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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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Chasingsquirrels · 31/05/2019 11:42

Hope you are "getting through" Willowkins, which is probably as much as you can hope for at the moment.
I remember at the end waiting for it to happen and knowing that his pain would stop, and then when it happened I would have given anything for just another 5 minutes.
Thinking of you x

Torvi · 02/06/2019 14:15

You're still in my thoughts Willowkins Thanks

Original poster
Willowkins · 02/06/2019 23:24

We'll that's enough about me. I'm likely moving over to bereavement but I'd be very happy if this thread could continue to provide support and solidarity to anyone who needs it Gin

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Dontsweatthelittlestuff · 03/06/2019 01:07

I have lurked in and out of this thread for the past few months.
I am you Willowkins just 21 months further along the grief process.
My wonderful husband didn’t have as long as yours. He died 105 days after diagnosis and the cancer was so advanced there was no treatment they could offer.
I won’t give you all the usual platitudes about it getting easier as it doesn’t. You just get used to your new reality.

So sorry you had to join the club that no one wants to be in. Take care and always remember love never dies.

echt · 03/06/2019 05:54

Many Flowers for you, Willowkins

I've dipped in and out of your thread over time.

Bereavement is a fab thread, though never a club you'd want to belong to. Sad

notapizzaeater · 03/06/2019 16:32

Are you sure @Willowkins that you are ok with us posting here ?

I had a 'simple' gallbladder op last Thursday that ended up being full abdominal surgery! I finally managed to get discharged today - everything that could go wrong did ! And went with DH straight to his oncologist appointment. No news, there's no way of knowing anything at the min - we've another 4 weeks worth of tablets with a follow up in 2 weeks.

FiveGoMadInDorset · 03/06/2019 18:35

If you are absolutely sure Willowkins

We had onconcologist appointment today and DH is now on steroids to help with his breathing. At first the doctor was all set to give him an inhaler to help deal with the cat hair but when he was honest about how else he was feeling she said that although the hair didn't help, the other symptoms were typical of the disease spreading.

notapizza that's all you need, hope you are feeling stronger soon

yolofish · 03/06/2019 21:21

willow I think of you and your family all the time.

notapizzaeater I hope you are feeling at least a bit less physically battered, and fivegomad that the steroids are helping.

yolofish · 03/06/2019 21:23

DH will have permanent colostomy on June 14 - tumour too low and too big and too attached (to something but they are not quite sure what) to attempt resection. Then prob more chemo. It is apparently a 'difficult' tumour.
I know we are lucky to have the option, but I don't think it will be an easy path to follow for any of us.

Original poster
Willowkins · 04/06/2019 00:05

Yes I am sure. This thread (and my sanity) would have been severely diminished without your contributions. So carry on and I will lurk to make sure you're all okay.
Thinking about the surgery, MrW's was also in a difficult place and very complex - and they asked if they could film the surgery so it could be used to train others. In typical MrW warped sense of humour, he said he was happy to be of service and would look out for it on YouTube Smile

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FiveGoMadInDorset · 04/06/2019 21:47

That made me smile willow while I was waiting for the school bus this morning.

Yolo my friend now has a colostomy bag after having her tumour removed two years ago, she calls it Doris. The main thing that my DH and my friend found was that certain types of foods which they used to be able to eat they couldn't any more but they found this out by trial and error.

yolofish · 04/06/2019 22:01
Grin
Borntobeamum · 05/06/2019 13:52

I’m so, so sorry to read this. I was diagnosed with colon cancer in feb so it’s close to my heart/thoughts. I know what you mean about people making it all about them.....
but this is all about you and the DW’s
I’ve nothing to add other than take it moment by moment, remember the happier times and be kind to yourself.
Much love x x

Frikonastick · 07/06/2019 07:18

I’m struggling. Everything is wrong and terrible. I wake up every day with a weight on my chest. Am convinced it’s just me being weak and pathetic and everyone/anyone else would be doing better than this. I just want it not to be happening. So childish.

Original poster
Willowkins · 07/06/2019 08:55

Dear Frik of course you're struggling. It took me a long time (and shouting at the dentist Confused) to realise I was suffering from PTSD. I was taking anti-anxiety meds until recently and they helped me but so did breathing and mindfulness exercises. I'm not sure what's available in New Zealand but please be kind to yourself. No one who has gone through this expects you to be stong. Flowers

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Original poster
Willowkins · 07/06/2019 08:56

stong strong!

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notapizzaeater · 07/06/2019 08:57

It's so hard being the strong one - my DH has really bad pains in his hips and legs yesterday I could hardly breathe getting stressed about it and smiling pretending it was all ok, but it's not ok and I don't feel it will ever be ok again.

Frikonastick · 07/06/2019 09:58

When DH was first diagnosed 2 years ago, we went through a period of adjustment. Which is such a benign phrase for a very traumatic period. But I thought I had come to terms with his cancer. I felt clear eyed and realistic about his chances (64% chance of recurrence) and was as educated as a lay person could be about his diagnosis and the meds etc etc etc.

But I know now that I was just massively deeply in denial. I did not really believe it. I did not truly believe that this was going to happen to us.

I want my ignorance back. I want to go back to that time when I thought we had a future. I want to be able to look at my 10 year old and not see the shadow of her future fatherless self.

I’ve always dealt with hard periods in my life by thinking, you can survive anything if it’s not forever. This too shall pass. You just have to get through to the next part.

Except, this won’t pass. I will be grieving for the rest of my life. Missing him for the rest of my life. There is no next part with him. Only a vast white blank of a life without.

I don’t know how to be positive about this. I don’t know how to reframe this in my mind.

I’m sorry. I’m pretty sure this is not helpful to anyone on here.

yolofish · 07/06/2019 10:42

frik just sending you much love and support. I understand everything you say - not that I am in the same place as you, but that I hear you.

FiveGoMadInDorset · 07/06/2019 20:01

Emotions are so difficult to control, at the moment my most prevelant one is resentment. If I am at home I am the default in everything while he sits and watches crap on TV, and he is so much more judgemental than he used to be

yolofish · 07/06/2019 21:40

five my DH is being a knob at the moment... I know stress, anxiety, fear etc, but I went to pick DD1 up from work 45 mins early today just so I could sit quietly and read a book...

Frikonastick · 08/06/2019 05:27

Thank you all for being so lovely, even while you are having as hard (and even harder!) a time, I really appreciate it.

My DH while not being a dick, is very distant, which I am finding very hurtfull. I hear you on the resentment Five, I too am the default, and when I get mad about it, I then find myself thinking, well I better just get used to it I suppose Sad then I’m like well no actually, you’re not dead yet! Angry and round and round....... ugh. I’m sick of myself.

yolofish · 13/06/2019 23:21

DH surgery tomorrow, cant believe it is actually here. We went out for lunch today, and he is pretty calm so far. Have to be at hospital, 30 mins drive away for 7am which is not a nice thought.

five frik pizza hope you are all doing as well as you can.

Frikonastick · 14/06/2019 07:07

I have had a better week, very busy with building works - we have to subdivide our house and get tenants in to help pay for DHs meds - so been too tired to think.

Hoping surgery goes well yolo, virtual shoulder bumps in solidarity from across the ether xxx

yolofish · 14/06/2019 12:50

DH went in at 9, I am told he will be in theatre until at least 5.30. 2 senior consultants, senior anaesthetist, senior theatre nurse, they've really put the top bods on it. For which I am very grateful, god bless the NHS and all who sail in her.

Like willow's DH, they are going to video record it. I'll make the youtube jokes when he's come through it.