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)

  • Hey Mark,

    Sorry to hear CMV is causing an issue, for me it was the EBV  so I sympathise with you there. 
    I too have ongoing issues with my gut as we are reducing my cyclosporine dose so the GvHD keeps nibbling away at me. It’s all manageable at the moment and we are reducing the dose slowly as so hopefully it stay that way. I know that steroids act as an immunosuppressant so you’re probably going through the same. 
    I am back running and have been for a while but I won’t lie it’s very hard going but I’m just sticking with it. A work colleague told me the other day to stop being hard on myself and rightly reminded me that it was only Sept/Oct of last year I was laid in hospital literally fighting for my life. 
    It’s going to take time and I think we need to be realistic with ourselves. Our bodies have been through a huge and life changing procedure from which we all recover at different speeds. 
    With regards to work, I’ve been back full time for a few weeks now and have found it has helped get me feeling normal again. I’m an Electrical Engineer and work in a small busy but friendly office so it has been nice to have people to talk to again. I design commercial & industrial electrical installations so most of the day I use a computer and a calculator so not too physical, if I still worked on the construction sites then I would still probably be at home. 
    Regards
    Mark

  • Hiccups continue; daughter had to cut short her solo tour of the USA due to completely losing her voice after a cold began just before she flew out. She was gutted, tried to continue speaking as much as possible for several days which meant a much longer recovery was needed; in fact once home she hardly even got dressed for around a week, felt so bad, eventually got seen and yes, chest infection and antibiotics!

    However after just 3 days of that (obviously feeling quite a bit better) she’s back working; was teaching at her London conservatoire yesterday and caught trains north to teach at her Manchester conservatoire today, staying up there to do 2 dates with the Hallé playing a solo for ‘Bolero’! She’s a bit concerned as she’s not in practise that well yet.... 

    Because she’s been unwell her immunoglobulins have been put back again. Just hope she picks up swiftly and can get another I/g date sorted soon!

    So the problems continue for her even this long post Allo (2011)

    Edit; she may well pull out of Bolero! Teaching straight after feeling so ill has taken it out of her! 

    Hugs xxx

    Moomy

  • Did anyone catch Jo Kelly’s story on BBC Breakfast this morning? It seems Adrian Bloor (daughters chief consultant at the Christie) is now a Professor (and about time too!)

    It was heartwarming; Jo has run the London Marathon and had a baby post allo (but I guess via IVF) and has met her donor.

    Prof Bloor was encouraging donor registration by saying how easy it was and also that donating wasn’t the big procedure that is used to be years ago.

    Hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Morning 

    Yes, it was a very heart touching moment - especially when Jo gave her donor her London marathon medal ('cause you ran it with me')

    Hope this link to the 3 minute BBC video clip works.

    9% of Germans are on the register but unfortunately only 2% in the UK anything that gets people motivated to sign up has to be a good thing Thumbsup tone1

    G n' J

  • thank you so much for finding the link and posting it - I tried honestly.

    The UK do have to step up to the mark with regards to putting names on the register as a simple day out of one life can give years to someone else.

    My understanding is that if someone in Germany is identified to be a match the government covers the cost of their day off work.

    Hart warming story that is actually happening each and every day....... and a baby Slight smile

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hey guys.

    I watched it this morning and found it very moving, such a personal moment. Even though she is a busy mum, Jo has taken time to give me support and advice online over the past 18 months or so and is the inspiration I use to get back into my running and she is an inspiration to anybody going through this. Along with Moomys daughter, it shows why you should never give up hope. Loved it.

    Regards

    Mark

  • I’ve just remembered, Jo was on site as ‘sleepyjo’ years ago. I think she and daughter were going through stuff at around the same sort of time. 

    Hugs xxx

    Moomy

  • I remember sleepyjo well remembered 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • She also left the specific f/b group a while back as it was all getting a bit too much (lost too many lovely folk) but we are now friends on the public site. 
    Hugs xxx

    Moomy

  • Good to see her looking so well and making the most of life the are a few who had auto's too around that time who are still doing well and they too dropped off this site and the lymphoma ass one too, Jo was quite active in her time and I remember some of her posts and remember sharing threads and it was tough for her at the time, the were few young ones who did not make it, some, like you I still remember and always will.

     

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are