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Original poster

The calm before the storm

999 replies

Willowkins · 02/06/2018 12:55

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.

OP posts:
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5
Frikonastick · 07/08/2019 10:16

yolo I get what you are saying 100% the two years DH was cancer free, didn’t feel free at all. I have zero advice, but wanted you to know I get it

yolofish · 07/08/2019 12:33

frik we got a nina ottoson one, tried to paste link but looked crap! anyway its got three tiers, you put a bit of kibble in all the slots and the dog has to lift out little bone shaped lids to get them. google brain toys for dogs, there are loads!

thank you for 'getting it', I am struggling at the moment with motivation/wanting something to look forward to. We seem to have been in constant limbo since early June 2018, we are always waiting for 'something'. I hope that will change soon as my DMs house sale will go through in the next couple of weeks. Just want to swim in clear water!!

notapizzaeater · 08/08/2019 18:05

You couldn't bloody make my life up at the min !

The vet rung at lunchtime, they'd got my dog cut everything away ready and the specialised saw that they use wasn't working and they don't have a spare. They have had to stitch him up and bring him round and are doing the op again tomorrow.

Frikonastick · 08/08/2019 21:12

No!!!! Bloody hell nota they better not charge you twice, and your poor dog!!!!! What a thing to have happen

FiveGoMadInDorset · 10/08/2019 20:37

Sorry to have disappeared. The paperwork and sorting the funeral has been ongoing plus sorting two DC's out. I took DD to London on Thursday to get away from it and I am taking DS and his friend on Monday.

@yolofish my DC's were in the same position my sister died three years ago from bowel cancer, my father had issues with his and then DH, they dod look but didn't seem overly concerned with keeping an eye on DC's!

@notapizzaeater your poor dog!

notapizzaeater · 10/08/2019 21:12

It got even worse, they put him under yesterday and the new replacement saw failed.

They've finally done the operation today - we've been to see him tonight, his back end looks like a turkey drumstick. Poor love he was crying, we was crying .......

On countdown now for ct results on Wednesday ....

Is anyone on anti depressants? Not sure if I'm tipping over the edge or it's just so much this last week 😥

You'd think with so much genetic evidence they'd be screening people.

Glad you got away @FiveGoMadInDorset

Frikonastick · 11/08/2019 06:06

Ha! There’s obviously something in the water! Took my dog to get her eye measured with some fancy thing at the main vet hospital on Friday and guess what?!?! Bloody thing broke!!! They were most apologetic, and DD (darling dog Grin ) didn’t need anaesthetic or anything, but what a palaver. And back we will have to go when it’s fixed.

So glad your poor dogs op is over now though.

Anti depressants. Well, two years ago when DH got his first diagnosis and we went through the surgery etc etc, I stopped coping. Went to GP and got prescribed anti depressants. I was on them for about 8-9 months I think. They helped. Mostly in sleeping. I had been getting about 2 hours sleep a night for months and was slightly crazed. Once my sleeping patterns were re established, and I had had a breather from feeling anything too strongly, I reached an equilibrium. Then I spoke to GP about coming off them, and we had a slow withdrawal. And then about 8 months after that I did 4 months of therapy to deal with how shattered my old self was. And to manage my panic attacks which were getting worse and worse. The therapy worked in that regard well, I now am able to steer myself out of a spiral early on, and have hardly suffered from them since. It requires some vigilance though

Sorry. Very long way to say, yes, take the pills. In fact do whatever you think will help you, with no guilt.

yolofish · 13/08/2019 13:17

poor dogs, what a nightmare for you all.

I've been on antidepressants for about 20 years... dont dare stop them, because as soon as I do I start crying at TV adverts and I know that's a bad sign (for me). Very occasionally I take sleeping pills - like maybe once or twice a year? took one last night, and actually slept for the first time in a while.

Whatever gets you through the night...

notapizzaeater · 14/08/2019 14:09

We've been for scan results today and it's not grown, it's stable. The drugs he's on median is 8.1 months before progression so hoping to get to at least that 😊

Hubby is quite down, I think he was expecting it to be gone ?

yolofish · 14/08/2019 21:43

nota he probably was still hoping? but stable is better than not.

Frikonastick · 15/08/2019 06:08

Scootching over to make room for you on the ‘stable’ bench nota

yolofish · 26/08/2019 22:33

how is everyone and the dogs doing? we have had an official letter from the surgeon saying that DH op was a complete success, now just waiting to hear if oncologist wants to see him again - some question over this as he had long course chemoradio. Assuming not, which would be good, he doesnt see anyone again til Jan, with bloods 2 weeks before appt. Which is great, but also kind of a slightly adrift feeling? Like, how will they know if anything is happening or not happening?

Frikonastick · 28/08/2019 01:32

hey yolo dogs fine thanks Grin its a weird limbo isn't it, shuffling further over on the 'stable' bench next to me and nota

notapizzaeater · 28/08/2019 09:51

Eek, that's a long time, I'm fretting at 3 months between CT scans.....

DS and I currently in Menorca - we have grabbed a quick week away, leaving DH at home, who assures me he's ok but he's a typical bloke and only if his leg was hanging off would he go to the doctors .....

yolofish · 31/08/2019 22:09

Menorca, how lovely nota!

DH had a really bad night, bag exploded at 3am... he ended up having to have a shower, strip bed etc. I'm sleeping in the spare room for the last however many months so we dont disturb each other, so knew nothing. It has hit his confidence, and made him really anxious about what if we go away etc. Poor sod.

Frikonastick · 02/09/2019 08:15

Poor DH yolo how you doing with it all?

notapizzaeater · 02/09/2019 19:43

Oh no, poor DH, make sure he asks at clinic next time to see what options there are.

yolofish · 02/09/2019 20:28

They just all seem to say it's early days yet... what is really frustrating him is that nothing happens during the day yet he's up 3-4 times a night dealing with the bloody bag.

yolofish · 07/09/2019 22:25

How's everyone doing? DH has been fitted for a belt for his parastomal hernia (DDs suggesting he should have chosen added lace option!!). Actually getting the bloody thing seems to involve leaping through enormous hoops as the GP surgery dont seem to understand the process the stoma nurse at hospital needs...

Frikonastick · 07/09/2019 23:03

why does everything have to be so hard hey yolo we have been bumping along ok, had oncologist appt last week which I always find stressful. It reminds me of stuff I have spent the previous 6 weeks trying to forget / ignore / block out, and so the cycle continues! But all in all, we are doing ok. Thanks for checking in

yolofish · 08/09/2019 21:10

do you have any feedback frik? everything xd for you.

This is going to sound really really awful and I dont know what to do about how I feel. DH bag is active at night time mostly; he can be up a couple or three or even four times. He wants me to go back to our bed - and I could probably sleep through him getting up if it wasnt for the smell. Emptying bag contents is far more smelly than just going to for a quick shit - sorry to be so graphic, but I just dont know how to cope with that bit of it? any ideas?

notapizzaeater · 09/09/2019 20:01

Ooh that's a hard one, I don't think I could cope with the smell either. Will it settle not be as 'busy' at night ?

DH been at hospital today - still stable

Frikonastick · 10/09/2019 11:14

yolo that’s truly a tough one, does DH want you back so things feel more ‘normal’ or because he finds it distressing himself and wants you there? I think in my relationship with DH I would be honest about my own limits, but would likely compromise to maybe doing weekends with him but week nights not? Because I wouldn’t be able to sleep through any of it, the disturbances or the smell and I would still need to cope for the week.

For what it’s worth, I think it’s totally reasonable to not want to / be a able to do it. None of us can be everything all the time. Shoulder bumps xxx

yolofish · 10/09/2019 22:18

nota stable is good. thank you, and frik for responses. I might try the weekend thing, or the nights when DD1 is not working late (still not passed driving test). OTH, I am quite liking the peace and quiet of the spare room, and being able to watch telly if I want to... will it settle is a very good question, he has the odd night where he doesnt have to get up but they are few and far between.

yolofish · 13/09/2019 14:09

Hospital just called, oncologist wants to see DH ASAP. So we have an appt Monday pm. I am not liking the sound of this at all. Surely if it was just to sign him off (as surgeons said would be the case) the oncologist could phone him, rather than waste valuable appointment time? I suppose he might recommend another course of chemo... fuck it.