Hi all,
I have seen there has been no activity on this forum for 29 days, which is a shame as I could do with a chat now lol. I found out yesterday that my dad has stage 4 lymphocytic leukaemia and it's aggressive. He is 85 and so has chosen quality of life over treatment. People will say "well, he has had a good innings" but when i speak to him, he says that he still feels 40 in his mind. Therefore, a good innings is not comfort to him, as no 40yr old (even only in mind) is ready to go.
He is my world but the emotional part of my mind has shut down, yet I can't stop thinking about it. Anger is the only thing I feel. I know we all have to die of something, and many people of age die before 85, so i know i am lucky to have had him for this long, BUT ITS NOT ENOUGH.
I'm scared of what the end looks like for him....pain? I'm scared of the unbearable pain that I can't even comprehend how bad it will hurt right now, but a pain that i know is not very far away. and most of all i feel selfish to think those things, I cant imagine what is going on in his mind, or my mums. They have been together for 60 years.
HI scared78 and welcome to this corner of the Community although I am sorry to hear about your dad’s diagnosis. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Acute Lymphoblastic Leukaemia (ALL) but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma.
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Yes, there has not been much activity in the group lately but that’s not to say that there are people looking in so let’s see if anyone is in the same position as your dad or there are any caregivers out there dealing with the sane.
I can certainly understand why your dad has chosen quality of life over having treatment as treatment can be harsh…… most certainly so for an 85 year old.
So as your dad has made this decision you may want to look at our general…….
Supporting someone with incurable cancer
……. support group where you will connect with a wide range of community members from various cancer types navigating the exact same ‘incurable’ support challenges.
You may also want to check out our more active…..
Carers only (if you are his caregiver)
…….support group
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
I am always around to help more or just to chat ((hugs))
