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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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Original poster
Willowkins · 23/10/2018 01:42

Thank you all so much for your kind thoughts and good wishes. It was my birthday last week and I have been spoiling myself rotten including - get this - a tour of a gin distillery Gin.
Somebody asked about Mr W wanting to work. It's because he wants to be normal. He does most of the school runs for the same reason. If it was me, I'd take the kids off to do something jolly and fun but that's not what he's about. At least he's being true to himself and I am trying to support him in that.

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WhatWouldLeslieKnopeDo · 23/10/2018 20:07

Happy birthday for last week Cake I'm glad you've been spoiling yourself. You certainly deserve it.

yolofish · 27/10/2018 21:54

hey willow I hope all is going well? DH has to prep for his colonoscopy tomorrow - has requested sedation for Monday's 'event'. DB has told him he cant wait to look up an old friend - which at least made DH laugh!

Original poster
Willowkins · 28/10/2018 14:06

Hi yolo, from what I remember, the pre-event is pretty dramatic as well. Hope all goes well tomorrow. I find laughter is a great friend in these circumstances.

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yolofish · 28/10/2018 17:32

Counting down to commencement of the moviprep at 7pm. We are referring to it as shit soup. Any news on trials?

WhatWouldLeslieKnopeDo · 29/10/2018 20:44

How did it go yolofish?

And how are you all Willowkins? Flowers

yolofish · 29/10/2018 21:18

leslie not brilliant but thank you for asking. Def malignant, def grade III and also strong possibility it has got into the pelvis which kind of ups the ante. Hey ho, one step at a time.

willow I hope you are all continuing to hang on in there.

FiveGoMadInDorset · 29/10/2018 21:23

Willow my DH is the same, although he doesn't work as we ran a B&B and have moved house now, but still does school runs and cooks every night. They have stopped treatment now, there is nothing more they can do for him. We have booked a day out with the DC's in November and we are going to London for a few days in January, other than that I am busy with my business and he looks after the house. We had a great day in London a couple of weeks ago blending our own gin, may have been slightly squiffy by the end.

Original poster
Willowkins · 30/10/2018 00:58

Hi y'all. Not forgotten you just been super busy catching up with everything I should have done at the weekend. In the end went to the chippie for tea rather than cooking because so tired. DH says being on my phone at this time of night is probably what's making me tired but that's because I can't seem to stay asleep.
Sorry not better news yolo.
Hi Five. We have to let them be themselves don't we.

MrW keeps apologising for "putting me through this" - like he had a choice. There isn't really anything to report. He starts the trial this week. Our Macmillan nurse at the hospital has referred him to the hospice/community nurses (just in case). We talked about whether he wanted to be resuscitated if his heart stops (he doesn't). His DM upset him on the phone and is coming over for a quick visit. I strongly feel I need to take time off work that day so I can give him support.

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Original poster
Willowkins · 14/11/2018 22:34

I haven't updated for a while. Mr W started the trial and got an adverse reaction (too much and didn't go away quickly enough) so he is now off the trial. We're back to nothing they can do - maybe see if he can go on another trial in a couple of months. Dammit I didn't want to hope but I did. I'll bounce back tomorrow but now I just feel numb and a bit cross.

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TwitterQueen1 · 15/11/2018 08:32

Very sorry to hear that OP. I've just been accepted onto a trial so I understand the hope they offer. There are always new ones coming along though so hopefully you'll be offered another one. You're entitled to be more than a bit cross.

Original poster
Willowkins · 15/11/2018 18:18

Thanks for your kind thoughts Twitter. Well done on getting onto a trial and I so hope it works for you. Smile

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WhatWouldLeslieKnopeDo · 18/11/2018 16:16

I'm really sorry to hear that Willowkins Flowers hope is a bit of a double-edged sword really, isn't it. I do hope something new comes along soon.

Also, has MrW had a pneumonia jab? They're only routinely offered to over 70s or something. But it might be worth asking if he is eligible to get one. I was all set to have mine and then I got pneumonia. It has been an absolutely massive setback. Sorry, I'm not trying to scaremonger but thought it would be worth mentioning in case he can get the jab and potentially avoid this horribleness :)

Original poster
Willowkins · 18/11/2018 22:33

Thanks LeslieKnope. I hadn't thought about having a pneumonia jab (I didn't even know such a thing existed). He's only in his 50s but I'll ask the doctor about it when we see him this week.

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WhatWouldLeslieKnopeDo · 22/11/2018 15:44

He might not need it, but definitely worth asking. I don't know why they don't offer it to stage 4 cancer patients as standard, given how much of a threat pneumonia is to us.

My cancer has progressed now and I'll be starting Lonsurf soon.

I'll keep my fingers crossed that MrW can get onto a new trial soon.

Original poster
Willowkins · 21/12/2018 12:52

Well it's been another month and MrW is still here. Tired but otherwise okay and working part-time over Christmas. We are having a quiet Christmas but meeting up with family and friends over the New Year.

MrW is convinced he will die next June. He doesn't want any presents because he only has 6 months to use them! I seriously wonder if it's spread to his brain sometimes.
We have made contact with the local hospice and they were lovely. They understand that we will need some support in the future but said there are all kinds of services that we can access now if we need to.
I have booked a few days away for the family at Easter. I was undecided but then realised we need to live our lives. So I've booked the cats into the cattery and told MrW I expect him to be there. I'm not trying to tell him what to do - I just want to plant some positive thoughts in his head.
Thank you all so much for your support and letting me get it all out every month. For all of you going or have gone through this, I wish you peace this Christmas and blessings in the New Year x

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TwitterQueen1 · 22/12/2018 12:49

Well that's good news OP! If he's able to do some work and have a relative 'normal' time he must be doing OK. I understand about the presents but he has to have some - maybe edible ones? And what a good idea to plan something for Easter too.
Peace to you this Christmas too.

yawning801 · 22/12/2018 13:02

Only just found this thread, you are all being so brave. Best wishes for the festive season.

Original poster
Willowkins · 01/01/2019 18:09

We made it! Christmas, MrW's birthday and now 2019. We're on a roll.

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tessiegirl · 01/01/2019 21:01

Just read your thread op.
I wanted to wish you all the best for 2019

FiveGoMadInDorset · 01/01/2019 21:07

Yay to achieving targets. I have to keep DH well until June as we have been invited to a wedding in France for the weekend, meantime booking a small trip to Paris in February fir us all.

Wishing you a peaceful New Year x

BaaBaaBaaMoo · 01/01/2019 21:08

Happy new year!

Original poster
Willowkins · 02/01/2019 01:38

Thanks all. Hi Five, hanging in there is what we do. Time for a well earned Brew and Cake I think.

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fartfacemcfartfaceface · 02/01/2019 16:01

Happy new year mr and Mrs @Willowkins. I've been on this thread for a while but have name changed, I hope that your Christmas has been peaceful.

yolofish · 03/01/2019 21:32

to all the willowkins so glad you are hanging in there and have plans - that's got to be a positive thing. Wine

I think of you often because my DH is on this path - currently 'only' grade 3, but had EBUS test today to establish whether spread to lungs/lymph nodes. 3 months post diagnosis, and still no treatment.