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)
Such an interesting subject.
Following my second Allo I was referred to a dietitian and she was great. I meet her the first week I was home from Glasgow and every three weeks for 3-4 months. We went through the strategies we should look at to keep my food intake at a good level during the months I just did not want to eat and to help put some weight back on.
The one thing she said was to have 2 eggs every day, so I had two scrambled eggs with cheese every morning for the first 3 months and even now 27-28 months on I still on the whole have two boiled eggs even morning as she said it was one sure way of getting a daily protein fix.
This is from one of the info sheets she gave me:
Your body uses amino acids found in dietary proteins to help build proteins within your body - including proteins that help make up your immune system. For example, immunoglobulins - also called antibodies - are proteins that circulate in your blood and make up key components of a strong immune system. Proteins are also part of antibodies, interferon and complement proteins that support immune system cells or attack viruses, bacteria or other foreign substances in your body.
Now I don’t understand every thing in that ;) but I do see the importance of protein in our diets and she told us that we need 15 - 20% protein every day to help our White Blood cells and therefor our immune system.
Hi my friend good to hear from you. You are doing some great work in the ‘Incurables’ Just got a bottle of 12 year old Singleton of Dufftown Single Malt so I will raise a glass for you tonight :)
Have a great weekend everyone, the sun is out in the Highlands but snow is on its way AGAIN ;)
Ah moomy this is amazing. I am so happy for your lass as this is a further mile stone in her post treatment journey. Its been a long road for all the family and to see and hear this will have given you all goose bumps and a little tear in the eye xXx
