The calm before the storm

[Willowkins]

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

Shit news !

Without treatment 6/9 months, with treatment 1/2 years. Won't know for 12 weeks if treatment is working 😭

Just been numb all day. DH taking it better than me. He can't have immunotherapy or chemo so options limited if it doesn't work.

One of my friends has had a stoma for over 30 years and in the scheme of things it's not the end of the world.

And there you have it pizza - the very reason I started this thread. I'm so sorry you're in this situation. It's weird isn't it, the finality of it all? And grieving for a man who is very much alive? But slowly we adjust. Days become precious; years an impossible dream. The numbness fades and priorities shift. Treats become necessities: why not enjoy that overpriced coffee? take a trip on a boat? Just listen to each other? Because the future we thought we would have is here now and we have to make the most of it.

I’m not sure if this is the right place to post, but I’ve been lurking for a while, and i needed to try. DH has a rare form of incurable kidney cancer. With meds, 10% of people don’t make a year. 10% of people make it to 5 years. 80% of people fall into the 1-4 year category. We found out 4 weeks ago. Unfortunately for us, we live in nz and the drug treatment is not funded. So we are having to make huge changes to try pay for as long as we can. I’m not sure what to say to convey the depths of my anguish

@Frikonastick so sorry to hear this. I've spent hours and hours googling and researching stuff.

I'm still numb, my DH is ready to start fighting, the side effects look horrific so got that delight. Hopefully meds be here today to start tonight. He's a phone call with the medical insurance specialist tomorrow and we will see if he agrees with the treatment regimen.

It's bloody hard, you're scared for them and for you.

Yes, exactly, scared for him, me and our 10 year old DD. DH has started on his meds already, 5000 UK pounds for a box of 28 tablets. It’s all so surreal. As willowkins said, the grieving for a man who is still alive, the massive cognitive dissonance of holding theses two opposing realities in your mind, I feel like I am an entire galaxy of emotion and thought squeezed into a space the size of an egg.

Ouch that's bloody expensive. Can you import them cheaper ? Charities ? I know DH drugs are £2300 for a month plus the extra drugs to counteract the side effects.

No, to both options I’m afraid. NZ vastly different to the uk. It’s 11pm here, DH sound asleep next to me, and this is my worst time. Can’t switch my brain off

Thanks for delurking Frick you're welcome here.
We are so very very lucky to have treatment funded by the NHS.
I hope you are able to raise all the money you need and you're one of the 5year+ 10%

I am so sorry notapizzaeater and frik, that puts my worries into perspective. whatever you need to help you through.

Thank you for your kind words last night (for me) I slept really well! Am today undertaking the weird task of ordering thank you cards off the internet for sending out to people who have given us money or waived bills. So hard to chose something appropriate, thank you cards seems to fall mostly in the wedding category. They all feel either inappropriately cheerful, or somber (florals) or too formal. Am going to have to pick something! Bloody hell. How is this my life?

glad you slept frik that makes a huge difference.
Think we are currently going down the bag for life route unless tomorrow's MDT meeting comes up with different options. DH is 56; we both agree that double incontinence for the foreseeable future is not an option he would choose. I know, from what you guys are going through, that we are lucky to have that option - so the first thing is to get rid of the bastard tumour, and secondly to have quality of life.

None of these are options we would choose but the alternative isn't really an option 😭

How quick will they do it ?

DH started his meds last night up to now been ok.

MrW is going into hospice for a couple of days to manage his symptoms. The plan is for him to come home after that - but this feels like the beginning of the very end. He is a shadow of the man I married

They can hopefully get a lot of his 'stuff' under control at the Hospice so he can return home, one of my friends was in and out for ages - was so much better after each visit. (((Hugs))) x

So sorry to hear @Willowkins .

I haven't posted much but think you're doing amazingly well during such a difficult time.

I do hope the hospice is able to sort out his pain and any other symptoms.

willow much love to you all xxx

willow am thinking of you all and sending positive thoughts your way, have been following your thread for a long time now x

Oh Willow, I always wonder how you are getting along
Much love ❤️💐

Thinking of you and MrW. x

Thinking of you all, passing round virtual shoulder bumps in solidarity xxx

@Willowkins hope DH had a settler night x

Thank you all for all your kind wishes - and Frik I love the idea of sisterly solidarity. That's what this is all about.
So, MrW is comfortable and they have a plan to help him. I really think he's in the right place to get the treatment he needs. And it's a lovely place with lovely people.
Meanwhile, my MIL has been upsetting people. She likes to make it all about her but I'm just too tired to get into the drama.
Thanks again for all the positive support I get on here. I hope for a better tomorrow for each one of us.

willow the last thing we all need is added drama. But glad Mr. Willow seems to be in the right place for now.

DH dropped in on his parents on Thurs, very old family friends there. They are 'considerably richer than yow' to quote Harry Enfield. Anyway, she's had bowel cancer, absolutely dreadful, marvellous treatment - stage 1!! DH said even his parents were looking shifty...
Colonoscopy this week, then current plan is surgery the week after. Only we still dont know yet WHAT surgery.

yolo I know. So many people think that telling you about their friend/family member/colleague/someone they met on a train who had a (completely different) cancer (with no mets) and they're fine now, will actually help! What it does do is stop them listening - and I think fine, you don't want to hear bad stuff but then why did you ask? Sorry for the rant. I was literally pulling my hair out last night.
On the other hand, someone just offered to cook me lunch. A random act of kindness goes a long way
I hope you get the news you want and need this week.

@Willowkins

Absolutely- my DH phone his toxic parents this week to tell them and all she could go on about was a distant cousin who's just had surgery for the same - errr no his is inoperable and her bloody hairdresser who has just been to Bolivia and had to visit the hospital. Aaarrrggghhh !