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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:

Doraydiego · 04/10/2015 05:30

I am so sorry to hear that. You sound amazingly strong. I am in a different time zone and am here to hold your hand or lend an ear or shoulder.

DearPrudence · 04/10/2015 05:32

Everything I want to say sounds trite. So I'll just tell you there is another MNer awake at this hour wishing you peace and strength.

ocelot41 · 04/10/2015 06:24

I am awake. It sounds a nightmare. I am so, so sorry. Have another hand to hold.

icklekid · 04/10/2015 06:29

I'm sure that being strong for your children is so hard. It's ok to cry, it's ok for them to cry. I hope you have lots of real life support and please ask for what you need as I'm sure people are desperate to help but don't know how. Hugs, meals, looking after your dc so you can be with dh do what you need.

RedRosie · 04/10/2015 06:49

So sorry. What an awful time for you. I have nothing useful to say, but I am thinking of you... and more knowledgeable people will be along soon. My DH has cancer (doing well just now) so I have some idea of what you are feeling.

Sansoora · 04/10/2015 07:00

Im very sorry to hear this.

xxx

cherrytree63 · 04/10/2015 07:04

So sorry Hellen, I know from personal experience how hard it is, my children were very young too when my husband was ill. God bless you and your family, and give you the strength to get through this difficult time xx

JamesBob · 04/10/2015 07:56

I just wanted to ask, is he having enough help with his pain? Are his doctors aware that it has got so bad?

There is a good service offered which comes from the people who run the hospice, though it is a home service, and doesn't mean he is necessarily needing to go there. They can come out to you, they really are experts in pain relief.

He could have a driver fitted to deliver the pain relief.
Sorry if you already know all this. He should not have to be in pain.

There is a possibility that if his performance status, that is the way he is coping at the moment, physically, is not great, that they will decide against the treatment they had planned until he is feeling a bit stronger.

Please talk to someone, do not suffer this on your own xxx

Original poster

Hellenbach · 04/10/2015 08:54

Thanks for your messages. Middle of the night is a lonely time, it's good to know there's people out there.

JamesBob - his performance status is 1, I never know what this means, it's on his letters from the hospital.

He has morphine and has been told to take as much as he needs, but doesn't seem to balance it right, especially through the night.

Suns shining here today, so feeling a bit stronger.

OP posts:

JamesBob · 04/10/2015 09:09

Oh gosh. When are you next seeing someone? They can help more with this, it sounds as though he needs someone to come out and sort out his morphine and make sure it is doing the trick.

Have you a MacMillan nurse or contact? There should be someone you can get hold of about this as what he is going through isn't necessary, they can help with it.

Performance status sounds as though they have not reassessed in a while.

Here is the WHO scale for your reference, it might help you if you mention it when you speak to someone.

•0 - you are fully active, more or less as you were before your illness
•1 - you cannot carry out heavy physical work, but can do anything else
•2 - you are up and about more than half the day. You can look after yourself, but cannot work
•3 - you are in bed or a chair for more than half the day. You need help in looking after yourself
•4 - you are in bed or chair all the time and need complete care

I hope this helps a bit, you really need someone to help with the pain management. I'm sorry I don't know more, and can't do something for you myself but please do get in touch with whatever contact you have, perhaps giving MacMillan a call might provide some answers as to where to go from here?

Sending love.

JamesBob · 04/10/2015 09:12

Helpline is 0808 808 00 00, but they only open Monday to Friday 9am to 8pm.

There are some others too, mainly for specific types of cancer, and there may be one that is available on a sunday.

Otherwise call them tomorrow first thing, unless you have another contact at the hospital you think might be around today or tomorrow?

I hate to think of you both suffering like this.

Obs2015 · 04/10/2015 09:14

So very sorry to hear this. Poor you, poor him.

RandomMess · 04/10/2015 09:15

Just have you discussed/considered the option of not have the radionuclide treatment, will it definitely benefit him for long enough to make the 2 weeks separation worth it?

I hope you get the specialist support and advice you need and don't hide behind a false smile x

ALittleFaith · 04/10/2015 09:16

I'm really sorry to hear this. I can't imagine how difficult it is for you.

Is the morphine liquid, injection or tablet? I wonder if he needs something slow releasing over 12 hours with additional relief on top. (I'm a nurse btw). Do you have Macmillan support? I think it might help to get them involved for advice for pain management.

WhoTheFuckIsSimon · 04/10/2015 09:17

Do you have a phone number for the oncology ward? When my dad was ill we had a number and could ring for advice anytime. Or maybe ring the OOH today? It sounds like he needs reviewing.

JamesBob · 04/10/2015 09:17

Does anyone know who at the hospital the OP can contact on a sunday?

larrygrylls · 04/10/2015 20:16

What kind of cancer is it? The radionuclide therapy tends to be used for hormone receptive tumours, such as carcinoids. They sometimes work very well and extend life and provide pain relief. Additionally, they should be quite cancer cell specific, with the main side effects being fatigue and some nausea (which can be dealt with using drugs). Normally steroids are given post treatment, which will also aid appetite. Best of luck.

Original poster

Hellenbach · 04/10/2015 20:49

Just got the children into bed. Thank you so much for your advice and support. We had a Macmillan nurse a while back when he had chemo, I will contact her again. I don't know why his morphine isn't controlling the pain. He has liquid and tablets. He mostly seems exhausted.

He has Neuroendocrine cancer, I do have every confidence in his consultant recommending this treatment. IF it works, he could have stabilisation and symptom relief for a good few months.

We just don't know if it will work, and there isn't much else left to try. He wants to do it. We have to do it now as the treatment will come off the Cancer Drugs Fund list in early November (bloody government).

I really appreciate your help.

OP posts:

RandomMess · 04/10/2015 20:54

More and I really hope the treatment works, please ask for RL support x

Sidge · 04/10/2015 21:25

I'm so sorry Hellenbach. It sounds very difficult. And I've got a feeling you have a child with the same rare condition as mine (forgive me if I'm wrong) which means you have so much on your plate.

I think it's time to speak to your oncologist and nurse specialist about pain management.

Thinking of you.

Original poster

Hellenbach · 04/10/2015 22:19

Hi Sidge, yes you are right, double bubble

OP posts:

HexBramble · 04/10/2015 22:25

Hellen

whatisforteamum · 05/10/2015 10:04

Sending you and a hand hold.Both my parents have had many cancer treatments however the not being able to sleep in the same room as your DH sounds dreadful.I am so sorry and hope this treatment works and gives you more quality time.

BreeVDKamp · 22/10/2015 22:41

How is everyone doing OP? Hope you've been able to give your DH a hug today after his treatment

Original poster

Hellenbach · 23/10/2015 21:46

Bree that is so kind of you to remember our two week timeframe!
Unfortunately DH is back in hospital. He developed very high calcium levels in his blood, which led to him being very ill.

It turns out that high calcium is caused by cancer in the bones, so that has all felt very frightening.

However, it looks like the treatment has had a good response and he is already a lot better.

DC have really struggled though. It seemed so cruel that he went back into hospital the day before 'cuddle day'

OP posts:

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