The mobile started buzzing and belting out The Cure's Just Like Heaven... a call from a private number... shields up!
Adrenaline level set to optimum, I made ready to deliver the usual tirade to a witless caller whose auto-dialler had selected my number to try his/her luck at peddling a management service for the debt that I don't owe, or for compensation for the accident that I not (yet) had, or for claiming the PPI refund for which we don't qualify.
But no, there was something wrong. The caller didn't want to speak to Sheila or to Raj as he/she usually does, the caller knew my real name. I wasn't about to confirm it without knowing who was calling, so I asked who I was talking to.
It was Roxanne, a Staff Nurse calling from Ward 41. Shields down!
She was checking that all was still OK for Wednesday's Day Ward appointment and that I'd still got my PICC-line in so that they can start the next cycle of chemo early when they admit me sometime on Thursday. We had a bit of a chat, I assured her that all was OK at this end, and she didn't try to flog me life assurance.
I'm really not used to this prior planning malarkey. If they're not careful, it might catch on!
Thanks for the call, Roxy. Music to my ears. We'll see you on Thursday.
I've always claimed, for comic effect, that my verbal outbursts of obscenities whenever I'm screwed over by the NHS (or by anyone else, for that matter) are signs of me having Tourette's.
Well, I stand corrected. It is Tourette's-related but there's a specific term for it... Coprolalia.
It's from the Greek and, in layman's terms, it means... "talking shit".
Previous posts and comments have been updated accordingly.
Almost every waking minute since yesterday's phone call I'd been mentally rehearsing how to deal with the Professor's Evil Plan for World Patient Domination.
Today we arrived at the Outpatient Clinic ten minutes before my appointed time-slot. Predictably, clinic was running late (50 minutes) but by closing time at 5p.m. we were down to two patients and two consultants - the Evil Professor and the Nice Doctor. Against all expectations, the Nice Doctor called me in.
All plans for forming a Patient Resistance Cell went out of the window... the Nice Doctor explained how I had now almost fully recovered from FLAG-IDA cycle 1 and that my blood and marrow results looked good enough for remission to be declared. Facts and figures flowed freely and I didn't have to ask for anything - this doc knows me well. With a cheeky smile she asked me what I thought of the Professor's evil plan to admit me tomorrow but she already knew how I would respond. We have agreed that I'm to be readmitted for cycle 2 on Thursday 28th after attending Day Ward for a subcut injection of GCSF the day before.
It's a sensible plan that suits all of us - no rushing around, a chance for me to visit my Dad (due to my neutropenia I'd not been allowed to see him since before he was admitted to the same hospital a month or so ago for major abdominal surgery), and more time to regain some of those lost pounds (so more King Prawn Chow Mein with Dim Sum). People-skills - this woman has them in spades. She was so kind that she used those skills to get me a short-notice PICC-line dressing change so that I wouldn't have to waste half of tomorrow!
On the way out we had to walk past the Prof. who was loitering at the reception desk, probably lying in wait for me. I greeted her with a friendly "good afternoon" and got the same response. Wearing her "put on for the patient" smile she asked if I would be coming in tomorrow as per her evil plan. I looked her in the eye, said a polite "no", and we kept walking as her smile evaporated.
All in all, it has been a much better day than I had been expecting.
I did exactly what they said - this morning I turned up on Day Ward for my "review". I'd even managed to turn up early, having not gone out for a beer and quiz last night. Even the traffic was in my favour - a mere 45 minutes from driveway to ward. Hell, I'd even had a bath!
I took my seat on Day Ward and the usual routine started... observations went well and all was fine. Then they tried to take a blood sample only to find that the PICC-line was blocked. It took two nurses over half an hour to get it flowing again. After I was sure that they'd taken the requisite number of blood samples and that they had been labelled correctly (often they aren't, due to problems with the label-printing gadget) I checked that it would be OK for me to go off-ward to the hospital canteen to get myself a hearty breakfast during the standard 90 minutes twixt sampling and results. After a thumbs-up I was off to stock up on carbs and protein, part of my ongoing effort to replace the 20lbs or so lost since Jan 2nd.
On my way there I met the Prof., who is head of Haematology. We passed and each said "hello", but I noted that she gave me a strange look. To be fair she always gives me strange looks, but this one was an order of magnitude more strange than her usual display. I walked on, wondering what to make of it.
On my way back to Day Ward after breakfast we met again and this time she wanted to talk to me, in a corridor as opposed to in the relative privacy of the Ward or in a consulting room, wanting to know why I was in. I explained that I was in Day Ward for review, and showed her my appointment card which clearly stated "Review" against today's date. She said that I wasn't on her review-list because I hadn't been "handed over to her" by the consultant who has dealt with me since my admission on Jan 2nd, and that consequently she hadn't reviewed the results of the bone marrow sample which I provided last Friday. She stated that I was four weeks post-chemo, which was wildly erroneous as I'm actually six weeks post-chemo cycle 1*. She said that I would have to attend Haemo Clinic to see her tomorrow, which wasn't something that had been discussed with me and so wasn't something that we'd planned for (usually these things are arranged at least one week in advance), and which will mean another short-notice half-day off work for Chris. I was told to return home, do not pass Go, do not to wait for the results of the blood-tests ordered earlier.
Of course, this confused the Hell out of the staff on Day Ward, who, last Friday, had gone to great lengths to shoe-horn me into today's busy schedule. It has also thrown the Haemo reception staff, who have had to perform a similar shoe-horning exercise to get me a late appointment tomorrow.
And it gets worse... I have to attend Day Ward again on Friday just to have the PICC-line's weekly dressing-change done. Several hours, another 40 miles on the clock, another fiver for parking and another fractured Friday just to have a glorified sticking-plaster replaced. I'll wager that after my being messed around today/tomorrow they won't find any way to get it done tomorrow instead of Friday, that sort of pragmatism seems to not fit with their policy of "fucking-up the patient's plans at every available opportunity".
*After some thought, I think that the Prof. might have it wrong. I think that she may be under the mistaken impression that I'm post-chemo cycle 2 and that I'm at the "big decision about future treatment options" stage. Yet I've been told many times that I'll have a second cycle of FLAG-IDA before that stage. My counts haven't recovered yet, so cycle 1 hasn't finished, let alone cycle 2. That would explain why I've not been "handed over to her" yet. But what do I know? That could have changed without anyone telling me. I'm merely the patient.
Of course, it's quite possible that she has me confused with someone else whose schedule she messes about on a whim.
Predictably, I am furious about the whole affair. I doubt that I'll be any happier during tomorrow's consultation if it turns out that there's been a screw-up.
This is me and the Prof., I'm the one with the hard-hat and no hair:
Late update:
I received an arrogant call from the Prof. at about 17:30, in one unbroken outpouring of words she stated that she'd reviewed the results and my records, and then told me what future treatment regime she had already arranged for me. She didn't allow for any debate, it was a declaration rather than a proposition. Gob-smacked, I told her that we would discuss the matter at tomorrow's consultation. She hung up, the whole call having taken a mere 42 seconds. Her "plan" doesn't align with what others in authority have told me would happen, and I think that it needs some sort of justification before it is imposed.
I don't think that I will survive a further seven weeks inside if this woman is to be directly overseeing my welfare. I can cope with living with cancer, I can cope with the treatment, but I can't cope with her lack of "people-skills".
Given the choice, I'd rather be "handed over" to Dr. Pepper. After all, "what's the worst that could happen?" At least I could put the cap back on when it gets too agitated.
Well, I wasn't an escapee for long. After a few days at home I was running hot but feeling cold, a sure sign that something wasn't right. We called it in and I was readmitted on Jan 27th.
The treasured PICC line was pulled in case it was infected (it wasn't). That was a real downer, as it meant that every blood sample required (at least twice a day) needed at least one new hole in the arm. Anything IV (twice a day minimum) needed a cannula, and anyone drawing the short straw (pun intended) for putting one into me knows that it takes at least two attempts to get one in, and that they stay patent for less than 24 hours, so that meant many more holes in the arms. The request for a new PICC was rejected on Feb 1st, it was deemed "non-urgent" and I had to wait until Feb 5th for a new line. By then, my count of failed holes in the arms and hands was well over 30, that count not including the successful attempts, and productive sites were becoming scarce. "Non-urgent" my arse!
The new PICC made a world of difference. Not a single unnecessary puncture since its insertion.
But they said that I was infected. With what, nobody knew. Blood cultures were drawing blanks. And due to the ghost infection, I was put into isolation. Two weeks in The Cooler... just what a prowler like me needs to be tipped over the edge towards cabin-fever... a flaky internet connection, a dodgy mobile signal, a dust-filled air-con system with both min and max temperatures set to 18C running loudly 24/7 and doing nothing else except creating a constant cold draught...
They threw the allowable gamut of drugs at the ghost, several combinations of antibiotic/antifungal/antiviral pills and potions, and none of them made any headway. Even the later revelation that I had a "Common Cold" due to a rhinovirus, for which even the most dim-witted know there is no cure, didn't stop them trying new drug combinations which brought their own complications such as the 30% coverage allergic rash that developed when they plied me with Co-trimoxazole. In the end I had to get harsh, requesting that they stop trying to fix the unfixable, and deal with the important stuff instead.
After two weeks of iso I was allowed home again, in an operation cunningly contrived to allow me to not miss any of last weekend's Six Nations matches. I still have a "Common Cold" but that's a minor issue - it's endemic - who doesn't carry the rhinovirus? After all the chopping and changing I have a familiar cocktail of drugs here - Aciclovir, Fluconazole and Levofloxacin - the same as almost everyone else in the same boat, and pretty much the same as I was on three years ago. Progress, eh?
Anyway, I'm still at home and it looks like I'm slowly recovering from FLAG-IDA Cycle 1. It's been a long rough road but blood counts are improving slowly. Another bone marrow sample was taken yesterday. Next Wednesday's check-up aside, the future is anyone's guess. Apart from the looming spectre of Cycle 2, that is.
On reflection, I think I might have hit upon a reason for the two weeks of inconvenient detention and experimentation... my lead consultant is from the Green Isle and an avid supporter of the Irish rugby team, as is one of his excellent juniors. After the unpredicted thrashing by the England team during the first match of the tournament, my flagrant brandishing of my St. George Cross fleece blanket may have been too much for them to bear without retribution 🙁
Yes, I'm an escapee. Home for a few days of respite while my counts continue their crash and then, hopefully, start their recovery. Have to attend Day Ward for reds/platelets top-ups and monitoring every two days though, so it's more like being out on remand.
That was the good news.
The bad news is that Chris now has to devote even more time to me, pulling in the tasks that the hospital staff would have been doing had I stayed in.
And when my counts have recovered, I'll be an in-patient again for another cycle of the same chemo.
No word yet regarding them finding a suitable stem-cell donor 🙁
