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)

  • Good afternoon everyone.

    Its exactly six months today I had my bone marrow transplant

    . Its been quite a journey with an extended stay in hospital and some time in critical care but I emerged after 6 weeks and came home.

    I cannot deny its been hard ,in the first few days at home I went to bed hoping not to wake up in the morning but as days progressed I started to feel a little better, 

    On the whole I have definately had more ups than downs with only one week in my local hospital with high temperatures which wasnt too bad. 

    I am high dose steroids for mild GVHD of the gut which seem to be controlling it and I am being tapered off slowly.

    I try to keep busy most days ,food shopping and cooking our meals and also try to walk a little.

    This week i have felt the best since transplant and have walked 3 miles every day, maybe its the steroids or hopefully Im over the worst.

    I know theres still a long  way to go but I think its as good as it gets so far.xx

    Mark

  • Hi Mark, 

    your recovery rate sounds good, walking is fantastically good for building stamina after an allo, so try to keep it up, weather permitting! I’ve tried to build that into my recovery after mastectomy and it definitely helps! 

    hugs xx

    Moomy

  • Great update Mark, six months is a good landmark. My recovery was slow, I didn’t feel like I was making any sort of progress until after about 8 months. But I kept telling myself each day was one day closer to where I wanted to be, and eventually I got there.

    Here’s hoping things continue to go well for you Mark,

    Greg

  • Bump - what is life like after Stem Cell Transplant?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Marvellous had auto in 2017 wasn’t easy but now I’m ok , get tired on the odd occasion, mostly positive about life , weight now going on after 2 years. Normal life as before I was diagnosed.

    zumba and yoga tomorrow, day off Saturday.  Plan ahead a lot for holidays and playing golf where it’s warm. Luckily hubby and I are retired.

    It took a while for my bones not to feel sore. 

    Not caught a cold for 6 months! Fingers crossed , just suffering from prickly heat on my arms and face looks like I’m going to have to find a very high factor sun screen.

    Fingers still a bit fizzy at the ends and a couple of toes that sometimes feel numb but I’m good and happy and positive.

    had flu and pneumonia jabs this winter.
    sue 

  • Wow mark !  3 miles walking that’s amazing!!! Soon you’ll be back to taking a (slow)jog hopefully 

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

  • Bump for those going through SCT and looking at what the other side looks like?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Daughter’s latest (well, apart from local radio station broadcasts, that is) news is that yet again they are jabbing her with I/G’s around 3 weekly, and will start ‘bleeding ‘ her once they end in around April, to reduce those ferritin levels, no good doing it now as they will of course remove I/G’s and they don’t want to do that! So it seems her regime is still regular hospital visits.

    but she’s been booked for orchestra gigs, at present Bournemouth, London Phil later in the month. She has a few voice over projects too, plus regular studio recording sessions which she does at home (she has her own studio with all the gear for music and voice recordings, all she has to do is walk up the garden to it!) 

    hugs xxx

    Moomy

  • Long phone chat with daughter while she was driving from Poole to Exeter this evening after her gig, she had just a few notes in the first piece of the concert (live on Radio 3) and the same tomorrow evening then she will just drive home. (The typical mobile life of a freelancer!) she was bored so it’s a chat with Mum to while away the time on quiet roads (hands free of course) and a talk about what she’s been doing, her future plans with her students at Trinity and the contrast in facilities from an old Naval college (Greenwich, which is where Trinity College of Music is housed) and her other teaching job at Royal Northern College of Music in Manchester, which of course has properly planned, soundproofed facilities. She’s only just started there this academic year, they head-hunted her! It’s a big contrast!

    Also chatted about the one to one puppy training they are sorting for the 10 month old puppy. It’s difficult to commit to regular classes so this way works better for them. 

    Good to hear from her and hear about future plans, that’s something that for years she didn’t feel able to do as of course for some years she was facing dying, and found forward planning really tough. That was something she really needed counselling help for, accepting that when we are able, we forward plan, knowing that anything might happen to interrupt that, but knowing that forward planning for all of us is needed to get a sense of order and purpose. 

    Philosophical thoughts!

    Hugs xxx

    Moomy

  • Good to hear she is busy with what she loves to do...... but going by our youngest daughters experience in puppy training.....it looks like a 'great mystery' to me.

    Forward planing? We are further down the line then some of the others who will come on to this thread.

    Back 6 years ago, like you and your daughter, its was "putting our affairs in order" time............ yes, this was done but now sits on a higher shelf in our pigeon holes of life..... we can still see it but it would take some effort to reach it and take it down and fret over it...... two does the passing of time change things?

    As time has went past our family have moved on from taking every day at a time, we are now looking forward more and planning stuff to do that we were robbed from doing.

    Youngest daughter and family moved back from just beside Birmingham and started all over again in the Highlands as they realised that they were living in a rat-race and they were not content..........now two years on they have made a new life, new friends and two thriving businesses. Cancer in the family does effect all the family and for us all it made us all stop and think.

    But oldest daughter and family have moved to Surray in the next part of conquering the UK with their business - as they had moved on from being 'close' just in case.

    We are not spring chickens (sorry) so we don't look through the eyes of someone 20, 30 even 40 years younger then us....... so the future looks so different from the two prospectives.

    "Sense of order and purpose"........ for me I think that if you go to bed and you have been happy with the day past......and when you wake up the next morning with the excitement that it is a new day - this is a good place to start to build the new experiences and facets of life on.

    Not very Philosophical but the thoughts of a 64 something still coming to terms with having been given a second or even third chance at the living thing

    ((hugs)) all round...... and a great question moomy.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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