For those following the blog you may have noticed I didn’t make an entry yesterday. That was simply because there was not much to report. I slept reasonably well and the day passed without too much drama. Fiona and Michael made another visit and then headed off to Canberra.
Monday night was similar with 6-7 hrs sleep in between observations, blood tests etc.
Tuesday was the day of excitement as it was my day to be ‘released’ to go home. The nurses were all very enthusiastic about this and tried to get the IV drugs through the machine as early as possible.
However I was surprised to learn early in the day that my red blood cells were very low and the team decided to give me two extra bags of blood as a transfusion before letting me out. This was to take 4 hours. Plus the Ambisome anti-fungal IV which takes two hours.
So I spent the morning and early afternoon until 3pm knitting away (learning how to decrease stitches today) waiting for all the IV drugs to go through the system.
Jan also brought in a great present from a mate in Sydney, Steve Duncan which was a new Akubra hat. Steve was not happy about the small cap I am wearing!
I met a guy yesterday who has just gone through a bone marrow transplant (after 2 years of treatment – for a different cancer) and he was happy to tell me that plenty of things can go off the rails with transplants, as it had for him.
With that knowledge I asked the Heam Team what I was likely to be in for. They were guarded with their response and said I was best to speak to the Transplant specialist – Amit Kot, who I have met just once, and hope to ‘start the conversation’ (as they say), soon.
So by 3.30pm I had left my lovely room on the 7th floor overlooking Royal Parade and Grattan Streets and headed for home to unpack, potter and chill out – bliss! In my absence Jan has put together a range of pots with a lovely kitchen garden full of herbs, lettuce etc on our balcony.
Unfortunately it will only be for a few days as the Heam Team would like me back in by Saturday or Sunday as my neutrophils drop to zero – leaving me in the neutropaenic stage and very susceptible to infection again. They would not say how well I would manage this process second time around but on all accounts it should be a better experience than the first round of Chemo. The next stay will be for 10 days or so.
I also have another round of the rare but important drugs from the USA, Midostaurin which will start on Thursday and run for 10 days. Interestingly a warning on the packet says don’t eat grapefruit or drink grapefruit juice when taking these drugs – apparently there is a conflict of enzymes when this takes place, as the same enzyme that breaks down the drug also breaks down grapefruit!
More in a day or so.