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Mental Wellbeing post transplant

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Rachelj01 Total Reaction Points: 16
I was diagnosed with AML back in March 15, after the routine chemotherapy I underwent a transplant which sadly didn’t work therefore I had a second transplant in Feb 16. I quickly regained good health, in fact how well my body has recovered never fails to impress me. I feel as it at times I am still very much recovering from the mental trauma of the entire experience. Prior to being unwell I lead a very busy life, juggling work, family, friends, home improvements etc which looking back I took in my stride. In comparison, I now find juggling all those routine day to day tasks can at times be overwhelming, it’s as if my capacity to deal with stress has been reduced to the minimum. Coupled with still suffering fatigue to a certain degree, I feel as if I am still on the journey to recovery even though my body / blood etc. are in fine form. Does / did anyone else find that it took them time to rebuild their mental / emotional strength?

Comments

  • greg777 Total Reaction Points: 59
    Hi Rachel,
    I completely recognise this. My transplant was similar time to you. I started a post a while back about mental health post-transplant. I don't feel like i am the same person mentally. Anxiety is ridiculous and I too have very little tolerance for stress. However, I think it is getting better with time - maybe like a bad fall off a bike. At first, the thought of getting on a bike again seems so far away, then you are really wobbly, then you start to get back some confidence and then hopefully you are back to where you used to be - only with the knowledge of what it feels like to fall off, and the fear it might happen again. If I look back, I know I have made progress, but I am still self-aware enough to know that I am not the same person as before -maybe that is natural with what we have been through? And part of it is to acknowledge that and not beat ourselves up about it? I also read that adrenaline and cortisol levels go all a bit wonky after transplant so maybe the chemicaliën transpireren against us also? But I do think it gets better with time.
    Wishing you all the best,

    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Rachel,

    I think at 18 months post transplant and having relapsed once you possibly still have a sub-conscious fear that your illness may come back and that perhaps unsettles your mind? We're all affected and react in different ways, possibly as a result of how well we coped during the treatment and transplant, and how smoothly our initial recovery went. If you've had setbacks along the way I guess it takes a while to get relaxed enough for the stress to go away.

    I think when I was at the stage you are at now I was also a little stressed at times and occasionally got emotional. I'd say I am probably still more emotional than I was before, but as I approach the 5 year mark in January I would say I don't get so stressed in relation to my illness.

    I also seem to get fatigued easier, but at the age of 50 I don't know whether that is as a result of my transplant or just the fact that I am getting older and need to slow down a bit. Depending how old you are you may need to spread the load a little and get other to help with the day to day tasks which will hopefully help.

    I do try to take things easier now despite a job that can be stressful at times, but I try not to let things get on top of me. If anything, when I feel myself getting stressed I just have to think that there are worse things to worry about and be grateful that I have my health and am largely happy with life. I'd go as far as to say my quality of life is possibly better than it was before as I view every day of life as a bonus.

    As time goes on I think you'll find it easier and get more relaxed. Until then take it easier and spread things out in terms of time and workload.

    All the best,

    Steve
  • Rachelj01 Total Reaction Points: 16
    Thanks Gents,

    I found the comment about the change in adrenalin and cortisone levels very interesting. I think to do through what we have all been through it is perfectly normal to change and find that your ability to cope has been dented. I guess what is hardest is that others don't really see the change and there is a hopeful expectation for a you to be back to normal quickly.

    Thanks
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Rachel

    I am the nurse specialist in patient services, thanks for posting. I am sorry that you feel this way, it is frustrating as its not as obvious as some of the more physical symptoms and 18months after the transplant there can be an expectation not only from family and friends but also yourself that you should be back to normal. However in my experience lots of patients feel the way you do at some point in their recovery after a transplant, so don't worry it is very normal.

    Having a transplant can be daunting and stressful and sometimes its only when symptoms settle down and you are visiting the hospital less frequently that you have time to think about the experience of the last 18 months and this can be overwhelming. This coupled with fatigue can leave you feeling the way you do. Over time this should improve but you might also benefit from talking to someone, discussing how you feel and ways of coping when you feel like its all getting too much should help. You can read one of our blogs on 'chemobrain' that you also might find useful https://blog.anthonynolan.org/?s=chemobrain. 3 patients discuss how the transplant has affected their lives in similar ways to you and how they cope.

    You have done so well and I hope that realising you are not alone has helped. With the advice from Greg and Steve and the blog you might find ways of coping until it improves.

    Best wishes
    Hayley
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