[zozo0921Participant]

Hi all,

My dad has high risk MM due to 3 genes mutations and is not viable for STC. He’s on DVDT just ended cycle 4 and is in remission.

Problem is Dad is really struggling mentally. He can’t come to terms with the fact he has cancer and he so scared of dying and leaving my mum alone. All he wants to do is hide away and sleep and wants mum beside him all the time.

Since Xmas he has had neutropenic sepsis, pneumonia, chest infection and now infection in his small intestine. It’s one thing after anther and I imagine he feels like he’s not moving forwards. He’s not really acknowledged he’s in remission.

He has seen the mental health nurse once but didn’t really speak about how he’s feeling and this big hole he has been thrown into since September 23. I have advised him he needs to open up to get support.

How has everyone else managed to overcome the diagnosis and the thoughts of it not being curable?

Dad has very little appetite and fluid intake is minimal he is losing weight every week.

Thanks in advance as I really don’t know how else to support my parents

[mulberryParticipant]

Hi zozo0921
I think perhaps most myeloma patients take sometime to process their diagnosis and the consequences of living with an incurable disease. As Confucius said, we all have two lives, the second one starts when we realise that we only have one.
It’s all the harder when patients experience specific health challenges during the early months of their diagnosis so so little seems in the patients control. From what you say, your father seems to have had one challenge on top of another. Some myeloma patients do pull through these near death experiences and life calms down, and even with high risk genetic factors some patients live for 5-10 years, and will hopefully live longer in the future with new types of treatment likely to be approved.
Most patients would benefit from having psychological help to cope with the diagnosis.
Personally I benefitted from some counselling sessions provided by a local Maggie’s Centre. Other patients have had counselling from cancer centres, mental health services via GP or consultant, or have used Myeloma UKs Peer to Peer scheme (putting one patient or carer in touch with another patient or carer).
It may be that your family will have to advocate on your father’s behalf to push for him to get psychological help.
I wish your father and your family well.
Jane

[rabbitParticipant]

Hi Zozo921,

On lack of appetite: there are high calorie sachets that he can be prescribed, in a few different flavours. Add water to the powder, shake it and get him to drink it.

I lost 15kg from when I was diagnosed. I ate whatever I could to turn that around (biscuits, chocolate etc). Some months into remission, my body has decided that it wants to put weight on: one day last week, I had two lunches and wanted to have a third.

A diagnosis of myeloma can affect people in many different ways. I went through what I call the trauma stage and am now pretty calm in the context of being ‘high risk’ (like your dad).

Personally, I will be damned if I give up the rest of my days to misery due to this disgusting disease!

Is your dad someone who generally doesn’t open up about feelings? Would it help if he talks to Macmillan? For that matter, do you think he would open up if he talks to me?

Regards
Rabbit

[zozo0921Participant]

Thank you for your replies.

Dad’s not a talker unless it’s to my mum so it’s very hard.

I will speak with mum and put ideas across to see what we can do for dad.

@rabbit Thanks for the offer to chat with dad thats very kind

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