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)
Yes Tessa see what the hospital comes back with as you are still on that hill climb....... don't do what I did, I was given the all clear from my dietitian and went straight out and had mussels and soft cheese after my first Allo ;) but as I was not ratting much after Allo number 2 it was months before I was faced with these choices.
At a Highland Wedding up in Royal Dornoch - The kilt and 30 degrees heat does not mix 
Hi GDFB and a warm welcome to the Stem Cell Community but always sorry to see folks finding us. I see you have already connected with our Greg over in the MM forum so if we can help just give us a shout.
A SCT is a remarkable but at times challenging journey. My first Allograft (Allo for short) SCT was with cells from my brother, that was back in mid 2014 but that did not take so went back in October 2015 for a second go at it......... it's a long story that can be seen in my profile but jump to the ending I have now been in remission for two year and this is remarkable as I was first diagnosed way back in 1999.......you getting the smile.
If you do go on the SCT Rollercoster or have specific questions then I would always recommend you hit the 'Start a Discussion' tab at the top and set up new threads as this will keep your support in one place.
I have not heard from my friend for well over 5-6 months so I do hope all is well with him as I still have a glass of Single Malt on the table ready for him.
Being in Inverness we see everyone going on or returning from the NC500.... we did it years back when it was not a thing.... and when it was not so popular so let's look for you to do your journey at some point in time.
I will keep an eye open for you in the SCT Forum and as always you will find the folks very helpful as they do 'get' the journey.
