A complete bolt of lightening

A shock to my system

In January this year after a year of being confident, anxious and stressed I entered hospital for a doner stem cell transplant. The conditioning treatment caused a horrible reaction but the team at QUEH (Glasgow) were great and I began to improve and I went through the transplant without too much of an issue and was discharged after 21 days.

At home apart from days of fatigue all went well until day 54. I started to suffer from very severe diarrhoea and nausea finding myself increasingly fatigued. I am now back in hospital but much more wary of the future. This despite me being a positive soul has knocked me. Last week for the first time in my life I would have been happy to lie down and eternally sleep. It appears that I have Graft-versus-host-disease in my gut and now on day 2 of steroids I am feeling better and more optimistic although I don’t want another week like the last one.
I know this might sound an odd posting but I’m scared. I have a good business wonderful grown up sons and amazing grandchildren. I’m hoping, I think that someone can share their feelings and how them managed to confront these dark days. I have Myloefibrosis

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Welcome @Howard to this forum. Thank you for having the courage to share your story. I am so pleased you have reached out in this way. I too have myelofibrosis and amazingly have had it for thirty years. A stem cell transplant isn’t an option in my case so I haven’t been through the same awful experiences as you have. However as a fellow myelofibrosis patient I just wanted to say I am ‘with’ you and sending my warmest wishes. I am glad the steroids are helping and I sincerely hope you can re-gain your strength. It is quite understandable that you feel as if you have been hit by a bolt of lightning. We all have different journeys with blood cancers but a lot of the emotions we experience are very similar. Be kind to yourself at this challenging time for you. Willow

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Hi Willow

Thank you for your kind words. I will keep positive and not be too quick to dismiss my emotions in future.

Today I have woken feeling much better and more positive so today is going to be a good day and even though I am in hospital one to cherish

Kind regards

Howard

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Hi @Howard I am so glad that you have found us and what a horrible time you are going through.
This is definitely not an odd posting and I am sure that many others have had similar thoughts, feelings and graft versus host disease etc.
You and your body have gone through so much medically, physically, emotionally, practicalities etc that you might not have much re charging of your batteries yet.
Your medical team seem to be looking after you and your recovery and perhaps your recovery road will like so many others and will take time and be rocky at times.
I bet you do not want another week like you have had and that it has really scared you as you had been doing so well.
Please do keep asking your medical team all your fears and questions and if you would like to talk to the Blood Cancer UK support line they are there for you on 0808 2080 888.
Really look after yourself and be ever so kind of yourself.

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Hi

Thank you so much for your kind words of support and I will definitely talk to the medical team and seek further help I’d needed.

Kind regards

Howard

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Hi Howard
I had a Stem cell transplant for Acute Myeloid Leukaemia at QEUH almost a year ago. Luckily I haven’t been readmitted and haven’t suffered with any Graft-versus-host-disease (yet?!) I coped with everything during treatment but struggled mentally afterwards, I reached out to the psychology team at QEUH and have had a couple of months of counselling and I’m now feeling so much better. I hope you can get the same help and you continue to improve.
Sue x

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Hi Sue

Yes I am meeting with them tomorrow. I hope everything continues to go well for you

Kind regards

Howard

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I hope everything will be fine with you! :hugs:
I go to my doctor immediately with any strange symptoms

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Hi @freedomew a great big welcome to posting.
A good philosophy in my book.
You have already shown the value of our forum by supporting another.
I really look forward to hearing more about you.
Look after yourself

Hi Howard.

Just to say i hope you feel a bit better soon and remember my time in hospital when i fell ill.

Its an awful feeling of helplessness and realisation …BUT you will be home soon with your family and those feelings will fade.

Keep fighting bud…the eternal sleep comes to us all…but not for a while yet​:facepunch::facepunch:

Hi @Howard,

Thank you for your post and for sharing what you’ve been going through. I’m sorry to hear it’s been what sounds like a tough time. I’ve sent you a direct message on here.

Take good care,
Best wishes,
Tanya.

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Dear @Howard
I just wanted to see how things were for you now? Graft-versus-host-disease can be very challenging and I am hopeful that the steroids are beginning to improve your symptoms. Hoping that your treatment team have been able to reassure you and create a plan?
Do please keep in touch and if you ever need to talk, we are here Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma

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Hi Howard I also attended Queen Elizabeth in Glasgow honestly you are really getting the best treatment
They told me that everyone is different with treatment I had 9 chemotherapy treatments the first one I was so ill sick and so very tired all the time slowly i improved I had my last chemotherapy on December the 9th last year having a drug intravenous every 8 weeks for 2 years next one is in April
One day ok next day sick and tired and the horrible nightmares not normal sleep .
I keep it one day at a time
Ask questions I was told to keep a diary
I have no family I have had to come through this alone except for one distant cousin who has been a god send
Keep going you will get better positive thinking

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Hi @lesleerose thanks so much for your experiences of your treatment.
I just wanted to say that it must be so, so difficult going through treatment alone apart from what sounds a god send of a distant cousin.
However never forget you are part of our forum family and the Blood Cancer UK support line is also there for you on 0808 2080 888.
Please keep posting and you have done brilliantly, look after yourself.

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