Coping with full time cml care

Hi there,

My dad was diagnosed with CML just over 12 months ago. After initially receiving chemo, his lack of strength/tiredness and increased emergency transfusions forced him into stopping treatment and has had none since September time. He’s increasingly losing weight (and still eats like there’s no tomorrow) and has lost most of his mobility - so many more tests are being done, including ones for Parkinson’s. My mum isn’t coping very well with the level of care he needs now, and wondered what she is able to do to get more help? I worry about her mental health too, and the massive change in my dad at has almost sent her into a state of grief. Not sure where to go from here as everyday is a struggle. 

  • Hi  and welcome to the Community but so sorry to hear the challenges the family are facing.

    I had a different blood cancer and been on the journey for over 20 years now and yes its hard work across all the family.

    It sounds like you need to talk with some experts so:

    You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

    We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

    Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

    Alway around to help as best as I can ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Thanks , I figured this may be the best way to go! I do know there is a support group at their nearby hospital, but no local Maggies unfortunately. I’ll pass this info onto my mum, and encourage her to seek some advice - thanks again! x

  • I used our local Macmillan/CAB advisers as they totally understood what was available when my condition was not great and we were struggling with finances.

    You do need to talk with their GP and arrange for a In Home Assessment by Community Care.

    You may also find our very supportive Carers OnlyFriends and Family and Supporting Someone with Incurable Cancer groups to be good places where you can connect with others support family through their cancer journey but more importantly the carers care for each other.

    When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

    Always around to help.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile