused? You won’t be after this episode of Soap.” And you ended up more confused than ever. Oooh, you can buy it on a t-shirt!
No comments:
Post a Comment