Back at Day Ward today, platelet count 32 × 109 cells/L (Normal: 140–400 × 109 cells/L), hopefully they will be enough to see me through to Sunday (yes, Sunday) as they didn't give me any today. I have no idea if they've ordered any platelets in advance, but I'm going to need them.
Throughout the day I've been fielding calls from Glenfield Hospital telling me that I have appointments for tests next week... the first call was for a heart test/scan. It took me a while to realise that this wasn't another periodic follow-up check related to the angioplasty/stent operation that I had a few years back. They wanted me in next Monday for that, but at the time of the call I was still scheduled to be in Day Ward at LRI on Monday, so I asked them to work it out with the LRI Haematology Red Team.
Then another call... a breathing test. They wanted me in next Tuesday for that, but at the time of the call I was still scheduled to be in Hambleton clinic at LRI on Tuesday for "The Big Pre-SCT Chat", so they said that next Thursday would be OK.
Somebody in the Red Team had pressed the Big Red Button to start the ball rolling for SCT, but nobody in the Red Team had bothered to tell me beforehand.
No surprises there, then. Thanks a bunch.
To be fair, one of the Red Team consultants did take me aside a few hours laterto explain the situation, but it would have been far better to have been told beforethe calls started coming in. Forewarned is forearmed. At the moment life is complicated enough without all of these calls out of the blue.
And I still don't know if I have to be back at Day Ward on Monday. I'm only guessing here, but I suspect that they will find a reason to admit me on Sunday after the check-up results are in. If they do, they can have the pleasure of sorting out all of the surprise appointments and arrange transport etc..
When I went to Day Ward on Monday they put in 1 bag of platelets and 2 bags of reds, and was told that I would need more platelets on Wednesday (today). As I always do, I reminded them that I need platelets that are HLA-matched (collected by apheresis from specifically-matched donors), which usually take 2 days to get from the Histocompatibilty & Immunogenetics Laboratory in Sheffield, so to get them for today they would have to order them on Monday.
I went back to Day Ward today, in real need of those platelets (the slightest knock is causing bruising, I dare not risk even a paper-cut) and indeed the results of this morning's blood-test confirmed a dangerously low platelet count. The duty doctor discussed it with me, then she went off to "look on the system" for my pre-ordered platelets.
But there were no matched platelets ready for me, and nobody could find any evidence that a doctor had raised an order for them on Monday.
As you would expect, I really "lost my shit" - the need for HLA-matching is written/printed through my records like letters through a stick of seaside rock. It has been three years since I started needing pre-ordered HLAs, and that need doesn't just go away. Having "pooled" platelets from the local blood-bank, while convenient, is not an option - for me they could be lethal.
After wasting today, I'm expected back there tomorrow, as they reckon that they can get some via some sort of emergency service. In short, they want someone on a motorbike to bring them down the M1 through Storm Gareth. I wouldn't fancy being that someone.
Just to compound the mess, I'm supposed to be on a 2-day cycle in Day Ward, which means that if I go in on Thursday it's likely that they will want me back in Saturday. I've told them that they can stuff that idea, I have better things to do. Not only is Saturday the final day of the 2019 Six Nations Championship, but we're doing our best to look after Chris - she needs our support as her Mum passed away earlier this week.
So, as I see it, they have 2 options...
1: Order enough for Thursday to last me until Monday;
2: Order some for Thursday and some for Friday.
Whichever option they take, I'll need more on Monday.
Of course, a lot depends on availability - if none of my limited pool of compatible donors has donated platelets since Monday, I'm pretty-much stuffed. Platelets have a typical shelf-life of about five days after transport/testing/washing/irradiation.
Meanwhile, the chemo has intentionally (and hopefully temporarily) stopped my own body's ability to make its own platelets for the next week or two, so without a donation my platelet count will probably be near-enough zero by this time tomorrow.
If you're thinking of becoming a donor, or if you're already a blood-donor and fancy upping your game, please click the following image:
Cycle 2 chemo done and dusted, just waiting for the counts-crash and the reboot.
I'm told that they have found suitable stem-cell donors and are trying to determine which would be the best match, so that's good news. I have no doubts that a match won't be ideal, but anything's better than nothing.
I have a feeling that they will give me the chance to go home this coming weekend. I may well take them up on the offer - there are a few other important matches which will demand my attention:
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.
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.
