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)
....... back on the infection front.
Ice cream cones :( the very first time I had one I forgot to hold a cone in a napkin and caught a bug from the bacteria on my hands holding to bottom of the cone after eating it - the first time!!
Granddaughters (children) we have four 5, 3, 2, and 1 :) In the early days we were only seeing them occasionally so we we're slow in getting into a rhythm with disinfecting surfaces where they had put their hands and that was everywhere ;)
Family and friends visiting - this can be such a blessing or just a nightmare. At the start of our marathon we made a conscious decision to take ALL our family and friends with us so we openly posted on our journey on FaceBook, Mike's Journey - WhatsApp, email etc and made it very clear about the rules of visiting the house. We have lots of friends with hordes of children so they all did great in keeping everything under control to the point we ended asking folks to visit as they did become paranoid they would be taking a bug in.
During my two transplants we were 10 hours round trip away from home for over 11-12 weeks. The journey took us through one of the main snow points in Scotland so I only had two people visit me in the unit so this was great in keeping issues under control but not great for my wife. But she did have folks do the journey a number of times not to see me but to take her out for treats :)
When you get to that point post SCT where you just wanting to go out for a meal we just did it. Keep clear of a greasy spoon ;) just go to places that have a good reputation. We started by going at 2-3.00pm during the week to some major food outlets and found ourself in the restaurant on our own. When my appetite was still fragile I just had a starter but getting out did help…….. but watch when you go to the toilets ;)
As my counts went up and my Immunosuppressants were being reduced we became more daring but not foolhardy. But it was a year before I had any Take Way food but no rice as we did that ourselves.
Its important to see these times as not being a reason to beat yourself up, feel disappointed and have a pity me party. But always look at it as another positive step forward and something to plan again.
So I am 27 months post SCT and I have just come off Septrin on Monday. Acyclovir the end of March (but must have a stash if I get Shingles). Will be on Adcal and Clarithromycin forever.
Hi Tessa, good to hear from you.
My gums are tender but not reseeding :( Went to the dentist for the first time in over 5 years (apart from my pre SCT checks) and was very surprised that I only need a chipped crown done, one thats needing some crown work and one filling. As I suffer from very bad Odontophobia I was rather happy with my report but I did say to my dentist 'I would rather go through another Allo SCT then get my teeth done'........... I do need some physiological help if I think that ;)
