As per the title. I’m around day +30. I sailed through the transplant and was discharged after three weeks. Problem is now my fatigue is getting worse along with my motivation and low mood. Is this common?
Hi @Nethermoor this is a very non medical reply, but I think this is very natural, your body has been through so much medically, emotionally, physically and practically and perhaps really depleted your batteries and perhaps it takes a long time for them to build back up.
I hope others will be able to share their experiences.
I will also copy the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses
Be very kind to yourself, small manageable goals and slow and steady wins the race and please keep posting
Hi @Nethermoor it’s good to hear how smoothly your transplant went, though I’m sorry to hear of the fatigue you’re experiencing and that you’re lacking motivation. Don’t be afraid to be open and honest with your clinical team about how you’re coping at the moment, as they should be able to talk to you about what support may be available to you, such as occupational therapy and psychological support.
Fatigue is so common after a stem cell transplant, so you’re certainly not alone in what you’re experiencing, but it sounds really tough. I wondered if you might find it useful to take a look at this booklet from Blood Cancer UK and Anthony Nolan - The next steps. It’s about recovery after a stem cell transplant and there is a section on fatigue on pages 20,21 and 22.
We also have some tips around managing fatigue on this page of our website - Blood cancer and fatigue | Blood Cancer UK. This is something that so many people on here have experienced, so thank you for posting this and sharing how you’re feeling, I think many will relate.
We’re only at the end of the phone on 0808 2080 888 if you ever want to talk things through with us.
I hope you’re having a better day today.
I had STC 4 years ago, and its now a dim and distant memory.
However, I most certainly identify with your description of the tiredness after it, and the low mood. I never really understood why I felt quite so miserable and sorry for myself once it was all over. I expected to feel relief and to improve every day.
It was a slow process, but the Spring came in the end with the sunshine and the daffodils!
There was a sense of abandonment once it was all over I think too. Its a pretty stressful experience after all with constant monitoring every few hours , and then you get sent home to get on with it!
Take it a day at a time, and be kind to yourself.
I can certainly relate to Nethermoor’s experience. I too flew through my bone marrow transplant without a hitch, being discharged after less than three weeks.
My fatigue, wellbeing and motivation suffered badly once I was back home. I also couldn’t understand why I didn’t feel ‘on top of the world’ after all that I’d gone through. It didn’t help that family and especially friends would say to me ‘You had the treatment. You’ve been discharged so you should be better now, why can’t you just get on with it’.
All the lack of fatigue, feelings and lacking in motivation does get better but only with time.
I am now one year Post Transplant and although better I’m still not 100%. It amazes me how long it takes to recover. I suffer mild Graft-versus-host-disease which developed six months after discharge which doesn’t help but overall my outlook on life and fatigue has improved enormously.
I would also like to add;
You hear on TV, or on radio or read about in papers and magazines of people who have had life changing experiences who are over the moon with happiness and joy organising fund raising events and getting on with life. I spent months agonising over this because I didn’t feel this way. Should I feel this way.
I was withdrawn not wanting to see anyone or do anything. I’ve come to learn, what works for one doesn’t necessarily work for all.
Hi @TinTin a great big welcome and thanks so much for sharing your experiences which I think is such a valuable part of our forum.
You say should I feel this way and personally I think all your feelings are valid and there are no right or wrong ways of feeling. I think your last sentence says it all.
There have been many times when I have felt the same as you, but I felt I ‘should’ feel grateful, happy, excited and exhilarated etc…
Don’t forget that you and your body have been through a lot medically, emotionally, physically and practically and it takes a long while to build back up.
Also during treatment life is on hold, but there is a such a lot going on, after you get discharged and come home that leaves a void.
Perhaps we understand each other on our forum and others cannot understand if they have not gone through it.
Unfortunately some comments from family and friends can really hurt me to the core.
Please keep posting as I look forward to hearing more about you and if you would like to talk to someone The Blood Cancer UK support is there for you on 0808 2080 888.
What are others experiences
Thank you for your response.
I have struggled and still do to certain extent although, now more emotionally than medically.
What I have found by using this site is that by writing my experience down helps me to open the valve on my emotions and let a little emotional steam out and take some pressure off.
I am glad @TinTin that writing your experiences down helps you to open the valve on your emotions and let a little emotional steam out and take some pressure off.
So well phrased and yet another advantage to our forum.
Look after yourself
I have commented on fatigue on a few posts now over the 2 years I have been registered I think.
Well on 22-01-23 marked the 2 yrs mark since I had stem cell transplant. I went to Oxford due to the covid challenges going on at the QE, out 2w 1d felt great when I left as a few of you say.
Well the weeks after seemed to go backwards. Everything which is so normal, eating making a drink all seemed very hard work.
The bigger challenge was fatigue and still is, and personal I think it’s so hard as you don’t know when it is going to hit you. Meaning you can’t plan, you just have to deal with it when it happens which can be very frustrating for some one who likes to be organised and plans ahead.
It does get a lot better I promise you. I possibly get 1 bad day ever 7/10 days, which I’m happy with if that’s all I am left with.
One other thing to watch out for is if you get ill the. The fatigue comes back very quick and is hard to get rid of. I have a rough December signed of with this bad cough, cold bug that most people seemed to get and at the heart of it the fatigue felt like a few days after transplant it was awful, so had to totally rest in order to be able to get better.
Another good thing I learnt about my fatigue is how you eat. If I have large meals infrequently then that made fatigue worse. However if I have smaller meals but more of them at regular intervals then I seem to last a lot better, no big crashed Breakfast 7, snack 10, lunch 12-12:30, afternoon snack, tea 6pm. Works for me, try it out see if it helps.
Exercise is good might feel hard but if you do a few minutes regular then it seeks to improve.
Hope the advice helps best wishes
Oh @Cannon I really agree with everything you say about fatigue from top to toe of your post.
I also had the same bug this December, as did my husband, his bug ran it’s course, but with me it took longer to depart and I was left with this lingering fatigue, it just wiped me out. He could not understand it as he only sees things from his perspective.
I claim nobody can understand fatigue if they have not had it.
I have not tried your smaller food portions, but more of them regularly, food for thought as they say!!
Thanks again for your post and take care
@Erica not problems at all if any of my words can help anyone then it’s worth while writing them.
100% agree fatigue is an interesting issue and hard to describe to people. Last week at work I had someone trying to tell me it’s just like being over tired and I needed to get off now and get a good night sleep and I will be fine tomorrow. So far from the truth.
Yep 5 wks took me to get over it and I had a lot of colleagues and family with it for 2/3wks max.
Hope your keeping well
Best wishes to all