To the tune of "No more Heroes"... come on, sing along at the back there! "No more che-mo any-more!"
Yesterday's hospital appointment went on for hours and hours. Valuable knitting time - but I will tell you about that another time!
We were seen by a Registrar which meant she had to relay our questions to the Consultant and then report back. This was unfortunate, as we knew this was an "important" appointment in terms of FL's long term treatment plan. So there was a bit of a muddle - "chinese whispers" - when she forgot to relay a section of the information to us. So she told us a decision had to be made about whether or not he was to come off chemo, and went off to ask the Consultant. She came back with the news that they needed to take a bone marrow sample, and didn't mention a chemo decision. And handed us a "quality of life" questionaire to be completed while he waited for the perapetic drilling-woman. 4 pages of questions about self-esteem and bowel movements. Lovely. Meantime, she forgot to shut down the computer screen so I was able to read his Free Light Chain results and saw that his ratio had fallen again from 1.44 to 1.31 between October and December. If you remember, the previous doctor told us that if his levels fell again, he would have to stay on the chemo to the end of the 9 month series.
Then there was a bone marrow sampling pantomime when the hugely-pregnant drilling-woman could not squeeze past the trolley and the couch to reach FL and I had to be asked to leave the room and take my chair with me, to make space! However, I came back in because FL had no idea what was going on (lying on his good ear!) and the drilling-woman had a very strong accent. Drilling-woman was worried I might faint, but I explained I had sat through this before and he needed me there. Just as well, as he kept misunderstanding her and tried to get off the couch while it was still elevated! She kept giving me sidelong glances to check I was still upright. I felt like saying "Listen honey, nothing phases me now, just shut up and drill!" but that would have been really nasty!
Anyway, sample taken, the Registrar reappeared and handed us a prescription for thalidomide. Errr... what's going on? Turns out that he had been randomly selected for maintenance tratement. Oh - so he is off the chemo? "Yes." Please explain the grounds for the decision? "He has reached a plateau." Hmmm. Depends how you plot your graph I suppose! Purpose of the bone marrow sample? "To measure the active disease left in his plasma after the chemo". When will we get the result? "Ask your GP in a couple of weeks" What will it mean? "Errrr........." Never mind.
By this time it was 3.30pm and there was nobody left in the clinic and my son was on the mobile phone in a panic about transport to his music lesson. So I trotted down to Pharmacy to get the drugs.... only to be told they needed authorisation to release them. Back to the clinic, and they had to page the Registrar to come back and sort it out - involving a phone call to Leeds (centre of the drug trial) and one to the drug company with a new reference number. Home with 5 minutes to spare before my son had to be driven 7 miles to music!
So... although we are very happy to have seen the end of the chemo, I have a niggling fear that their idea of a "plateau" is not mine. That one more zap might have been a good idea. Although I suppose he DID have that between December and now... hmmm. But we are definitely pleased to have been granted maintenance treatment. So.... fingers crossed. Await bone marrow results - realistically next month at the hospital. Hope the MM stays quiet for as long as possible.
Meantime, lots of good food and the occasional drink, plan our holiday, FL's golf and my knitting.
But don't talk to me about yesterday's knitting. I'll blog about it tomorrow when I've calmed down a bit!