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Life-limiting illness

Flat and angry

32 replies

Ludoole · 25/08/2014 20:30

Dp has his appointment thursday where we will find out the full extent of his bowel cancer and how much it has spread.
We also find out if they will be giving him palliative chemo.

He seems to be handling things quite well (we talk a fair bit about his illness when he wants to).

I seem to have adopted a cheery positive attitude when talking to anyone about his illness but inside i alternate between feeling completely flat and raging with anger.
I hate that our longterm plans have been ripped away from us. I hate that other people we know dont understand how lonely this illness has made us. I hate people telling us to enjoy every moment together - how can we do that knowing that hes going to die???

I feel utterly selfish for venting about other people. I know they just dont understand or dont know what to say but neither do I...

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Ludoole · 25/08/2014 20:36

Just realised how contradictory I sound!! I put on a cheery facade and wonder why nobody can read my mind Hmm

I dont think anyone can win with me when im so muddled in the head...

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NCISaddict · 25/08/2014 20:40

Flowers I have no direct experience of this situation but it sounds like a totally normal and understandable reaction and if you were my friend I would hope that I would give you all the space and understanding I could.

MsAstronaut · 25/08/2014 20:41

That's awful, I'm so sorry you're going through this. Your feelings are all understandable even if they are contradictory. I don't think anyone knows how they would handle it if it happened to them. But you have enough to deal with – it's not your job to make other people feel better. You and DP have to just proceed in the way that's best for you.

I know there are people on here who have experience of this situation and hope they will be along soon.

Ludoole · 25/08/2014 21:05

Thankyou to you both Thanks.
It feels like im going out of my mind sometimes.

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fortyplus · 25/08/2014 21:09

I think when you're going through something like this you're on a runaway train and it's hard to keep a grasp of normal life. I've just helped a friend through her husband's short illness (2 months). She phoned me when he died (at home) and I went straight round. About a week later I made reference to some of the events of that morning and she looked at me blankly - she had no recollection of it at all - it was as though she'd wiped it from her memory.
Be kind to yourself Thanks

ggirl · 25/08/2014 21:13

I have some experience personally and professionally of this. I think it really is so hard for people as they're terrified of saying the wrong thing and offending people. You may find it helps to open up to people and say exactly how you feel , much like you've done here. Tell them what you need , when you'd like a chat .
So sorry you're going through this .

Ludoole · 27/08/2014 02:04

I talk to my mum but she has enough on her plate (my dad has alzheimers).
Real life support is crap. People "aaahhh" but then forget or else dont give a damn.
I know I only have dp to open my heart to, but I cant share fears with him. I need to be positive when I talk to him as hos struggle is so much worse than mine.

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Ludoole · 27/08/2014 02:05

Him not hos.... bloody phone!!!

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Doyouthinktheysaurus · 27/08/2014 03:38

What you are going through is shit. A few years back I had cancer and I really struggled with people's sympathy so put on this cheery front that I hid behind. Then I resented people for not being there for me Confused I used to fall apart on poor dh while continuing the facade of everything is fine to others, especially family as I didn't want to burden them. Of course it worked too well and my brush with cancer became no big deal to those around me.

You are going through a horrific time and my only advice would be to let people know you are struggling. When they ask how you are, be honest. Their initial reaction may be platitudes but they may then take time to reflect and step up a bit. You need support and sometimes you need to spell it out to people before you get it.

Cancer is a bastard illness, I'm sorry for what you are going throughThanks

GertieFinkle · 27/08/2014 04:21

Oh ludoole - I am very sorry that you have been dealt such an utterly shit hand. Do you have one or two close friends that who you could confide in?

Put the shoe on the other foot, if your friend's husband was very ill and your friend was putting on a brave/cheery face would you want her to open up to you about your fears and anger so that you could really help her?

I feel for you, I have read other people in similar situations saying they almost daren't voice those emotions because once they start the floodgates may open and they won't be able to stop. I just think for your mental health that sometimes those gates need to be opened and that if you do that with a good friend they will be able to help you shore them up (so to speak) and make them stronger.

Fwiw in your situation I'd be feckin furious too at the unfairness of it.
((Enormous hugs))

PurpleWithRed · 27/08/2014 05:01

Your Dps cancer is outrageously unfair. Vent away.

Eyespy24 · 27/08/2014 14:01

I'm very sorry to hear about your DP. It is such a horrible thing to deal with. My mum is going through palliative chemo for advanced bowel cancer at the moment.

It is so hard to know what to say & I hate it hanging over all of us constantly. There is a very supportive & informative forum on the beating bowel cancer website.

I hope the news tomorrow is as 'good' as is possible.

Ludoole · 28/08/2014 01:48

Thankyou to all who replied.
Unfortunately i have nobody in real life to talk to...
I had a best friend for 7 years. I was there for her through a lot of her rough times (as she was for me).
I put off dates with dp during that time to support her and now sonce shes found someone and got married, she doesnt seem to want to know.
She asks when she can call so I tell her when I'll be in but then hear nothing.

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Ludoole · 28/08/2014 01:56

Dp and I have each other and I guess that is enough.
When hes gone however, there will be no one to talk to. Its scary to think that.
On really bad days I think I could follow him when he goes but I have 2 beautiful boys and it tears me apart the thought of leaving them. Dp is the love of my life and I dont know how o will go on without him.
Cancer is so fucking cruel. I hate it and I hate that its got such a massive hold over our future.

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Eyespy24 · 28/08/2014 08:37

Thinking of you today.
Cancer is truly vile.

Eyespy24 · 28/08/2014 09:06

Also if you're on twitter there is a very supportive community there.

Ludoole · 28/08/2014 17:38

They are starting dp on chemo as soon as his wound has closed enough Smile
He was so worried they were going to tell him to go home and put his affairs in order...
He's feeling much more hopeful that we will get longer together now.
Thankyou all for the kind words.

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Eyespy24 · 28/08/2014 18:09

I hope chemo goes well. Do you know what he's having? My mum is on folfox & coping incredibly well. She's just over half way through 12 cycles.
Fingers crossed for minimal side effects & that it's effective too.

ggirl · 28/08/2014 18:16

Hopeful news Ludoole , keep us posted .x

Ludoole · 29/08/2014 03:18

Eyespy hes apparently having Oxaliplatin, Xeloda and Avastin.
Right now im just pleased that since he's been out of hospital hes put on 1lb 4oz! He used to be 14 stone and now hes 9 stone 4lbs. He looks like a bag of bones but he's still gorgeous!

Im hoping to build him up a bit before chemo starts.

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Eyespy24 · 29/08/2014 20:21

Crikey he's lost a lot. My mum has always been pretty slender - not many pounds to spars & I was worried she'd waste away on chemo but she's managed to gain about a stone, which is great.

You're doing right to build him up a bit beforehand if you can. I think what happens with weight depends a lot on whether sickness is an issue. It was only once for my mum & only because the nurses forgot to give her the right meds at one of her chemo sessions. She's also on avastin.

Where has the cancer spread to? Is surgery an option for him if not now maybe after chemo?

Musicaltheatremum · 31/08/2014 18:38

I'm sorry you're going through this. My husband died aged 50 to a brain tumour he had had for several years but the last 6 his memory was affected and I lost him little by little. It is hard and I got very angry at the situation. Do you have a Maggies centre or a Macmillan nurse you could talk to. I spent a lot of time over the years talking to various people about how I felt. I didn't want to talk to friends as I didn't want to tell everyone how I was really feeling.
I hope all the chemo goes well. You have a tough road ahead of you, but there is support out there to help. The initial phonecall is the worst.


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Ludoole · 01/09/2014 03:15

Eyespy the cancer has spread to liver and lymph nodes. They removed what they safely could in emergency op when the tumour ruptured the bowel (thats how we found out it was cancer)

Musical ive always found it difficult to talk to people I dont know. Dp is the only person I have ever instantly connected with.Its so hard to talk to anyone other than him... I'll be strong while hes with me but its when hes gone I know i will want to follow him. Thats frightening as I have 2 ds' s. I just don't know how I will live without him. He is my everything.

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theclockticksslowly · 02/09/2014 04:00


So much of your posts strike a cord with me and how I felt (and feel) when my DH became ill and passed.

Feeling like other people didn't get it, were saying stupid things ("just stay positive" - uh what's to be positive about? Don't you understand how serious this is?!!). That made me very frustrated. I tried to tell myself that they don't know what to say really, never been in this position.

Your comment about your DP being the only person you've instantly connected to and that you can talk to - I could have written that about my DH. I had similar thoughts (still do to be honest - coming up to a year on) and it's just our DD that's kept me going. I think the worse part of it has been the loneliness and not having my best friend my husband here to talk to.

I probably don't have anything useful to add to what PPs have said but wanted to say do take time to not be strong for a change. You need to let your emotions out. Even if it's in an empty room and you have a good scream.

Ludoole · 03/09/2014 00:08

theclock I'm so sorry you lost your dh Flowers
It really is a heartbreaking position to be in.
Im so glad you have your daughter to keep you going. My boys are 11 and 14 so I know I have to stay around until they are settled as adults but I do wonder how I will go on when I lose dp.
Im so glad that he has me with him through this though. I hate what hes going through but im so grateful that we have each other for now...

Thankyou so much for your response. I hope you continue to take each day at a time.
The way you speak about your dh is so similar to how I feel about dp that I know you must have loved (and still love) each other intensely. I hope you find peace within eventually. X

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