Nothing more they can do for DH

[MummyDoIt]

The title says it all, really. We saw his oncologist yesterday. The last lot of chemo did no good at all and he's deteriorating fast. There are no other types of chemo available and, even if there were, he's not well enough to tolerate any further treatment. All they can do now is alleviate his symptoms as best they can and wait for the inevitable. I asked how long he had and the doctor said, 'months, not years, and probably not as many months as you would like'. Up until now, I've been telling the DSs that we hope Daddy will get better. Now I'm going to start saying that Daddy will not get better. Yesterday, I had to call MIL and tell her that her eldest son probably won't live to see Christmas.

That's worrying me about the fluids MDI. We have had such care from the Ian Rennie nurses, but I supppose it is what is available in your area.

OJ - does the fluids thing sound normal to you?

sorry x post

we used a sponge thing to get a bit of fluid into steve but mostly we used it to keep his mouth comfortable vaseline is also good for this.
they wouldn't put a drip in as they said it would be uncomfy and they felt steve didn't need fluids anymore at that stage.

oh my goodness, this has been an education I really thought they would give anyone fluids.

So sorry MDI.

I'm so sorry to hear about your husband

I did spend a little time during my nursing career in pallative - not much, but I do remember IV fluids and wether to give them being a huge subject.

With someone like your husband administration of fluids can very quickly lead to fluid overload, oedema and/or heart failure. Your husband will not be able to absorb fluids as efficiently as he used to be able to. Not sure if that helps at all. Oral hygiene with sponges can help with comfort. Thinking of you

When my father was dying recently (at home) they just tried to wet his lips. By that point IV with fluids would not have helped as by then he was dying although there is a difficult moral issue of whether refusal to give fluids is wrong if it would keep someone going even one extra day

How dreadful for you.

MDI, I haven't seen your threads before and I'm so very sorry for all that you are all going through.

I'm a nurse and I work with oesophageal CA a lot. Having said that I usually work with patients who are able to recieve some kind of treatment, whether it be a resection, stent or insertion of a Jej. These are very similar to the pegs but lower down the gut.

Have you discussed the issue of fluids with the Macmillan nurse? Only beacuse on the one hand the fluids may be of little or no help, but it just all seems to be happening so quickly for you all, bearing in mind the prognosis of months rather than days/weeks IYSWIM.

Does he have any sickness at all? If and when he does drink does he regurge any back up? Is he on morphine continuously through a pump? If so and he is pain free (is he?) the dose could be reduced a little as perhaps it is more than he needs? Or perhaps other types of morphine need to be tried.

I seem to be asking a lot of questions but I'm hoping that they may help to get the care he recieves to be right IYSWIM, a lot of your observations and knowledge of your DH holds the key to getting him brilliant care and making his time left as pleasant as possible. Will be thinking of you.

i have emailed you.
if your DH is having the oramorph very frequently then his MST might need adjusting, i used to keep a book to write down the oramorph and sevredol the nurses could use that to adjust steves MST, steve got to a point where he couldn't swallow tablets so he had the driver which kept him pain free mostly thou to start with we did have to have the DN out several times a night for top up doses.

Just wanted to say we're thinking of you here, MummyDoIt. I know there is nothing we can do (though OJ will tell you that if there IS anything, you only need to ask MN, and they will do it).

try to take care of yourself a little bit, even though that is hard to do right now.

In our prayers
x

I've just found this thread. So sorry to hear your news.

Marie Curie nurses used to offer a service whereby they sat in overnight with patients so that the carer could get some sleep. It's a free service and might make it easier for you to get some rest overnight. Your Macmillan nurse should know how if they're available in your area.

So sorry for your trouble

Hope you have RL support as I know you'll have MN support but that's just not the same

I wish you love and every strength

how was your night? Hoping you got some sleep and that your DH was comfy as possible.

morning, hope you all managed to get some good sleep last night.
Wishing you all a peaceful day. x x

Hope you had a good night MDI. Thinking of you.

MDI, have only just seen this thread and wanted to say hello and to send my love.

I see that there are people here who really understand what you are going through right now, and many, many others who have no experience but who want to give their support.

Thinking of oyu.

xx

thinking of you x

Mummydoit

I am so sorry to hear what your family are going through. I lost my father recently to cancer, and it is so difficult literally watching someone deteriorating daily.

The morphine certainly can cause confusion, hallucinations, restlessness, etc, although my father's morphine dosage got to such a high level in the end that it almost sedated him. I know that sounds awful but he was at least out of pain.

In terms of fluid - its obviously important for your husband to drink, but even little sips of water are enough. Eventually he may refuse fluids and wetting his lips will be the only way to keep him comfortable. It is amazing really how little food and water we can exist on. When my father did reach his last few days, we were also told that he wouldn't be given a drip - at first we found this quite shocking, but we were told that it was his body's way of 'shutting down' for want of a better term, and it could actually cause discomfort to give him higher levels of fluid.

I don't mean to sound depressing, and I'm sure other people have given you better advice - I just know that one of the worst parts of my father's disease for us as a family, was not knowing what would happen at the end of his life. I think the dying process is taboo, and I just wanted someone to sit down with me and tell me the physical/mental/emotional stages that my father would/could go through.

Thinking of you x

DH passed away last night. Can't believe he's gone so quickly. Going to start a new thread as I don't want to come back to this one.

So So sorry. {{{{{}}}}}

oh, im so sorry x please be kind to yourself and look after yourself.