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)
It sounds like a great experience and it's only the musician that will notice the 'bum notes'
I played Double Bass in my early years then we could not afford one after school so had to give it up :( Our school music teacher took us to see Yehudi Menuhin playing a Bach Violin Concerto. The teacher gave us all a score to follow and said pick out the notes his missed ;) I gave up after 5mins and just was captivated by the sound and the skill. One lad (the only one that had followed the score) at the end announced 'he missed three notes!!' ......... he never watched him!!!!!!! :(
Big warm and encouraging ((hugs)) to her immune system xx
Ah ((hugs)) to your lass and it goes to show how fragile the system is post treatment. All power to her team to keep her 100%.
I was to see my GP today (I go every 6 weeks). She is my new GP after my GP of 27 year retired but he had done a good handover to her and it great that she comes in having spent some time in Heamatology and SCT so totally gets me.
I had a tummy/sick bug start of last week and it took 3/4 days to get through it, my wife was up and running after 24hrs it just shows how fragile we can be.
This is on top of what you are dealing with moomy.... big, but gentle ((hugs)) all round.
My team are still tying to get me off my two remaining antibiotics but my blood tests always say no :(
I will be very interested to see how she gets on with the Penicillin test as I turn red and itchy with it so its a no go but my consultant said that down the line it would be worth testing me as my brother is not allergic to Penicillin and my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor :)
Tessa you are doing amazing ((hugs))
