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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:

catsrus · 08/01/2016 03:24

Great news hellen I hope he stays as well as possible for as long as possible 😄

AnnieOnAMapleLeaf · 13/01/2016 19:05

How are you and DH doing, Hellen?

Original poster

Hellenbach · 13/01/2016 22:14

We are coping here Annie thanks for asking.

The colostomy has taken a bit of getting used to, I do feel for DH, there is no dignity. I am pitching in and helping change his bag, we have had a few leaks but it's improving.

He is very weak and painfully thin. He has steroids which are helping to boost his appetite but he hasn't put any weight on yet. He spends most if the day asleep but is getting up and eating with us sometimes.

He had an appointment with the surgeon today who was vet positive about his recovery so far. They didn't expect him to survive. But we haven't been to see his oncologist yet.

I am fearful that he won't recover enough to be able to tolerate more treatment. But he is determined to do this.

DS1, who is. 10, was asking about cancer yesterday. It started with David Bowie dying from cancer and he asked why it couldn't be cured and what type of cancer DH has.

I felt it was positive that we can have theses conversations openly and he is now willing to ask about things.

OP posts:

TheGashlycrumbTinies · 13/01/2016 22:36

You are right Helen, your DS's questions will give you an opportunity to talk at his level, and hear what he is thinking.

Hope the oncologist appointment comes soon.

Wishing you and your family strength.

Sidge · 13/01/2016 22:38

Thinking of you Hellenbach.

AnnieOnAMapleLeaf · 13/01/2016 23:08

So good to hear from you Hellen. You and your DH are in my thoughts.

FuckyNell · 18/01/2016 23:32

How are things Hellen

SparkleSoiree · 18/01/2016 23:48

Hellen, have read your thread from the beginning and I have no idea where you have found your strength from. It can only be from the love you have for your husband and children and must feel like a rollercoaster of emotion. Wishing you lots of strength for the coming weeks and months for your family.

AnnieOnAMapleLeaf · 24/02/2016 02:00

How is your DH, Hellen? And how are you coping?

Original poster

Hellenbach · 01/03/2016 22:29

Thank you for your kind wishes and thinking of us.

DH is back in hospital with an infection. He got ill in half term. He has two abscesses in his liver, they think caused by tumours shrinking. Yes, shrinking! So the radionuclide therapy has had an effect which is great news.

However, DH is so weak and tired from the infection. He has had one abscess drained and is on antibiotics. He is also very depressed.

I have to say it's really having an impact on our family now. Both children are unsettled and emotional. I am just frazzled from the hospital visiting and keeping all the balls in the air.

Thinking of everyone out there in the same boat.

OP posts:

spamm · 01/03/2016 22:39

I have not been in your shoes, but it could happen to any of us any day, and your resolve is so inspiring.

Is there any kind of support group for the kids that could help you and them get through this? It must feel very lonely for them too - and you have so many things to think about. I am in the USA and in a similar situation, I would go and speak to the school counsellor to get advice - maybe something like that exists in the UK school system?

echt · 02/03/2016 06:59

My thoughts and are with you, Hellenbach

WhoTheFuckIsSimon · 02/03/2016 07:02

Fantastic news about the tumours shrinking.

Thinking of you and your DC.

AnnieOnAMapleLeaf · 03/03/2016 10:32

You are in my thoughts Hellen. I cannot begin to imagine how difficult this is for you, your DH and your DC.

Original poster

Hellenbach · 05/03/2016 20:44

I am going to hold my hands up and tell you I am NOT coping any more. I am ill, both DC are ill, we all have a horrible cold. It's been so hard. I didn't visit DH as I don't want him to catch it. My MIL was out of the country and I just had to crawl out of bed and get them to school, a new low.

I am getting mixed messages from the hospital about DH. Palliative care think he won't recover from the infection and want to dose him up to the eyeballs on morphine.

The consultant is happy with his clinical health, bloods good, tumours shrinking etc.

DH is massively depressed. Doesn't often speak sleeps all day, bedridden. Completely hospitalised, no inclination to come home. No interest in the DC. Doesn't reply to text messages.

Has been on antidepressants just over a week.

My lovely DS1 has been a superstar. He is 9, and made his brother breakfast the day I was so ill. Today he took some of his savings and went to the local shop to buy food to cook me a meal tomorrow for Mother's Day. He has also promised me breakfast in bed.

I just feel so sad.

OP posts:

MegCleary · 05/03/2016 20:50

I have not words or advice, just scream, cry rant at the unfairness of it all, be kind to yourself and you have an amazing child there.

Puppymouse · 05/03/2016 20:58

Your children are ones in a million OP. Perhaps that's some comfort for you. I can't imagine how hard this is for all of you.

40nanny · 06/03/2016 08:08

I am so sorry for what you are going through,it must be so hard for all of you.just to let you know I am thinking about you today on mothers day& to give you strength for you& your lovely boys too💐

WhoTheFuckIsSimon · 06/03/2016 08:11

Hopefully you and the dc will get over your cold and feel better very soon so that will be one less thing.

If Dh has only been on the antidepressants a week I guess they won't be working yet? They need time to kick in so things may improve there. And hopefully they can get on top of his infection and once he starts feeling a bit better that will improve his mood.

Your DS sounds lovely.

Sometimesithinkimbonkers · 06/03/2016 08:23

Happy Mothers Day Hellan!!!

I hope you are feeling a little better. Both me and DH had the evil virus over half term and we are just shaking the reminents now! Obviously PIL were on holiday !!!! They always are when we actually need them lol!
Hope DH is feeling a little more positive and reactive soon. Have they upped his steroids? My SIL dad has just been sent home with his end of life meds and a DNR .... We are at a loss.
Thinking of you all... Sounds like you have a cracking son!!!!

FedupNagging · 07/03/2016 13:10

I cannot imagine what you are going through at the moment Hellen - you need to be strong for your dh and ds's and actually, you probably don't feel up to that task sometimes, particularly when you are unwell too.

Your ds1 is such a for being so thoughtful - you must be very proud of him.

Hopefully the meds will start to take effect and dh's mood will lift soon which may lighten your load a little.

Daffyduck1 · 07/03/2016 15:39

Helen. I'm so sorry I missed this. I will message you. Xxx

Mammabear31 · 14/03/2016 19:48

Have been following the thread from the start, thinking of you Hellen and your wonderful family.

Jankwrs1 · 14/03/2016 22:13

Thinking of you and know how hard it is.

AnnieOnAMapleLeaf · 16/03/2016 19:08

Oh Hellen! I have been away for awhile and have finally caught up on all my watched threads. I am so sorry to hear how bad it has been for you lately. I hope you have all recovered from your illnesses and I hope you are able to get some clearer advice regarding DH's status.

I am not a religious person, but you are in my thoughts daily and I hope you are all able to find some peace soon, in whatever form that may take.

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