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)
Hi Tessa, great up date from you.
I am in the same position as you with regards to re-vaccination. I am on one antibiotic for life (Clarithromycin) and keep a stock of Aciclovir to use at the first signs of Shingles.
My new GP has also given me a course of antibiotics to be used if I develop chest infections as over the past three winters I have had Pneumonia a number of times.
We also paid for our 4 granddaughter to have extra vaccinations to help cover as much of the bases.
The Asthma thing is interesting, I have had Asthma most of my life and now it’s all but gone completely.
My brother was my donor and he has no asthma and is a long time pigeon racer - my team did say that this may well happen.
Went to my yearly asthma clinic a few weeks back and my peak flow is better than it’s ever been. We do also put this down to me being more active and exercising regularly.
Haven’t found the hay fever to be a problem so far over last years but we will see.
During the years of skin treatments due to my Lymphoma being on the skin I was using a big tube of Diprobase every week. I actually used it to shave with 
My Dermatologist moved me away from Diprobase onto Hydramal as it was much better and had a soothing qualities.
You are doing great Tessa x
