Advice for Husband with Voice box, lymph, lung and throat cancer. Palliative Care now.

Hi Mandy and welcome. Sorry you've found yourself here. There are a couple of ladies here in a similar situation. I shan't tag them but they may come across your post and get in touch. Mean while you might find some more support in the carers group HERE

It's a horrid place to be, at least you are there with him.

Best wishes

You dont tell us much about him. Do you just mean he has cancer on all these body parts and no operation or chemo or radiation. Or has he had treatment. I have had voice box cancer and had it removed, with the other treatment, and also felt like this at times. But I got over it. 

Hi seeker1.

He had tonsil cancer last year, had Radiotherapy and chemo, had a terrible time, face exploded so they stopped it but he got over it Slowly.

Then he had a check up, found cancer in his Lymph in the neck so he had a dissection, 11", and had it removed.

Then after a few months he had trouble breathing, restricted in his throat, had a PET scan and was told he had voice box, lungs and throat cancer too.

They planned to operate and take voice box out but cancer is separate from the other ones and very aggressive.

He would spend 2 months in hospital and in that time it would grow in the other places.

He has gone downhill in the past 2 months.

Sleeps most of the day and night.

He had had 3 chemo, next one is on the 9th Nov.

Thanks. Not being a doctor I cant really give advice. I can only say get another opinion. Some doctors are better than others. I wouldnt give up so easily. How is he breathing at the moment. Why dont they give breathing tube. Is the feeding tube a peg and why does it cause problems. You dont mention anything wrong with his stomach. You will have to have the voicebox removed at some time. I am surprised you havent had more replies.

I can only add dont give up. 

Mandy I can’t give you a medical opinion but it sounds like you need to sit down with your husband’s team and get everything explained to you. Are you saying that your husband is terminal? Palliative care means treatment to relieve pain. Are you saying they have said that’s all they are going to do? Or are they planning surgery with the goal of curing the cancer there and tackling the spread elsewhere with chemotherapy?  

Thank you.

He IS breathing but he struggles sometimes. Especially when he is trying to cough up phlem. The cancer is very aggressive in his throat and voice box. It will kill him first.

They can't take out the voice box as he has the extra cancer in his neck that is very aggressive and if he has the voice box taken out, the long recovery in hospital will not stop the other cancer growing.

They can't give him a trachyostomy because the cancer is in the way.

He has a RIGG through his tummy for all meds, food and drink.

He has started to take meds far too frequently now, after I had made a nice chart for easy tracking, I can't make head nor tail of what he is taking now, it's all over the place. He says he can't wait the directed time for the next dose. I look on the chart and he started taking his meds at 3am and by the time it's bedtime again, he's helped himself to

6-7 doses of paracetamol because he's up so early, at 3-4am, he's taken his full quota before 12 noon.

Too many doses of Morphine (even though the nurse has told him not to take it anymore as he is now on a Fentanyl patches)

Too many doses of Chlorpromazine for hiccups.

He argues with me when I tell him he is taking too much and he just says he can't put up with the pain, says " What am I supposed to do, I can't be in pain like this" 

I am not sleeping, he makes terrible noises in his throat as he sleeps a LOT, day and night, I try to do my chores while he is sleeping and I don't have to see to him.

He is mobile but gets very tired getting dressed so he just doesn't bother.

 We don't go out much at all now. I'm just in the house catching an hour here and there and seeing to him, to and fro, getting this and that. Feeding him, because he falls asleep in the middle of tube feeds and had occasions when he has left tube open and his entire stomach contents have leaked out all over him and the bed, through the quilt etc. The mess..... ohhhhh.

So I can't sleep well, always with one eye open. He has telly on day and night, just falls asleep all the time with it on.

Sorry to rant. He is a darling and I feel helpless. He doesn't deserve this.

Hi there.

It IS terminal

Nothing they can do.

Palliative Care only.

They say the cancer in his mouth, throat, voice box and aesophagus will kill him first.

He will just not be able to breathe.

They can't put a tube in his neck because the cancer is in the way. He is breathing through a gap the size of a straw atm.

Its just awful.

Oh Mandy....This is awful for you both.

mandy said:

He argues with me when I tell him he is taking too much and he just says he can't put up with the pain, says " What am I supposed to do, I can't be in pain like this" 

He has a point. I'd let him have what he wants, and tackle the nurse to up his fentanyl?

Can your GP arrange Hospice care for little while so that you get a little respite yourself?

You both deserve better. Hugs

Oh Mandy that’s terrible. I would do as Dani suggests. Get his fetynal patch increased and try to get hospice care no one should be in pain. 
Hugs Hazel x

Hello Mandy

I like your post meaning it is very informative. I can understand where you are coming from, and I must stress again you must ask another opinion. It cant do any harm and can only help. I dont know where you are but I think London has the best doctors. I dont exactly understand why the cancer is in the way of the tube. If you had a tube you could 'feed' him oxygen which I think he needs through it. If there is a space there for the air to get through then there should also be space for the tube. You havent told us if there is anything really wrong with the tummy. I also have a peg or rigg so I know what it is like. You mentioned he left it open. There are two 'closures' on mine to make sure that doesnt happen. I also had hiccups after my operation but I lived with them and took nothing for them. After taking too many tablets they stop working and just taking more and more wont help. I also say dont take morphine. Which part of his body hurts him the most. If it is the peg or rigg have it changed immediately to the monarch one like I did. I think I am going to write to you a private message telling you the email of my ENT doctor and you should contact him. Tell him you wrote on here, give him a transcript of everything on here, and tell him I gave you his name. How will he know it is me. Tell him the one who cant talk and types to him in surgery I think I am the only one. He is a also a big professor and a very nice man and I am sure he can best advise you.