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Trying to keep my emotions under control for DH

13 replies

drudgewithagrudge · 29/11/2014 15:38

My DH was diagnosed with bowel cancer in 2013. There was already a secondary tumour in the liver when the bowel tumour was removed. He had 8 doses of chemo, there was talk of a portal vein embolization to reduce the liver cancer and encourage the "good" part to grow but that was found to be too dangerous. He started another course of chemo but became to weak to continue,

The position at the moment is that no further treatment will be given and we have been referred to the Macmillan team and have our first visit on Monday. The prognosis is 3 to 4 months at the most. I was expecting this but it was a big shock to DH who thought he had much longer.

I am coping very badly. DH need me to do everything for him as he is very unsteady on his feet and weak. I am glad to do this even the twice a night visits to the loo which is downstairs and he is unsafe to go downstairs on his own. As you can imagine my emotions are all over the place, I am not one for crying but it creeps up on me, I went shopping in the town this morning and hearing a Salvation Army band playing set me off again.

My children are supportive but friends just say daft things like."Well you know where we are." but nobody visits. The neighbours put a note through the door asking after him FGS. I know people "don't know what to say" to which my answer is talk about the things you would if he didn't have terminal cancer, sport, the weather, mutual friends etc.

I feel like a warder looking after a prisoner awaiting execution and Christmas makes it a hundred time worse. Any wise words from people who are there or have been there would be most welcome.

OP posts:
ggirl · 29/11/2014 15:51

Oh drudge so sorry about your dh. I have no personal experience but a very good friends dh died recently from cancer and I a a community nurse and work a lot with palliative patients .
The Macmillan service also has services for famIly as well , ask about them next time you go . I've known spouses to take advantage of the aromatherapy massages they can do and they're always there to listen to you.
Call up a friend and say exactly what you've said here , if friends know you're happy and want them to call for a chat they will call. My friends husband called me to say to me that no one was supporting his wife as everyone thought she had loads of people supporting her ... I was so glad he called to ask me to speak to her , I would text her and ask if it was a good time to call and we'd have a good chat on the phone while slowly getting pissed .
As for visitors , try inviting people round , explain that you all need a distraction from the shit that is cancer , this will give them the lead and help them to know they don't need to feel awkward.

Bassetfeet · 29/11/2014 15:51

My heart goes out to you . I have not been there but DH has aggressive cancer . I understand the waiting for the hammer to fall .

Referral to Macmillan will help you hugely Drudge I am certain. And your husband . Their support will guide you and your husband ....give some control back and assist with practical stuff that just may alleviate the day to day struggle .....financial advice ....and a listening ear .

So sorry you are going through this . X

whatisforteamum · 29/11/2014 19:20

drudge my heart goes out to you.My parents are both incurable and that is hard enough.My DH had a heart attack and now has tests to see if he has bowel cancer this week(we hope it is all his heart meds causing heavy bleeding).The sad christmas music brings a tear to my eyes too.
I have no idea why people avoid anyone with cancer.Mum has found this hard to take.Your poor DH thinking he had longer too.my parents had Iann Rennie nurses.They gave practical medical and emotional support.They could ring day or night for help.
So sorry for you and your lovely family x

Trooperslane · 29/11/2014 19:24

Xxxxxxxx

Ludoole · 30/11/2014 12:00

So sorry you are going through this.
Is it possible to have the bed downstairs so that toilet visits are easier? Or would he be willing to use a urine bottle?

I have no advice about family and friends as mine seem to have disappeared somewhat since dp was diagnosed.

Hellenbach · 30/11/2014 20:24

Oh Drudge I remember you from our supporting DH with cancer thread.
It's so isolating being the carer, everyone expects you to be superhuman.
Hopefully Macmillan will support you through this awful time.
You really need someone to offload on, please pm me if you want x

lu9months · 03/12/2014 20:34

hi drudge , sending all my sympathies. my husband is 44 and has an incurable brain tumour, though at the moment is ok. we have three kids. i find i get very angry with people if they do things i think insensitive, or dont do enough, but i know partly its just me venting against everyone . i am also overwhelmed by the people who do a lot more than i ever expected of them. i cling on to good friends and family like a life raft. i know what you mean about grief catching you out, it does that with me too. my only advice is to be as gentle on yourself as you can be, let yourself be as sad and angry as you need to be, and talk to the macmillan team who are experienced and helpful.. if you feel you can and there are things you need, ask - i put a message on facebook sometimes just saying - i am feeling crap, is there anyone who could take the kids for a couple of hours, or whatever. people want to be asked but dont know what to do. your neighbour probably wanted to help but didnt know how - put a note back through her door saying , thank you but things are very bad, i am going to need a lot of help and support, thanks for thinking of us. you never know. keep reaching out for help in real life and on here. thinking of you xx

daisydotandgertie · 03/12/2014 20:40

Oh drudge. Bless you. I am so sorry you're in this boat.

I remember you from the DH with cancer thread and know exactly how you feel, and exactly what you're going through. It is an awful place to be.

How did the visit from MacMillan go? Ours were useless - I really hope yours aren't!

wishingchair · 05/12/2014 22:49

Hi- my dh has a life limiting neurological condition. He's is also very unsteady on his feet. We reached crisis point a few weeks ago and now have carers coming in to help. They give me a break I need to get kids to school and just escape - even if just for an hour. Macmillan should have been able to advise on what support is out there - and in your situation, there will be a lot either via NHS or charities like Marie Curie. On a practical note, have you considered urine bottles for night time? Will be quicker and easier. Thinking of you. Letting strangers in to your house to help is really strange but essential. You really do need to look after yourself x

whatisforteamum · 17/12/2014 22:15

Hi Drudge i just wondered how things are for you and your Dh.I hope you have some support xx

drudgewithagrudge · 21/12/2014 16:22

Hi whatisforteamum Dh is much the same. Nights are better thanks to sleeping pills and urine bottle.

Dd and family brought presents today as they are away for Christmas. She had arranged with Dh to get him a card for me from him. It meant a lot to him and to me. Dd is such a kind thoughtful daughter.

OP posts:
whatisforteamum · 21/12/2014 20:20

aww that is thoughtful of her.I am glad the nights are better.Wishing you a happy Christmas and a peaceful one too xxx

SnotandBothered · 23/01/2015 18:47

Hi Drudge. Hope the support Macmillan has given you has helped. Thinking of you and your DH.

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