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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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yolofish · 28/11/2019 21:28

oh I am sorry, for you and him, and especially re the kit car - his dream I expect? sending you much love and as much hope as possible xx

Diangled · 28/11/2019 22:00

The not driving must be awful & another thing to be taken away from him. Another insult from cancer :(.

DH had his first chemo of the new regime today. So far so good. When I sit there with him it’s bizarre because we chat & joke as though we are out somewhere nice Confused! The nurses were all lovely as usual. I think I also feel as though I can relax when he’s there as someone else is looking after him & I can lose the high alert for a couple of hours. All very odd emotions. He’s feeling perfectly fine tonight, hoping it stays that way.

Love to all.

yolofish · 30/11/2019 21:08

Fucking exploding colostomy bags... last night and this evening, shit literally everywhere. Poor bloody DH. Last night was all over the downstairs loo and then again all over the ensuite, tonight was 'just' the ensuite. He was crying, and I feel so sorry for him. He didnt sleep at all last night for fear of another episode, and I doubt he will tonight... on day 2 of the 4th cycle of 8 capecitabine. I dont mind the cleaning up, but it upsets him so much... love to all

notapizzaeater · 30/11/2019 22:21

@yolofish - poor DH, must be so humiliating for him 😩🤬🤬

Honeyroar · 30/11/2019 22:40

Oh bless him Yolofish. It’s because he’s so tired. My husband has a bag, but not down to cancer, and it’s bad enough when it blows when you’ve full health.

yolofish · 01/12/2019 21:16

he did sleep last night, and today has been quiet bag-wise. so hoping it stays that way and he gets another night's sleep. apparently jelly babies are the thing for firming it all up?! chemo doesnt help with the, um, liquidity.

Diangled · 02/12/2019 15:10

Poor DH yolo sounds really distressing for him. Glad he got some sleep last night.

pizzaeater hope you’re all doing okay after last weeks news.

DH not having too many chemo side effects yet, just a bit more tired than usual. DH is also on hormone treatment for life where they remove his testosterone. It’s that that is most distressing for him. He’s always had wide shoulders & muscly arms / legs but they are visibly going now & he hates it! That upsets him more than the radio / chemo which I understand as he doesn’t feel like himself.
We put up a ridiculously huge Christmas tree yesterday (they always look smaller in the field!), so the house looks festive. Wanted to get it done whilst DH feeling okay to help / enjoy.

Hope everyone else okay.

notapizzaeater · 07/12/2019 10:57

Have we all had a good week ? We're still in limbo land waiting for the MDT meeting results, we at oncology Monday for our 'normal' appointment so hope to find out more then .....

yolofish · 08/12/2019 20:02

fingers xd for tomorrow and some good news nota.

We went to a friend's 60th birthday party last night, a long way from home so we booked into what was quite possibly the world's shittiest hotel (but it was cheap and convenient!) We were at the party for about 2 hours, having a great time, party just getting going and then - bag disaster, involving complete change of clothing for DH, me cleaning up my friend's bathroom, just horrific. So we went back to the shit hotel - he was anxious, embarassed, and it just makes me so sad for him. Friend didnt mind, of course, but his confidence is shot to pieces. I mean, yes he is supposedly well and the current chemo cycle is just a precaution etc etc and it feels bad to moan here when I know you are facing much much worse, but ... is it ok to say it's still shit?

Honeyroar · 08/12/2019 20:15

It’s so tough for them Yolo. My husband can be like that and he’s not on chemo. I’m working over Xmas (am cabin crew) and he can come away with me v cheaply, but he is really worried about flying and going through security. I don’t think he is confident enough to come. And he’s not had a big bag mishap for a long time.

yolofish · 08/12/2019 21:51

honeyroar we are flying to Italy in June for a wedding followed by holiday - our first in several years, and he is already anxious enough about it...especially security and taking his bag stuff through. He is on a FB colostomy group, and they do have quite helpful advice and he sounds as if he is lucky compared to what some people go through. Last night was the first night he's been away from home since surgery, and it was meant to be a trial run - not a great success.

It's really hard to find a way to build up confidence... hugs to you and your husband.

Honeyroar · 08/12/2019 23:21

Yes it’s the security bit that’s worrying him, plus the fact that when he’s on standby, which he would be, he only gets given a seat at the last minute and has to rush through security and to the gate, which can be stressful even without the bag. I really don’t think he’s going to come. 😟

Where are you guys going in Italy? I used to work there years ago (Tuscany). I love Italy. I’ve been a long haul stewardess for two decades, and seen some amazing places, but Italy is still my favourite. I hope you will have a lovely time.

notapizzaeater · 09/12/2019 08:19

It's fine to say it's just shit, because it is !

I've had an interesting weekend - norovirus anyone ? Weekend full of shit and puke, scrubbed the upstairs carpets yesterday - my 17yr old projectile vomited everywhere - starts, Landing, bathroom, bedroom, full washing basket and of course his last meal was curry 🤢🤢🤢

Not allowed DH anywhere near it - that's the last thing we want !

notapizzaeater · 09/12/2019 14:50

Rubbish appointment ......

DH got 6 lesions on his brain - lungs have started growing and he’s got some more tiny tumours growing .... he’s on the border criteria for gamma ray treatment on brain - they sorting an appointment out to see radiology in Leeds to discuss. Needs another biopsy this week to see if the primary has mutated - if it has then there’s a possible treatment to buy a bit of time

Honeyroar · 09/12/2019 16:14

Fingers crossed it has notapizzaeater. You sound like you are having a shit week.xx

yolofish · 09/12/2019 19:06

nota have a bloody great Wine and a few deep breaths. Sounds like more awful waiting xx

notapizzaeater · 09/12/2019 21:54

I've had a bloody big Baileys ....

yolofish · 09/12/2019 22:18

good plan nota do you have room for another one?

I need to go to bed, DH had a very anxious day alhough nothing happened... I am drinking and smoking way too much. love to all xx

notapizzaeater · 10/12/2019 20:04

Finally a tiny bit of good news. DH starts gamma knife treatment on Friday ...

yolofish · 10/12/2019 22:35

excellent news nota I hope it is successful xx

chinchin77 · 11/12/2019 02:48

Hi there - a recent lurker as my DH recently diagnosed with stage 4 stomach / osephegus cancer. Started chemo and it's all just shit. Still I am finding some solace that I am not alone and finding all your posts helpful / therapeutic in a cancer sort of way Blush

notapizzaeater · 11/12/2019 07:40

Welcome to the party none of us want to be it, feel free to vent, lean, shout cry and generally live !

TheFuzzyStar · 12/12/2019 20:05

Hi, I’m not sure if it’s ok for me to post on here? It’s not cancer but my husband saw a thoracic consultant 3 weeks ago and they think he has pulmonary fibrosis. We will know for sure when we see him again on the 22nd jan after CT scan and another breathing test.

It’s a progressive lung disease and from my research, max. Life expectancy after diagnosis is 11 years.

I am not coping well with waiting, it’s such a long time to wait. I am worried about how we tell the children. They are 2, 11 and 13. I just thought you ladies may have some advice about that. X

Frikonastick · 13/12/2019 00:41

hope DH goes ok today @notapizzaeater

notapizzaeater · 13/12/2019 09:04

@TheFuzzyStar - welcome to the club no one wants to be in

@Frikonastick @yolofish we here now, he's had the head frame fitted and they doing a mri as I type - he is totally on the border for size so depending what the mri shows (if it's grown much in last 2 weeks) we might not be getting it - they decide after looking at it and if he gets it he's straight in. They've given him a diazepam so he's chilled.

I was upset yesterday as our oncologist has always said she wouldn't do the PIP forms under the < 6 months to live rules just under the normal rules but yesterday she's filled the < 6 months one 😥😥. It's so upsetting as to look, speak and see my DH he looks perfectly healthy, nothing bloody wrong with him on the outside ...... he's no idea about this