Palliative care

Hi Disney

we were handed off to the local palliative care team 7 weeks ago today. At that point we were given almost a split prognosis because of how my husband's tumour is moving and growing. The oncologist said its touching the brain stem and if it invades there, we are talking days. It is also moving backwards in the brain and across to the other half. If it keeps going that way, he said a few weeks or 2/3 months. 

I've learned to accept each prognosis with a pinch of salt and just take each day as it comes.

Our local palliative team have so far been really supportive. We have the "just in case" drugs of the fridge if we should need them. 

I hope your local nurses are there for you. Try to stay strong here and take things as they come rather than worrying about how long. Easier said than done I know.

Sending you a hug virtual hug and lots of positive energy. 

love n hugs

Wee Me xx

Hi Disney.

We have also jùt been handed over to our local hospice at home team who have been amazing.  Our major issue is deteriorating mobility and increasing personal care. The hospice team have provided a wheelchair and mobility aids all over the house so that my husband can move around as much as he is able and we are discussing carers in the mornings as I have to work (from home).

I didn't ask about prognosis. Pete chose not to have any further treatment and as much as I want time with him I understand that he is tired and does not want a bit of extra time if he feels even worse.

Luckily his personality is still there so we are able to appreciate what time we have . My heart is breaking.

Sulubee

Thanks for your reply 

Hi Disney

I cam see lots of people have replied but here is our experience. My my was diagnosed in August 2022. No chance of surgery due to the tumour placement. We did one round of radiotherapy and chemotherapy. This finished in December 2022 and we were handed to the palliative care team. January and February 2023 were a blur, mum deteriorated rapidly. We had several "this is it moments". One Monday morning she woke the most well we had seen her, and she's remained this way ever since.

The most recent MRI shows no growth but no real reduction (as expected) when we asked about prognosis it was basically "how long is a piece of string" and to monitor for symptoms and changes. That's pretty difficult since she is practically immobile anyway and needing lots of support.

I guess what I'm trying to say is for us the term palliative wasn't necessarily what we were expecting, and we are just in a slow steady plod of taking each day as it comes. I struggle with the unknown, but am learning (kind of) to just accept that's the way it is and there's no telling when this horrible disease is going tonstart spreading again, knowing that when it does and considering there is no more treatment then the decline is likely to be rapid. We are now 4 months in to our palliative journey. X

Hy Disny,

Sorry to read this.

I just want to echo what everyone else says.  Transfer to palliative care simply means a move from treatment to management of symptoms.  I wouldn't conclude too much about expected lifespan - it is wildly different from patient to patient. People can last for a long time even if they are very ill and not eating - or something might happen and they can go very quickly.  The only thing that seems to be a good predictor of remaining life span is when someone stops drinking and that only happens when you are down to the last week or so.

For what it is worth, my wife lasted about three months from when they stopped treatment (though we had been interacting with the hospice team for a few months before that).

Please keep on trying to pace yourself.  I think the danger is, if you are thinking it is a month then you may try to sprint at what is probably still a marathon and risk burning yourself out. You still need to be looking after yourself and taking time out as much as you can.

Big hug...

Pete

Thanks for your support.

This group really helps

I agree, this is exactly what we did. We expected the worst to be sooner than it was and we were all absolutely burnt out, only to find ourselves no further backwards or forwards 3 months later. It's definitely a rollercoaster journey for sure x