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)
Even post SCT what we eat can be an issue so I thought I would post the info I was given by my dietitian at my SCT centre including some info from the Macmillan site.
During and after Chemo, Radiotherapy and SCT there is an increased risk of infection from food. This is because these treatments can cause neutropenia (a decrease in white blood cells that fight off infections).
Food safety is the very important so are are some tips for you.
Shop smart – check foods are in date.
Make sure you get the chilled and frozen foods home quickly.
Prepare and clean up - Clean hands and the kitchen. Use separate chopping boards for raw and ready to eat foods.
Prevent cross-contamination - Separate raw meats, chicken, seafood from ready to eat foods in the fridge.
Cook food properly, piping hot throughout.
ONLY eat out in clean places and make sure her food is hot. Stay away from Take Away foods as you have no idea how it is being prepaired.
Some foods have a higher risk of becoming tainted with bacteria so here are some foods you may want to avoid.
Avoid
Raw or undercooked meat, chicken, seafood
Unpasteurised or raw milk
Raw or undercooked eggs
Unwashed and pealed fresh fruit and vegetables
Soft cheeses made from unpasteurised milk
Uncovered deli meats
Cold rice
Eat
Meat, chicken and seafood cooked through
Pasteurised milk
Cooked eggs with a firm yolk
Washed and peal fresh or cooked fruit and vegetables
Hard cheese or soft cheese made from pasteurised milk
Vacuum-packs meat, ham
Re-heat cold rice till it is steaming all the way through.
Stem Cell Transplant patients may need to follow more strict diet guidelines and each hospital will have their own guidelines.
The reason why we advise avoiding these no go foods is to reduce the risk of getting an infection or food poisoning. Chemo, Radiotherapy and SCT can greatly reduce your immune system.
We would always recommend not eating any of the Aviod foods straight away and would always suggest that you remain on the Clean Diet until you are told by your team that it's ok to eat these foods again. This time frame can be totally different between transplant centres.
An interesting and very helpful thread this is turning out to be.
Party Food :(
6 months post SCT and my appetite was back and I eating for Scotland. We were at a friends big birthday celebration. Mini Sausage rolls 'never again' I said. A few months later another big birthday and a table of M&S party selection - what could be wrong with M&S Sandwiches or Asian style chicken lollipops or chicken Kievs or mini toad-in-the hole?
Well nothing if it is put straight in a cool bag at M&S then put straight in the fridge and only taken out a few minutes before time to eat.
The reality was it was all in a plastic bag that had been left in the boot of a car in a very warm day for a few hours then put straight on the table an hour before the party........... bacteria factory.
I was soooo bad for a few days after but all of the others did ok but my system could not take it.
So since then I have not touched any buffet food again - ever :)
