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)

  • Yesterday was Markyflem’s real birthday; Happy Birthday Mark! 

    Hope the group is quiet because all is well?

    Hugs xxx

    Moomy

  • It’s my 4th Remission Birthday this Saturday and the granddaughters see it as a reason for Birthday 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Happy Remission Birthday for Saturday, Mike! Every excuse for a Birthday is a good one!!!

    Hugs xxx

    Moomy

  • Hi Moomy,

    Thank you for the birthday message. I had a lovely weekend if not a little too much partying on Saturday. As a result I wasn’t feeling too great on my birthday on Sunday but we did manage a nice walk along the beach after a full english on the marina to help cure my self inflicted headache. 
    Im certainly doing a lot better this year than last. I was in hospital until the evening of my birthday last year after becoming ill but was discharged on the 13th only to be re-admitted on the 15th seriously poorly with what we now know developed into swelling on my brain and my pituitary gland failing. 
    Im generally doing well now and returned to work from furlough in July. I still have issues with low energy due to the pituitary gland but it’s something I’m learning to live with. My endocrine consultant is happy with my progress but still wants to do another MRI on my brain just to check everything over again as on my last scan there was still a very small amount of swelling present. I did ask him if I could be transferred to Exeter now but he wants to keep an eye on me for another 6-8 months or so before letting me do this. I think I’m a bit of a novelty to him! 
    My haematology consultant is happy also and my appointments have been moved to every 2 months so over all things are good. 
    One of the best things about the last few months is seeing my family and especially my children happier and more relaxed with my situation. 
    After 2 solid years of setbacks and almost witnessing me die, we are all looking forward and enjoying ourselves so much more. That for me is the best birthday present of all. 
    Regards

    Mark x

  • Happy Birthday for this Saturday Mike. 
    I will celebrate for you. Beer

  • Great to hear from you Mark....... the post SCT journey is indeed full of twists and turns but as time goes past the road gets less stressful and the good days far outweigh the bad.

    Keep well and enjoy life.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi yesterday was my stem cells 3rd Birthday, I’m now on Corfu enjoying the sun and playing golf 7 days a week and for time being staying here , thanks for all your support in these last few years Sue 

  • Happy birthday 3rd birthday Sue and good to hear from you and I am not that jealous Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Happy 3rd Re-Birthday Sue! 
    glad to hear you’re doing well!

    on the 21st it will be daughters 9th Re-Birthday! must send her a card! 
    Hugs xxx

    Moomy

  • Oh Moomy that’s wonderful Happy 9th Birthday to her well done!

    Highlander no golf today we’ve had our first rain since May! I’m not digging the waterproofs out!

    i am so lucky my consultant is Greek back in U.K. , I’ve been locked down and tests have been done here for 4€ emailed to me within two hours forwarded to U.K. and the consultant has replied instantly with excellent.

    The one thing she has insisted that I do is drink fresh orange every morning not from a carton, only squeezed, I actually read about fresh orange so have been doing it for about two years now. I also have to take vitamin D even though I’m in the sunshine she says it’s not enough.

    touch wood I’ve not had a cold since January, I’m due my flu jab which in will have here on Corfu. I’m scared of flying home to U.K. we may come home by car if U.K. improves. We will see I’m safer here, our olive trees need harvesting too soon massive crop this year 46 trees to go at.

    Anyway wish everyone all the best and stay safe thank goodness for FaceTime I miss my family