Original diagnosis Acute Myeloid Leukaemia with Myelodysplastic syndrome (MDS) related changes
Last Thursday, I was officially a year post transplant. I just thought I would share the news on here to give anyone hope that is pre transplant, going through a transplant or is just post transplant.
The biggest thing I found was eating post transplant due to the awful taste that most foods had. This was very trial and error for a few weeks finding the foods that I could eat. I bought things and after one mouthful it went in the bin. Eventually I found things I liked and stuck with them just to get calories in. Around the 100 day mark I started to eat more varied foods and as time went on taste improved greatly and now I pretty much enjoy everything that I did pre transplant.
Around the 100 day mark, I found that I was energetic and this was probably due to consuming more food. Again this improved with time and I am now riding my bike again on a regular basis for up to 50 miles at a time.
During my chemo and after the transplant I studied and passed exams that has allowed me to start my own business. Having the freedom to take days off and generally not being tied to desk 8 hours a day has been a massive help both physically and mentally. I know not everyone has this opportunity but if you are going back to work make sure you employer has a full understanding of what issues and struggles you may have in undertaking your role.
Day to day now I am doing normal stuff and don’t have any issues mixing with people or doing the things that I want to. Basically I have the life is too short attitude.
Ferritin levels are high due to over 100 blood transfusions pre transplant, initially I was having venesections every 2 weeks this is now once a month and something I have just accepted as normal life for the time being.
I speak to the medical team about every 8 weeks now and they have told me I will continue to be monitored going forward. I have recently had a heart scan and have a lung function test in a couple of weeks to ensure these haven’t been affected by the transplant and drugs I have been taking.
Things to remember, everyone is different, there aren’t any set rules on when things will happen, don’t focus to far in advance, live every day, if you set goals and don’t achieve them don’t be too hard on yourself and time is the biggest healer.
Oh, @Muzza your post is so useful and I am sure it will be to others.
Your last paragraph is something many of us need to remember.
Look after yourself and be kind to yourself
Such a brilliant post which will help so many!
What amazing news and what an extraordinary recovery - well done! I’m so, so pleased for you. And I’m staggered you studied through chemo - I couldn’t even watch tv, I was so sick. It just goes to show how different we all react to various elements of the Acute Myeloid Leukaemia/Stem cell transplant journey. But like you, I’ve generally been blessed with a very good recovery and I’m back at full-time work with no fatigue issues - so I think it’s important to let people know this IS possible. I remember thinking pre-transplant that my odds were low - but I was basing this on old statistics, and I hadn’t seen a site like this where many people were clearly making excellent recoveries. Lots of people will read your post and hopefully take heart. Life can be wonderful again after this terrible Acute Myeloid Leukaemia/Stem cell transplant interlude.
I’m so glad you’re doing well. Keep posting!
Full of Beans X
Thank you so much @Muzza for sharing your story. You have certainly been through a lot. Thank you for your encouragement and the hope you give to others by being willing to share. Warm wishes. Willow x
This is such a useful post @Muzza and welcome . I share some of the issues.
I did a 5 day course in interpersonal mediation in 2021 - I needed to do it for sanity sake, but unfortunately caught Covid whilst attending (I think …) all safety measures were weighed but that was the period I caught it putting back my transplant - which I now still await as I’ve been ill also with my condition in November 2021but better since Jan 2022 and receiving treatment .
I went back to work in June 2022 on a return plan. I was allowed to work from home . I can do my job online . I had the review last week of that plan . I was asked how I felt about going into office now . I said no way . My office is an hour away - 2 hours return trip. It’s an old building with only two toilets for a group of staff … I get tired in the middle of the day (as I don’t sleep well and I am up early ). Agreement is I can stay at home …. and work flexibly . I miss the office socialisation, banter and dressing up for work and all that goes with that … but I would be worn out after a week and risk of infection would heighten.
I continue to look at opportunities that takes me away from the ‘one stream ‘ and labelling (that can occur) with having a cancer diagnosis .
My stem cell transplant is a long way off I think but my stems are on ice and being held .