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.
Another decision making hiatus, another step forward, and, as a bonus, another new word. I am a “neophyte” that is. if I have understood the word correctly – converting to my own lay medical approach of dealing with metastatic cancer. I have stopped treatment.
Life is short and I am going to go my own way (not sure why this is all starting to sound a bit Fleetwood Mac) through it and quit being medicalised. I have reached a point, at last, when I feel my judgement is sound and I am not being controlled. I no longer want to be a slave to the hospital, all its sub-text and endless testing (not forgetting the permanent incumbent worry). I have decided to consider myself “better” and plan to “live” accordingly.
- Yes…I have thought about it…(fancy…)
- Yes…I know what I am doing
- Yes…I have discussed with my oncologist
- Yes…I have discussed with my family
- and no…I don’t need further advice
I have now got the hang of this going solo lark. I make my own choices based on what I consider to be important. Finally I am finding out what I do consider to be important; what makes me happy and what catalysts make me spiral downwards. So…that’s the plan.
Echo results…blood tests…herceptin…eye problems…insurance negotiations…driving license re-application….oncology…
AND what do I do? Act my age? Be sensible? ….n’ah…what do I do? Without consulting/talking to anyone whose advice might be useful. I get my eyebrows (which vanished..never to return, from chemo) tattooed. Or, in more age-appropriate language. I have had microblading.
Whilst the shape is OK (or is it?)…they are very dark…I gather this will “soften” but I currently feel defined by my eyebrows. Unsure what to do, other than act surprised! Should I….
- Disregard aftercare advice and see what happens?
- Wait for 2nd appointment and get them broadened? add grey? re-shaped?
- Take to my bed/garden/the hermit-life?
- Grow my fringe?
- Buy better concealer?
- Stop being so vain?
- Botox my lips to shift the focus?
- Wonder about rain damage
- or blame my mother, she did tell me “that if the wind changed I would forever remain with THAT face” and it was BREXIT day after all…(so maybe Boris’ or Nigel’s fault)
…and wonder why someone of my age was so compliant when the “technician” was not the young beautifully browed beauty I had imagined (after my NARS experience). Instead someone with eyebrows I visibly balked at (so far as I was able, without my glasses on) and there’s the rub…
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.
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.
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.
WHY? WHY? WHY? does every item about someone who has died from cancer talk about them losing the battle? Cancer is a disease – you don’t fight, you are treated (or not) for it. It doesn’t matter how strongly you think you are “fighting” you live or die of the disease like other diseases…you don’t appear to have to battle diabetes, motor neurone disease, heart disease, HIV, malaria…What is it about cancer that you are assumed to be in a war zone where you will be triumphant if only you can be strong enough?
I’m not. I’m living with cancer (yes…you can say that word without use of the Big C of any other euphemism), being treated for cancer (there I go again) and there is not a battleground in sight. I am not fighting…neither winning nor losing, just living….for the time being….with CANCER
So I have delayed/postponed/cancelled all medical appointments because I have (finally) managed to obtain travel insurance that isn’t more expensive than my travels. I cannot risk any new developments, diagnoses, tests, investigations whilst I get on with doing the “living” bit whilst I still can.
Gone with the Wind comes a distant second to Sound of Music in the favourite film stakes…so I am saving the Salzburg shindig for when I am restricted to European travel and, instead, am going on a trip I have been hankering after forever…The magnet for my holiday is Nashville – The Grand Ole Oprey, Baton Rouge & Lafayette (and who wouldn’t want to go to places with names like that?) but I am more than happy to take in all the other delights of the Bible Belt, the Mississipi Delta, Memphis, Graceland, New Orleans…and in my head, I am already shopping, cutting a disc at Stax Records, hitting the Honky Tonk bars…and trying to find an alcoholic drink on Sundays..
I have a visa, a ticket AND a translation guide so I can be understood and, (by happy chance) get another language under my belt…eg hello translates as “Hey yall” and am just going for it ’til “I’m too pooped to pop” and am, (hopefully) “happier than a tornado in a trailer park”
Chucking health onto the back burner, going for broke and “Frankly my dear, I don’t give a damn”
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…