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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 · 07/04/2019 17:59

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...

so true, and people mean well, and they are trying to be kind and helpful. But actually there is nothing they can do, other than keep in touch and not be a PITA (in my experience anyway).

Sorry you had a scare, but glad doc came out so quickly - I hope Mr W continues to be as well as poss.

Cottonwood · 07/04/2019 18:16

Just read this thread from start to finish and only wanted to say thinking of all you facing these very difficult times. Sending much love and strength 🙏 ❣️ xxx

yolofish · 09/04/2019 21:31

hope he's doing ok now willowkins. Mine is not doing very well, 3 weeks post end of treatment. Now we are in limbo for MRI and CT scans at the end of this month, but he's not feeling great - better than he was - but still pretty rubbish.

Original poster
Willowkins · 09/04/2019 22:52

Sorry to hear that yolo. I think waiting is worse than knowing - even if it's bad news - just because the wild swings between hope and despair are exhausting.

MrW is better thank you. We didn't get a call from the MDT about his CT results so that suggests that nothing has changed much from the last one. Or they haven't looked at it yet.

I'm trying to live in the moment and have started a breathing techniques course. Who knew learning to breathe was a thing but strangely it is helping me.
And I just remembered that it's April so he made it to 11 months after the oncologist told us the chemo wasn't working (and the statistics gave him 8-11 months). Every day is a small victory.

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Original poster
Willowkins · 20/04/2019 22:48

Just got back from a few days away with MrW and the youngWs (I'm not allowed to call them kids anymore Grin). So glad we were able to go before chemo is due to restart next week. The cats were not best pleased to be put in the cattery but are now snuggled up to me and we're all very happy to be home. Heres hoping all the DHs out there are enjoying the sunshine.

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notapizzaeater · 26/04/2019 14:14

My 57 yr old dh was formally diagnosed this week with grade 3/4 lung inoperable lung cancer. We are in limbo now till the 13th to see if he is suitable for immunology to prolong life. Our nurse didn't think he can have chemo as he has only 21% kidney function (type 1 diabetic fir 45 years). We have a 16 year old ds with autism who starts his exams in 2 weeks so holding everything together at the mo. Ideally we will not say anything till after them but obv will know more after 13th.

So annoying - he's never smoked/drank

Original poster
Willowkins · 26/04/2019 21:29

Hi notapizzaeater. I think we can all agree that the waiting for results is almost unbearable. The time will pass and you will get through this but it's still pants.
This is slightly off piste but although we didn't tell YW1 (DS) that the chemo wasn't going to work until after his GCSEs, we thought he might have picked up on the extra tension so did tell his school and they let the exam board know in case it made a difference to the final grades.

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FiveGoMadInDorset · 26/04/2019 21:36

Evening ladies and hello notapizzaeater.

Willowkins hope you all enjoyed your few days away.

And yes DH enjoyed the sunshine last weekend but picked up a small tummy bug which laid him low so our weekend plans changed slightly. He is definitely declining. I would desperately like home to be ok for end of July and have last hurrah at Camp Bestival which is in our village and we have friends coming as they always do.

On a positive note I have been working for our NHS Trust bank for the last 4 years and at the beginning of April moved to another department who have taken me in a permanent role but oh so very flexible, so have the security of a position but can work the hours around DH.

What's everyone up to this wet and windy weekend?

Original poster
Willowkins · 26/04/2019 22:38

Cool Five July is not that far away so hope you get to experience Bestival. I have to confess I've never been to a music festival but like the idea of it being just down the road and therefore not even having to leave my home. I may be missing the point Smile
I am counting the days to May so I can say we made it to another month and actually a whole year. DH is definitely suffering with this latest chemo - he is in constant pain from constipation so we're trying all sorts of things to keep it moving but I really could do with some specialist advice.

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yolofish · 30/04/2019 22:53

It's May tomorrow willowkins so hurrah you did it! Hope the constipation is being sorted...

five a festival in your own village sounds ideal - I always fanced Glasto, but only if I could helicopter in and out and not sleep in a field/shit in a bucket etc.

DH is now 6 weeks post chemo/radio. He doesnt feel as well as I would have hoped by now, but def better. CT scan was today; tomorrow as supposed to be MRI but the machine is broken, which means we are at least a week off the next MDT meeting which was supposed to assess the results and make decision re surgery plans/date.

More bloody limbo... I am venting my stress and anger in the garden, which has never looked better. OTH I look like complete shit and have hands like a navvy!

Original poster
Willowkins · 01/05/2019 00:52

Yay made it to May Gin
We had the doctor out again last night because he was was in such a bad way. She was reluctant to give anything for the pain because it would make the constipation worse. He laughed and joked until she'd gone and then wondered why she wouldn't prescribe any pain relief. I despair sometimes. Anyway, she did say it was safe to increase the laxatives and he is much better today and even managed to eat something so hopefully that's a little reprieve.
Meanwhile, his sick pay has stopped and I'm wondering whether to go back to my old employer to earn some extra cash - but don't worry, I know it's a bad idea.

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notapizzaeater · 01/05/2019 10:08

Glad he's better today.

My dh had an horrific coughing fit in the night, first he's had so I was I immediately stressed. Just want the 13th to come so we know exactly what we are doing !

yolofish · 01/05/2019 12:06

sorry notapizza I missed you out last night. Everything xd for you and DH from now til 13th, and that it is stage 3, not 4.

FiveGoMadInDorset · 01/05/2019 20:33

Fingers crossed notapizza

DH has just has just worried me enough to ask him if he wants me to call anyone out, but says no. Has admitted now that certain smells are making him feel ill so need to get a list off him.

Well done for getting into May Willow does your DH claim ESA and PIP?

Original poster
Willowkins · 01/05/2019 20:58

Hope you can get the answers you need Five. I wonder if it's related to taste as well.
DH gets PIP and I get Carer's Allowance. Just did one of the calculators and might qualify for contributions based ESA. I will ask MacMillan for their help in the morning. Thanks for the heads up.

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yolofish · 01/05/2019 21:22

Bloody men and their refusal to treat pain seriously... and the putting on a brave face thing. pah!

Original poster
Willowkins · 06/05/2019 20:35

MrW doing much better now following a massive wobble over the weekend. He wouldn't talk to me for a whole day as I told him straight to follow doctors' advice (3 different doctors had said the same thing). I felt like the worst wife in the world because he was in so much pain but it did work eventually (he loves me again now). He was so much better that we went out to lunch and celebrated the 12monthsincehewastoldhemightif hewasluckyhave12monthstolive mark. Next milestone is 3 years from diagnosis in July.

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notapizzaeater · 06/05/2019 20:50

Brilliant news.

My DH is in denial about what they actually said 😭

Paddy1234 · 06/05/2019 21:17

Brilliant news!

yolofish · 06/05/2019 22:36

yay for lunch out willow, and proof to all men that they should bloody well LISTEN and do as they are told (same goes for yours notapizza).

DH been really active last few days and gone to bed early tonight, I should have gone hours ago as been gardening like mad, but got my second wind!

Original poster
Willowkins · 11/05/2019 10:45

Just got back from an overnight stay in hospital. The chemo side effects were causing MrW severe pain so I took him to A&E (with his agreement). He ended up being admitted. He was given antibiotics and fluids and not allowed to eat anything all the time he was there. On the plus side he's better, he's not in pain and he's cheerful. On the other hand he says he's done with chemo. We'll see. This is all so exhausting and I seriously thought about taking up smoking again (I haven't touched a cigarette in over 20 years). Fortunately woke up this morning thinking no, what I need is to take better care of myself. We pour ourselves out for our DHs (and this goes for all loved ones) till there we only have a sliver of our true selves left. It's not good. Hope you're all doing fantastically well this weekend FlowersGin

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yolofish · 11/05/2019 18:30

willow Flowers for you and DH. My smoking and drinking levels have never been higher... we had some good news yesterday, consultant has reviewed this weeks scans, lymph nodes are clear and tumour has reduced 'significantly'. appt on Mon to establish what/how aggressive surgery will be, with provisional date of early June. Huge relief, of course, but more a feeling of 'not out of the woods but into a clearing'.

Original poster
Willowkins · 11/05/2019 20:47

Fabulous news yolo. Being eligible for surgery is a real game changer. And clearings are good - that's where you can look up and see the sky.

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yolofish · 13/05/2019 14:20

how are you doing willow?
any news notapizza?

Nothing is ever straightforward. Just back from seeing surgeon. There are 2 possible ops: one complete removal including anus, so bag for life (there's a joke in there somewhere), the other a resection so just a temporary bag but with potential very nasty side effects including dual incontinence and the possibility that then couldnt switch to permanent bag option. Plus, the tumour seems to be fixed to something, which means they would need to take a much wider lump out.

No decisions yet, his case goes back to MDT on Thurs and he will call us Thurs night. If case too difficult for local hospital means we will have go to another one about two hours away. Rather takes away the elation of Friday night, but ho hum.

Original poster
Willowkins · 13/05/2019 17:19

I'm fine thanks for asking yolo and MrW so much better. His diet now consists of white bread, white rice and mashed potato.
He has had a permanent stoma for 2 years now and it's been mostly okay. It's a bit strange but you get used to it. On the plus side, it meant he was not in pain and prolonged his life so worth it.
Happy to answer any questions.

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