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Original poster

Nothing more they can do for DH

204 replies

MummyDoIt · 21/08/2008 10:15

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.

OP posts:
castille · 22/08/2008 21:31

So sorry to hear this awful news, MummyDoIt.

Wishing you all much strength.

Original poster
MummyDoIt · 22/08/2008 22:43

UniversallyChallenged, it's really nice of you to come back to the thread and ask after us. Today has been okay but difficult in places. The Mac nurse came out and we had a long chat. We talked about various practical things to make DH more comfortable, about options for future care and about things that were worrying me. She was able to put my mind at rest about things. For example, DH fell the other night and, although on that occasion he was able to get to his feet again, I'd wondered who I could call for help if it happened again and he couldn't. I also have this recurring image - and I'm sorry if this is too morbid or weird - of waking up one morning and finding him dead beside me. I had no idea what I should do if he died at home with no nurses or carers there. She's given me lots of practical information and advice which is a huge help.

The difficult part is that she has encouraged DH to face the fact that he is dying and to talk about what he wants his last days to be like. We talked a lot about the boys too and she's made him think about what he wants to do for them. We still have a lot of talking to do but I hope he will feel able to leave something for them, whether it be letters, a memory box or a video. He's finding it very hard to deal with so I haven't pushed it yet but we will talk about it.

My sister is coming to stay tomorrow, just for one night but I am so looking forward to having someone to talk to. It will be a sad weekend as it will almost certainly be the last time she sees DH but I'll make sure there is laughter too.

DH has gone to bed - the morphine has really knocked him out - and I'm sitting by myself in a silent house, thinking this is how it's going to be every night after the boys have gone to bed. Just me and the cat.

OP posts:
lilolilmanchester · 22/08/2008 22:48

like others, nothing I can say but so sorry to hear this MummyDoIt.

ilovemydog · 22/08/2008 23:09

Am so sorry

How comforting to have a Mac nurse who knows about the practical side of things. Lovely idea to leave something for your children; a memory for them.

But it sounds as if he isn't in pain, which I'm sure is a comfort to you...

Hope there is someone to look after you when your sister goes...

cheesesarnie · 22/08/2008 23:10

sorry mdi

scottishmummy · 22/08/2008 23:16

so sad.how absolutely harrowing.you must be devastated and scared.keep talking don't bottle any of this up

take pictures of dh
start to have family time
take care

in every level i feel for you

onlyjoking9329 · 22/08/2008 23:28

only just seen this as we have been away.
i am so so very sorry to read your news, i am glad you have got a Mac nurse MB told us to get one and it was one of the best things we did.our district nurses were fab too and are around 24/7
As you know we have walked the path you are finding yourself on. please email me as i have lost your email address, i can give you my phone number if you like. if i can help in any way at all then i will.
sending you hugs.

BoysAreLikeDogs · 22/08/2008 23:35

MDI sending you and your family love and strength.

OJ I continue to be amazed and humbled by you.

MadBadandDangeroustoKnow · 22/08/2008 23:55

I am so very sorry.

UniversallyChallenged · 23/08/2008 11:55

Oh MDI - just read your update. I know we are internet strangers but am so thinking of you and your boys. Mine are 4.8 and 3.8, such similar ages. So accepting of things at that age which in some ways is a help.

The thoughts you have I suppose must be so normal in these situations. That's when the Mac nurses are really helpful aren't they with practicalites. When dh was really poorly a few weeks ago I thought exactly the same about waking up, dreaded some mornings.

So glad your sister is coming to see you- it's times like this when families are so great and there is nothing like a loving hug and someones ears to chew off/shout at in frustration!

Thanks for keeping us updated, it must be very hard on you. You sound an incredible lady. As I said before, please CAT me if you want to talk, or if I can help in any way.

Lots of to you, dh and your boys xx

milfAKAmonkeymonkeymoomoo · 23/08/2008 17:16

Oh your fears are so normal, I remember the silence of my lounge when DH was in hospital and I would come home - it was suffocating. Also that awful fear that I would wake up and he would be dead beside me haunted me throughout his illness. I used to listen to him breath and every pause I would hold my breath and wait.

Hope you find having your sister helpful, don't forget to look after you and get support for you.

Big hugs (if you are that sort!) xx

Original poster
MummyDoIt · 23/08/2008 22:42

DH seems to be deteriorating by the day. Today he didn't manage to get out of bed at all and has only drunk two glasses of fluid all day, no food at all. I was concerned that he was becoming dehydrated, plus he seemed very confused and his speech was slurred, so I called the district nurse out this evening. She said it could be his system adjusting to the morphine (he started that on Thursday) and maybe the dose needs to be adjusted. She was the evening nurse who doesn't know him so our regular district nurse is coming out tomorrow to check him again.

I've made the decision to sleep in the spare room tonight which was a tough decision to make. I hate the thought of DH waking in the night, needing anything and being alone but I've hardly had any sleep all week. He's so restless and he cries out in his sleep. I'll leave the doors open so I can hear him if he needs anything but hopefully I'll get a bit more sleep tonight. Tomorrow I'm going into the loft to dig out the old baby monitor and set that up. Doesn't feel right sleeping apart, though .

OP posts:
ilovemydog · 23/08/2008 22:47

You're doing the right thing. Besides, if you're exhausted, you won't be much use to anyone!

Don't feel guilty about getting some rest!

Is your sister still with you?

CarGirl · 23/08/2008 22:47
Sad
HeinzSight · 23/08/2008 22:47

MummyDoIt, am so sorry to hear of what you and DH are going through, you poor poor things. Please console yourself with the fact that you need some sleep so that you have the strength to help and support your DH as much as you can. Babymonitor sounds like a good idea, you can be there straight away if he needs you. Please please don't feel guilty. Am thinking of you.

onlyjoking9329 · 23/08/2008 22:50

oh love it is hard to sleep apart but you do need to get some sleep, i had a monitor for steve and it was useful, when steve came home from the hospice we had 24 hour nursing care steve slept downstairs i slept upstairs i always got in bed with him and had a snuggle before i went upstairs because i never knew if it would be the last night we had together but i couldn't sleep with him all night as he was restless, i often got phonecalls in the night from the nurses. steve could catch up sleep in the day time but i couldn't i am sure you are the same the kids need you in the daytime, there is no dressing it up this is a hard thing to do, you are doing ok thou you will get throu this even thou you don't think you will.

mrsmalumbas · 23/08/2008 22:50

Hi MummyDoIt - I have just seen your message and even though we don't know each other I just wanted to say hello - what a devastating situation for you but it sounds like you are doing an amazing job both for your DH and the boys. Don't feel guilty about doing what you need to do to make sure you get a better night's sleep, you need the rest. Sleep well and I hope tomorrow is a better day for you. xx

Lilyloo · 23/08/2008 22:50

so sorry was it your dh who had stomach cancer and secondarys ?
I lost my mum to cancer at 45 so closest thing i have but can understand the helplesness you feeling.

onlyjoking9329 · 23/08/2008 22:54

i meant what i said about emailing me you know, i am usually around in the evenings on MSN and you can phone me, i know how lonely the evenings are and i know the worry and weight of responsibility you are under i want to be able to help you please let me.

umberella · 23/08/2008 22:57

Lots of love to you MDI x

Original poster
MummyDoIt · 23/08/2008 22:59

OJ - I would love to contact you but I've lost your email address. I will CAT you but I'm not set up for that at the moment and need to sort it out. Will do it tomorrow!

OP posts:
solo · 23/08/2008 23:09

Blessings to you all MB.xxx

onlyjoking9329 · 23/08/2008 23:12

This reply has been deleted

Message withdrawn

Gobbledigook · 23/08/2008 23:23

Oh MDI - I'm so sorry to hear this.

You have lots of practical support here - I am pretty useless to you but still wanted to let you know you are in my thoughts.

UniversallyChallenged · 23/08/2008 23:31

Hope you manage to get some rest tonight MDI xx