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?
Re-living fractured, bruised yet resilient Eastern Europe – Bucharest to Budapest (with an off-piste trip to Black Sea)…enhanced by the company of John Simpson, Martin Bell and Nick Thorpe. So much history, currency, perspectives from the 5 countries. I may even have gained some understanding of the populations and border movements better
Back to the medical coalface now…bare minimum of appointments to enable continuing insurance. 2 hospitals, 3 appointments this week and then 2 the following week…
On my trip someone had to visit a Bulgarian hospital #countingmyselflucky
Reunited friends. What a lot to catch up on. 40 years of life’s diverse routes which brought 33 of us (our school year group) back to Harrogate, where it felt like it had all started. We have all had our share of successes, failures and tragedies. We had a Pandora’s Box of memories which when we started to put them together created a far better narrative of schooldays than I had been able to assemble for myself over the years. We also found a bounty of black holes and events I, for one, could not believe I possibly attended even with photographic evidence. And, who knew, that when we planned what we would do when we got into the real world, that we would be so adept at clocking up such an extraordinary number of ex-husbands?
So it has been back to normal life again this week, pickling cucumbers and preserving lemons, which is my sort of “normal”. My other “normal” is also about to kick in, with a bonanza batch of blood tests in the spirit of attempting to kill three birds with one stone. None of them quite at the right time for the different clinic appointments but experience of these endless check-ups tells me that it will be “fine” ( a pithy “fine perhaps…but that’s OK)…and I know I have to chase up scans that should have been done by now, but I haven’t.
I appear to have slumped back into my “Plagues of Egypt” period. Ants are attempting a pincer movement in my kitchen (worktops, cupboards, floor, bin) and my counter-offensive is proving useless. I have called for backup but apparently that can only be provided once the ants are identified…only garden ants or pharaoh ants can be “resolved” by pest control.
Whilst I was struggling with identification issues a friend knowledgeably remarked that the pharaoh variety sported headresses and sandals. I don’t have them. However the ant-man cometh and I am relying on the fact that:
- he has better eyesight than me
- I have the common or garden variety of ant
- he has better seek and destroy know-how than I do.
Identification is the buzz word of the week here. Identifying my medical “problem” and identifying myself. It appears that the hospital departments I contact do not have any record of me. I am wondering if this works like unsolved crimes. If I don’t exist then I do not need diagnosis or possible expensive treatment or monitoring and hospital “success rates” improve. My ECG results are..who knows where? My neurology results (from my hospital stay) are…who knows where?…and my echo results seem to exist only when I am physically in that hospital department. The chink of light is that my full set of CT scans are clear (I say clear in the sense that nothing new has popped up and that what is there is being kept at a standstill by the herceptin).
I am trying to see this as positive. If I don’t exist then I don’t have any medical problems, therefore travel insurance and driving need not be an issue. But it is never going to be that simple.
I am re-running…again…my brush with death. I am fascinated as those around me discuss the conversations they had that night and all the activity going on. I am totally aware of what a difficult time it must have been but where was I? What had happened to me? Why was none of it familiar? A ventilator? really?
However much I try not to dwell; feel sorry for myself; fester in all that continues to be taken from me and thrown at me…it is even harder to lose the noxious residue from the experience.
Next staging posts are 5 day ECG; CT scan and mamogram. It has proved impossible not to research the possibilities of what the ECG might reveal. It seems, to my very unclinical eye, that if anything is detected then the only thing likely to have caused as big an event as the one I experienced, is likely to need “treatment”. The specious likelihood of me signing up for another hospital specialty hangs there. I am feeling manouevred into a course of action I was deliberately avoiding. Endless waiting rooms, tests, ambivalent results – no…really not for me…BUT no diagnosis no travel.
…and, as for euphemisms, I remain unsure what word I am covering up. Some suggest that I had a faint others a seizure (albeit asymptomatic). If past performance is anything to go by it will be something named “other” and no need to euphemise about my nom de plume, other.
Just when I thought I may have honed recent “happenings” to something heart function related, my echo results show a marked improvement. My percentage (of what, I neither know nor care) has now risen from getting too low, even for a herceptin patient, to a normal range (I obviously use “normal” with caution). So from where I am – it looks like stroke, meningitis and heart function were not the cause of my “death”.
My next planned activities are oncology and R-Test Event Cardiac Monitor Clinic, then more CT scans and…just for an added bonus a mammogram. Party on…
I am severely drifting off course with what is “being happened to me” (I have even had to create my own descriptions). I did not want to drift into more and more diagnostic testing and spending my remaining life in hospital waiting rooms. However without a diagnosis there is absolute zero chance of either long haul travel or driving. So, how to deal with being fenced in?
I could, of course, make friends with myself again, adapt and accept that my ICU jolly has shrunk my horizons (as well as eating up a huge amount of the local NHS budget). And, given time, I’m sure I will, but I’m not there yet and am still keening for the relentless hand of brutality being dealt to me. Life seems to be sending me more than my fair share (surely?) of curved balls. And I am not going to respond in any kind of positive way, if anyone starts up about troubles only being sent to those strong enough to stand it…ENOUGH ALREADY!
Next stop – I need to try and claim money back via my travel insurance and try to organise this bus pass. I say “try” because I have very low expectations of achieving my goal. Another day of expect the worst, hope for the best
..but I have: hair; cold-brew coffee; a lovely place to call my home; books from Baileys Womens Prize and Wellcome Book Prize to read; Tom in the raspberry Ocado van coming my way and plenty more besides.
The ritual hospital parking nightmare…no spaces….park somewhere…worry exponentially about being clamped/fined/tarred and feathered (or…all of the above). Then, I sit in front of the oncologist and wait for my results to load…shift about in my seat, sense erratic breathing and then and only then the “only bad” news from the CT scan is that I am “too skinny…” ONLY? BAD?
House sale/purchase exchanged today….semi-house clearance today….scans clear…too skinny…WHAT??? too skinny hey…there’s a future! Bring it on…
Whilst I plough on with packing up the house, one of my cats seems to have come up with the plan of dispatching every form of wildlife on her patch before she relocates. There are now all too regular “gifts” of mouse heads at the bottom of my bed in the morning – 8 to date…as well as assorted body parts in various locations. The garden has been scattered with a range of corpses of un-identifiable small furry creatures and now….she has moved on to birds. Huge dead pigeon in garden this week…and another today…and overnight the kitchen has become a scene of feathers, wings and …..eeeew!…beaks!
I wonder if this is my fault and it is a reaction to the mouse I taxidermied (if that’s not a word, it should be) a few weeks ago, something I never believed I would do..but it was a fascinating insight into the Victorian world of diorama and stuffed seagulls. I think that the cat must have taken offence at the anthropomorphic accessories and is, perhaps demonstrating her distaste..?
No corpses..or none visible at hospital today…I am such a regular for the CT scanner that they no longer ask if I need to change into a gown as they know me and that I come “CT ready” with no metal about my person. As I slide in and out of the machine following the disconnected mechanical voice instructing my breathing, I try and think of a time when this was an unusual pastime. Then the cannula goes in…then the contrast dye…then the feeling of inner warmth quickly followed by the sensation of urinary incontinence…How many times now? I can’t even remember…there was a time when I could count on the fingers of one hand..but hey…once more, with feeling! Results in 10 days
It’s Friday night…how hard can that be? A toss up between a very camp looking pink (coloured bottle) of gin – “Pinkster” which “looked” fabulous with a suitable summer flavouring of raspberry or the apparent Scarborough Fair option (rosemary and thyme) – Gin Mare. I chose the latter – very good choice but now hankering for the unchosen selection. There were (of course) more, but I had quickly narrowed it down to my line of vision. It will have to be another time…meantime I still have my brand of choice at home “Deaths Door” – which works for me….
With my anti-depressants cranked up to maximum, I am starting to feel “better”. Whether I am better enough to speak at funeral next week remains to be seen, but it may be a team effort and that’s OK. People I can trust to lean on and who can lean on me, we will get through…
Meantime I worry…I worry about…(amongst a diaspora of concerns)
- My herceptin treatment. How will I organise this next day treatment whilst I am at a funeral? Should this worry even be on my radar?
- I seem to have several lymph glands erupting (?) – am I imagining it?
- Upcoming scans
- Do I take sleeping tablets and feel/act like a zombie or do I just not sleep and get through lots of reading (or howling) instead?
…and of course these sit beside the rolling cloud “boneless bird” worries of how full the fridge is..(too full…rhubarb and gooseberries have completely taken over); which continent my son is on, now he has his BA “wings”; how content the cats are and the hugest issue of all…how on earth am I ever going to even start downsizing…I can’t get off the starting blocks…? I have stopped even opening cupboards…it makes me cry…
“You have really great veins” enthused Jeremy, the chirpy radiologist as he inserted (“sharp scratch”) the cannula and injected a cold blast of contrast dye into my arm. This is the stuff that makes you feel like you are chewing metal and have wet yourself…but flattery, hey…I can take it, whatever the circumstances or whatever is being flattered and so the scan was not “routine” at all…