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)
Good to hear from you moomy and good to hear daughter is doing good. The post SCT journey, even years on throws up bumps in the road.
I had a heart-attack back in mid April all connected to the after effects I had to the Melphalan.
The family all meet up in York for a long awaited meet up…… I had some shoulder pain on the Monday….. but I often have this sleeping in a different bed but the pain stuck around.
We got home on the Thursday and a few hours later the pain went into my chest, down my arms and legs and breathlessness.
Straight to A&E and was stabilised quickly. It was the Easter Weekend so nothing could be done, but they would fly me to Glasgow or Aberdeen if required but first thing Monday I had two stents put in and home on Tuesday.
I have to say that for a good time I had been having slight breathlessness when weeding the garden but it was always put down to my Asbestosis.
Had a heart scan back in December and nothing showed up…… but within a week I was fully recovered and the breathlessness is gone - the good old NHS does it again.
Take care ((hugs))
Some families unfortunately collect more than their fair share of challenges. Yes I did know about your hubs.
You will do fine in the Moho…… could I see you doing the North Coast 500?…… mind you, we went over to the West Coast for an over night get away and honestly 2 out of every 3 vehicles were motorhomes…… some were massive…. on our single track roads!!!!!
Have an enjoyable time away.
My chimerism sat at the mid 50s for two years before starting to climb to 100%. I have talked with others who’s chimerism has stayed at 80-90% for years and we’re still discharged from their team and yes others like yourself where there is a drop years in - this is SCT for you…… but if your team are not that concerned then that is a good sign 
Great that you are getting in with life Mark.
My chimerism was checked every now and then up to the point I was discharged 3 years after my second Allo.
I have a yearly ‘late effects’ call with a SCT specialist nurse (full bloods done before the call) and I did ask her about a Chimerism test…… “By now there is no point, your bone marrow is what it’s going to be and your chimerism has found it’s level…… if there were any big problems you would most likely be presenting with the same symptoms before your diagnosis”
Well done Leeds 
