Hey Team,
The good news is……..(uncomfortable pause)…….. yesterday (Day 13) I was discharged from hospital! On Day 11, my WBCs became ‘detectable’ and in just three days, they are now at 2.5. For me, about 8 is normal. So I have been really fortunate with my experience. Speaking to the nurses, in the past two years, there have only been two patients that have not required a visit to ICU or some form of intensive antibiotic intervention. Now it is three!
Over the past few days I have had a few challenges. Bone pain hit with vengeance and my platelets (which makes blood clot) fell to a level of 10, where it is normally 180. Apparently I was at high risk of bleeding out if I broke skin!! On that day I was confined to bed until I was given a platelet transfusion at noon. It was an interesting ‘control measure’ imposed for my safety. I think about the scenarios that could result in me ‘breaking skin’ when out of bed, but in my hospital room, and came up with the following;
- whilst walking into my bathroom, trip over and knocked my head on the basin;
- whilst showering, shower rose becomes unfastened, swinging down and hitting me with such force that I became unstable on my feet, falling over and knocking my head on the basin.
- whilst brushing my teeth, drop toothpaste on the floor, as I bend down to wipe it up, I knock my head on the basin.
- whilst sitting down in my room staring longingly out my window at the beautiful view, a bird hits the window giving me such a fright that I jump in surprise, fall backwards over my bed, stumble uncontrollably into the bathroom where a slip on a banana peel and fall over, knocking my head on the basin.
- whilst ………. (insert your one here and send it to me for a cheap laugh) So needless to say, I complied with the nurses risk assessment and stayed in bed until noon. Safer that way.
So now I am happily at home. I expect the bone pain will continue for a few days and fatigue will stay with me for the next few months. The fatigue means that I need to rest for an hour after doing a simple activity like taking a shower.
From here I have a lot to keep me busy including;
- I have a port (permacath) in my chest that connects to my jugular vein for easy blood access. That will be surgically removed on Friday.
- mid September I catch up with the guru Prof Avni Sali where he will offer more advice on diet and wellness. I will be sure to update you on what he offers.
- I meet with my kinesiologist Nan Abbott. She works with me to ensure I am walking in the right direction on the right road. She opens my eyes to challenge what I might otherwise miss or ignore (to my own detriment).
- late September I will have a bone marrow biopsy. This is a measure of cancer. It will allow me to understand how close I am to remission. I say ‘how close to remission’ as the best time to assess this is at ‘Day 90’ post SCT. So this will be an interim test.
- I then meet with Australia’s leading Myeloma specialist to discuss the merit of an Allo Stem Cell Transplant (cells from my bro). Should be an interesting discussion.
Busy times. Bring on the carrot, beetroot, celery, apple and ginger juice. I have missed our morning rendezvous.
As I mentioned in my last update, Sarah and I are very thankful to all of the people who have been there to support us through this challenging time. You guys rock.
I hope this message finds you well!
Take care
Geoff
