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)
Yes the lack of peoples understanding and what to say 
My GP of many years (now unfortunately retired) would arrange for me to come in past and we would chat about what was going on pre treatments, during treatments and post treatments as he wanted to know and also inform his staff.
Our practice is a University Teaching Practice so we get a lot of students so I would get the call to come in to see if the students could figure out what condition zi had and for them to better understand blood cancer in general.
This past year I have done a few sessions on ‘lived experience’ with our 9 new SCN support team in the hospital in Inverness. The team work along with our SCNs and ensure that clear and prompt communication is happening, this has released the SCNs to be far more effective.
I was also in London last month speaking at an event put on by a large worldwide pharmaceutical company who specifically develop treatments for blood cancers and SCT…… they did a LONG Q&A session focusing on the lived experience of living with a blood cancers especially as I have one of the rare types.
I also helped the same company last year on a full day of TV and Radio interviews around raising the profile of rare blood cancers.
It’s all about raising the awareness of blood cancers
Hi moomy I actually ‘follow’ her and I love her play on words in her tracks 
Bumping for those going through SCT.
