EP0057-201 Phase 2A Trial - No idea what Cycle this is - Blood transfusion day - 24 December 2021

There's been a lot to get used to since the last post and I haven't been making a very good fist of it.

Firstly: a disappointing week after the last treatment. Was expecting/hoping for it to be as trouble free as the last one, but contrariwise, I felt a bit generally crap. Nausea back, plus general weariness - in fact I started wondering if the previous treatment had been a placebo it had done so little interfering with everyday life. We went to Devon for a few days and I hardly went out - admittedly the daylight was fleeting and the weather wasn't great. When we got back, I did a bit of pacing the nearby streets looking for a free lamp post charge point for the car and felt not only breathless coming back up a small hill, but unwell too. Then in the few days before clinic day, although I felt a bit better 'in myself' I started having a few palpitations and I settled in to expecting my haemoglobin to have dropped again.

Secondly: Just as I was about to get on my bike on Tuesday to head in for bloods, Covid swab and clinic, one of the trial practitioners  called to tell me to wait at home. In future I will cite this as an argument for lateness when being upbraided for it - if I'd been underway already I probably wouldn't have answered the phone. There had been some sort of 'incident' and the Cancer Centre was closed although she knew no more than that. What could it be? Cyber attack? Germ terrorist spreading Covid around?

Maybe an hour or two later, I got a call asking me to go in, but to bring my own pee sample as the toilets weren't flushing. Hmmm - a plumbing issue then - an unhappy circumstance for me and my loo availability anxiety. Pee sample safely packed away, I set off to puff my way in the cold up to Highgate which did feel pretty rubbish, but managed to arrive  feeling a bit less rubbish after some flatter going.

Long queue at the door, presumably of all the people coming in late, and inside was heaving with, presumably,  building services people in dark fleeces. Then it was all topsy turvy - in to see Dr K in double quick time, before bloods or Covid swab done. Relating my symptoms led to talk about having a transfusion to bring haemoglobin up. I'd read some review articles about iron and chemotherapy in readiness and started off on risks of transfusions and what about i.v. iron instead, or erythropoiesis stimulating agents (ESAs) plus i.v. iron? Not sure why I feel so alarmed about blood transfusion - I gave blood for years for just this purpose. Anyway, I was sent off under the wing of the research nurse for bloods, an ECG and the Covid swab and for arrangements to be made for a chest X-ray (not sure why the last was necessary, but I was busy being alarmed about the prospect of a  blood transfusion and forgot to ask). The basement was out of bounds due to the 'incident', with phlebotomy and Covid swabbing scattered around the building, but luckily the research nurse did both for me. Usual superfast blood analysis wasn't available - lab is also in the basement - so I was going to have to wait until the next day to see how things stood. In the meantime, I went to hang out in the Living Room to eat my banana while chest X-ray was arranged. Here I found out that the incident was a burst water main which flooded the basement, took out the IT and the electrics as well as the water, and somehow set off the fire alarm, which led to the building opening itself up again - see last entry. So it was pretty miraculous that they'd given the building back the use of its arms in a few hours, even if it wasn't fully on its feet. Even the ground floor patient toilets were up and running again too! Hoorah for the hordes of building services people.

Once I was pointed at the Grafton Way Building, the chest X-ray was just a matter of waddling over there, waiting for my receptionist to finish helping the other receptionist with something on the computer, letting my bottom touch a chair for mybe a second before following the radiographer to the X-ray suite, putting my chin on the rest, giving the flat plate a quick hug, and done, and out. They must be meeting their targets.

Thirdly: Unwanted  haemoglobin result, phoned through by research nurse soon after I got home, with a promise of a call from the doctors on what to do next. Waiting for the call got me off dog walking duty but it didn't come until the next morning. Unwanted result was 79 (down from 93 last time) and not only below normal but also below the threshold for continuing treatment. Unwanted even though I was expecting it; indeed I had recourse to Spike Milligan's original gravestone inscription. There was a bit more discussion about what was the best thing: poor Dr K was  better prepared for the grilling this time - my iron stores are fine, my folate levels OK and I've had a B12 shot - I'm just not making red blood cells and the trouble is in the bone marrow, so a transfusion is what is required. They could give me i.v. iron and I still wouldn't make the necessary. Ca 125 is down a little bit more which suggests that my pessimistic concern about tumour growth is less likely to be correct, the treatment is doing something positive and it would be best to get back on it asap. So I agreed to a transfusion followed by treatment restarting in a week, rather than leaving the treatment for two weeks in the hope that Hb would rise through reviving marrow activity. Then the nurse came back to me with a transfusion appointment for Christmas Eve in the Cancer Centre's 4th floor haematology department, a request that I come in soonish that day to do another blood sample for cross matching, and with the earliest slot for the  next chemo treatment being 6 January.  That's two weeks away......which meant that I was back  on the phone after a period of cogitation to ask if we could just forget the transfusion and let things come back to 'normal' on their own over the two weeks. She'd been in on the email discussion between other team members and just reeled off the argments against: some risk to heart and kidneys during period of relatively low oxygenation, no guarantee that Hb levels would come back to  normal in two weeks which would mean a longer delay for treatment, and the probability that with the transfusion I would feel better over Christmas - I was beaten. But without time to get used to the idea, in no shape to cycle into town to give the cross matching blood sample. Luckily Christopher was around to give me a lift and support the strenuous effort to avoid Omicrom or any other germ on public transport.

And luckily he didn't have to wait around in Regents Park very long. Phlebotomy was still not back in its basement home after the flood, but it had been relocated into the Macmillan group room (where I once did gentle cancer yoga -seems long ago now) and I was in and out with no queuing to speak of. And home. And one day with no hospital attendance to look foward to.

I have been very provoked by having to have one transfusion, albeit my first and against a background of stalled chemo regime, and on Christmas Eve, but am feeling proper ashamed. Today I was first put in a small room where a short man of 60 (he told me!) joined me amidst much joshing with the nurses whom he clearly knew well - he was born with an inability to make red blood cells, had his spleen removed at the age of one, and had been having three-weekly transfusions since his early twenties. He is now on a trial of an ESA of some sort (I think) which has meant his transfusions are now six-weekly. How many transfusions has that been over the years? Answers on a postcard please. He said that some of the younger people on the same trial have been able to stop having transfusions.  Once the nurses realised this was my first ever transfusion, they moved me to a bay by the nurses' station to allow them to keep an eye on me in case of a bad reaction - there was a reason for my transfusion anxiety, perhaps with the distant memory of the paclitaxel reaction. I don't know if you can zoom into this pic, but I can assure you - this blood has my name on it - it's been chosen just for me.

                                                                                                                  

                                                                                                                                                                   

In the next bed was a lady who didn't seem to have brought lots of things to do. Couldn't help overhearing her conversation with a visiting doctor who obviously knew her well - Hb 72, kidneys, not feeling well due to 'all the rubbish in your blood at the moment' and so on. Like I said, proper ashamed.

My transfusion has been going fine, the nurses are delightful, there are fairy lights on the windows, a view of the Post Office Tower, one set of antlers and one pair of reindeer socks - what more could I want?             

OK - more knowledge - but I now know that the blood I'm having is basically red blood cells - the leukocytes have been taken out. The amount given should bring me up to normalish levels, so no problems with having too many RBcs. I have found that the lino in the 4th floor reception is as bright and breezy as the 1st floor one - 10 points to anyone who can decipher all of the words...

I'm still grappling with the question of what happens to my bone marrow in the longer term on this trial - if failing marrow is dealt with by transfusions against an expectation of ongoing treatment, when does it get a chance to recover? I've planted this one with the research nurse and will raise it again at next clinic. Watch this space! And Happy Christmas!