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?
The grief was bound to come and yet I had not imagined what a very embarrassing public show of grief it would be, over a year later. My route subconsciously took me to Mornington…where my friend lived, and died last year. The tears began slowly and I was set to walk by, but instead, found myself sitting on the dirty steps of what must now be someone else’s flat in NW1, howling. Not pretty…but not a pretty death…Cancer is not a great accessory however bedizened.
I am still hoping for a version with more baubles and bling.
…with apologies to Elizabeth Smart “By Grand Station Station I Sat Down and Wept” 1945
After temporarily allowing me the return of my driving license, the powers that be, have now gathered their evidence. This “evidence” includes “seizure markers” whatever they are, and so my license has been revoked. The neurologist I saw told me that my symptoms were not consistent with epilepsy but guess “seizures” cover a panorama of out of the box medical presentations.
Whilst this sounds minor (in the great scheme of things) it seems a huge backward step into “sickness” again for me…I feel that the more medicine I shrug off , the more different shit pounces from stage left.
Another 12 months until I can try re-applying “with the support of my doctor” but can neither think about that at the moment nor wonder which of my various doctors this may be…
A bit short on the words, or the right words, or words I can share, or shout out loud. Anti-depressant reduction plan isn’t happening…this level of dealing with my demons enough for now. But, dealing with them I am, and, in time, one way or another, will lay them to rest!
It’s one thing coming off herceptin, heart monitoring, scans, blood tests and facing cancer but quite another deal climbing down from a very high anti-depressant dose. Even my gentle downward stumble seems to be turning me into yet another person I haven’t been before.
I don’t have to do this but somehow thought I was ready to engage with some of the pain. I am ready. Guess I had just forgotten how much pain I had (that was secreting itself behind the SSRI influence) and what pain is like.
I have seen my GP and know I can take it at my own pace or, indeed, not do it all. For the time being, 6 weeks in, I have re-calibrated my gradient for reduction. Waking up and smelling the coffee isn’t quite what I had anticipated and I am so missing my quirky, irreverent, spirited, intelligent, argumentative, tenacious, fierce, talkative, difficult, magnetic and so talented…yet dead, friend. The endless silence she leaves in her wake is hitting me in waves, some days lapping…some days tidal.
But I’m OK..I need to experience this…and overwhelming all of this is the delight and roars of laughter I can only hear in my head (that we would have shared) if she had seen my fake nails, nail art, tattooed eyebrows and tiddly pom mules!
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.
Fast forwarding through dentist, diabetic checks, scans, herceptin, numerous telephone consultations and a fabulous double dose of both Simon Schama & my American family… I have been fully immersed in The Quest for the Cures – fascinating stuff (albeit 9 hours of it on YouTube). It looks at our lifestyle and eating habits, sugar and acids particularly, and their role in the proliferation of cancer. This is examined along with the effects of the treatments were are being offered.
To put this in context, I am strongly in the evidence-based medicine corner…almost nailed to it. However amid this (rather jarring) American proselytising documentary I am feeling that there is something to hear and heed seriously about our heavy handed treatment of cancer. Instead of bombing the immune system with chemotherapy and radiotherapy, maybe we should be boosting the immune system and de-toxing. There are (inevitably glossy, shiny, white-toothed smiley American) people demonstrating how changing their habits have”cured” them. I take this with a winnebego-load of salt but something is resonating loudly here.
I have already done the bombing with chemo and surgery so am unsure how I can or could go with the programme. But, whilst I have already long pondered the decision of refusing mammograms and further chemotherapy I continue to look at the options.
Trying to get myself up and running (take “running” with a pinch of salt)…and back to reclaim my gym bunny status. First obstacle was preparation: how to hold the hand weights, I assumed that you carried them like you would a handbag. What other way is there? But no…you grip them and point them horizontal? vertical?…and what is the velcro for? I watched several YouTube videos on “how to do it” and set off. Success. Then I gave myself a few gym challenges and did the return trip. I felt great. I had cracked it and was back in the driving seat.
Today is another story. Phoenix back in the ashes. Unless I am hallucinating still, I think that some “kind” soul has been laying into me with aforementioned weights and pummelled me down to ground zero. Not only does every part of me ache but I feel like Rip van Winkle to boot. I can barely put one foot in front of another and ashen doesn’t even begin to cover my wan appearance, despite multiple coats of tinted moisturiser (all major brands!) .
If whatever force it is out there, is making yet another onslaught of tactics to lay me low again, they can forget it…I will take it slowly but I am not going to be defeated by this despite endless hospital testing, two holiday cancellations and no driving licence. Maybe I need a couple of days off the gym but I’m not giving up…
Meantime I have a 10 hour date with “Making a Murderer” – part of my latest online course, Forensic Psychology…I am assuming this is not a “how-to” documentary rather a psychological profile but who knows.