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)
I have been thinking about you moomy, it’s a hard journey to navigate. Sending ((hugs))
We were just on the edge of the storm but our old home towns on the North East, just above Aberdeen were hit rather badly with some still with no power 6 days on.
Your family have had a hard time, we have in the past few months set up a group for blood cancer conditions like ET MDS/MPN/ET/PV/myelofibrosis (MF) and it is unfortunately slowly collecting members.
((hugs))
I keep an eye open for folks posting in the ET (etc) group as some folks end up going down the SCT route.
We did have high-ish winds but it was the first of our snow especially out with our daughter above Loch Ness so got our snow tyres up on the car on Monday so all ready for the winter months.
What are you doing for Christmas as it is going to be challenging, we were the same last Christmas as my mum passed away a month before Christmas ((hugs))
Our daughter stays above the snow line so have snow for a good period of the winter and we are out a few times a week and they stay up a steep hill so they are essential.
Older daughter and family are coming up from Surrey so it will be a full house snd great fun 
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I was just reading that the antiviral treatment is now available in Scotland so good news.
((hugs))
