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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.

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yolofish · 05/03/2019 22:40

just a little handhold across the ether for you willow. hoping the antibs do their thing very quickly.

FiveGoMadInDorset · 17/03/2019 19:30

Hi willow how is life with you?

Original poster
Willowkins · 20/03/2019 21:04

Hello. How are things with you?
Actually got some news. Chemo due to start in two weeks and they are trying to organise a CT scan. MrW has finally taken sick leave. Also on stronger antibiotics to get rid of this infection if that's what it is. Meanwhile, he's sat on the sofa groaning. Not sure what I can do to help Sad

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yolofish · 21/03/2019 21:02

oh willow I so know the groaning, and the lack of ability to help... I have offered stronger painkillers (no good as bung you up) and hot water bottles (well it was an idea!) but none are wanted. good news about more chemo, CT and stronger antibs hopefully they will keep him more comfortable. You must be absolutely bloody shattered. Someone asked me the other day how I was - and do you know I have absolutely no fucking idea! Cant even think about me but sending you gin, wine, flowers, chocs etc etc.

FiveGoMadInDorset · 21/03/2019 21:09

I know that feeling Yolo

We had the hospice lady round today just to explain what they offer and to let us know that we are on their radar. She was lovely and it was easier to talk about end of life options with a third person in the room who is knowledgable. DH is coughing but appears to be allergic to the cats so not sure how much is symptoms and how much is allergy.

Fingers crossed for chemo and for getting rid of the infection, I can't hel with groaning I am sorry

yolofish · 21/03/2019 21:13

Five I'm sorry you've reached the hospice stage, we are 2 days post end of chemo/radio, DH feels like shit but limbo again now til end of April for MRI and then surgery after that. Am hoping he will feel better in a week or so. (He was stage 3 last time anyone looked...)

FiveGoMadInDorset · 21/03/2019 21:17

Not there yet, he is remarkably fit and well, just dying, I think it was a case of the oncologist not doing anymore treatment, he was offered more chemo but declined, and they didn't want us to feel abandoned.

The waiting for MRI and results is the most difficult time. Hoping it hasnt got any worse, DH was stage 4 when diagnosed August 2016 so I think the fact that he is still here and felling well is a testament to hm and the care that he has been given

yolofish · 21/03/2019 21:37

DH business partner has a stage 4 brain tumour (yep, 2 of them in one small company!) and he and his wife have both found the hospice very helpful all round. Having said that, he has been stage 4 for about a year and is currently remarkably well. It's a weird old game...

Original poster
Willowkins · 24/03/2019 15:56

Thanks for listening (and the GinWineFlowersCake).
So fed up people telling me how well MrW looks (they know he has cancer). I want to say: he's dying but I bite my tongue. So I say: he's got a cold or he's tired instead.
I had to choose between going with him to get a blood test or taking my DS for some emergency dental work the other day and just trying to be in two places at once was so stressful.
Also, I have been having panic attacks and I forgot how to make cottage pie last week.
Based on past experience, I think this means my Mirena Coil needs changing but I had to have it done under general anaesthetic last time and this is just the last thing I need right now.
And breathe....

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yolofish · 25/03/2019 18:08

willow Gin Wine etc for you. Yes, how well you look! Actually no he doesnt he looks shit, you're just being polite. But obvs one cant say that. My PIL want to come and see us: I have had to say actually dont, at the moment, he is on the loo 24/7 and if he is not he is groaning in pain (not been quite that explicit). The last thing he needs is having to pretend to be happy smiley with his parents, fuck, he doesnt bother doing that with us and the DDs. They invited us to go up to theirs, they dont understand how uncomfortable/constantly shitting he is. sorry, rant over, are you getting close to chemo date?

Original poster
Willowkins · 25/03/2019 20:19

Don't get me started on my PIL Angry.

Chemo is due to start next week and yes diarrhea is definitely a major side effect. However as he is on permanent Laxido I'm hoping it will even itself out.

We're earning our Carers Allowance that's for sure.

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yolofish · 25/03/2019 20:37

Fingers xd for next week and that he stays well enough to have the chemo. Am honestly not trying to freeze the PIL out but they have absolutely NO FUCKING IDEA! sigh, and breathe...

Original poster
Willowkins · 02/04/2019 11:38

Just got back from chemo. MrW is gently snoring on the sofa (too tired to drink the cup of tea I made him). It's at times like this that I feel at peace and think that anything is possible.

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yolofish · 03/04/2019 21:14

hope he is feeling a bit better today willow - how often will chemo happen?
DH finally able to function again, 2 weeks and 2 days post 5 weeks of chemo/radio - so he can be up and about for half the day. No one tells you any of this shit do they?! MRI and CT on April 30 to plan next stage..

Paddy1234 · 03/04/2019 21:35

Just sending lots and lots of ❤️❤️ to your family
Just read the whole thread, heartbroken img but so inspiring X

Original poster
Willowkins · 04/04/2019 15:50

He's better yolo. Glad yours is too. The infusion (injection + saline solution) is once every 3 weeks and he has 2 weeks of tablets so one week free. How is anyone supposed to remember all this? He also has a CT scan booked so that will tell us where we are.

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Original poster
Willowkins · 04/04/2019 15:53

Thanks Paddy. I have had so much support on these threads. Just being able to tell someone, who understands, how you're feeling is precious.

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yolofish · 04/04/2019 16:22

do you know how you're feeling? honest question... how are the little willows doing? our friend with the stage 4 brain tumour, his 10 year old is being an absolute little shit - totally understandable of course, but so hard for them to deal with. The mum has just given up her job (she hated it anyway) so they are hoping it will help make things calmer at home and so easier for the boy...

Original poster
Willowkins · 04/04/2019 18:47

Good question actually. I just started a mindfulness course and the words that came to mind were terror and despair rather than peace and joy. I think I also have grit and stubbornness and it's that keeping me going.

My LOs are teens and DS is taller than me! They've had 2 years to get used to this and there have been issues but they are adapting. No doubt this will have changed them.

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yolofish · 04/04/2019 19:37

mine are 22 and almost 20; they've found it hard coping with dad being ill on top of uni stress etc. I think you are right: it will change them.

yolofish · 04/04/2019 19:40

stubbornness and grit are good qualities to have, as is keeping going. Not much comfort there though. My best friend lost her daughter aged 19 to glioblastoma: she says there is no alternative other than to keep on keeping on. Flowers and Wine

FiveGoMadInDorset · 06/04/2019 15:25

Afternoon ladies

I am afraid I am not so polite at times and will reply he is looking very well for a dying man. Can't remember where we were when last wrote but now have met hospice coordinator and he had a blue badge. We are away for the weekend in Dartmouth and our room is up a couple of flights, he was sadly quite breathless after climbing them.

Hope you are all having a peaceful Saturday xx

yolofish · 06/04/2019 20:39

Five I hope you are having a lovely time despite the breathlessness xx

echt · 07/04/2019 12:33

I'm a lurker on this thread.

I forgot how to make cottage pie last week made me laugh.

I haven't been through what any of the posters on here have, but am mired in my own bereavement grief. I forgot how a tin opener works a few weeks ago. The worrying thing is it was directly after using a tin opener. Hmm :o

Many many FlowersGin to you all.

Original poster
Willowkins · 07/04/2019 16:14

It's lovely to think people are interested enough to lurk on this thread. I frequently lurk on threads where I have no useful advice or experience but am just concerned about the outcome.

Five it's good at least you got away. Hope you have a relaxing time.

I spent the whole of yesterday answering the question: how is MrW? sometimes followed by: and how are you? Also: if there is anything we can do...

We had a scare this morning. Mr W was sick last night and in terrible pain. This morning he finally agreed I could ring for help. Miraculously a doctor arrived at our house 20 minutes after my call. I mean, how does that even happen these days? The doctor thought it was constipation but keep an eye on it, told us the signs for bowel obstruction to look out for and thought possibly the liver was enlarged. So it could be nothing or everything. I want to be a good MrsW but he has banned me from harassing the HCPs for results.

We all do what we can.

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