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AML & Climbing - a random info thread.

gfdonc

18-Jan-2023
5:15:17 AM

Best wishes again Rod, and thanks for all the updates.

kieranl

19-Jan-2023
9:28:32 AM

Thanks for the update Rod. Such a long road.

martyn

26-Jan-2023
9:05:38 PM

Hi Rod, I saw your thread after logging onto Chockstone after many months. Sorry to hear of your battles with AML and just in case you need anything (climbing books to read, other books to read, climbing mags etc., or just a cup of coffee). I work at RMH on Mon, Wed and Thursdays. Let me know if you would like a visit- just ask your nurse to call the Drug & Alcohol team (really!) and ask for Martyn Lloyd-Jones.


gordoste

27-Jan-2023
1:21:11 PM

Glad to hear things are going about as well as you could hope!


IdratherbeclimbingM9

28-Jan-2023
6:47:03 AM

Thanks PeterW, gfdonc, kieranl, martyn & gordoste.

Martyn, I appreciate your offer but it seems circumstances are against us, as I’ve now been discharged from RMH and my wife and I are living in lockdown at the Leukaemia Foundation Apartments across the road, with ongoing appointments at PMC on Tuesdays and Fridays!

I was initially told that the first 45 days of the 100 day recovery schedule that I’m currently on would be in hospital, however I was discharged at Day 19 due to progressing so well.

Yesterday, Day 30, was a milestone day due having another bone marrow biopsy and lots of blood samples taken to look for amongst other things a chimera - a measure of what % of my new marrow is the donor’s vs any possibility that some of my original is still there. They are aiming at (and confident of), 100% of my marrow being the donors.
This will be repeated on Day 60 and Day 100.

It was a long day (0730 - 1700), and involved a complex review and also being hooked up to a magnesium supplement drip, as the body is hungry for magnesium at this time apparently.
Grow little marrows grow!

I have been put into a physiotherapy program that starts next week, and in the meantime have been walking to build up again.
The walking hasn’t been too successful and I was told to back off my expectations and progress more slowly.
Over the course of a week I incrementally increased my distance from 0.25 km to 2.0 km but paid a price for it with burning calves, that remained so for the 48 hours after the 2 km effort.
It was like the lactic burn your calves feel after spending all day on a steep slab climb, but wasn’t alleviated by stretching at the end.
I have since dropped back to 1 km and my body is much happier for it.
Consolidate and build is my new theme.

I was discharged with two large brown paper shopping bags full of medications.
Unbelievable how many are required to keep me on the straight and narrow!
Some have side effects like developing an itchy rash on my arms, but because that medication is protecting my kidneys the Dr says it’s more important than the rash, so take this additional tablet for the rash!
Half my meals seem to be meds at the moment and I’ll be glad when I’m off them down the track.

You can’t help getting older, but you don’t have to be ‘old’.
Our bodies are our vehicles to our future, but I’m finding it’s weird being the same age as old people!
;-)

martyn

28-Jan-2023
8:46:38 AM

Glad to hear things are progressing positively. FYIW a good friend of mine had a BMT about 24 months prior to the start of the pandemic. He is back at work, albeit a sedentary job, and also playing golf....I think that his handicap has improved too. Definitely go slow with your exercise- small gains are way better than overdoing it and taking a physical, and psychological step backwards. Best wishes. The offer still stands if you are re-admitted and need cheering up.

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