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)
Great reflective words Greg........ When my mind starts to wonder I look at the pictures of my four Granddaughters and it brings my mind in to line with 'its great to be in the moment'
Moomy, pity about her pulling out of work :(
My team have said that if I could be open to being on Penicillin it would make the winters a lot better.
The one thing I have not picked up from my brother post SCT is his hobby of keeping pigeons :) :) :)
Moomy, now this came direct from the SCT staff. A lady SCTite was a few days post her Allo and she started complaining about the smell of burning.This went on for a couple of days but as you expect the hospital was not burning down and no one had burned the toast ;)
Later on during the send day the staff were looking through her file and looked at the details of the Ladies donor, he was German and he was a Fire Fighter !!!!!!!!!!!!!!!!!!
Ah Sue this is a great post as it does being the positives clearly into focus when looking at SCT.
Enjoy your holidays xx
Hi Sue, the sun is out up in The Highlands for a change ;)
I have taken a note of the Sun Cream as I will have to go get some as for the first time since May 2013 my team are allowing me/us out of the UK to find some heat and sun so our first journey is Madeira.
But I have to be very careful due to the 16+ years skin treatments and the 45 sessions of radio therapy but I will look just like a local as I won't go around with the rolled up trousers, string vest and hanky on my head ;) ;) ;)
