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.

There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years

My consultant gave me this basic percentage 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 prepare 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 recovery time-line is about 6 months with your recovery improving about 10-15% per month post SCT

This is an average time-line….. with general acceptance that when in the hospital going through the SCT process we are physically at about 50%…… any less would indicated some comorbidity issues like pre-existing health conditions that may reduce the 50% starting point and possibly add a month or so onto the recovery end…..

For example I have Asbestosis so this was looked at very closely and due to my prognosis was seen as an accepted comorbidity……  so I went back a good 10%…… other issues could be blood cancer type specifics, genetics…..

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)

  • Sounds a great plan all round Sue and look at you the Olive magnate Joy so what do  you do with your harvest?

    The flying thing is a challenge atm. 3 of our 4 granddaughters now live down in Surrey and we would normally fly Inverness to Gatwick. But we actually drove down a few weeks ago and stayed for a week, it was so good to be around when they went back to school and the 10hr drive was far better then I thought it would be.

    Stay safe and enjoy life.

    Mike

    Cant resist this picture Heart eyes

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Gorgeous . I miss the twins they are so funny can’t believe they are 7 at Christmas, where does time go.

    The olives will be pressed into Virgin Olive oil hopefully they can be cold pressed which is even better a couple of friends are coming to help us as we don’t wait until they drop to the ground, Chris will go up with his chain saw and cut the trees branches then we pick them off and put them onto a big net, remove most of the leaves then sack them up. Our neighbours from the Isle of Man arrive late this evening but are going to isolate , I can speak over the fence.

    im lucky as scattered around are people I knew before we came here my best friend lives 800 metres in front and an 85 year old lady from my home town whose husband gave us Greek lessons in the U.K. and here . So today I am making pies for Them both. You can take the girl out of Lancashire , but you can’t take Lancashire out of the girl lol.

    My friend had two teeth knocked out last week with a golf club,  he numbed the pain with a bottle of good Whiskey!

  • Oh sounds great Sue. A good single malt indeed has amazing healing properties.

    Do you then sell the olive oil? I am obviously totally ignorant as to how much oil you will get Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Today is daughters 9th Re-Birthday! 
    she was away camping over the weekend in the lower Peak District, the pup walked in cow pats and then tried to eat one! He promptly had a bath and no kisses from mum!!!!
    Hugs xxx

    Moomy

  • , happy 8th to your lass and a great place to to celebrate, cow pats can be fascinating for dogs but do come with ‘extras’ Nauseated face

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you, she had a good day I understand, I hadn’t found a ‘9’ card but then I hadn’t been shopping for one! Will however, look for a ‘10’ for next year when she will get into double figures! Normally at this stage I guess she’d be discharged as ‘cured’ but of course her care is ongoing due to her low immune levels and high ferritin levels. She will be continuing shielding, especially when viral infection rates are rising. I saw a photo from Soho for last evening and it looked really crowded; we are not wondering WHY infection rates are rising! 
    stay safe, all

    Hugs xxx

    Moomy

  • 9th not 8th wow that was a quick year Joy

    On the whole, the age group where infection is rising in are basically ‘safe’ or they think this, but it’s the people around the edges, who are being very carful that are at most risk...... and as more restrictions come in the same age group will complain as their rights are being taken away....... This could be a long winter on many levels

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi guys. 
    9 years is certainly a cause for celebrations. I expect there has been numerous occasions when none of you dare dream of this so a massive well done to your daughter, an inspiration for anyone facing uncertain times and shows why we should never stop believing. 

    Regards

    Mark x

  • Bless the girl, she never forgets the help she had and made sure she repeated it by staying to take care for me (and disabled hubs) a couple of years back with my cancer op. 
    sadly it looks as if she will remain using her home recording studio rather than getting back to gigs which I know she misses. 
    Hugs xxx

    Moomy

  • With all the news surfacing about students being locked in to self isolate I’m so glad that daughter is teaching her Conservatoire students online still! 
    Hugs xxx

    Moomy