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Life-limiting illness

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Original poster

I think my DH is dying

426 replies

Hellenbach · 04/10/2015 04:50

I can't sleep. It's been 13 years since DH was originally diagnosed with cancer. He had a big operation and we had many years of good health.

Then it came back and it's been a rocky road of different treatments over the past few years.

We are running out of treatment options now. He is currently on no treatment as the last one stopped working.

I can't believe how much he has deteriorated in the last few weeks. He has been bed bound for 6 days, barely eating and in pain. He is skin and bone and sleeps all day.

On Thursday he is going into hospital for radionuclide therapy. They will inject him with radioactive medicine. He has to stay in a lead lined room for 24 hours.

When he comes home he has to sleep in a separate bed for two weeks. We can't touch him for two weeks either. He has explained this to Ds1 who is 9 and very upset about it.

DS2 is 5 and has learning difficulties so is less aware.

I just don't know how DH will tolerate the treatment when he is so weak and frail. We are hoping it will stabilise the cancer. We won't know if it's worked until several weeks afterwards.

Just need a bit of hand holding.

OP posts:

Ilikesweetpeas · 23/10/2015 21:51

Another stranger thinking of you and your family. I hope that the hospital are able to help

timelytess · 23/10/2015 21:52

for you and yours.

PunkrockerGirl · 23/10/2015 21:58

I'm glad that there was a reversible cause for some of your dh's symptoms and that he's feeling much better.
Hope he gets home soon.
Sending

DavesPiglings · 23/10/2015 22:05

Hellen you seem to have lots of so I'm sending and (3 bits so you don't need to share with the children!)

I hope your husband is home with you soon.

PorcupineNecktie · 23/10/2015 22:06

Hellen I can't begin to imagine what you all must be going through. My thoughts are with you

WoahBodyforrrrm · 23/10/2015 22:15

I'm so sorry to hear you're all suffering this cruel bastard disease. I hope the latest treatment is successful and cuddle day comes round quickly for you all. I'll be keeping you and your family in my prayers!

ImperialBlether · 23/10/2015 22:25

I'm so sorry you're having such an awful time. It must be so hard for you and your children to see him suffering.

Klaptout · 23/10/2015 23:21

I hope he is home soon and cuddles can be had.
You have a lot to cope with, make sure and get support for yourself as well.
My DH had a grade 4 brain tumour, it was very difficult as he was so confused, we got a lot of support in the home, full time care package through an agency, districts nurses and a Mac nurse, our children have autism and caring for them and my DH was impossible without this help.
Does your dd have a SW or a direct payment package to help support her needs?
Enjoy all the catch up cuddles

Original poster

Hellenbach · 27/10/2015 21:25

He is home! The DC are all over the place. 9 year old has coped really badly and has been a real handful. 5 year old, with special needs, is just so happy to see Daddy.

This has been particularly hard. It feels like I have seen a glimpse of the future, how it will be when DH is gone. It makes me appreciate the here and now, even though it's hard.

OP posts:

Klaptout · 27/10/2015 22:43

Good to hear he is home.
If only there was a pause button on life.
How is he doing?
Make sure you get support for you too.

Jankwrs1 · 27/10/2015 22:48

Stay strong, Hellen.

SecretWitch · 27/10/2015 22:58

I'm thinking about you and your family. Sending healing thoughts. Xx

BewitchedBotheredandBewildered · 28/10/2015 00:40

As previous poster said, look after you. Hope you have real life support.

Thinking of you Hellen

ChopsticksandChilliCrab · 29/11/2015 15:19

I have just caught up with your thread Hellen. Thinking of you, DH and your DCs, and hoping you are all having cuddles at home now xx

Original poster

Hellenbach · 02/12/2015 23:49

So sorry been quiet. I would love to say things are better...but it's like wading through treacle here.

Each day seems harder. He is so thin and weak. He has anaemia and will have a blood transfusion on 10th December. He is practically bedridden.

He is due his next radionuclide treatment and we won't know if it's worked until he has it.

My Ds1 who is 9 fell apart at school today.

I am keeping going with life and work. But I wonder when I will have to face up to reality.

OP posts:

Dinglethdragon · 03/12/2015 03:27

I'm so sorry to hear that Hellenbach - is there any support for you as a family ? I have a family member who has a neuroendocrine cancer, sadly an aggressive one and she moved rapidly from diagnosis to stage 4. As its now "life limiting" she is able to access services at a local hospice - which includes a 24hr support line for her and her family and friends. She has already started accessing their services, even though she is still "well" and undergoing treatment. They encourage people to get referred to them as soon as possible, it's not just a service for end of life care. She was particularly keen that her DC had access to support if needed. She also wants her end of life care to be there rather than hospital (too clinical) or home (doesn't want the DC to have the association of home with her death).

is there any kind of service like that near you? Something that will provide support for you and the DC too?

ThumbWitchesAbroad · 03/12/2015 04:18

Oh dear Hellen - so sorry to read your update, especially for your DS1. Are the school helping him?
Have you heard of www.winstonswish.org.uk? They might be able to offer you some ideas to help both your DSs, now and later.

FX that your DH copes better with his next treatment, and that they get that blood into him quickly! Don't know why they can't do it sooner, tbh, if he's so ill :(

((((hugs)))) love and strength to all of you x

mathanxiety · 03/12/2015 04:48

to you. You are so strong.

Do you have people supporting you - meals, friends for 9 yo to play with, someone just to drop by and offer a shoulder to cry on and maybe some cake and a cuppa?

Original poster

Hellenbach · 10/12/2015 22:02

An update: DH almost died this week. It was like a glimpse into the future, I know it's imminent but it made me realise the enormity of it all.

He was rushed into hospital in agonising pain with a temperature. A and E were amazing, they diagnosed a perforated bowel. I thought he was succumbing to the liver cancer.

It was the longest night of my life sitting with him in agony while they tried to stabilise him.

They operated the next day. I got a call saying to go immediately to the hospital as he may not survive the surgery. DH wanted to sort out our will.
I took the Dc to see him, preparing for the worst.

I can't believe he got through the surgery. He is riddled with cancer and skin and bone. I have to say the NHS is amazing.

I don't know when he will get home, he is in intensive care, hopefully we will have Christmas together. It feels like a miracle.

OP posts:

ImperialBlether · 10/12/2015 22:05

I can't believe how much you've gone through. It must have been so stressful.

I hope you have a lovely Christmas together.

mathanxiety · 10/12/2015 22:05

Hellenbach

PLEASE get the will sorted out though.

Orange1969 · 10/12/2015 22:12

Just read this; how shattering for you all.

I hope you get Christmas together.

janethegirl2 · 10/12/2015 22:14

Hellen, please stay strong. I know it will be very difficult. I know it is very trite but and .

mineofuselessinformation · 10/12/2015 22:18

So sorry to hear this. I'm thinking of you all. Call on all of the help that you need.

BasicBanana · 10/12/2015 22:20

I am pleased you have had such good support from the hospital, hope you all hang in there together and get a calmer Christmas.

Sending you some virtual hugs and hoping you have real life support for yourself and children too.

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