Hi, im Christine, new here and looking for some advice. My 84 year old dad was diagnosed with Acute myeloid leukaemia (AML) in December 23. He was otherwise fit and healthy. He has just finished this first chemo cycle and now has pneumonia. It was a real battle to get him to go to A&E but he went and is now being treated. I’m trying to find someone he can talk to who has been through this and come out the other side. He’s a bit fed up with side effects etc.
My mum is completely overwhelmed by everything and I think she would benefit from talking to an older person supporting their partner.
Open to suggestions, thank you
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Hi @CW15SSY I am so glad you have found us it must be tough for all of you.
I would have still been in shock at this point.
You raise several issues.
Your dad wanting to speak to someone who has gone through his experience.
I hope someone who might have been through a similar experience will be able to share their experiences on our forum.
If he is fed with the side effects perhaps he needs to talk to his medical team for advice and help.
As for your dad actually wanting to talk to someone that might have a similar experience he might like to look at and talk to the Leukaemia Care charity on 08088 010 444 (https://www.leukaemiacare.org.uk/) and they have a buddy scheme
There is also Acute myeloid leukaemia (AML) Care at Home (amlcare.co.uk) for you all
Also Macmillan Cancer Care Macmillan Cancer Support | The UK’s leading cancer care charity
Personally I would say don’t get hung up on exactly the same criteria. I have found it does not seem to matter what diagnosis we have, how old we are, what sex we are we, even whether we are the patient or family member we often share similar fears, thoughts, emotions and practicalities.
The differences are very basically the patients are actually having the treatments and side effects, the family members feel the powerlessness and often have to keep the home running.
You also felt that your mum might benefit from talking to someone older.
I have Chronic lymphocytic leukaemia (CLL) and I am 74yrs old and I also have other conditions and my husband had a mini stroke about 18 mths ago so he was very unwell and taken into hospital by ambulance so I sorted out our flat and got the bus to the hospital and was greeted by him irate that I had taken so long.
Each time I visited I was given a list of jobs to do, also I had to sort his washing and clean clothes out, ring the relatives with updates, when I got home from the hospital exhausted and I always got something wrong in his eyes.
By the time he came home I was emotionally, physically and practically exhausted and drained.
Nobody asked about me or offered me help, it was a very lonely time.
What about you, we are here for you as well on our forum.
I have found that I can be completely honest how it is for me on here.
If any of you would like to talk to the Blood Cancer support line their number is 0808 2080 888
We are here for you all so please do all keep posting
.
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Thank you so much for your response. It really is a comfort to know others are feeling the same emotions and going through similar challenges as carers.
Last night the reality of everything hit like a train. Definitely going to get in touch for the buddy system for dad. Sounds like just what he needs.
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Hi @CW15SSY It is frightening when that train hits isn’t it.
You are so busy trying to sort everyone else out, make sure it is what they want and they might have to make those calls.
You are such a loving person, but don’t forget yourself and your needs, please do keep posting.
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Hello @CW15SSY
Welcome to the Forum. Thank you for posting. I am sorry to read about your Dad and Mum.
@Erica has listed some great resources for you, I do hope your all find them useful.
I just wanted to repeat the offer of calling our Support Line at Blood Cancer UK. It is open for anyone that is affected in any way by blood cancer.
Encourage your Dad and Mum to talk to his specialist nurse/cancer support work. Sometimes there are support groups or meetings organised locally. Do you know if there is a Maggies centre nearby? maggies-cancersupport You may wish to get in touch with them if there is one near your parents.
Do make sure to look after yourself too, supporting a loved one with blood cancer is challenging and can cause mixed emotions. Our webpage: supporting-someone-with-blood-cancer has some useful information, which you may want to read.
Do keep posting about how things are going for you, your Dad and your Mum.
Best wishes, Heidi.
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