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I'm not OK

(464 Posts)
Willowkins Sun 26-Mar-17 14:17:55

My lovely DH was diagnosed with Stage 4 cancer with mets in the liver and lungs last year. After 6 long months of chemo we have the scan and results this coming week. I have been holding it together all this time. The thing is I suddenly realise I am not OK. I know this sounds selfish and this shouldn't be about me but I feel so sad. I was listening to Run by Leona Lewis and I just burst into tears. Also, I've realised that I need everything to be perfect to feel safe but of course it's not perfect so I get really cross. I wanted to punch a man in his car earlier today. This is not OK is it?

INeedNewShoes Sun 26-Mar-17 14:23:47

Willow - of course you're not OK, and nor should you expect yourself to be ok. Do you ever allow yourself to talk to friends, your GP, anyone, about how you're really feeling?

You've most likely got into your head that you always have to be the strong one, but that's not possible all the time.

I'm really sorry you're going through this. Its not something I've experienced myself so I imagine some other posters will have more practical advice than I can offer.

notapizzaeater Sun 26-Mar-17 14:25:35

Have you spoken to anyone ? Had counselling ? It's hough holding it together and we can only do it for so long

plutohasfeelingstoo Sun 26-Mar-17 14:25:37

Gosh op I'm so sorry to hear about your dh. How incredibly stressful for you all. How on earth you keep your shit together at all is absolutely beyond me, please be kind to yourself and know those feelings are beyond valid flowers

user1460579591 Sun 26-Mar-17 14:55:52

Oh Willowkins - it's so similar for me. My husband has Stage IV bladder cancer, mets in lungs. He has been suffering desperately with a painful hip - and we were told on Thursday that it's NOT damage from the op, like they said, but an earlier CT scan reported 'highly likely' to be mets in the pelvic bone. So it's been missed. He's having radiotherapy this week. Walking is agony.

Like you I'm angry. He's never smoked, been overweight, rarely drinks and was fit. It's not fair. I'm tired of the cancer roller-coaster, where you have a few weeks of being as normal as possible then try and cope positively with the post appointment verdict, where they usually seem to confirm your worst fears.

I'm a trained now retired counsellor and am taking my own advice given so often to others: Walk in the fresh air/hail/rain/gale force wind/sun and scream at the Universe. Heavy exercise, eg spinning, when I can.

And maybe there will be something positive for you from the next scans, etc.

Willowkins Sun 26-Mar-17 14:58:42

Thanks for responding you lovely MNers. I NEVER cry (or punch people) so I know this is not normal. I have had counselling before but the counsellors always tell me I'm doing brilliantly hmm. I have other people I talk to in real life but you're right about me trying to hold it together for everyone else. I thought I was the captain of this ship but I realise now it was always the cancer.

INeedNewShoes Sun 26-Mar-17 15:01:57

I think sometimes you have to be frank about how you're feeling.

I am blessed(?) with being programmed to look well and sound upbeat whatever is going on so I've realised that on the occasions that I do need a bit of emotional support that I have to be very clear about that, because otherwise people just think I'm fine.

Chasingsquirrels Sun 26-Mar-17 15:03:33

Oh Willowkins sweetheart of course you are not okay.
Cancer is a fucking harrowing road to go down - for both the patient and the carer. I've just spent the last year travelling along it.
Have you got RL support?
Maggie's Wallace centre at the hospital?

Waiting for results is just draining, I hope you have positive outcomes this week.

And then it's little things, my DH 'repaired' the loo roll holder which then fell off the wall. And I sat on the toilet and sobbed and sobbed.

Get some support for YOU.

Willowkins Sun 26-Mar-17 15:06:17

User1460579591 so sorry you are going through this too. flowers I understand completely about the rollercoaster. I remember at the beginning hoping and hoping with each consult that this time it was going to be good news - that it would not be cancer, okay it was cancer but not spread, okay it was in the liver but could be operated on. I have learned not to hope. Your ex-counsellor skills are still good. I think I'll go for a walk in the sunshine.

Chasingsquirrels Sun 26-Mar-17 15:07:53

And support doesn't have to be councilling - I saw a lovely bloke at Maggie's but TBH it didn't really help much. And people telling you that your are doing fantastically - and you just want to shout that you are falling apart, but you are the one holding it together and can't. Is there anyone you can tell it's too? I did actually tell my DH, it didn't change anything because he couldn't help me. But it helped me to talk to him.

picklemepopcorn Sun 26-Mar-17 15:18:34

Ah, but you are doing brilliantly. You can be doing brilliantly and not be 'ok'. You haven't punched anyone, and are still getting out of bed in the morning. That is as good as it gets in the circumstances. You do need to look after yourself, as best you can. Your GP may be able to help.

Willowkins Sun 26-Mar-17 15:24:12

Chasing I've been following your thread so thank you for thinking of me when you have been going through so much. The loo roll holder is just another reminder that he's not there. Grief finds a way. flowers

Willowkins Sun 26-Mar-17 15:26:45

Pickleme thanks you made me laugh - indeed I haven't punched anyone - the very thought!!! Oh yes, I did think that didn't I blush

picklemepopcorn Sun 26-Mar-17 16:28:00

Run makes me cry too. Even when it isn't Léonie Lewis singing it. I hope you get some reassuring news this week. You will be strong enough to manage though, you just will. But this will be a safe place to come and flap and cry on the days you think you aren't.

Chasingsquirrels Sun 26-Mar-17 16:32:41

The loo holder was last year, just after the diagnosis as he went into a crisis. He "fixed" it then went to bed for a rest, I went to the loo and it fell off the wall. And I just fell apart. Then I pulled myself together and fixed it myself.

And thinking things is not a problem - punch that man in your head (but only in your head).

user1460579591 Sun 26-Mar-17 17:26:26

Chasing : yes, I followed your and Juan's threads knowing this was going to be our story too, and marvelled at how you were both appearing to keep so strong.

My husband has fixed in place a storage type thing - but not really just where I wanted it. No way it's going to get changed, it would feel like a betrayal.

'Appearing' to be strong is probably the operative word. Big group hugs and flowers for anyone going through this walk in an unknown, scary forest.

New experience for us tomorrow in the Rosemere Cancer Centre where he goes for the RT assessment. Wonder if the coffee will be good?

Willowkins Sun 26-Mar-17 18:01:19

Well, I have been for my walk. Came to conclusion that cancer is not the captain but a pirate. Chasing sorry I assumed because that is just the sort of thing that I would do (the loo roll holder in our shower room is VERY wobbly). User not sure what an RT assessment is but hope all goes well. DH has CT scan tomorrow and then results later in week. I will try to update then. Thanks all for your support.

Chasingsquirrels Sun 26-Mar-17 18:06:53

Has he had a CT before?
It's very quick, but need to drink lots of water beforehand.
Plus have a canula in with something that makes you feel like you need to pee - but don't
Hugs x

user1460579591 Sun 26-Mar-17 18:20:03

RT is radiotherapy. You have an assessment, including CT scans, they tattoo where they're going to focus the beam.

He was quite excited at the thought of a tattoo - a Red Arrow Hawk please, he said - quite disappointed when told it would be a small dot. Such is our joint sense of humour.

What is the chemical they use to give the feeling of needing/having to pee? And I wonder how they found out it worked?

Chasingsquirrels Sun 26-Mar-17 18:23:05

John's radiotherapy dot just looked like a blackhead.

user1460579591 Mon 27-Mar-17 11:07:33

Just checking in Willowkins to say hope goes/is going well with the scans. Your pirate analogy made me laugh - my husband fell last week so has a black eye! And then with his dodgy hip - Long John Silver?

We're just about to set off to the Rosemere Centre.
chasing yes that's what they said to us, that it's like a blackhead. My husband felt quite disappointed! Hope your day is going as well as it can.

Willowkins Mon 27-Mar-17 14:17:12

Thanks for explaining that. This will be his 3rd CT scan so I think he'll be ok but I'm going with him to sit in the waiting room anyway. As for RT I really should have known that one. So far he has only been offered chemo/immunotherapy but we'll be discussing options when we see the consultant.

Willowkins Tue 28-Mar-17 17:41:26

Just heard our appointment with consultant put off for two weeks. I feel numb.

user1460579591 Tue 28-Mar-17 18:15:25

Oh heavens that is awful.

Have you been given any feasible reason for such a delay? We've been told there's a huge backlog of scans waiting for Radiologist report. My husband's is now 5 weeks' late.

The RT assessment went really well though. We arrived 45 minutes early - 20 miles away via a motorway often jammed so best to factor in all likelihoods.. Staff so good and kind - and we were leaving, him duly tattooed, at time due to be seen. RT blast tomorrow.

I find it's this constantly trying to be positive that's so draining - huge flowers and cake.

picklemepopcorn Tue 28-Mar-17 18:22:48

brewcake for willowkins and user, to fortify you for the coming days.

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