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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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OllyBJolly · 03/01/2019 21:38

I think it's good to make plans so that you have something in the future to look forward to. We would plan weekends in hotels or Airbnb's, never too far away from medical attention just in case.

I also get totally what you mean about the birds, I remember one of my greatest joys was watching the birds play around the feeders. When DSis was moved to the hospice, her window also looked onto a busy bird feeder.

Sending you positive thoughts.

Original poster
Willowkins · 08/01/2019 21:44

Flowers Hi! How are you all doing? Flowers
Tomorrow is the day we go back to RM to see if MrW is well enough for another trial and if so whether there is one available.

Dear friend is picking up DD from school and DS has his own transport so all sorted.

Deep breath. Here we go again.

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fartfacemcfartfaceface · 09/01/2019 17:37

How did you get on today OP?

Original poster
Willowkins · 10/01/2019 01:03

On the whole, not too bad. Traffic was moving, bloods came back fine and they were happy that he was well enough to do another trial. Now we wait to find out if that is what will actually happen.
Anyway, enough about me. How are you?

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yolofish · 17/01/2019 20:33

how are you willows doing?

Original poster
Willowkins · 18/01/2019 02:41

Hi yolo I'm muddling along thanks for asking. How is your DH?
We got an email from RM today to say there isn't a suitable trial at the moment but they'll keep trying. MrW told me this evening that he's been thinking about death since the New Year. He doesn't really do feelings so that's all I got out of him. It can be a bit frustrating. Gin

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yolofish · 25/01/2019 21:49

I second the Gin willow my preferred tipple is Wine tho.

I do know what you mean about not doing feelings, and also with DH he is quite passive about stuff, I'm the one kicking ass when appts dont come through etc.

DH is not terribly well (when people talk about shit situations they obviously havent come across bowel cancer, I've never cleaned the loo so often!), but we've had the radio planning mtg today, chemo planning next week and an additional MRI next week too. Initial diagnosis was Oct 7, so a long time with no treatment and the consultant wants a new MRI to see if colostomy reqd before they start chemoradio. Good news is that EBUS showed no spread to lungs, but we are praying that colostomy not needed as the no treatment for almost 4 months is a mental killer.

Any news about a potential trial? Look after yourselves.

Original poster
Willowkins · 26/01/2019 02:10

Hi yolo. So sorry that your DH not well. I'm reading between the lines that you're keeping calm and carrying on through gritted teeth. Please look after yourself. Here's some Wine
MrW has a permanent colostomy which (once we got our heads round the idea) is largely okay - no pain, neatly bagged poop and charcoal-filtered farts Grin
No trial on the horizon but we go back in a month to see if the situation has changed.
Mr W still has a cough which is getting him down but he is adamant that he doesn't want to see the GP because they'll likely send him to A&E. He's terrified that once he goes into hospital, he'll never come out again. For all I know, he might be right and I'm just trying to support him the best I can.

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Original poster
Willowkins · 13/02/2019 15:44

So we're waiting (and waiting and waiting) to see the oncologist at our local hospital in case there is anything they have to offer in terms of treatment. Hopes are not high. Sad

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Borntobeamum · 14/02/2019 15:00

Fingers crossed they can offer him a trial x x

fartfacemcfartfaceface · 14/02/2019 17:28

Got everything crossed for you

Original poster
Willowkins · 20/02/2019 21:23

Thanks all. How are you all you doing?
So a little bit of an update. There are no suitable drug trials at RM at the moment but there is a chance of more chemo (but one usually used for a different type of cancer iykwim) at our local hospital. MrW has actually cheered up a bit at having a plan. Of course it might not happen (sigh).

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yolofish · 21/02/2019 22:09

sounds like a little bit of light for you willow I do hope it comes to something for you all. Everything xd, plus Gin.

DH done 8th day of combined chemo/radio. He is incredibly tired, but we dont know if this is because of the treatment or because he is up and down 6-7 times a night. Nurse today gave him completely different dietary advice than the GP gave a while back. Seeing Macmillan nurse tomorrow pre-radio so we will try and get some clarification then. He is very bad-tempered - understandable, but it's hard when you're just trying to keep the peace and he kicks off about something totally irrelevant.

Original poster
Willowkins · 22/02/2019 11:28

Oh I get that yolo (and also have Gin on standby). MrW also gets grumpy (1) when he's tired, (2) when he's convinced himself that he doesn't have long left or (3) when his mum calls. I understand all this but it is hard to deal with when you can't actually fix the underlying problem. I try to jolly him along to the next milestone. Plus I'm going to practice nodding sympathetically.

One thought, is your DH on steroids? When MrW was on them, there was a noticeable shorter fuse.

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FiveGoMadInDorset · 22/02/2019 11:32

Fingers crossed for the chemo.

My husband is foul when he is tired and I have to put barriers up between him and DS who is just being a normal if very trying 10 yr old

Just back from 3 days in Paris which we all enjoyed but I can feel the tension rising

Original poster
Willowkins · 22/02/2019 12:26

I agree you have to protect the little ones - I would paraphrase MrW along the lines of: What he means is that he loves you VERY much.
My DCs are teenagers now and have developed their own coping strategies. DS has grown up a lot and turned into a nice young man; DD has a dark sense of humour and doesn't take prisoners. I am super proud of them both but worry about afterwards (neither of them drink Gin)

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yolofish · 22/02/2019 22:22

no steroids yet willow just the combined chemo/radio.

I think you also have to protect the big ones too - my DDs are 22 and almost 20, and they are struggling with what's happening whilst coping with their own lives... Dad being a bit of a shit at times is something we all have to live with, but it would help if DD1 in particular wasnt so bloody combative! OTH she has been like this all her life, so no real surprise -she is fab though.

Original poster
Willowkins · 02/03/2019 22:26

Just posting to say: Yay it's March - we made it to another month.

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yolofish · 03/03/2019 07:43

yay well done to all the willowkins. DH done 14 days of his 25 day chemo/radio. Feels like shit...

Original poster
Willowkins · 03/03/2019 15:55

So sorry to hear that he feels bad yolo. Just turning up for 25 days of radio/chemotherapy sounds gruelling in itself. I know he has treatment on top but I'm not forgetting it's hard on you too. We DWs are there the most so we get most of the flak whilst sometimes feeling so helpless that we can't just wish it away Sad

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Original poster
Willowkins · 03/03/2019 15:57

Actually not just DWs - could be other partners, relatives or friends - whoever is closest.

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yolofish · 03/03/2019 16:27

Agreed willow it's the club no one wants to be in... I do admire the way you are coping (or seeming to) and your generosity of spirit to others who are not in your situation - because for some of us we will come out of it a bit battered and worse for wear, but I know your DH prognosis not good and there but for the grace of god go us all. Gin and Flowers for you.

FiveGoMadInDorset · 04/03/2019 18:56

High five for getting into March.

We had trip to oncologist today, nothing to report as no more scans, she was mainly ensuring that we had things set up at home so on community nurses radar and hospice, community nurses yes, hospice we have been referred to but no contact so they are chasing that up, next appt in 3 months.

It's an awful club to be in and unless you have been through it no one else gets it

yolofish · 04/03/2019 19:34

five the limbo is awful isnt it? DH actually feeling better today, has been up and doing things for at least 4 hours, and is now cooking for us. I am of the opinion that doing stuff is better than not, yes he will be tired after but perhaps he might sleep then...

Original poster
Willowkins · 05/03/2019 18:23

I have to say our local hospice are amazing. We haven't really needed them but we've made contact and it's good to know they are there. I finally got MrW to talk to our GP about his cough (temperature had spiked to 38.5 but of course he won't go to hospital!) and they were amazing as well so that MrW now on antibiotics. He certainly seems better today but like the title of this thread says, it's the calm before the storm...

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