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)

  • Amazing and a happy 10th re-birthday to her TadaTadaTada

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Happy Re-birthday. 10 years is such a fantastic milestone and one many of us dream we can reach. 
    I wrote a letter to my donor a few months back but haven’t had a reply back. Although it would be nice to hear from them I fully respect their privacy but just wanted to let them know how grateful I was for the chance they’d given me. 
    Regards

    Mark 

  • It was my 6th re-birthday yesterday Tada

    Still doing well although still working through my treatment ‘left overs’. Had a Cardiogram yesterday, pleased that I was told I had a heart and all looked ok so a review in a few weeks but most likely on the beta blockers and blood thinners for life - but a small price to pay for life.

    Still waiting for my 3rd primary Covid jab…… the system has got rather slow up north at the moment.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • High glad your doing well Highlander 10 years Happy Birthday, I am now 4 years on and living on Corfu, I had a phone call appointment last week, next appointment in 12 months! If I’m still ok they will discharge me.

    I have arrived today in London to see my son and grandchildren who I haven’t seen or hugged for almost 2 years!

    life’s good loads of golf! 

  • So good to hear from you  and great to hear that life is good.

    I can imagine not being able to hug my granddaughters for that amount of time - enjoy.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Great to hear from you  and know you’re enjoying life on Corfu, with all that golf. 

    Daughter is still doing her immunotherapy even while here (sadly we are all together as we are saying our farewells to my husband of 52 years who is dying from a different cancer) 

    Hugs xxx

    Moomy

  • Sending ((hugs))  Broken heart

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Really sorry to hear this Moomy. Your family has certainly been through the mill with this horrible disease. 
    I was out with my old work colleagues last night and one of them had cancer a couple of years before me and we were saying how it’s just about luck. You’re unlucky when you get it and lucky if you survive it. Another work colleagues wife has been told she probably won’t make it beyond Christmas because of it, she’s mid 40’s and has always looked after herself. 
    I honestly hate this horrible disease and the misery it puts people and their families through and that’s even those of us who are the lucky ones. 
    Sending hugs to all your family. 

  • Belated rebirthdays Mike!

    Paul

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