Take part in the 2017 Patient Survey!

[LCNurse2]

The 2017 patient survey is now live and we need your help to improve the experience of blood cancer patients!

leukaemiacare.org.uk/patien...

[Marie_14]

I am not a patient but my husband had Leukaemia. I joined the site because I thought I might be able to help a very small number of people. However the people who used to be here no longer post. I think that people need to be part of a support group too. That seems to have fallen by the wayside.

Leukaemia Care is a great organisation who helped us a lot. However it is sad that people going through this ordeal no longer have a place to talk to others in the same boat?

My husband didn't due from Leukaemia but from another condition.

[LCNurse2 Moderator LeukaemiaCARE Nurse in reply to Marie_14]

Hi Marie_14,

Thank you for your comment. I'm sorry to hear about your husband, Leukaemia Care currently run 22 support groups in the UK and we are looking at expanding these next year. I agree, it is really important that people have a place to meet up to talk to other people who are in similar situations.

[Marie_14 in reply to LCNurse2]

Hi there and thanks for the reply. I suppose I am thinking of both patients and carers. My husband died in February from PSP and MSA. The PSP site has been a lifesaver to me and so many others. Even those who have lost our loved ones stay a while, (not sure how long yet) to help others who have just found out they have it, or a loved one has. You should have a look at the site to see what I mean. We are there for people even when a loved one is dying or has died. It has saved many of us I am sure. My husband knew I was on the site. Sometimes I read him a post sometimes not as he just couldn't cope with illness.

He was in remission with his Leukaemia when he died. He had Atypical Chronic Myeloid Leukaemia which is very rare apparently. Hence my comment about helping a few people. Everyone has vanished however. Maybe they go directly to Leukaemia Care which is a great charity. I got a lot of support during the early days. I noticed on the questionnaire there was no mention of the condition he had but in the past a couple of people have posted when they have been diagnosed. Maybe you might add it?

[LCNurse2 Moderator LeukaemiaCARE Nurse]

I'm glad you found somewhere to find the support that you needed. I will definitely have a look at the site. Thank you.