Life after a SCT - A Survivor's Guide

  • 580 replies
  • 25 subscribers
  • 576099 views

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.

My consultant also gave me this basic 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 prepaid 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 the recovery is about 6 months with your recovery improving about 10% per month post SCT

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)

  • Hi Tessa I had trouble with my gums , I couldn't even touch my teeth with a cold finger. I've carried on with my Minnie Mouse toothbrush and Colgate sensitive. And I can now report I'm back using my electric one , still the same toothpaste though, I've  tried all the others. Just the odd receding gum tooth doesn't like chocolate melting around it. I'm just over 3 months post auto.

    Sue 

  • BHi home alone , the sick person isn't going or her friend we are going to rearrange when she's better, it also means I can have fish and mushy peas for tea from the chippy now. We are away on Thursday until Sunday driving to Kent to see friends and go to a party so maybe a rest tonight will be better as we have 6 hours travelling by car to get there.

  • wmajor physiological helo mike !

  • i didn’t have many visitors tessa,, by my own choice, left home twice in 12 days to go to clinic , and still

    managed to end up in here with

    flu since saturday, so i think i will be a full time hermit for a while longer 

  • sue , i can’t find the comment, to reply to , but i watched that guy on lymphoma.org,, i thought he was excellent, what he said made sense, and he had a brill way of put it over !

  • Yes I enjoyed it , I found it in July 2016 when I was concerned about exercising during RCHOP, he was right some days I spent tired out on my bed watching tv, then next day I'd be flying round the house spring cleaning, or off swimming and Zumba. He filled me with confidence as friends were concerned I was doing too much.

  • Hi all that have contributed to this post. The personal journeys you all speak of inspire a lot of hope :)  we are waiting for husb allo (to beat the bit** queen AML. 

     *Learning God is in control and every day holds the chance of another miracle.*

  • Hi, to those who still have patchy spots of extra sensitivity of receding gumline’d teeth, as well as using sensitive type toothpaste, ask your dentist if they can put some special fluoride gel onto the dentine where the gum has receded, it needs ultra violet light to seal it and does taste odd, but it does help for a good few months. 

    Hugs xxx

    Moomy

  • Homealone I read your bio.  Similar to my husb (dx AML inv 16 January 2017). 4 chemo (FLA, FLA IDA, 2 x Hidac) were just feeling good when wham two weeks ago told the markers are back (or never left). 

    So it’s Allo prep time.  Scared. 


    Also - you being alone.  


    We are in a similar situation no family in uk other than my husbands 28yr grown up son (who has not been supportive at all!  I’m not sure if he “gets” how serious this is or if he’s avoiding his dad because he’s scared.  Prior to the illness they were very close but now stepson seems to avoid visiting etc. I’m thinking of sitting him down and having a full on “this is what we dealing with buddy, pull your head outta your bum n support your dad” chat but so far I’ve bitten my tongue. 


    Anyway I digress .... 


    what I wanted to say homealone is thank you for your posts as it is helpful to read as your are a few months ahead of my husb. 


    Oh and we are self employed n the business we built up together is now on brink of ruin because it relies on my husband being “there on site etc”  house is up for sale for past 8 months but hasn’t been sold so not quite sure how much longer we can cling to it .... bank HAS been helpful and patient we just praying they bear with us a bit longer ....


    But but but ..... before you all think I’m wallowing in self pity I’m not!   I’m grateful my husb is alive!  Grateful and BLESSINGS galore because I reckon... such is life ay .... and as long as he got LIFE I figure none of that stuff above matters


    This Cancer malarkey has a way of making one realise what is important and what is not! 

     *Learning God is in control and every day holds the chance of another miracle.*

  • FormerMember
    FormerMember in reply to jaymacabc123

    Hello Jay

    I found some friends were supportive at first but have withdrawn now. I think they want me to hurry up and be normal again. Despite explaining the immunity problems they just can't absorb how long it goes on for. 

    Some friends were useless from the start. They seemed unwilling to give up any social activity, even a coffee morning, to come and give me some company. Its made me quite bitter and I don't know if I want to rekindle some of these 'friendships' when I'm fit enough again. 

    Fortunately I'd already retired but having to pay gardeners is an extra drain on resources.

    And I have to pay someone to take me to all my appointments so far. I drove to one myself for the first time this week. I had to gradually build up my confidence in driving again setting myself a weekly target.

    Hope things progress positively for you.

    Tessa