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)

  • FormerMember
    FormerMember in reply to Thehighlander

    This is all such great stuff to read!! so many people doing well after a stem cell transplant. I will be doing mine most likely in April. I’m trying not to think to much of it now till it gets closer and I just hope it goes smoothly for me. My doctor said me being 28 is on my side and usually can bounce back pretty quickly but then again everyone is different. 

    Hope we all can remain cancer free after this & just live our life’s. I know I wanna be cancer free and enjoy life without constant worry. Any tips on what to bring in the hospital? 

  • Hi  check out this link to a thread about this very subject :)

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    No, no Highlander. Drive from Northern Ireland to Aberdeen and back via Inverness  (and possibly the North Coast 500) . Double brain transplant? lol. Nah, just think how much of beautiful Scotland I'd see (beyond Glasgow). Oh dear that's me in trouble; )

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Lacie 

    So nice to meet you and glad you're enjoying this group. I'd like to wish you all the best for your op in April. I haven't been in that situation so I can't advise, except if I think back to spells in hospital I've had recently due to a heart attack and then heart surgery and more recently an elbow operation which was the most painful, and still is. 

    I would have brought a novel, but never read it because there is always something happening. A magazine or two on gardening did me. I could dip in and out of it frequently. I haven't looked at what Highlander has suggested but he's the wise old owl of a few groups so I'd have great faith in his suggestions. 

    As for me, if you have a glance at my profile, you'll see that it's not on the table for me, however what there is, is Hope! 

    Good luck Lacie, I'll be hoping to hear from you again. 

  • FormerMember
    FormerMember in reply to moomy

    Absolutely Moomy, I'm so particular with grammar and spelling so when I look at my post and there are errors, I cringe and wonder if there's a way to edit my post but I don't think there is. I also wonder what people think of me spelling something wrongly or part of a word missing. All the same, a part of me is longing to write that I've had an allo, no matter what technology does to it. 

    Take care Moomy xx 

  • Hi Hope, when in your post on the thread you will see 'More' at the bottom of your post next to 'Alert Moderator' the 'Edit' is in this section, I do use it a lot ;)

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    See. You ARE the wise old owl  ;) Thank you 

  • Hi Hope, 

    One helpful gem is this; you cannot proofread your own work!!!!!

    When you post and realise it doesn’t look right and you spot those mistakes, then use the ‘more’ to find ‘edit’ as advised by Mike.

    I’m well qualified as a proof reader, well into a friend’s 4th book, finding one mistake on average, on every page. He says I’m his fastest and possibly most accurate of his 5 proofreaders (claim to fame here, in retirement it’s good to try something new!) 

    Hugs xxx

    Moomy

  • If I remember, I use the preview tab at the top but often as not it makes no difference ;)

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Yes, Mike, as I said before, you can’t proofread your own work! 

    Hubs was a Senior Editor before retiring, and was told this as soon as he began as a technical author, he ended up in charge of all technical publications for General Motors Europe, so knew a thing or two! (Was head hunted in retirement but after doing a bit for a year, realised the taxman was far more of a worry so got out!) 

    Hugs xxx

    Moomy