The past week seems to have cast a lot of shadows, but not just for me. Feeling rather like the world has gone crazy (and indeed it has) but I am becoming more resigned to the fact that it is part of a cycle for which debate and engagement is the appropriate response. A friend, yesterday, suggested that spouting off in an echo chamber was useless and that we need to return to the days of talking with the very people whose views differ from our own. We need to learn/re-learn to debate our position rationally whilst also actively listening to other opinions.
Political blindsiding has not been all…I seem to have been dragged back (with some token kicking and screaming) into the world of being a “patient” again. Despite being what I think of as a hospital regular, stuff has changed in my absence. New scanner (with a different voice) plus the facility to watch movies, not that the staff have learned that part yet! Sadly still the same dye injected into veins that makes my mouth taste metallic with the added bonus of the “warm” (not fuzzy) feeling as if you have become incontinent.Cancer! – such a riot!
All this week’s medical appointments seem to have ended up focusing on my heart function. I am unsure why and asked if my blood tests had been worrying. They hadn’t. I asked if there were any other indicators that were awry. There weren’t. Nonetheless 3 doctors in 4 days does make you wonder. Maybe it is just something to add to my flailing round in the dark state. Still, more doctors, more tests, more clinics over next 2 weeks so maybe something (benign) will emerge.
…and just to throw something else into the mix of the darkness theme, our cat has gone blind.
But I have just discovered a bright side. Glitter grout. Who knew?
Maureen Lipman in the 1980s has to be my role model in so far as counting my success in my own particular “ologies”… and here she is.
This week I have had letters from: neurology, radiology, oncology and cardiology. I am assuming that this is part of continuing quest to discover which box they are going to try and put me in. I thought we had agreed that neurology had been struck off, but it appears not. No idea where the referral has come from or for what, but says in the letter, the ominous “expect to be in the department for some time”.
I imagine that there is no line of communication between the “ologies” and wonder what happens after whatever tests/findings are completed. Think I will need some sort of co-ordinator or one of these new NHS “navigators” (but suspect their role, whatever it is, will not cover what I need).
Suffice it to say I am neither planning to be put in a box (of any kind…) nor visit all 4 departments routinely. Not how I intend to spend my time BUT I am going through the motions insofar as required for any possibility of future travel insurance and driving.
Unsure how well known this hasthtag is. Brought to life by the wonderful Dr Kate Granger – a doctor in Yorkshire turned patient by cancer. Read her book The Other Side.
I have not been silent by choice. After an infusion of acute stress last week my reaction was a near fatal collapse – blue lighted to hospital, 5 days in intensive care, when my family were gathered in the small hours to be told that I probably wouldn’t make it through the night. After being ventilated, intubated, gastro fed, catheterised, lumbar punctured, scanned, x-rayed, monitored to the nth degree and many bits too gory and hallucinatory to mention I remain undiagnosed but fit to communicate, even though fit for very little else…although I have at last been able to have a shower.
It is so comforting to know that even as paramedics cut off my clothes…my cat remained asleep next to me…Not so, my son…my rock.
So, my plans for doing the “living to death” have taken a dramatic nosedive or diversion at the very least until neurology/cardiology find a diagnosis that is compatible with travel…some hope eh…? At present a hairwash feels like living the life. The options currently range from stroke to living with type 1 diabetes and other delights. Me..I expect no definitive diagnosis.
I have lots to say about the ups and downs of this continuing experience. How dare anybody complain about our NHS and the dedication of all its staff. How dare they challenge the rightful requests of our junior doctors. I can only think they are people that sit behind desks and don’t ever see life at the true coalface.
When I did not show up for my oncology appointment because of being hospitalised in a different hospital, my wonderful consultant looked me up on the hospital system, saw what had happened and phoned me on my ward to talk with me.