Life after a SCT - A Survivor's Guide

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Let's see if we can collect some helpful information and real life experience that we can signpost folks to after they have come home from their Stem Cell Transplant.

A couple of useful things I found were:

My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality - it took me a good 2 years and I was 60 at the start of my recuperation.

Yes some folks bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.  6 months is the average recovery time…… at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…. I was not able to feed myself due to my bad Peripheral Neuropathy and even then I was not eating much……. Your body has been through far more then you imagine so be kind to yourself, give yourself a break as you are doing good and honestly this will pass.

There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years

My consultant gave me this basic percentage scale for classifying where I was on the recover journey.

50% = when in the hospital going through the transplant process.

60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepare food. Reliant of others for preparation of food.

70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.

80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.

90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.

100% = No physical after effects and able to do multiple tasks including being back to work.

She also said on average recovery time-line is about 6 months with your recovery improving about 10-15% per month post SCT

This is an average time-line….. with general acceptance that when in the hospital going through the SCT process we are physically at about 50%…… any less would indicated some comorbidity issues like pre-existing health conditions that may reduce the 50% starting point and possibly add a month or so onto the recovery end…..

For example I have Asbestosis so this was looked at very closely and due to my prognosis was seen as an accepted comorbidity……  so I went back a good 10%…… other issues could be blood cancer type specifics, genetics…..

A web page by the Anthony Nolan Trust - The First year post SCT (link)

A web document by Dr Peter Harvey - Life after Treatment (link)

  • A long FaceTime with our lass last evening, she will continue to shield as per her teams instructions. She’s rather worried though, as a freelance musician she responds to calls for her work; if she turns down many, word gets around and she won’t get called. 
    her bloods all came back fine apart from the ferritin levels which we all knew are still high but GP thinks her hair loss is most likely stress and anxiety as there’s nothing else suggested.

    i suggested she try some daily yoga, and sent her a link to a you tube version. And also reiterated I was available whenever she wished, day or night, as I always was when she was going through it all. I also suggested she phone the blood cancer helpline as I’m sure they will ‘get it’

    She’s going to drive up to see us in around 10 days time to collect the wood from our tree for her wood store, think she needs some parent-time, SD  of course! We might even take the pup for a walk. 
    Hugs xxx

    Moomy

  • Hi moomy, it’s been some journey for your lass and the challenges in the freelance music industry will be stressful but some M&D time would help a lot.

    I am hearing lots of challenging stories from people coming out of lockdown up North.

    The main problem we are now having is the amount of folks on ‘staycations’..... the visitors we normally get from abroad and the UK are hardly ever a problem but the UK ‘dirty campers’ are becoming a big problem.

    Fiona has been on holiday for a few weeks so I went off line and we meet up with our granddaughters fro the first time in 7 months.

    Just getting ‘into’ the new site and like all these things just takes time to find your way around identify the issues and fix them.

    Mind you, we have had our new car for over a year now and I just found out how to change the time on the clock Joy

    Stay safe.

    Mike

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Argh! Just wrote a reply and got booted off the site - again!!!! And lost it all!

    Yes Mike, messy, litter strewn camping is sadly with us all, I despair of folk who carry stuff to use then dump the remains instead of taking it to home or even to a bin!
    We are booked in for a couple of nights away next week, but take our litter home! It will be our first overnights in the new motorhome since we got it in March, and yes, still finding stuff that we didn’t know about! 
    I think you’re right, the lass needs a bit of parent-time! We find she does get herself wound up, her housemate/partner is great with her but not quite the same!

    Hugs xxx

    Moomy

  • Soooooo, she’s almost here, plus dog of course as partner is working at home. Really looking forward to seeing her, we miss seeing our kids so much!

    oh and our couple of nights away in the motorhome, even though they coincided with some of the hottest days, were a total success! 

    Hugs xxx

    Moomy

  • Great news mommy in many ways Heart eyes

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • That was a lovely visit, sat a long way apart with a fan blowing from her towards us. Played with the pup, lots of easy chat.....took the pup for a walk (for essentials!) and a bit more chatter and now she’s on her way home.

    Hugs xxx

    Moomy

  • I sent our lass a link to a group/site we never knew about; Hodgkin’s International, it supports HL patients through all sorts of secondary problems. She’s pleased and is going to join them. 

    a wet day today, she popped on a photo of Henry-pup looking out of his doggy-flap, presumably not a fan of going out in it! 

    Take care, all

    Hugs xxx

    Moomy

  • Hi moomy, good that she is looking to join the Hodgkins International Group hope she can connect with like minded people.

    Lovely day up North so went for a walk along the Inverness end of the Caledonian Canal and did a good 5k what ever that is in old money, even had a great meal in an outside seating area of a Canal restaurant.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Better weather than here then, Mike?! It’s been raining steadily since just after 9! 
    Hugs xxx

    Moomy

  • 5k is just over 3 miles, Mike.....

    I hope our lass is ok after sitting here for a few hours; she was a good 8 feet away from either of us and had a big fan driving air from her towards us. 
    it’s just about stopped raining here, forecast is fine for tomorrow, some washing may get done....

    Hugs xxx

    Moomy