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Life-limiting illness

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Possibly weeks left....what do I do/what should we know to help?

30 replies

linspins · 22/04/2023 07:07

My darling and brave husband has been fighting his cancer for over two years now, from a diagnosis of late stage bowel cancer in August 2020. It's now in lungs, liver, lymph nodes, spine. Friday brought the news that there's a tumour encompassing his artery into his heart, which is causing his shortness of breath due to heart struggling. They've said it's maybe weeks now. (Maybe more...possibly less).
Husband is hopefully coming home from hospital today and palliative care team will take over care.

My head is in a spin and it's so surreal. We've got two kids, son 13 yrs and daughter 16 yrs (due to start her GCSEs in two weeks....😔)
I'm wondering: if you've been through this....what makes it easier? What do we do? How do we cope? Im just in bits.

OP posts:
linspins · 23/04/2023 07:56

Luckily my work (school) have said take all the time you need, and both kids schools are fantastic. Son's school is a giant grammar but I still feel they are looking out for him personally and have stuff in place for him- he's excused homework, and can go to spend time with the school therapy dog when needed. It'll be a day by day decision though whether the kids go to school or stay home to be with their dad.

OP posts:
RuthTopp · 23/04/2023 08:07

I'm so sorry to hear you have had such a bad night . You have taken a lot on and perhaps the pain of knowing of what is to come alongside the reality of coping with the coming days / weeks / months is weighing heavily on you.
Remember to set aside a few moments in every day that is just for you . A cup of tea in the garden ( in better weather ! ) a bath , read a chapter of a book - anything .
Take all the help offered , try not to plan a day , accept that people will be coming & going a lot , medical people , friends & family who need to see him ( but also he/you will have days when you can't bear the visitors / are too tired / need a quiet family day ) so don't be afraid to say you need that as well.

KrasiTime · 23/04/2023 08:21

I’m sorry you are going through this. Not the same but my dad died last year.

My dad liked simple things like yoghurt, custard, rice pudding.

The palliative night sitters were a godsend for us when my dad was home towards the end. It meant we could get on looking after him during the day.

Do not underestimate the toll on you. I remember the permanent headache. Keeping hydrated luckily so many visitors meant lots of tea. Eat when you have a chance even if you don’t want to. I think I lived on scrambled eggs.

There are no words of comfort but my heart goes out to you & your dcs.

treespouse · 23/04/2023 08:47

I'm so sorry you're going through this OP.
Is he able to have conversations? Or is his breathing too bad?
If he is able to chat I would set up a recorder (on your phone) and during one on one time ask him lots of Qs about his life/growing up/etc.
Then one day when you're feeling strong enough you can have these made into a book for your children. This is something I started when my husband's cancer returned. We would lay in bed and I would ask him things like
What are your favourite songs?
What was life like growing up in the 90s?
How did you pick what to study at uni?
Tell me about a fun school trip you had
Who was your best friend growing up?
What's one of your favourite memories of your wife? Of your mum?
Have you ever won any competitions?

It's so hard. I'm so sorry.

RuthTopp · 23/04/2023 08:57

I should have also added on my post that getting a baby monitor if you are sleeping in a separate room can be a comfort of he calls out and you worry you might not hear him / are downstairs during the day.

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