Had my video call with Glasgow on Wednesday there and didnt get the news i was looking for. With being diagnosed with Myelodysplastic syndrome (MDS) in November it was going to be that a stem cell transplant was what we were aiming for. It turns out I have a faulty protein in my bloods so the transplant wouldnt be unsuccessful. I have to carry on with the azercitidine until my time is up. Currently been given 12-18 months to live.
Im absolutely heartbroken for my wife, and children . I dont know how to accept this terrible news.
Oh Alan I am so so sorry to hear you news. It must have been a very difficult appointment for you and your family.
Both of these organisations offer amazing support for you and your family at times like this.
Marie Curie(We’re here to support you | Marie Curie)
Macmillan Cancer Support (https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life)
And of course don’t forget the support services of Bloodcancer Uk Blood cancer information and support by phone and email | Blood Cancer UK
Alternatively the helpline is always here for you- 0808 2080 888.
Sending you a virtual hug
Oh @Alan-duffy what a difficult appointment for you, you must be heartbroken for yourself as well as your wife and children.
@Jules has given you brilliant information, but it might be worth talking with the trials team via the Blood Cancer UK support line on 0808 2080 888 just in case they have heard of any applicable trials.
Your GP might be able to help access local services for you all.
Just give yourselves time to come to terms with the news, look after and be kind to yourselves and please keep posting.
@Alan-duffy, I’m so sorry to hear your news. It must have been the worst moment of your life, and your thoughts for your family must be agonising. But as Erica says, please double-check the trials, and of course use all the support services that Blood Cancer UK and other organisations offer. It may be worth seeking counselling through one of these routes, to help you to process the situation and enable you to live how you would like to live, rather than have worry etc take over.
I’m sure you must need time to think about all of this and to be with your family, but please do keep coming back to us if you would like.
I’m thinking of you all. X
I am so very sorry to hear this. It takes enormous courage to post this and i appreciate how confronting this must be, particularly when you are still likely coming to terms with lots of new information.
Can i ask Alan if your haematology team have been able to have a discussion around the possibility of accessing a clinical trials?
In case this is an area you wish to explore further, we do have a clinical trials support service team should you wish to seek any more information- Clinical trials | Blood Cancer UK
I also wanted to extend our support and let you know that you & your family are so very welcome to contact us at any point should you wish to talk anything through, at any point- 0808 2080 888.
Do Take Care, Lauran
@Alan-duffy how are you all doing now?
Look after yourselves