Hey, still in hospital after having my SCT. Lying here thinking about when I’ll be able to do things for fun as in the cinema or theatre? Would they wait until I was past needing immunosuppressants for it to be safe or can a normal life be resumed once you are fit enough to enjoy it? I have the theatre booked at the end of October ( booked before I was diagnosed) I would love to go if I felt up to it but I don’t know if it’s aloud?? Still waiting to see how my body is going to take this transplant
Also worth mentioning I know I need to be carefull in big crowds for a while and obviously eating out in restaurants
Hello goody, I found this info on the Macmillan website which I thought you might find useful.
I would imagine it varies a great deal between patients and my approach would be if you feel up to doing something ask your doctor as they can be more flexible than you might think, depending on your bloods ect. If you don’t ask you don’t get is my mantra. How are you feeling at he moment.
Best wishes alfie
Hi Goody, I am glad you have had your SCT, but unfortunately if you are anything like me that is giving you loads of time for your mind to be going off in all directions. @Alfie has already given you good information and I honestly believe we are all very special individuals with differing backgrounds and medical histories and treatment programmes. But it sounds as if you have a very positive outlook which I am sure is a plus. I still carry wet wipes, some people have hand washes and sprays but how far can you take it. I always try to stand or sit on public transport etc facing the windows as far away from people as possible and I make people laugh when I tell them I stop breathing or breathe out if someone coughs or sneezes. I have to remember to start breathing again in due course. I do avoid food that isn’t cooked when eating out. I think the word sensible springs to mind and it sounds to me as if you are. Please keep posting how you are getting on.
Thank you for the useful link. Feel like all I did was look into everything before SCT and was worried to even think about a future now I can’t wait to start enjoying life again.
Yip that’s me …mind in all directions! I know I’ll have a phobia of people breathing near me now haha …it feels strange right now not kissing my hubby or mum but I don’t want to risk anything. I think I’ll save them all for my boys when I get to see them again! Those are cheeks I won’t be able to resist The idea of eating out is a scary one I don’t know when I’ll feel ready for that. I will discuss with my team re days out. Thanks again
Hi I went on a cruise 5 months after my stem cell transplant. Before that I certainly went out and about, albeit I was weak and used a wheelchair some of the time. I think if you are having your transplant now then in three months time you should be fine to go to the theatre.
It is important to have things to look forward to and your consultant can advise when it is safe to mix with other people.
Congratulations on finding a donor and now time to start your next chapter. Go out. Get fresh air and do things you love and that make you happy. If you feel good, make the most of it, but just do it a wee bit more slowly and don’t stress if you can only last for 15.mins.
Yes, keep clear of people with cold etc…but to be honest you do need to live and become accustomed to sneezes etc to help build your new immune system. So balance.
I’m now 3.5 years out from a SCT and within 6 months was flying to Spain for a weeks holiday. This (travel) was my motivation and my desire to go to new places has fully underpinned my recovery. That, plus pushing myself a little every day. You are stronger than youd ever imagine - use your theatre tickets as one of your motivators.
Good luck xx
Hi Goody, I had a SCT 3 1/2 years ago and am currently good.
Recovery takes a while, and as you know everyone is different in how their body responds. I found the first month or two hard going, with lots of travel to hospital visits and time in the day unit, combined with fatigue, but gradually managed to do more and more.
Baby steps at first, but gently building up is probably the best way to go. Having a couple of things to look forward to like theatre or cinema is a great idea, and at the same time keeping things flexible so you can make the best of how you feel on any given day. On a practical note I just carried a bottle of hand gel everywhere and encouraged visitors but kept hand gel for them to use next to the front door, especially in winter!
It’s not an easy journey, and there are setbacks, but it is worth it. I found a new job 15 months after my transplant, so am able to support my family again, and was able to meet my donor last year, which was a real ‘high’ for me (and him!).
It sounds like you are making a good recovery from your SCT @Goody, which is great, and that theatre trip will be possible. There is a lot of good advice above. One thing that your team will advise about are immunisations. As I had my SCT the year swine flu hit (and I had a scare a few days post RT) I had 2 doses of vaccine and a course of tamiflu. Flu vaccines are annual event.Some are also given childhood vaccines too. Otherwise I started going out to supermarket and pub lunches during quieter times and gradually built up immunity. 6 weeks after SCT we stayed in a hotel nearby for our 30th wedding anniversary. Just take things at your speed, and rest when you need to. Best wishes x
Hi Aileen it is great to have you on our community forum and I can tell from your post that you will be a useful source of information and support to others but don’t forget the forum is there for you to use as well. Take care.
Thanks Joan, a cruise 5 months after is amazing. I definitely need fun things to focus on! Mucositis kicked in today
Thanks! Glad to hear you were doing so well 6 months post SCT. Great to hear from people who are years out from transplant too and doing well.
You met your donor, that must have been an amazing feeling to thank them in person . I can’t wait to write to mine. I think I will tell my friend the theatre is on! She knows I can cancel last minute so she does have her mum on stand by if I can’t make it. Thanks!
Glad to hear you and hubby got away for your anniversary. That must have felt great even with it being local. I think our first weekend will be a local one too. Mucositis started today but Glasgow team are great and keeping me topped up with pain meds and anything icey!
Thanks Erica. Happy to add a wee bit of my experience if I can be of help. X
Dear Aileen, it’s great to hear you are enjoying life, it’s just what goody needs to hear right now. I have a friend at clinic who had her first holiday since sct and I know it was something that kept her motivated during treatment and recovery. It’s a sign things are moving in the right direction.
Wow. If you are in the Beatson @Goody you are in great hands. They did my transplant and were the best!
Two of our Ambassadors had thoughts they wanted to share on this topic;
“I had my own stem cells transplanted many years ago and I am now in my 12th year of remission. I looked upon those cells as my new best friends and although things were hard at the time they were the beginning of the road to recovery. Take each day as it comes and tick it off on a calendar.”
“Life can begin as soon as those cells have been infused. Make every day count.”
I’m at the new transplant ward Queen Elizabeth Glasgow, had my radiotherapy at the beatson though. Everyone been amazing