Prognosis

Jenster78 3 months ago

5 replies

Edited by Jenster78 3 months ago

Mum has struggled to accept her prognosis and it's affecting her mental health and quality of life (and our quality time with her) She has AML non curable and was offered management chemo for extra time.

In December 23 after 1 round of chemo we were told by her consultant it wasn't working and she had the worst genetic mutation TP53 and she only had a few months.

Shes since has 3 more rounds (mums decsion as consultant wanted to stop) 3 lots of neutropenic sepsis and is still with us.

A decision has been made to stop chemo and medics now say realistically she won't live longer than 6 months.

I feel like we are given hope one minite and bad news the next.

For Mum it must feel like the diagnosis all over again and for us we want to spend as much time as possible with her but we have jobs, homes and families too. How can we juggle it all especially when she wont accept carers and CHC funding cant be applied for as "not at that stage" what even is that stage?

She gets very low mood and pushes people away.

Shes started getting angry with us for caring.

How do people cope with all this as well as try carry on with normal lives

admin 3 months ago

Hello Jenster78,

Welcome to our Online Community. We’re sorry to hear about your mum and all you’re going through as a family. 

When someone is diagnosed with a terminal illness, they’re likely to feel many different emotions. It’s understandable that you want to spend as much time together as possible. It can be difficult when you have your own commitments and mum doesn’t want to accept help at the moment. 

It’s normal to have questions about what support is available, and when, so I have asked our Information and Support Nurse to respond to you and explain more about Continuing Health Care and other support that you may wish to explore. 

It can be difficult to watch those you care about getting angry when you’re trying to care for them. I’m pleased that you have found our Online Community, and hope that other people in similar situations can share what helped them cope with you too. 

Remember that it will not be possible to do everything, and that even something that seems small can make a big difference.

If you need to talk , we’re here for you on our Online Community and Support Line 💛

Jan1 3 months ago

Edited by Jan1 3 months ago

Hello Jenster78,

my name is Jan and I am a palliative care nurse, hospice based. 

I am so sorry to hear about the challenges that your Mum and her family are having to face at the moment. If you feel that your Mums care needs are increasing, then it is not unreasonable to ask for a GP review in the first instance, to rule out any reversible causes that may be causing a deterioration, such as infection. 

 In addition, you may find it helpful to ask for a District Nurse referral to be made, as a key member of the Primary Health Care team, and can support us in our home when we become less well and care needs are increasing. The District Nurse can complete the Continuing Healthcare Assessment to identify the appropriate support that your Mum may need.  In addition, the GP may feel that it is appropriate to refer your Mum to the local palliative Care team in support of symptom management.

 https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

If you need to talk, we are here for you on our Online Community and Support Line.

Best wishes

Jan 💛

Speckles1988 2 months ago

Hello Jenster, 

Just little message to ask how you are doing?  

When i read your post there are parts sounding same as mine with my sister, sepsis, non curable but no treatment was available due to sister frail and serious condition at the time.

I was a little hesitant to send you a message as i did not wish to upset you more the you are at the moment...sorry.

I am here aswell if you wish to have a chat anytime. 

Hugs, take care x

Jenster78 2 months ago

Currently sat downstairs whilst my mum is on her journey home to god.

The palliative team and district nurses are literally angels.

I am feeling calm and not as nervous as I thought I would.

AML (acute myeloid leukaemia) is cruel but I read not everyone has as bad prognosis as my lovely Mum, my bestest friend in the world.

I just hope her passing is peaceful and she is away from all this suffering.

God bless, as my lovely mum would say, to you all.

Live, laugh, love and hug each other longer and harder xxx

Speckles1988 2 months ago

I am thinking of you.. i feel for you and totally understand.

Sorry Jenster

Hugs x