Three weeks have slipped by again and I await the call from “my” nurse about Monday’s herceptin dose…Hopefully it will be a short, sharp shock (aka injection) rather than being infused (which makes it sound rather more of an “active” pursuit than it is!). Will she (it has always been a “she”) ring today? tomorrow? Sunday? You would think I would now be used to this but I remain like a coiled spring throughout each round of arrangements and “delivery”. Treatment like this is a constant reminder that I have cancer…I HAVE CANCER – it yells and yells at me. Somehow several daily injections of insulin does not make me shouty in the same way that I HAVE DIABETES. Makes me wonder whether I am perpetuating my own cancer taboo. But…I don’t feel scared so much as afflicted. I think I have “parked” fear for now.
I have handed my collapsing symptoms to the GP and agreed that we will do nothing unless it happens again. I don’t want to spend any more time in hospital departments being investigated for unusual symptoms that undoubtedly will conjure up something like…I am a special case!
I have now been told twice since yesterday morning that I am “a special case” and I don’t think that either context was complimentary!
So…whilst I wait for the call, I fill my day…paying bills, going for a haircut (Yay…2nd one!), trying (again) to make sense of official correspondence that my brain can’t cope with and checking I have the wherewithal to create blood orange margaritas and “rim a cocktail glass” (?) later on…
OK…I have been persuaded it is time to “see someone” to try and uncover why I am collapsing left, right and centre. “Someone” is the GP and today’s the day. I have not rushed to have any investigations done as, after the last time I passed out, I had a brain scan which was OK. Do I want to know about any other possibilities which undoubtedly will mean restrictions of one sort or another? Or, the more likely scenario of nothing at all being found – which wouldn’t provide any reassurance but just take up more of the “living” time at medical appointments. Somehow not knowing, not being checked out seemed the better option…but I have bowed to the pressure from assorted friends!
Meantime, my hands have been “fizzy” for a couple of weeks (can’t think of any other way to describe them) and my head feels scrambled…and I just feel very slow on every level…apart from when I am at the gym! Who knew that the gym would be one of my blue sky moments?!
You would have thought that I would have allowed preparation time before visiting my “insert euphemism of choice” friend…But I didn’t even think about it until the journey home. Should I have shared some unspoken truths? Should I have detailed what she means to me? Should I have told her things about herself that have inspired me? Her part in not letting me always make the easy choices?
No! We are friends, the closest of friends and that is enough. We don’t need to voice this stuff…we know…We have had 40 years of sharing, challenging each other, leading each other astray and back again.
So…we did something else…Firstly we pondered the state benefit which is paid when doctors give patients less than 6 months to live. How many people outlive this prognosis? What happens then? Does it continue to be paid? Does someone ring up to say you have had your 6 months…your time is up?? Then we reminisced briefly and how we laughed (guffawed even) remembering the scraggy, earnest school kids we were sitting in my freezing-cold study bedroom at boarding school pondering the big stuff of life and now we were curled up, in the warm, on the cosy sofa being far more nonchalant about facing impending death. What else can you do? You gotta laugh…
…and anyway it wasn’t goodbye because I am going back
Another night…another “episode”…This time I collapsed on bathroom floor tiles and yet again, was unable to move. I remember the floor coming up to meet me and then I am unsure about my level of consciousness. But I seem to have lost a couple of hours somewhere. I do remember spending some time considering my position and wondering about my crawling capacity but decided that I could nothing but stay put. So that’s what I did until “help” appeared. I was even finding the cold tiles in the middle of the night, long after heating had gone off, comfy…who knew?
There seems to be an awful lot of this one step forward, two steps back malarkey…or perhaps it’s supposed to read the other way round. Either way I’m not liking it one bit.
Today I have been examined, checked up on and booked in for more scans, several more…and more appointments but it appears that physically (at least) I am on an even keel. Bloods being “unremarkable” is a good thing, however I seem not to have had all the required tests so back for some more despite black, grey, blue and yellow arm. Whilst the nursing team think I may be starting to experience clotting problems…the doctors just raise eyebrows when I mention this! Phew…that’s another test I can duck out of….Mentally, I remain scrambled but that can’t be dealt with in anything evidence-based.
The good news is that I am moving from Herceptin infusions to Herceptin being delivered subcutaneously ie injected (in my thigh I believe). I had heard of this but understood that I still needed to be “observed” for 2 hours post-injection (so, no great advantage) by the visiting nurse BUT it appears not…evidence (gawd love it!) has shown this to be unnecessary. So…next treatment may not (perhaps) involve worrying about my conversational appeal to the nurse who visits, it may (or may not) be a quicker in and out…Of course nursing protocols often vary from doctors protocols so I have to wait and see…Roll on 2 March.
I was lucky enough to have the “perfect” nurse this week…who was more than happy for me to read my book and duck out. We passed the time of day along with the requisite medical information, but no more and she got on with her paperwork (which isn’t “paper” of course but admin on her i-pad..which is always entertaining to sign-off at the end of the treatment!) and drank her licorice and cinnamon tea whilst I did my own thing – so far as I could whilst being hooked up to a drip with a needle in my arm – “my own thing” is just so far from what it used to be that this is somehow my new normal.
I understand (from those who know how this works) that the NHS pays less for her to travel all the way from Somerset to treat me (for 2 and a half hours) than it would cost for me to go to the hospital a mile away for half an hour. I worked within the NHS long enough to know that I should not find this extraordinary but my instinct was to question this modus operandi, but not for long…I now just go with the flow. There is a “training day” for all the Healthcare at Home nurses next week in Burton-on-Trent (where HQ is to be found) so guess I will find out what has been taught on my next visit. I suspect that it won’t be as streamlined as I am led to believe but am prepared to be open-minded and, dare I say, optimistic? (What choice do I have?)
My beloved friend still hangs on – alternately crying and laughing down the phone but we keep talking. She likes me to be disrespectful of her “condition”. It remains an impossible situation every day but “we” keep going. She is determined I don’t go to pieces on her and so I don’t…yet. She has always been stubborn and I guess she will go when she is ready. I will never be ready, never.
Try to imagine housework being done in the style of – a mix of Cher in Mermaids and Mickey Mouse in The Sorcerer’s Apprentice – and you have me this morning…mopping the floors to Tell Him….
Whilst I really don’t want to be thinking about HIS kiss…and where he was/is planting it – just too sordid, it was an hour or so’s light relief. It gave the cats (and me) an excuse for some exercise – theirs (suffice it to say) involved tearing out of the house at top whack. And the bonus is..I now have very well polished wooden floors and a sparkly house.
So, I am “ready” for next stage of medical intervention. Monday kicks off with a “new” nurse visiting to treat me. Will she be chatty? Will I want to chat? What will be her particular “observation” style? Will I be able to read my book? Will I be here? (I do often ponder going AWOL). And in my current mindset, I feel I should probably launch into a rendition of Que Sera Sera.!
My inner arm is already extensively bruised (from elbow to wrist) in charming shades of purple and yellow (not quite the 50 shades of grey!) resulting from 6 vials of blood tests the other day (6? I know…seems excessive and I have no idea why so many and have got past bothering to ask!). Then Tuesday is back to see oncology consultant…I have not had scans recently so I don’t expect there will be anything to report other than booking my next gamut of tests, so I don’t go with too heavy a heart this time. I suspect that I may be rather tempting fate but surely (surely…) it must be someone else’s turn for the wicked fairy.
“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”
I have been told that my voice mail message leaves much to be desired. Really? Apparently I sound distinctly like Eeyore…throwing out (to any brave message leavers) that it is unlikely I will pick up the message and, even if I do, don’t rely on it being any time soon. Seems a perfectly fine message to me….but I have to say that I think this may have more to do with my attitude to mobile phones than my attitude to life. Maybe, like so many other things, I need to make changes! Wonder how many changes I have to make without turning into a completely different person…or do I need to turn into a completely different person? Uh-oh…I am sounding Eeyore-like again…
Back in my “real” world I am breaking a sweat on the medical hamster wheel again. Blood tests done running into herceptin treatment, oncology appointment…never the chance to forget…I had to complete a form this week which asked for any dates I am “unavailable” for an appointment in the next 12 weeks. I had to move on to an extra sheet to keep listing all the “already booked” medical appointments! And, of course, I am still waiting to hear (or not) from the Eye Hospital…I am fairly confident that both appointments will land on my doormat for the same day and time…Eeyore-like? N’ah…..