A lot can happen in a week. Last week’s visit to the day therapy unit (sounds like a luxury spa) on Tuesday resulted in a unit of blood and some IV fluids. My Haemoglobin was down to 80, the point where a top up is required.
We had a meeting with Amit Khot, our head consultant, on Friday. He confirmed everything was still on track but the marrow was slow to recover after the Valgancyclovir drug (as had been explained numerous times). He would not put a timeframe on the recovery but said it would be a number of weeks. Until the marrow recovers I will continue to require regular blood transfusions – probably weekly.
Over the week I had been slowly developing a cough from some sort of chest infection which was starting to worry me. Amit checked me out (chest Xray and throat swab) and said, although my chest appeared clear, I should check in to the hospital if it gets any worse.
I had a tough night on Friday night with shivers and then mild temperatures so rang the doctor at 7B on Saturday for a consult. She felt it needed further investigation so organised for me to be admitted to 7B on Saturday afternoon (by-passing ED thankfully).
After a number of tests and another chest x-ray and an overnight stay in 7B the team felt I was OK to be discharged on Sunday morning. However in the meantime my haemoglobin had dropped to a dangerous level of 67 (from 83 on Friday!) – meaning I required two units of blood before discharge.
My neutrophils were low last Friday at 0.8 so Amit had advised one shot of GCSF which took them up to 2.7 on Saturday, within the normal range. However by Sunday they had dropped back to 1.7.
My platelets had also risen significantly to 38 which was pleasing to see.
After receiving the blood I proceeded to walk back to Docklands – about a 45 minute walk.
Monday has been a good day with my cough being quite manageable and my energy levels OK.
The main challenge for me at present is preventing frustration creeping in where I can see that the end of this stage of treatment is not far off but I don’t have a timeframe which could be weeks or even months. So in the absence of any better information I have to continue with my ‘one day at a time’ mantra taking each day as it comes.
Last week we drove out to Kew to have lunch with James and Victoria Watson. James is about 30 days ahead of me in his treatment for ALL and has been going through many of the same things that I have experienced. It was good to swap some notes with a fellow cancer patient. Victoria is doing an amazing job as they have 3 young children and their own wool broking business to run.
David Hodge dropped by for dinner on Friday night, being in town for business and footy. It was good to catch up on some Wagga news.
Last week we also made a great visit to the historic (National Trust) building and gardens of Ripponlea in Elstenwick.
Claire is back from Perth and we celebrated Mothers’ Day with a family dinner on Sunday night with Claire, Lachy, Toby and Hanna.
Jan, Claire and Lachy head of to the US this week to join Dougall for his graduation ceremony. Unfortunately I am still too ill to travel so will be joined by my parents for some company for the 10 day period.