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)
Bump - what is life like after Stem Cell Transplant?
Bump for those going through SCT and looking at what the other side looks like?
Good to hear she is busy with what she loves to do...... but going by our youngest daughters experience in puppy training.....it looks like a 'great mystery' to me.
Forward planing? We are further down the line then some of the others who will come on to this thread.
Back 6 years ago, like you and your daughter, its was "putting our affairs in order" time............ yes, this was done but now sits on a higher shelf in our pigeon holes of life..... we can still see it but it would take some effort to reach it and take it down and fret over it...... two does the passing of time change things?
As time has went past our family have moved on from taking every day at a time, we are now looking forward more and planning stuff to do that we were robbed from doing.
Youngest daughter and family moved back from just beside Birmingham and started all over again in the Highlands as they realised that they were living in a rat-race and they were not content..........now two years on they have made a new life, new friends and two thriving businesses. Cancer in the family does effect all the family and for us all it made us all stop and think.
But oldest daughter and family have moved to Surray in the next part of conquering the UK with their business - as they had moved on from being 'close' just in case.
We are not spring chickens (sorry) so we don't look through the eyes of someone 20, 30 even 40 years younger then us....... so the future looks so different from the two prospectives.
"Sense of order and purpose"........ for me I think that if you go to bed and you have been happy with the day past......and when you wake up the next morning with the excitement that it is a new day - this is a good place to start to build the new experiences and facets of life on.
Not very Philosophical but the thoughts of a 64 something still coming to terms with having been given a second or even third chance at the living thing
((hugs)) all round...... and a great question moomy.
