Hello All,
My Name is Claire and my Dad has Myelodysplastic syndrome (MDS) since 2014, 2 rounds of Rabbit and Horse chemo, and many tranfusions until now, the treatment is no longer working with his body. He has been a regular patient at Sheffield Hallamshire, and today after a lengthy conversation with the consultants he is now awaiting a bone marrow donor for his last chance of survival. He is 70 years old and i can see he is deteriorating but still keeps going. Its so comforting to read your messages of support for each other. I am absolutely dreading this year for him, its going to be tough for him, Hope to speak to you soon Thanks Claire.
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Hi @ClaireJ and welcome to the forum. I’m glad you have posted. There are lots of members on her supporting loved ones who will understand how difficult this must be for you.
It’s tough being the patient but just as tough being the carer. I know my husband found it really difficult at times.
Waiting is often so difficult isn’t it, especially when you can see his health deteriorating. How is he doing in himself?
The support line is great if you feel you need somebody to talk to. Off course we are all here for you but sometimes it helps to talk things through. I’ve shared the link.
Sending lots of love X
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Hello Nichola75,
Its lovely to hear from you.
Many Thanks for your quick reply, your support is much appreciated. Dad is telling me he is ok, and he knows the transplant is a huge risk, but i think deep down hes petrified. I cant fully understand what hes feeling and going through, but hes got good family support around him and his grandchildren keep him laughing. Im his next of kin and will be his primary carer, but i will find it hard because hes been there for me my whole life and i struggling to imagine life without him. I do hope the transplants work for all patients not just my dads, its quite humbling that a total stranger is willing to donate and they will be forever in my thoughts. Take Care speak soon x x
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It’s an amazing gift for somebody to give isn’t it. I used to give blood before I was diagnosed with lymphoma and hate the fact I can’t do it anymore.
It’s sounds as though you have a wonderful family around you and your dad. Children are sometimes the best medicine aren’t they! It’s good that you are all there to support each other.
I think our thoughts always go to that place of imagining our life without our loved one if things don’t work out. I’m on active monitoring at the moment but my children often have moments when they ask about what may happen of things change. It’s only natural. Just take it day by day and please take care of yourself, as well as everybody else X
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Hi @ClaireJ I am so glad you have found our forum and felt able to post.
@Nichola75 has responded brilliantly to you what can I say.
Yes, we do have many family members/carers on here. I often say that they are the unsung heroes.
At the top of this page currently there are details of the Blood Cancer UK first podcast, I think it might be really worth a watch for you.
I so glad that your family are very supportive.
Grandchildren are such a tonic aren’t they.
I think fear ( perhaps you are petrified too) of the unknown, never ending waiting and thinking the worst are completely natural.
There are a lot of people on this forum who have had different types of transplants, the procedures are not without risks and there can be side effects.
Look after yourselves, keep talking and be kind to yourselves.
Please keep posting and I hope to hear more about you
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My heart goes out to you, it really makes me reflect on life reading all the posts. I wish you wellness now and for your future. I will be in touch and will ask for support, and get my Dad posting on here too when hes ready.
Take Care sending hugs x
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I had a listen to this @Erica. Thanks for reminding me it was there x
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Hi @ClaireJ ,
Thank you so much for taking the time to tell us about your dear dads current situation. I am so sorry you are all going through this really difficult time.
It is really great you have found us and it seems you have been supported just brilliantly thus far. It sounds like you & your family are thee most wonderful tonic for your dad and no doubt will be a huge reason why he remains so strong.
We also appreciate and don’t underestimate the impact this will have on family who become carer givers, so i do hope you are coping okay?
As you will have already seen our forum is filled with amazing support and It’s very likely you will be in contact with many who are going through similar circumstances as your dad.
As you have touched upon, the thought of transplant can be really frightening for patients & loved ones & we are very much here for anyone in your family to help offer information around transplant or indeed just be a listening ear.
Please do know that our helpline is open 7 days should you prefer to talk things through- Blood cancer information and support by phone and email | Blood Cancer UK.
Do Take Care, Lauran
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Thank you all so much, its a real comfort.
Speak soon Take Care.
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