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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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12
winewolfhowls · 18/10/2019 22:56

Christ, sometimes it's so unfair. I'm so sorry to hear of this, from it to come from such few symptoms too seems somehow so much more of a shit.
Thinking of you x

Karenenya · 18/10/2019 23:01

That is the most desperate situation for you. I am so sorry you are going through this. No advice, just hugs and love. Life can be so shit. Flowers

GrumpiestCat · 18/10/2019 23:06

Christ that's so hard. That's absolutely awful. It sounds entirely shocking to the core and you have had to be so strong. Talk it out here if it helps. You aren't alone. Not just hand holds but plenty in or have been similar situations.

Techway · 18/10/2019 23:16

I am so very sorry. What an awful situation to have to face

On a practical note can you get your DC a counsellor. I lost my dad at a young age and the anger turned inward, I know I would have appreciated counselling.

SunshineAllTheWhile · 18/10/2019 23:18

So fucking unfair. Wishing you all some light 💐

Namechangenecessity · 18/10/2019 23:23

Cannot read and run. I don’t know what to say to you OP, or the others who have posted in similar positions except I send love, prayers, good vibes whatever you want to call it. And strength for you all.

runwithme · 18/10/2019 23:24

I'm so sorry to hear this shitty news. Cannot imagine what you're going through. Cancer can do one. Sending love in bucket loads xx

Srictlybakeoff · 18/10/2019 23:25

That’s so awful. My dad died at a young age of bowel cancer ( tho not so young as your dh) and I still feel cheated .life is so crap sometimes . All my best wishes

fartingsparkles · 18/10/2019 23:33

Oh OP Flowers

Been there, done and got the t shirt unfortunately. May 2017, Dh was 39 and the cancer was in the oesophagus with liver metastases. Prognosis of 6 - 12 months.Chemo helped for a bit. We found out just as we also found out I was pg with dc1 (had a 6 year old already).

We got just over 12 months.

It is totally and utterly a massive steaming pile of shit. Lots of love

Answerthequestion · 19/10/2019 20:36

I am so sorry to hear this’s unfortunately I am living a parallel life.

However, I find it hard to believe that they are giving you no other options after 1 sort of chemo. Have you had his rumour tested for mutations? If not please ask for to be done. If you can afford it use Caris testing which will give you a huge amount of information about the make up of the rumour and which treatments he is likely to respond to. Also for whether he has the markers which would make immunotherapy successful PDL1 and whether he is MSI high which would tend indicate a good response to immunotherapy. . There are many many different bowel cancer treatments even at stage 4.

Are you with a major teaching hospital? If not get yourselves to one now. You need a second opinion from somewhere like the Royal Marsden or The Christie as first call or St Marks who are part of Northwick Park. They are the leading centres.

There are a good few blogs of people living with stage 4 bowel and there are lots of trials and new treatments. Look at bowel babe and bowel bloke and even George alagiah the news reader

Good luck. It’s a crappy journey

As someone said to me

“There is a great difference between there is nothing more that we can do and there is nothing more that can be done”

Difficultcustomer · 19/10/2019 20:49

(((loubieloo4))). So sorry you your DH and DC are having to go through this Flowers

InsertFunnyUsername · 19/10/2019 20:50

I am truly sorry OP and my heart goes out to you your DP and your sweet children. Life is cruel Flowers

Span1elsRock · 19/10/2019 20:56

Life can be unspeakably cruel at times Flowers

OkayGo · 19/10/2019 20:58

Oh op and others who have shared their situations. Life can be so cruel :(

HavelockVetinari · 19/10/2019 20:59

I am so very, very sorry you're going through this. If it helps, keep posting - MN is a good anonymous place to rant at the unfairness of it all. Your family doesn't deserve this, it's properly shite SadFlowers

yellowallpaper · 19/10/2019 21:01

My neighbour who was a similar age when diagnosed with lung cancer that had also spread to stage 4, non smoker for 9 years, was told the same thing. She asked to go on a trial and was put on the one where the body is stimulated to produce its own cancer fighting cells. Not sure what it's called but it's big news. I think it's immunotherapy. She still alive and well 5 years later although has had to stop the therapy and the tumour is growing again. Can't begin to imagine how you feel

TARSCOUT · 19/10/2019 21:02

I am so sorry, there are no words really

Kaddm · 19/10/2019 21:04

OP I am so sorry.
That is so sad and cruel.

HollyBollyBooBoo · 19/10/2019 21:07

Oh Op, I'm in floods. Life can be so shit. Thanks

Fishcakey · 19/10/2019 21:07

Just hugs. No words. Xxxx

FiveGoMadInDorset · 19/10/2019 21:11

Life is shit and cancer can fuck off. So sorry to hear this. My DH died in July from bowel cancer. DC's are 11 and 13. You are not alone Flowers

Ginger1982 · 19/10/2019 21:20

So sorry to hear this OP.

When I was 12, my dad (who was 43) was diagnosed with bowel cancer. He also had chemotherapy but sadly he died 4 months after he was diagnosed not long after I turned 13.

As a child who lost a parent in this way, it is shit, unbelievably shit.

Perhaps if he feels up to it he could make some videos or leave some letters for the kids. My dad wasn't able to do this and I often think it would have been a lovely thing to have.

Try and spend as much quality time as a family as you can. Please also look into some kind of palliative care when the time comes if he's going to be at home. Macmillan nurses were a great help to my mum.

There are so many charities nowadays to help bereaved kids. There were none when it happened to me or if there were, nobody ever pointed us in their direction. Having someone out with the family to talk to would have been really helpful for me.

Take care of yourself too. You might find in the days and weeks after that you go into autopilot trying to be strong for your kids. Make sure you have friends and family around to allow you to cry/rage away from your kids.

There's probably a million other things I can't think of right now so feel free to pm me if you want some more advice from a child's perspective.

Lastly, as someone who has been through this, 24 years later, I am fine. I am very happy. I still miss my dad a lot, particularly now I have DS who looks so like him, but I am very happy and your kids will be too Thanks

rainbowruthie · 19/10/2019 21:23

I am so sorry, sending kindest thoughts to you and your DH Flowers

SubmersibleSandwich · 19/10/2019 21:27

What an awful thing to happen. I don't want to read and run, so Flowers to you, OP.

PoohBearsHole · 19/10/2019 21:43

I lost my friend who was 36 to this horrible disease. She was a non smoking super healthy marathon runner who got back ache which was how it was eventually diagnosed. She wrote an incredible blog and her dh posted when she died a message on her behalf. It went viral. It was still no solace to any one 😢.
I can “imagine” what you are going through because of my friends dh and young dc. I have no words that can help you, and I’m so sorry this is happening to your family.
What surprised me is how youthful a lot of sufferers are, it totally sideswiped me that this is not well acknowledged and that treatment has yet to progress.
Rant away, and make as many memories as you can whilst trying to keep a stable life for your children. Spoil yourselves with memories, get angry here and most importantly love each other as much as you can.
I’m so sorry I don’t have words of wisdom or know of a way to fix this. It is so cruel for you all.❤️