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.

We’re looking at Elveden. Think we are just going to book it tomorrow. We’ve definitely reached ‘fuck it’ status!

Hope everyone else enjoying a good weekend

yay for holiday bookings, and hope your boy feeling better djangled - just in time for back to school on Monday?!

We've had a mixed w/e, lovely night out with DD2 yest to see 1917 and then pub meal but catastrophic bag disaster this afternoon. I feel so sorry for DH when it happens, it's so upsetting for him and every time his confidence takes another knock. But we are going to France in March to see DD1, then Antwerp with friends for a gig (David Gray) in April, so we have stuff to look forward to.

I think you are all onto something here with finding or organising things to look forward to.

@Frikonastick def need something to look forward to ....

Ooh France sounds fab @yolofish - poor DH again, just be so demoralising for him.

We having the drive extended tomorrow, DH is going down the list of all the jobs we are going to do in the next few years and trying to get them all done ...... it's costing a bloody fortune but we're def in the fuck it camp too !

Off to see the kidney specialist tomorrow - what a fun life we all lead 😂😂

oh yeah, the 'fuck it' camp. We are currently spending a bloody fortune on the house, basically all of my inheritance from DM.

Two reasons: one because it bloody needs doing and two because if DH dies I need to sell for the highest possible price. I'm obvs hoping he won't, but you never know what's around the corner, and I spent a lot of time pre-surgery agonising about what I would do/where I would go etc etc. As I am sure you all have.

And yes, we all need something to look forward to! hope kidney man is ok tomorrow nota

Another one here in the fuck it camp, we are going to Woburn Center Parcs on Monday 😊 it will be our 23rd (over 21 years) visit and possibly DH's last, so we booked a treehouse! Ouch at the price £2000 but we booked it the day we were told he was terminal back in August. We were hoping that the life insurance would have paid out in time to pay for it but nope still waiting 🤬 it's gone on DH's credit card.

Can't wait it's just what we all need, our best friends and the teenager are coming to.

We are still on a break "limbo land" worrying, me anyway like mad that it's spreading like crazy 😢

Ooh, I'd love to stay in the treehouse !

We've had a bloke in today fixing spotlights into the ceiling and the ceiling being plasterer tomorrow. Keep telling DH We need to stop ! ..... money tree only goes so far !

that sounds amazing loubieloo!

nota how was the kidney appt?

we are shaking our magic money tree as far as we can... what's the point otherwise?

much love to all

@yolofish kidney appointment was fine, it was just a check up so no change. Doctor amazed he's still working

good news nota even if only a check up it's still reassuring.

DH been an absolute knob today for reasons known only unto himself. I am considering burying him under the patio, although I know not entirely within the spirit of the thread!

@yolofish how is he today ?

I struggle to moan (for that read nag) at DH now tbh but every now and then I snarl. I've found It changes the whole dynamic 😡

nota he has been in a better mood today thank you for asking. I (dont think I) ever moan, but he is short-tempered - always has been and I dont stand for it and will call him out on knob-ism. Told him that having cancer does not give him a free pass to be a knob... most of the time I just try and go in another room!

How is everyone doing?

Knob City Central here, everything I say/do/don't do is somehow wrong. Asked him tonight why he is being so antagonistic (DD2 said wow that's a brilliant word!) but will never get a straight answer. So I am avoiding if I possibly can, which is horrible, but better than starting WWIII.

I blame chemo, finishing cycle 6 on Friday and then only 2 more to go. If he doesnt shape up after that he'll be bloody toast!

@yolofish its a bit of a thing apparently. some of it can be just sort of giving yourself permission to be a dick. Mostly though its usually down to the level of disassociation the person is feeling, which is much more prevalent in the person who is ill rather than partners. Our therapist talks about it sometimes. its shit.

Thanks frik I've googled chemo rage and think the best thing I can do is just absent myself, either mentally or physically, when he's like this. There was a very telling piece where it was talking about "the person can be the life and soul of the party and totally charming with others, but reserves the attacks for those closest to them". This really resonates with me, everyone says DH is so marvellous blah but they dont hear some of the shit he comes out with sometimes. Also, and this is petty, but he BREATHES annoyingly when he's cross - before he starts the "omigod do I have to do everything myself" and then moves into the "you're useless" phase. sorry rant over.

It's fine to have a rant, it's so hard - it totally changes the dynamics of the relationship.

Thanks nota you're right the dynamics have changed. But I feel I shouldnt rant too much here because at least we have a strong possibility that DH is 'cured' and I know that's not the case for others....
OTH the fear never goes away does it.

Hope you all having a good weekend, we've all been out for breakfast which was lovely

We have no children this w/e - DD1 in France chalet girl-ing, DD2 in Cardiff with boyf at uni. It is remarkably peaceful, not worrying about DD2 driving home safely and all that stuff. We've just watched a prog about music vids in the 80s - so nostalgic, that was when we were bright young things!

Don't think i will sleep tonight ...... the results are at the hospital, they are having an MDT meeting tomorrow and we should find out in the afternoon ........ if I bit my nails they'd be gone !

everything crossed for you nota it's so hard doing the waiting bit

The Ebus procedure DH had didn’t get enough tissue to find out if it’s mutated / he’s being referred to Leeds where they will properly put him under and do a navigational biopsy - first appointment will be to discuss then then op then the bloody 2 week wait again .... not good if we are looking at the worse case which was a few months 😞

oh nota that is so bloody frustrating. how is he feeling? and you? xx

Angry, realistically it will be at least a month - we need the first appointment, then pre op, then the procedure then the 2 week wait !

jesus... that's an awfully long time. Can you kick ass with someone somewhere to move it forward? (I mean, I know you probably cant as wheels do go slow but is it worth a try?) for you and DH xx