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Dh stage 4 bowel cancer

335 replies

loubieloo4 · 15/10/2019 01:37

It's shit and I am very fucked off at the world right now.

I think I'm just wanting to write it down and talk about with people who don't know me or us. It will probably be very long sorry.

Dh (38) and met when we were 16 (true childhood sweethearts) and in the 24 years we have been together, married for 21, he has only ever been to the drs once. He was a very health person, eats right, never smoked, regular gym goer, occasionally has a drink but only a few times a year. Perfect weight for his height and very fit.

In March he had a few aches and pains in his lower back that made me think of a uti, sent him off to the drs who said no uti but possible ibs Confused a few days later he was in lots more pain that was then in his stomach, took him to our local walk-in centre who sent him to our local surgical admissions unit in our local hospital.
They did a ct scan the next day and diagnosed diverticulitis, with a pin prick sized perforation in his bowel. Sent him home a few days later with a high fibre diet. Then later that week at 11pm he started violently vomiting and was rolling around in agony. I called 999 explaining he had a perforated bowel, the ambulance never showed up so after an hour of waiting I somehow managed to get him in the car.

A&E were fantastic, sorted his pain out straight away, then sent us back up to the surgical ward. Eventually a junior dr came to see him at 5am, he was asleep so she spoke to me, I asked about him having a new ct to see if the perforation had grown (I'm a nurse but not surgical, so have a general gist of things) to be told as his mother it wasn't up to me as they can affect sperm later on. I told her as his wife we didn't care about sperm issues and demanded to see someone more senior. The ct went ahead and he was told he would be sent a date for a colonoscopy date to confirm the diverticulitis diagnosis.

On 7th April 2019 the day of colonoscopy, changed our lives forever. They found a mass in his colon that they thought was cancerous. They took several biopsies and told us we would be sent a date to speak with the consultant.

In May we met with the worst consultant, he said that they had caught it early and it wasn't even classed as a stage one! All good, we can deal with this..... until he starts talking to the nurse about dh peritoneum, which I knew was the lining of his stomach, questioned him and he said he wasn't sure but there could be something there. At that point I lost faith in him and requested to see an amazing consultant at the hospital I work at.

2 weeks later at a meeting with the new consultant we were told that not only had the tumour broken out of the bowel wall, wrapped around his small intestine, they could also see some in a lung and the peritoneum. So stage 4 Confused

22nd May dh had a 10hr long operation (cytoreductive & HiPec) known as the mother of all surgery. After a couple of days in itu dh did amazing and came home 9 days later. He had a scan a couple of weeks later before he started his chemo, sadly the scan showed a very aggressive spread to both lungs, liver, chest wall, bone and lymph. Given 18 months with treatment or 6 months without.

He has had 2 cycles and has had to stop due to the side effects. There are no more treatments that's it.

My amazing children are going to lose their daddy and I am going to be left without the reason I live and breathe. It's all just the biggest pile of bollox. How can we plan for a life without him....

OP posts:
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daisydalrymple · 19/10/2019 23:16

I’m so sorry to read this. A few posters have suggested if DH is up to it, can he leave some letters / cards for your girls. For me, I would be so angry at the key moments in the future DH would be missing. Can you possibly get 18th / 21st birthday cards, and a wedding day card for both of them, with DH’s thoughts on how he would feel on those occasions?

Also, I would suggest you and DH talk about all the milestones ahead in your daughters’ lives, and how he would like things to be, how you might deal with potential scenarios together, and how he’d like to help shape the future for your daughters. Talk, talk, talk as much as you can manage about the future and what lies ahead and what he would contribute and channel.

Much love to you all in this darkness.

saraclara · 19/10/2019 23:30

My late husband was diagnosed, out of the blue (having been misdiagnosed for two years), with stage 4 bowel cancer which had spread to his lungs and liver already. I feel for you. We got the diagnosis on my daughter's 21st birthday.

All this advice about bucket lists and writing things to the kids and pre-writing birthday cards etc...be careful.
My husband wanted life to carry on as normal as possible.All of those things scream 'you're going to die'. And he didn't want to be thinking that way.

But you know your husband. Taking one day at a time is all you can do. Follow his lead if you can. Some people are preparers, and some don't want to think about what's ahead until they have to.

Get every bit of practical and emotional help as you can. We were lucky with that, and MacMillan sorted everything for us, contacting all kinds of services and organisations on our behalf. I hope you're as fortunate.

loubieloo4 · 20/10/2019 00:20

Answerthequestion

His tumour has been tested for mutations, part of it was also sent to the USA. I can't remember all of the exact names and types, KRAS and some other bits (sorry it's all a bit of a blur) he isn't suitable for immunotherapy, only 4% of bowel cancers are this type which sadly is very aggressive. His oncologist had 4 places for a new trial but dh isn't suitable.

We have also spoke to a surgeon to see if he is operable, but the cancer is too far spread and in too many places for any surgery to be viable.

I trust his oncologist 100% as he is a friend of a friend. At this stage it's more about quality of life, and due to the extreme reaction to chemo it just isn't worth it.

We are very lucky to have a strong relationship and we have talked about most things, fortunately we have life insurance so that takes one burden away. Dh is being very practical and sorting paperwork, bills etc (taking his name off 😭) he also won't let anyone apart from me focus on him, he tells everyone they need to concentrate on me and the children. He is so bloody amazing.

We do have a "Fuck it list" of lots of things, some big and some small. I have talked to him about maybe leaving letters or videos but he thinks it would make it harder for the children, I am going to try and do something with him though. Maybe a photo album each with a few notes in of memories of the pictures if that makes sense. Not so morbid for him, maybe he will then write something on the back pages?

Sorry for all of those who have been through or are going through this, it really is the shittest thing. Thank you for all the good wishes.

OP posts:
Ginger1982 · 20/10/2019 08:06

I have talked to him about maybe leaving letters or videos but he thinks it would make it harder for the children"

As I said, I would have loved this. Not right away but at certain special times in my life it would have brought me great comfort. You obviously know your children best though. Thanks

notapizzaeater · 20/10/2019 09:21

We've talked about videos etc but currently my hubby isn't emotionally strong enough to do it, I've saved a few phone messages he's left to keep his voice, I have considered using a voice recorder and just getting him to talk about his past and record him (probably not telling him)

I bought a book for my mum one of these a few years ago, I'm going to talk to my DH about him filling in one.

It has prompts on the pages to encourage you to write your story,

Dh stage 4 bowel cancer
saraclara · 20/10/2019 21:11

My daughter bought my husband one of those books (though a different version). But he couldn't do it.
Of course he knew he was going to die, and accepted that. But it was not something that he wanted to think about or dwell on. He went to hospice support sessions twice a week and I know they asked him about things like this...offered him the chance to plan his funeral etc. But that was the last thing he wanted to think about. Yes, we planned and I carried out practical things like changing names on bills, noting passwords, financial planning. But in every other way, he lived for the moment.

Fortunately we have a lot of old video from holidays and such. Seeing him and hearing his voice on them is all we need.

HitthefloorforTaintedLove · 26/10/2019 11:03

So sorry Lou and Pizza.
I haven't been where you are now (DH diagnosed with Stage 3 bowel cancer last year so I remember the initial feelings wondering about the future) but just sending so many good wishes for you and your families. Hoping you can enjoy as best you can the time you do have.
Remembering some loved ones I can still 'hear' them saying some phrases but yes would be nice to have a recording of some description, even if not one of the 'official' books.
Can you do things like a playlist of his favourite driving songs, or note down a song he danced really badly too, or that he sang to them as babies.
Or stories he used to read them, things about him, you can do this yourself, I think children who have lost a parent are often curious later about what they were like, their favourite and least favourite things, what they were good at. A few funny stories from his school days, did he ever do anything really naughty or have a drastic hairdo, what was his first job. Random things that tell you about a person.

Sara and Ginger sorry for your loss and for sharing your stories.
DH also lost a parent to this disease but not as young as Ginger was.

Flowers
TheGirlFromStoryville · 26/10/2019 11:09

No words op apart from how sorry I am.
Sending you hugs and prayers. Life can be so unkind Flowers

mynameisnotmichaelcaine · 26/10/2019 11:13

Re: the children, you can't know, so don't beat yourselves up about them. My mum left me letters, I read them once, now they are up in the loft. I don't need them, I know she loved me, and she knew I loved her. At key events, it's her I want, not letters.

Sometimes I get really sad and angry, but just knowing that I had such a wonderfully lovely mum is a blessing to me as I get older.

I am so sorry you are going through this spectacularly awful time.

EKGEMS · 26/10/2019 15:17

I don't know what to post other than cancer is a bitch and I'm so sorry you are all going through all this. I'm sending you internet hugs and flowers. Colorectal cancer is just awful and has plagued my mother's side of the family

sheshootssheimplores · 26/10/2019 16:00

loubieloo I’m so sorry to hear your news 😣. You all sound like such wonderful people and I can only imagine the shock to receive the diagnosis 😔

In your last post you were wondering about letters and videos. It reminded me that I’d watched a Facebook video recently about a terminally ill mother who had left a series of recording to help her daughter when she was no longer there too offer advice. I know it helped her daughter immensely and I thought I’d just link to the program incase you wanted to watch it.

www.bbc.co.uk/programmes/m0004hqk

sheshootssheimplores · 26/10/2019 16:01

I should have said the program is called Miriam’s Dead Good Adventure and the link describes it as ‘Inimitable actress Miriam Margolyes is on a mission to confront her fear of ageing and death and tackle our greatest taboo - our own mortality.’.

MrsMozartMkII · 26/10/2019 16:58

No wise or useful words, just a hug and a handhold.

loubieloo4 · 28/10/2019 22:17

Enjoying a very last minute break in a lodge in the middle of nowhere in Scotland whilst dh is feeling "ok". Cuddled under a blanket, log fire on, kids in bed, listening to my endless love on Alexa.

These are the memories that will hopefully keep us going.....

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spongedog · 28/10/2019 22:35

I cant offer any advice on your situation at all apart from sending kind thoughts. But please later if you get time - do take up with the hospital the initial consultants view. It would not change the outcome (sorry) but just sounds so incompetent.

HitthefloorforTaintedLove · 28/10/2019 22:38

Enjoy those cuddles and your break in Scotland, maybe snap a few unposed photos with DH and your children.
Sending hugs Flowers

tunnocksreturns2019 · 28/10/2019 22:40

Sending so much love. Different cancer, but I’ve been there xxxxx

daffodilbrain · 28/10/2019 23:03

This is heart breaking. Big hug and lots of love to you all. God bless

MrsMozartMkII · 29/10/2019 05:51

That's made my eyes misty, both in a good and a sad way.

I hope you get to enjoy as many more memories as possible.

loubieloo4 · 29/10/2019 18:35

Catching the memories that matter 💜

Dh stage 4 bowel cancer
OP posts:
loubieloo4 · 29/10/2019 18:40

We have another appointment next week, hopefully they may have something else up their sleeves. He is due another scan in November so I guess it depends on the results of that.

OP posts:
ballsdeep · 29/10/2019 18:42

Life is so shit sometimes. I'm sending lots of love to you

MrsMozartMkII · 29/10/2019 18:43

That is a beautiful picture.

Everything tightly crossed that the scan offers something positive.

notapizzaeater · 29/10/2019 21:21

We've had some professional photos done, I can't look at the one of DS and DH without crying 😥

siriusblackthemischieviouscat · 29/10/2019 21:37

Life is indeed shit at times. There is no rhyme or reason to things that happen. Cancer is my greatest fear - I'm so sorry to anyone going through this and more so to their loved ones who are facing the worst times.

Thankfully I am lucky enough to so far not experienced a youngish person loosing their life so I have no words to give.

I think OP you are doing well, spending quality time as a family is the most important thing for you all.

Much love