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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:

QOD · 14/12/2015 23:02

There are no words other than
its not fair and I'm sorry

fukkigucci · 14/12/2015 23:06

I'm sorry. Thinking of you and your family at this hard time.

SleepyForest · 14/12/2015 23:10

I wish this was not happening to you and your family. It is so terrible to even read and must be appalling to live through.

FourFlapjacksPlease · 14/12/2015 23:19

I'm so sorry. Are you and DH managing to talk to each other openly about the situation? Thinking of you.

NiceAcorns · 14/12/2015 23:28

I'm so sorry. Is your DH at home? Did you manage to get back in touch with your MacMillan nurse?

Thinking of you all

obsessedlex · 14/12/2015 23:36

Just sending you huge bear hugs xxxxx

Original poster

Hellenbach · 14/12/2015 23:39

We talked about end of life care, funerals etc, I wrote his wishes down.

I have to say MacMillan nurses have been useless. I am so disappointed, people run bloody marathons for them. There was a woman at the hospital on her lunch break, door shut, saw me but not prepared to put the Tupperware down.

I went back later to say my husband wanted a chat about end of life care and she said it wasn't in her role. I would have to go back up to intensive care and ask a nurse for a referral.

She couldn't pick up the phone as it wasn't her role.

I am going to contact Marie Curie tomorrow.

OP posts:

Xoticdreamz · 14/12/2015 23:42

Lots of love , I'm very sorry , it sounds very very hard xxx

mathanxiety · 15/12/2015 04:56

Hellenbach. You must be feeling awful after that coldness.

Have you talked to the children and to their school?

echt · 15/12/2015 07:23

So sorry to hear about this, Hellen.

While I can see why the talk might not have been in her role, not picking up the 'phone? FFS.

Many and hopes for a happier resolution with Marie Curie.

Stellar67 · 15/12/2015 07:33

So sorry Hellen. The last thing you need to be doing. Good Luck with Marie Curie.

catsrus · 16/12/2015 19:29

Is there a hospice near you Hellen? we are working with one ATM, family member with terminal diagnosis, and they are amazing - not just for the final weeks / days - they provide support for anyone with a life limiting diagnosis AND their families.

catsrus · 16/12/2015 19:30

you can find if there is one near you using the finder here www.hospiceuk.org/

lilyloo · 16/12/2015 19:46

I am so sorry to hear this. Another vote for getting the hospice involved.
They were fantastic when we used them not just for the patient but for the whole family.
Like you we were so let down by other agencies involved who made us feel like we were another thing they had to do.
The hospice staff were amazing.
I really hope you get the support you need and can get a family Christmas together.

heinztomatosoup · 16/12/2015 19:50

Ditto catsrus advice re hospice. Sorry to say when we went through a similar thing earlier this year Macmillan were equally disappointing, although I am sure there are good ones of course. Our local hospice was AMAZING, supporting me as well as sorting out pain management etc, they were literally angels on this earth. My prayers go out to you and your family x

Original poster

Hellenbach · 17/12/2015 14:18

Just back from meeting the palliative care team at the hospital. They want to get DH out of hospital for Christmas. Either at home or in a hospice.

It's all a bit scary as he is in intensive care, a bit more coherent than before but still very weak. A nurse showed me how to change his stoma.

Naturally he wants to be home for Xmas day to see the DC open their presents. But he isn't sure how soon he will recover enough to walk, or even get out of bed.

They have offered a hospital bed in our home and district nurses over the Xmas break.

I have to do this for him, I know it will be our last Christmas together. But I am terrified.
Hand holding please.

OP posts:

ImperialBlether · 17/12/2015 14:24

I'm so sorry. I'm shocked at the MacMillan care. In all likelihood my dad is facing his last Christmas, too, and the MacMillan nurses have been great. He was diagnosed with terminal cancer in March and they've come out every three weeks (more frequently at the start) and have told him they'll come out whenever he wants them to. He sees it as a social visit, but it's clear they will increase the visits as and when they need to. It was very upsetting in their first visit as they had to discuss whether he wanted to be resuscitated (I didn't see the need for them to ask that, given his age and condition) but after that initial visit they've been absolutely great. I'm really shocked the nurse didn't put down her lunch to talk to you about such a serious matter.

Is your home suitable for him? Will he be able to get to bed? Will he be able to use the bathroom at all?

I can't imagine being told I had to go into a hospice. It must be incredibly scary. Has he accepted that he will have to go to one soon? If so could he go to the hospice and come home for Christmas Day?

What a poignant day it will be for you.

to you and your family.

Sansoora · 17/12/2015 14:25

Hellen, its ok to be scared. Everyone gets scared. Please don't think otherwise. There's a hand here to hold and a pair of big fat arms for you to cuddle into as well if you need them.

Im so sorry.

xxxxxxxx

confusedandemployed · 17/12/2015 14:35

Hellen.

You are right, you need to do this. You'll always regret it if you don't.

I'm appalled at MacMillan on your behalf.

I hope and pray you have a peaceful family Christmas.

Bluebell66 · 17/12/2015 14:51

Hellen, I have nothing to say that can ease your suffering, I just want you to know I'm thinking of you, your DH and your DC, and sending you love and strength. I lost my DH 2 years ago, and I know how you must be feeling. Don't be too hard on yourself or be afraid to ask for as much help and support as you need. Don't try and do everything yourself. Sending hugs xx

cleanmachine · 17/12/2015 15:03

Aw I'm so sorry for you all. Your local hospice should be able to provide you with support at home if dh is coming home. Make sure you get all the help you need and be prepared for it to be emotionally exhausting and rewarding at the same time. Usually hospices try and assign an occupational therapist to you so they can assist with end of life quality and other things like memory books, additional equipment required and a shoulder to cry on. I think you're doing an amazing thing by having your dh home. In years to come you will look back on this time as difficult but uplifting too. Here to hand hold and comfort if you need it.

Remember in all this to make time and space for yourself to grieve and breathe.

Ludoole · 17/12/2015 17:18

Hopefully you will get good support at home. Our hospice at home team were pretty useless when we needed them... but i know some people have had good experiences.
I hope you get to make some wonderful memories this christmas.
I'll be thinking of you and your family on christmas day. X

ovenchips · 18/12/2015 18:55

I would be scared too. Anyone would.

I'm here and holding your hand.

Idefix · 18/12/2015 19:25

Thinking of you Hellenbach...
As others have said ask to be put in touch with your local hospice. District nurses are often very, very good in these situations.

Sending you a cyber hug and wishing you a very special Christmas.

P1nkP0ppy · 18/12/2015 19:29

It's perfectly ok to be scared, I hope you get all the support available. Big hug and very much thinking of you x

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