Part-time working; part-time patient…why is it that you are always expected to be “free” at any time because of that? I had years of this in the workplace and now again I am having to dance to the tune of expectation…except of course, I’m not!
Do they anticipate that cancer patients sit around waiting for medical appointments to fill their days? It certainly seems so…I have had a day of being huffed and puffed at for daring to try and re-arrange inconvenient appointments. Appointments that frankly I don’t want but am “required” to attend for reasons that aren’t my own. It also took up several hours of dialling, re-dialling, leaving messages, trying again and again before I even found a person who could, with unsurprsing reluctance “help” – but only after interrogating me about why I couldn’t attend the given appointment. Is there really no understanding (or training) that a prognosis like mine makes me want to fill my days with living not dealing with people, who don’t seem to be seeing the full picture?
Frankly, feeling well fed up…bad enough living with the unpredictability of cancer without feeling like a nuisance for being unable to attend an urgent appointment, which is only urgent because I was erased from their recall list (again!), not because it is either medically urgent or personally important. It would be happiness incarnate not to attend but I do not want to waste precious NHS resources.
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.
Monday finds me in Acronym City…I have been on its fringes for ages as I mull over what planning ahead actually means. There aren’t many days when I “forget” but some days inevitably better than others. I have dipped my toes in this forward thinking several times but then scampered (?) away but today I was pushed (in the nicest possible way)! So….
- I have setup my DNACPR wishes
- and started to fill in my ADRT
- Thank goodness I already have my POA done and dusted
For the non-cognoscenti
- DNACPR = Do not attempt cardiopulmonary resuscitation
- ADRT = Advance decision to refuse treatment
- POA = Power of attorney
and now I am going to have a G&T because I know what that is…and I like it!
You might think that I have visited and been treated in enough hospital departments, have enough medical issues and enough scheduled tests on my plate …but it appears not.
Through the door has popped a leaflet (nay…invitation) to enter another NHS specialty via the bowel scope screening service. Whilst I acknowledge that this summons has been triggered by age, surely the NHS is able to either not send or send an adapted letter to those actively being treated for cancer (there must be plenty of us out there) .
Whilst it is as likely for me, as the next person to have bowel cancer…I am not bothered about it and am certainly not going to actively seek it out. Despite the encouraging test “Most people are glad they had bowel scope screening done”…I think that I will not be one of them…I have enough cancer to deal with without adding a new strand (along with its enema).
I did open up the package thinking – really? am I really being sent this? Someone, somewhere must be having a right laugh
After a cluster of great days with some absolutely amazing random acts of kindness (for which I can hardly express enough gratitude), I am back to ground zero. There was a minor blip in the good days – my confusing Richard Dawkins with Stephen Hawking was not my best moment. OK, I had imbibed several glasses of wine but how embarrassing is that? (especially whilst trying to appear an intelligent member of the local community). Oh well..I have been uncovered for what I am…again!
Went to have my echo today in a brand new area of the hospital and had a very lively sonographer (?) performing the test, who kept me entertained with her passion for Bette Midler as a performer. I now know the plot of several of her films that I had not previously encountered. There are always new learning opportunities to be grasped within the NHS! I am assuming that I was OK as nothing alarming was imparted.
The bad news is not about me but somebody very close who has been dealt a really tough hand today. Can’t absorb it and can’t imagine my life without her in it…stealing my cancer thunder? Hmmm…that’s a truly shitty move to make on me….But I will support as best I can as we have shared so much of life and especially over the past year or so knowing that we were likely to be sharing a similar endgame.
Meantime (just to throw the cat among the pigeons) my sciatic pain is back in full-flow. I thought I had conquered the pain of spondylolisthesis but it appears not – so back I trudge/limp/roll to orthopaedics again…
Isn’t it time for someone else to have the bad news fairy?
Inevitably the “quick” visit to the hospital today to have – what was my right breast – drained, turned into a multi-disciplinary approach. “Breast nurse” – yes…this is the name…very competently drained more old blood from the right. Then she suggested that she couldn’t drain it all as it was “loculated” and maybe I should be scanned and see the surgeon…today…..”Nothing to worry about…” of course…
Loculated, I think, means that the fluid I have gathered in my breast has formed a honeycomb and has hardened, making it harder to drain…Maybe it doesn’t mean that, but that was my understanding.
I was “nicely drained” by the nurse, then saw doctor..had ultrasound and more draining then back for “truss” fitting. Truss is my word not the word used – but I can’t remember that – The “product” is designed to work rather like breast binding – in the form of a velcro bandage type thing that I tightly wrap round myself . This is to encourage fluid not to continue to gather in the space available, by restricting the space available…Hmmmm…we’ll see….Who knew what a wide range of NHS products there were?
Then I see surgeon and nurse next week…so another hospital day for my week…but that’s OK as there’s “nothing to worry about”.
Last time I saw my oncologist she talked to me about a new drug which would be the next line of treatment for me, when I need it – Kadcyla. We didn’t discuss it at length other than this would be the best and newest way to deal with my cancer. I see on the BBC news this morning that the NHS has said No to this drug which is probably not great news for me.
BBC news Kadcyla
I am improving…today I got up and got dressed and ventured outside…Progress indeed! Albeit I was looking like an extra from Fiddler on the Roof in my fitted headscarf. Right ethnicity, but maybe cobalt blue is not quite the colour of the shtetl….Luckily (for Oxford) I was not well enough to attempt the singing and dancing routines just yet…maybe something for everyone to look forward to (?) in week 3 of the cycle!
New symptoms abound each time I open my eyes – heat type rash spreading like a fungus across my chest, my gums no longer seem to fit my teeth properly, I seem to be coughing up extraordinary things and, what little hair remains, seems to be spreading itself around the house like we have an invasion of small furry things…Fortunately, no symptoms that yet send me direct to hospital without passing go…so obviously lots of new experiences still lie in wait.
Regular life kicked in today as I heard of the death of a close friend’s husband, Terry Vickers. He spent his working life caring for others as a GP. Fortunately the NHS looked after him well in recent weeks/months – with its inevitable idiosyncrasies that always helps us chuckle in the bad moments. I feel deeply saddened at the loss of such a lively, friendly, accomplished, articulate, secular and empathetic northerner who I was proud to know and call my friend. My life is all the richer for knowing him.