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.

Is he feeling better today nota

Hope DH speaks to someone tomorrow yolo. There are so many side effects from chemo, they can almost always offer something to at least help ime.

We are a house of germs! DS3 came down with a cold / cough bug on Boxing Day & has generously shared it around. I took DS2 to the GP today as his has turned into a chest infection. He’s feeling dreadful. I’ve got it & have the most horrendous sore throat. I spent all night last night awake panicking in case DH gets it. He’s away tonight with work & I’ve sent him with the thermometer & checked he’s got his red card. He is totally nonplussed however! I can’t believe he hasn’t come down with it already.

My Mum popped over earlier & told me to sit down. She made me soup for lunch & was generally a star. Since then I’ve looked after DS2 & DS1 has looked after me . I confess it’s been quite nice to be looked after, I spend so much of my life making sure DH is okay & I think my Mum sees that.

Christmas was a quiet one, as dh had d&v xmas eve 😢, then I managed to get a chest infection Boxing Day, thankfully I had a stash of antibiotics in.

We stayed in for nye, it was a strange one, couldn't wait to see the back of 2019 but dreading 2020 even though we had "good" news just before Xmas, the likelihood is that dh won't be here next year

@yolofish dh point blank refused to have any sort of bag even if that meant shortening his life expectancy. We were very lucky when he had his cytoreductive/HiPec that they managed to fix his bowel back together, took them 10hrs though. I really feel for your dh it must be devastating for him.

Still plodding on during DH's break, petrified of everything growing again. He originally went from a mass in his bowel to stage 4 (lung, liver, chest wall) in 5 weeks, so having seven weeks off seems crazy. We are off to center parcs in a couple of weeks so hopefully the neuropathy in his hands and feet won't be. So bad by then.

Sending love to you all

@loubieloo4 it's sooooo hard, DHs primary in lung grew 50% between scans and he suddenly had the brain mets and 4 more suspicious areas in his lung and we've not changed the meds as waiting to check what it's mutated to, we have the biopsy next Wed then it will take 2 long long weeks ,,,,, I struggled with NY as DH talking about next year - it's as if he's blanked what the hospital have said. He's spent all tonight rearranging the garage ??? Moving cupboards, benches etc around almost like he's nesting IYSWIM.

Once he passed the blockage he's felt loads better, I'm concerned as I know it's in the lymph nodes next to his bowel and his meds dont cause constipation they cause the opposite 😢. We seeing oncology next Tuesday, I will be mentioning it.

DH is being such a bloody knob today, he is cross about EVERYTHING. Haven't spoken to him since lunchtime, when he didnt like the sandwich I made and fucking chucked the plate across the table (not that hard, but in temper). KNOB KNOB KNOB. I know his life has changed totally, but so has the rest of ours, and we all make every allowance blah blah and be as supportive as possible, but I've had enough today.

It's bloody hard to keep smiling when you want to hit them round the back of the head with a wet kipper. Gin solves most things ......

thank you nota I have copious amounts of and am still avoiding him. And will continue to do so! hope your DH still proud of blocking the drains, and you get some answers on Tues.

@yolofish

Oh we've had them days, I tend to go for a drive or to my mums for a coffee. It's hard to just take it on the chin. Maybe a glass of later for you

@yolofish how's things today ? Need help digging the patio ? X

thanks nota peace is restored! (no apology but we have moved down from defcon1...) and he has done some stuff he wanted to do so buggered off to bed happy now. everything xd for you for Tuesday, not too long now xx

We’ve been to oncology today, He's got the ebus and bronchoscopy tomorrow to get the sample to check for any mutations. DH (for the first time) asked about odds, Life expectancy etc.

Our oncologist quoted only 50% mutated and because of his 20% kidney function if it hasn’t mutated then there are no more options, she’d keep him on afatinib because she thinks it will slow it down but even with it she says a few months.

Obv if he’s one of the ‘lucky’ 50% then he’d go on the next gen drugs and she thinks 1/2 years. 😢

Then to top it all he's lost his wallet at the hospital with about £200 in and all his cards .....

oh nota what a morning for you both... everything xd for being the 50%, and also for safe return of the wallet.

@notapizzaeater we also had them odds, and theoretically still do, they are bloody scary. Hopefully he is the 50%. It all just seems to come at once. Sorry 🙁

Big hugs @notapizzaeater xxx

Currently at hospital - Dh on ceiling stressed ... yesterday he slept about 16/17 hours - I had to wake him this morning which is unheard of

On a positive note , we found his wallet in the house ....

well good news about the wallet! how long do you have to be at the hospital, does he have to have anaesthetic or anything? (seem to remember DH having EBUS, I went and had a glass of wine in the nearest pub...) have a handhold across the ether xx

He was under for about an hour, then another hour in recovery but his blood sugar (he's type 1 diabetic) was going horrifically low before the procedure so they had to take him in early to the op theatre. So he was 'away' for about 3.5 very very long hours. I walked 5k down into town to distract me then went back to the hospital with a magazine.

He's fine now, just tired (and making a silly whistling noise as he breathes)

nota if the silly whistling noise pisses you off, hit him with the magazine?! glad you've got through today, can you go home soon?

In other news, DH has bought a treadmill which he has installed in our bedroom, next to the radiator. This is so he can allegedly get some exercise, he could have it for free by coming out with me to walk the dog but you know... it will become a clothes hanger in a few days time.

We're home, DH in bed with a huge headache and every med know to mankind to try and shift it.

We had a lovely clothes horse like that a few years ago .....

is the headache due to being hit over the head with a magazine?! I do hope he feels better and you can both get some very much needed sleep

sorry nota I hope that wasnt too flippant and that he feels better today x

Don't worry, I wouldn't have used a magazine, that's why I have a large handbag to hold the frying pan 🍳

He's fine today just very very tired. He woke up at 10.30 which is really unusual and he's had a few Nanna naps this afternoon

lol at frying pan!! nothing wrong with a nanna nap...

Hope you are all well, I've booked Center parcs for half term at a stupidly expensive rate !

Evening, sounds like a really hard week nota. Hope his headache is clearing.

DH had chemo on Thursday, we picked up the boys to find that DS3 (9) was in lots of groin pain & could barely bend down. Called 111 who sent us to A&E where he ended up with emergency surgery for a twist / torsion in his testicle. Came home yesterday & he’s recovering well but what a day. Couldn’t make it up!

We’re looking at booking centre Parcs for half term too but will be the Friday - Monday as DH has chemo on the Thursday. It is extortionate though isn’t it ?!

@Diangled never bloody rains does it. Hope DS is feeling better.

We're going to Sherwood Forest - which one are you looking at ?