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?
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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
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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.
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Hello Nethermoor
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.
Love Sue
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Hi all
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.
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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.
Take care
What are others experiences
Hi Erica
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.
Many thanks
TinTin
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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
Hello all
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
Adam
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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
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@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
Adam
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Hello, this is my first time here. My 22 year old daughter had autologist stem cell transplant approx 11 weeks ago. (Sophia was diagnosed with hodgekins Lymphoma 18months ago and had aggressive chemo initially then ABVD went into remission , relapsed a month later, had further chemo , was found to not to react well to cisplatin and then given a targeted drug and chemo which she achieved remission)
She did not sail through the transplant, experienced neutrophil sepsis, c. diff and a skin infection. (Had a few days in ICU) Also was on a feeding tube for a few days.
Now 11-12 weeks on Sophia is still experiencing chronic fatigue, very painful muscle weakness (even turning over in bed) walks about the house, having to pace herself. At times walks bowed over. Tries to walk small distances outside, but rarely goes out. Suffers from gerd after LEAM(finds it sometimes difficult swallowing food, sore throat. Only eats 2 or small portion of food and cant stomach protein drinks.
She is usually a very positive person and wants to get well (Sophia had just completed her 2nd year at medical school when she was diagnosed. Loved playing tennis, sports and never drank ) we have asked for help , physio tratment and awaiting for someone to call, i(i was hoping it would be a physio that had some speciality of cancer/stem cell problems but i was advised it would be a generalised physio?
We would like to know if what Sophia is experiencing is normal 11-12 weeks on after her STEM Cell transplant. She has use of a wheel chair and her consultant would like to see her out of it come December but with what she is experiencing it is difficult. She so wants to become strong again, be rid of cancer (PET scan in December) and return to Medical school.
Any advice ? Specialist phsio (south tyneside area)? Is this normal? Problems eating?
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Hi @bridge welcome I am sorry to hear about how your daughter is struggling at the moment.
I always think it is so hard to be a family member and/or carer.
You are so powerless to make your loved one better.
It is so difficult as everyone is so individual with their own medical histories and can react differently to the same treatments.
Perhaps it would be helpful if Sophia were to write down all her symptoms, fears, questions and practicalities and get responses.
If Sophia feels she would like to have you with her that might help you both.
Others might be able to share their experiences.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Sophia’s hospital, GP, Macmillan Cancer Care or other similar services might have services that might help her.
The Blood Cancer UK nurses might have other thoughts @BloodCancerUK_Nurses
Perhaps what you can all do is really look after and be very kind to yourselves, you must all be exhausted. Please do keep posting how you are both doing.
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Dear @bridge
Thank you so much for posting today and I am sorry to hear that Sophia is suffering with fatigue following her Autograft 12 weeks ago. I would firstly say that the initial three months after any intensive treatment can be very tough for the patient, independent of age or fitness. Particularly when there is an Intensive Care stay, sepsis, reduced nutrition and considerable side effects.
May I ask whether Sophia’s treatment team have supported her around her rehabilitation? I would expect that physiotherapy and a dietician would be integral in her post transplant care, particularly as she was in ITU. Which hospital is Sophia’s team based at?
I would suggest talking to her Clinical Nurse Specialist about what resources can be accessed to support her rehabilitation. Whilst it is not unusual to feel weak at this point, particularly after such a challenging transplant, I would hope that there is a priority placed on her recovery.
Do give us a call if you would like to talk through this: Blood cancer information and support by phone and email | Blood Cancer UK
Resources below that may be of use also.
Kind regards
Gemma
After blood cancer treatment ends | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
Recovering from a stem cell transplant | Anthony Nolan
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Hi Tintin,
I can’t find anything more recent on here but your experience is very similar to my husbands who is nearly 6 months post allogenic transplant . He was doing really well and starting to walk for 1.5 to 2 miles no problem but about a month ago nose dived and can now barely walk 1/2 mile.He’s very wobbly and weak. He is now getting so fed up as although they have tested him too to bottom there are no answers as to why he has got worse, apart from “it takes time”.
How was your mobility? Have you got more energy now? Nearly 2 years post for you?
Thankyou
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This is a good explanation read from Anthony Nolan
Managing fatigue after a stem cell transplant | Anthony Nolan.
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