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|AML & Climbing - a random info thread.
Best wishes again Rod, and thanks for all the updates.
Thanks for the update Rod. Such a long road.
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.
Glad to hear things are going about as well as you could hope!
Thanks PeterW, gfdonc, kieranl, martyn & gordoste.
Martyn, I appreciate your offer but it seems circumstances are against us, as Iíve 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 Iím 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 donorís 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 hasnít 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 wasnít 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 itís more important than the rash, so take this additional tablet for the rash!
Half my meals seem to be meds at the moment and Iíll be glad when Iím off them down the track.
You canít help getting older, but you donít have to be Ďoldí.
Our bodies are our vehicles to our future, but Iím finding itís weird being the same age as old people!
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.
Been a little while since we heard from you, and you've been in my thoughts. Hope you're hanging in there and kicking cancer's [redacted] arse.
I had much the same thought as pmonks today; and came here to same very much the same thing.
Hope your kicking hard Rod.
Gíday pmonks, pi, et al,
Thanks for the enquiries / thoughts.
For the record, Iíve wondered how you (& others), are getting on too from time to time, but Iíve been a bit distracted - so Iím sorry that I havenít expressed it.
Where to start Ö as the journey is all consuming if not overpowering at times, and making sense of it all I feel is a somewhat futile exercise, but hereís a kaleidoscope of thoughts on it for any who care to read on and share the journey with me.
Iím currently at Day 150 post transplant and all things considered am doing very well.
This is tempered by my awareness of those in my situation that are not doing well.
It seems to me that the whole blood cancer game is a lottery with no rhyme or reason as to how things will turn out despite the best of medical intervention.
The experts treating me donít give guarantees, and I gather that the course they follow is variable depending on patient response to treatment at any given point in time.
Physically I take things as they come. It can be crap at times but this is not unexpected, and so is dealt with as it arises along the way. I find the mental challenge of dealing with the long term unknown aspects of leukaemia, eg chances of relapse, or serious graft vs host disease complications to be a greater issue. Itís an insidious debilitating disease.
So, back on topic of howzitgoinÖ
The easy stuff to recount is the physical -
Since I last posted Iíve had my Hickman Line removed, and now blood sampling requires pincushioning me - a regular occurrence.
My eighth bone marrow biopsy went awry.
Iím told that itís a rare occurrence.
The resultant pain and immobility landed me in hospital overnight (after an MRI scan), but as it turned out it cleared of itself quite quickly.
Recently the senior Haematologist ended the main immunosuppressant (cyclosporine), that I was on much earlier than I expected. Iíd based the longevity of this on what Iíd learnt from others plus background reading, and his doing so is an attempt to deal with the residual remaining blood mutation (NPM1), that I have; ie let my new marrow attack it instead of being held back from doing so.
Consequently Iím currently at my most vulnerable stage to GVHD, but on the flip side they wouldnít have done this if I wasnít progressing as well as I am.
The trial Iím in has ongoing regular and very comprehensive monitoring of me, along with team reviews. This continues to be a source of comfort as it provides an early heads up if I start running off the rails and allows for timely intervention.
Expectations change as events unfold along the wayÖ
As my review appointments started spanning out we started mentally preparing for returning home in the longer term to participate in a greater normality instead of being a professional patient.
After 10 months in Melbourne we had the Anzac weekend back at home in rural Victoria. This also involved appointments with the local GP to bring them up to speed with my condition as part of my transitioning, and their ongoing collaboration with the Haem-Team at Melbourne Peter MacCallum Cancer Hospital.
What an eye opener our home visit turned out to be!
Reflections on visiting home ~
It was hard to believe how much growth the trees and garden had put on in the intervening time. The bush obviously appreciates this wetter than average year.
We stepped out of the home environment hurriedly when we left, and have been through much since, only to return and get glimpses of yesterday like 10 months ago was indeed actually yesterday. Consequently I feel dead but alive - an eerie sensation of being locked in time like the subject of a photograph.
My vision sees what needs doing work-wise around the place, picking up where we left off Ö but my mind questions the importance of the upcoming inevitable time involvedÖ ~> The future will be a balancing act of budget and longevity!
It was great to be in our own space again; particularly at night in bed being able to look at stars and hearing silence, as compared to Melbourne light pollution along with associated urban noise of sirens, trams, etc.
Morning bird calls were very refreshing, along with relaxing breaks enjoying the sunshine on our outdoor deck built at treetop height. The peaceful views with cuppa in hand, and our faithful puppy to share it with were moments to be savoured.
The reunion with our dog was special. Five minutes of happiness with a dog is worth heaps more in life than the time involved.
I had a wake up call regarding how little resilience I have, when I pumped up the tyres of 2 pushies (and also checked my motorcycle for correct tyre pressure), as I realised by that exercise that I had nothing left in the endurance tank. A sobering experience.
Normally Iíd do that and go for a 3 hour ride!!
I felt that I was simply a shell of my former self but unlike a chrysalis that gives forth a butterfly, Iím simply a moth looking for a niche to dry my wings so that I can get to fly in the future.
After this I rolled on the mtb downhill to the local bike shop to leave it there to have its gearing lowered, in anticipation of future attempts to pedal it in the local hills.
Walking back home I appreciated stopping to chat with friends, as much for the rest in doing so, as for the catchup.
Walking in a hilly environment is certainly a different yardstick to the relatively flat terrain around Royal Melbourne Hospital Ö
We returned to Melbourne all to soonÖ
In the short term future we Ďmayí get to return home again in July after next biopsy results, if they favour a spanning out of the medical reviews.
I have a friend with a health issue who recently underwent pathology blood sampling and an ECG and was put on medication - a big deal for him. I marvel that for others these experiences are new and Ďexcitingí but for me they are now a normal regular event. What stresses him I now regard as lightweight but it was only a short time ago that I was him.
My whippy stick for keeping things in check remains idle a lot. I always seem to be waiting on the next blood result to flex it ...
Bloods have been bouncing around a bit, but the tweaks are keeping it coming back to the straight and narrow.
I had it reinforced again today that mentality is a fragile thing.
Was doing our preferred park walk with my wife and met a random unknown pedestrian doing the same with her dog.
We passed each other as she was admiring a large trunked gum tree and we got to talking about it.
I showed her a photo that I took of it with my wife standing in front of it last week and offered to do the same for her.
Conversation turned to are we local / walk there often, and for the first time I found myself 'admitting' (an interesting concept - am I partially in denial?), to her that I have leukaemia and walk here as part of my rehabilitation...
It's weird knowing my circumstance but not yet finding myself admitting it outside of a medical (hospital), or close friends situation ...
She touched me on the elbow and said she was sorry -
That random act of kindness almost brought me to tears ...
Where do these feelings spring from?
I guess it is just the ongoing intensity of the whole process/situation...
~> Iím looking forward to some outdoor recreational therapy in the backblocks with mates.
chemo) marrow transplant I lost my vaccination immunities. The haem-team decided that I can now renew my Covid and influenza shots, Ö the first on the recovery road of renewing all of the lost ones like diphtheria, meningococcus, hepatitis, measles, poliomyelitis, etc.
~> an ongoing source of intrigue and frustration for me, as regards how general public perceives / uses them.
I need to wear one almost constantly, so my covid lockdown lifestyle has not changed since its inception.
I have too much time invested in my recovery so far, along with my future; to be tolerant of people who donít respect that immunocompromised people need their personal space. As such Iíve become adept at anticipating and avoiding anyone who I perceive as a risk to my recovery.
One can readily correlate distance from hospital with the degree of mask wearing!
We pick our walking routes (and potential outdoor coffee stops), carefully to avoid unnecessary risks.
I also look forward to when my immune system allows me to partake of foods currently off my menu due to live bacteria risk, like eggs, ham and other deli meats, soft cheeses, smoked salmon, prawns, undercooked meats, etc
In the meantime we enjoy daily walks of anywhere between 5 and 10 km to build up my fitness again, supplemented by physiotherapy twice a week.
Life is nothing if not interesting eh!
Glad to hear you didn't fall off the M10 full-length hook pitch! If only you could see the summit getting nearer!
> After chemo I lost my vaccination immunities.
That's interesting because I would've expected that to be a side effect of the BMT rather than chemo. Shows what I know!
Here's hoping things stay on the improve. Good luck!
On 27-May-2023 PeterW wrote:
>> After chemo I lost my vaccination immunities.
>That's interesting because I would've expected that to be a side effect
>of the BMT rather than chemo. Shows what I know!
You are right. Silly me, Iíll blame chemo brain as that period is already starting to blur!
>Here's hoping things stay on the improve. Good luck!
Itís subtle because the improvement isnít really noticeable till looking back with hindsight.
The walking is certainly coming easier and the physio is restoring my upper body muscle tone, so Iím looking forward to getting back on rock again sooner rather than later.
I reckon Iíll be in the category of being a knowledgeable bumbly by my normal climbing standards for quite a while!
I'm so happy to read that you have managed to get home and restore a little bit of normality after such a long time spent away! That's a huge milestone and I'm sure your mental approach has been a big factor in the recovery. Congrats and hopefully things just keep improving.
Hi Rod, thanks for your updates.
I'm always a little dumbstruck when I receive these, hard to offer advice or words when I have such little con-text of the hardship you are going through.
What does shine through is your optimism and willingness to battle on which is a major asset in your favour.
Best of luck with your further recovery and I look forward to the next instalment.
Welcome home, Rod. time to enjoy the pleasures of non-hospital life.
Thanks gordoste, gfdonc and regdog55.
A trip report update of sorts Ö
Escape day from Melbourne for my wife and I was 30 June and we arrived back home after 12 months of playing reincarnation games down there.
Most of my pathology is being done fortnightly (locally), and reviews (with occasional biopsies), done monthly back in Melbourne for the foreseeable future, but my blood numbers are good and expected to continue to get better, so the Haem-Team is relaxing its grip on me.
Although I was daily walking 10 kms in the relatively flat terrain of suburban Melbourne I was only cautiously optimistic of handling a lesser distance in our local hills, so my initial Ďsuck it and seeí walk was 3km.
I then set myself a target of a 10 km single-track mountain bike ride mostly uphill from town for 5km then returning on the same route.
This proved more taxing than expected and although I was mostly in granny-gear, and stopped 3 times to converse with friends encountered along the way (simultaneously appreciating the rests), that ride felt like days of old when I was suitably wasted after a 50 km ride.
Between walking on non-ride days and riding 3 or 4 days per week my rest days incorporate Royal Melbourne Hospital Physiotherapy which continues for me via internet.
My next target was participating in a rail trail and back roads style group ride with my old riding group.
They rode 25 km disappearing into the distance.
I caught up with them at their first rest stop, however I then turned back retracing 7 km of easier rail trail portion at my preferred slower pace, and arrived back at the town cafe at the same time as the group to refresh my social skills, all the while maintaining social distancing, mask wearing etc due to my lack of immunity.
I got home after this ride to some sobering information.
My wife had received a call from one of our neighbours in the Leukaemia Foundation Apartments where we stayed for the last 12 months.
Another of our neighbours there had just died, and yet another one has relapsed - only to be told that there's nothing further the medicos can do for him, so he's gone home for his final days.
He was going great recently when last I saw him and was personal inspiration for me as he was about three months ahead of me on the marrow transplant trail.
Both of them are/were in their early 50's, and were our 'family' while we were there.
Since then weíve learnt of another who is experiencing heavy duty lung issues and has been admitted to intensive care.
When the health tables turn due to GVHD, they turn quickly Ö
The experience of others can take the wind out of oneís sails big time and both my wife and myself have been noticeably more fragile during this period of transition back to normality.
Unfortunately this journey is as the Senior Haematologist in charge of my case said to me about 12 months ago - leukaemia wins. They don't know how to cure it, only treat it semi-successfully...
So far Iím in the 15% category who come through the process relatively unscathed.
Here's to the present.
Iím living a quieter vsn of life now and trying to re-find my tribe as I feel like a shell of my former self - a weird mix of recognising the/my cocoon but finding it largely empty of its former content. Making sense of this is so far proving futile.
During one of my physiotherapy classes involving about 8 other patients, I was intrigued to become aware that my progress has been inspiring to others in my class. I hadnít considered this as a possibility because I participate enthusiastically due purely selfish motives of progressing my health and reaping the benefits of what I put in!
After being home a month, doing increasingly longer bike rides and walks, I now feel that basic climbing is realistically back on my agenda, Ö though it isnít strongly calling me at present.
So much to do and so little time to do it, but itís great to have choices!
Appreciate the moments as they present because they are all too brief.
That's fantastic and amazing Rod. Not much more I can say.
Next goal - outlive the Senior Haematologist! :-)
Hopefully you can get back on rock soon. It won't matter if it's Grade 2, it's just there's something healing about sitting on a cliff ledge on a nice day, just feeling the flow of nature.
So glad to hear you're still getting out there and kicking butt M9! I recently lost a friend to pancreatic cancer (their second cancer rodeo after a breast cancer battle a decade ago), and one of the lessons they modeled in between was to live life to the fullest while you can. Their informal motto during their decade of remission are words to live by: "YOLO BITCHES!!!!" ;-)
Really hoping you outlive your study M9!
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