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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
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 head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training. Her basic scale for classifying where I was on the recover journey was:
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.
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)
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Good idea, Mike.....
Whichever type of SCT you’ve been through, some or all of this will apply......
Feeling cold; you’ve probably been unable to eat as normal (that’s the chemo!) and you’ve lost head and body hair (they do help a bit to prevent heat loss) and you’ve also had a bit of chemo damage to your heat regulating system. It will improve! Wrap up as you feel you need, soft layers are best.
Lack of appetite; chemo affects it, hospital food will give everyone a downer! Plus you may have mouth sores that take time to heal. Give yourself time, it will improve!
Chemo brain; again it will improve but it is now medically recognised and has been given a long name, but it’s still chemo brain! Use diaries, lists, post-it notes, and ask that people text or email any arrangements and appointments.
Medication; especially following an allogeneic transplant, you’ll have half a roomful of this, take as and when advised, and be confident it will reduce!
Temperature; keep a check, if it goes up or even way down, give your team a phone call, especially if you feel unwell, they’d rather you phoned early than have a really poorly patient to deal with!
Exhaustion; that too will improve; give yourself the approval for naps as and when you need, especially after food or exercise or both! It’s actually proven that gentle exercise does, oddly, help recovery from chemo-induced exhaustion, potter around the house to start with, then if the weather is ok, your garden (but don’t yet do any work in it!) then work up to walking out, I suggest circular walks as if it gets too much, you can cut back home for feet up and a short nap!
See if your GP or a physio can point you to a longer term rehabilitation process, maybe a leisure centre near you has a programme you can join.
Mostly, give yourself a huge pat on the back for going through it and getting out the other side!
When in hospital over New Year I saw a poster saying:
Three weeks in bed can reduce your fitness levels the equivalent of ageing 30 years....... so I was 89 following my SCT ;)
Basically the muscle wastage in those three weeks can be considerable and can take years to rebuild. I am 26 months post transplant and I am still only about 80% back to my pre SCT abilities.
Try and keep active during SCT but especially after.
explains why i am shaky by the time i get upstairs
You know Yvonne apart from two steps at the front and back of our house we have no stairs. The first time (5 weeks post Allo) we went to visit our oldest daughter in Edinburgh and when we walked through the front door we say the all the stairs........ I looked at my wife and she just said 'figure it out' and she run up the stairs to see the 3 granddaughters :)
I tried a few steps but no chance, so on to hands and knees, the kids even came to the top of the stairs to cheer me on :) boy it was a hard weekend, I was also on walking sticks for the first 3/4 months so when we went home I had a session with a Cancer trained trainer, we got a low step up stool and used it every day. Also got some bungee keep-fit cords and handles and did them every day but it was sooooo hard work but it did work.
Keep on going it does get better.
daughter was in a wheelchair to get to the car from the hospital ward, it was simply far too far (though only a couple of minutes for us!)
She did manage a tiny walk into her small garden, leaning on my arm when I got her home from her auto, but slept solidly on the sofa after that and a snack, for a couple of hours, it had exhausted her!
After her allo she only went out of the house to get to the hospital by car for her clinics, at home her 8 stairs led to a half landing and there were three stairs from there and she couldn't even get to halfway without a rest. She only did the stairs twice a day as there was a loo down. It took quite a few weeks before she ventured outside, even then it was with an arm support from me.
Keep on trying, even when your legs get shaky they are building up a bit of strength again!
Hi I'm feeling better now on most days, though I cannot put any weight on, I'm eating better than I did and have more energy to get up those stairs. I've just tried one of the protein drinks they are just far too sweet for me so it's full milk and a banana smoothie. It's 122 days now post auto and at last my muscles don't feel as sore and my bones, I had my flu jab last week with no side effects. I had a blip this Saturday just gone when I couldn't keep my tablets or breakfast down and was visiting the bathroom quite often. My stomach would only settle after two large banana smoothies. I rested all day. It's 6 weeks since I had the same episode so they are getting longer in between ,hopefully they will disappear altogether.
Sunday was a different story I felt 100% better and toddled off at lunchtime to Zumba class. I was fine I've managed five classes now since mid December. I think this has helped the sore muscles as its been stretching them. I still listen to my body and how I feel so if I'm not up to it I don't go. I hope this bit of information is positive for some of you as I continue to move forward and recover, it's been a long journey I've had to be patient but it's been worth it Sue
am chuckling thinking about this ,, pity nobody got it on video catch !
I'm glad it's give you a chuckle Yvonne , how are you doing. I'm now also able to sleep in one set of pyjamas now and no builders hat so my thermostat must be improving. My friends find it funny that I've always wanted to lose a few pounds and now im moaning I'm too thin. For once I'm actually dissappointed that the scales haven't gone up. I suppose someday it will just happen like somebody posted a few days ago. Anyway take care Sue
having a chuckle here thinking of this .. pity nobody video it for the family album
i know exactly what you mean,, i really did need to lose 1 1/2 stone,, but not like this, with the haggard look, have check up.later and that’s putting me off eating more , knowing it’s going to be around the main topic of conversatiom ... ng tube has been mentioned ,, glad to hear life gets warmer,, we had artic blasts last night , and snow this morning ,day 41 today ,, so hopefully near halfway to feeling more energetic !
Comedy on grandad! ! You can do it! Good to hear you're doing well. Haven't heard from you for a while.
Do what makes you happy, don't give in.
Hi Hope, yes, remiss of me but life is getting ore busy as the more I recover.
I do follow the amazing work you are doing as your journey has, lets say, taken a few detours from the original posts a while back.
I still have that Single Malt in the cupboard.
Keep well my friend.
Hi Yvonne, obviously your eating something if it's only small so that must be a bonus, the GP gave me those protein drinks as well as food but I don't like them. I'm eating more than I did in hospital but it's not going on the hips yet, my skin hangs like old cinema curtains. The weather is bad here today sleet, snow , rain and it's cold. I've been out with my grandaughter today we went to the gym I exercised my arms a bit, I only stayed 20 mins then we went shopping. I've just eaten the most enormous cream cake with hubby at home.
I've just got a new appointment on Jan 29th to see the original consultant so I should get to know more hopefully how often I need to see her in the future. Those 41 days seem to have gone quickly and January seems to be disappearing quickly. Hope the appointment goes well.
Hi good to hear your recovering well after your recent stay in hospital.
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