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.

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)

  • Mark, 

    You’re doing brilliant to be back at work so soon, especially after all the problems you have had. Here’s hoping the scan is exactly what you want it to be, and you can continue the trip back to “normality”!

    Talking about donors, mine is my big bro - there is seldom a day goes by that I don’t think about what he has done for me. I well up most times - there’s a song by Foo Fighters called My Hero - sums it up perfectly. I reckon being a donor is about the most special thing you can do so good on your sister in law. I would have liked to have given back in that way, but as any of you who have watched the recent BBC Dracula programme will know, nobody wants our blood!!!

    Greg

  • Hi Mark,

    big congratulations for returning to work! And so swiftly, too! Fingers firmly crossed for clear scans for you.

    Mile and Greg, I too often think of donors, they get gold stars from me! Everyone we know has gone on the register, whenever possible! I silently thank Thomas so very often. Glad you’re doing well.

    Hugs xxx

    Moomy

  • When I was told that I had to go down the SCT route we were caught in the headlights. I was asked about my big brother never thinking he would be a match and having some medical issues and 68 I thought he would not be able but a week later it was green for go

    We moved away from the our home area over 30 years back and were not close but since this all happened I have such an appreciation of what he did for us......... I even said (not knowing how SCT worked) that I would give him £10 per Stem Cells donated......... now lives on a rather large boat in the Mediterranean Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thomas told us that he had a paid day off work to register and paid time off to donate, and he’d do it again for anyone in a heartbeat. His thoughts were that if he could save a life, why wouldn’t he? Why hesitate?  He’s a champ! 

    He was very cautious in asking daughter ‘how she was now’ and when she said she was still in remission, he softly said ‘wow’

    Hugs xxx

    Moomy

  • Hey guys. 
    Just wanted to let you know my pet scan came back all clear and my pituitary gland has improved further. 
    Happy tears in the house tonight. Still a long journey ahead with many more obstacles but the first step in the right direction. 
    Thank you again for your advice through out this, it’s definitely helped. 
    Mark x

  • Big high 5 Mark - so pleased for you and the family.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Oh Mark, that’s so great to hear! I’ve a wee stinging  in my eyes too....

    big celebratory hugs to you all xxx

    Moomy

  • Fantastic news Mark ! Your progress has been amazing long may it continue x

    Mark

  • Hey Mark,

    How are you doing?

  • Hi Mark,

    I am doing ok

    CMV virus keeps popping back to visit me and I think they tapered me off steroids too quickly as I have been very fatigued since Christmas. I am finally off them but my bowel movements have increased so i fear they may put me back on them. All part of the roller coaster of the stem cell transplant I suppose. I am walking every day and have tried little jogs but dont think my body is ready for proper running yet. Are you back running ?  I am not back in work yet but hopefully will go back late spring ,fingers crossed.

    Mark