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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....

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Alpacamabags · 02/06/2020 22:06

If possible start emailing so you have a paper trail to put the pressure on. Even if it is just a "further to my call today" email. That way if you're still getting no response you can chase complaints dept.
I'm so sorry that you are dealing with all of this x

HitthefloorforTaintedLove · 02/06/2020 22:10

@loubieloo4 reading your post from a few days ago just want to say that you are not selfish or lazy and I'm sure your DH doesn't think so either. You're thinking of him and your children, and he does sound like a wonderful man, and the wallpaper really is one of those anecdotes that shoes a glimpse of that.
Amidst all this glad that the walk with your parents helped.
Hoping some of the shitty phonecalls bring some kind of result. 💐

loubieloo4 · 04/06/2020 20:45

I spoke to the dreaded pa yesterday which was about as useful as a chocolate teapot, dh has an appointment on the system for 24th June but she doesn't know what for. I asked how long dh should take the steroids for as he's been on them for 3 weeks, she has no idea. Doesn't know when his normal scan is going to take place as routine scans are on hold...... I'm not sure active disease is classed as routine 😡 apparently she will get in contact with the oncologist

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loubieloo4 · 08/06/2020 20:49

Spoke to the GP today, she has prescribed dh some more steroids and sleeping tablets. I also asked if she could help with our lack of contact from the oncology team. She is disgusted that we haven't seen anyone face to face since December and that dh should absolutely be classed as priority. Hopefully she can make some waves and get him seen.

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notapizzaeater · 08/06/2020 23:24

Failing that PALS are quite good to get things moving.

loubieloo4 · 09/06/2020 21:15

Good news, dh brain scan is clear phew. His gp finally got hold of the oncologist pa and demanded to know, she has also requested his scan to be done as urgent. Gp has also put in a complaint in about how dh has been treated and the lack of communication and regardless of the pandemic is absolutely classed as a priority.

She told dh to stay on the steroids as they are making him feel so good

Thank god for his gp, it's nice to feel like someone cares

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notheragain4 · 10/06/2020 08:35

Really pleased for you all, great news and lovely to have the support of your GP. Glad a complaint is being made.

loubieloo4 · 03/07/2020 22:07

It's been a while...

Dh has been doing very well apart from a niggle in his hip. Finally had his normal scan (a month late due to covid) now the very long wait for the results, he has a telephone appointment on 29th July.

We are still waiting for the insurance, it's getting silly now 😡

Thinking about a holiday, hopefully as soon as we can, fuck covid! I'm looking at some very lovely hotels in Greece, we just need them to allow us in now.

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loubieloo4 · 08/07/2020 23:01

Today we had a payout from his pension and they have shut his account, it seemed crazy to be paying for a pension he won't get to use. His gp filled out the form and agreed he has less than 12 months to live, we know this but seeing it in writing takes the wind out of your sails.

The payout wasn't huge but enough for dh to stop worrying about the furlough for a while and the extra we will gain each month (as no more deductions) will be good to have for days out, meals etc now the lockdown has lessoned. I even treated myself to a decent pair of headphones (noise cancelling!) so I can enjoy watching programs whilst the dh has the bumming sport on 😂

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notapizzaeater · 08/07/2020 23:57

That's one less hassle for you to deal with and enjoy the money now, DH is in total denial about his pension, we still pay about £750 a month into it, when I suggested we just stopped or dropped it to the minimum he was horrified as we will need that to retire on 😢

What is it with men and sport, I was secretly pleased when the football stopped, now it's match after match after match !

Jullyria · 09/07/2020 03:16

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HitthefloorforTaintedLove · 21/07/2020 23:59

Hope you get to go on holiday @loubieloo4, glad the pension is something but that's so bad to still be waiting on insurance.

loubieloo4 · 09/08/2020 18:54

So dh and I spent a wonderful 2 weeks in Greece on our own without the children 😉 we stayed in a 5* hotel in a swim up suite (fully pushed the boat out) it was perfect, dh slept a lot, read a lot and ate a lot 😂 all whilst I could be on the patio sunbathing or reading. Paradise.....

Then we got home and the world fell to shit again.
We took some left over steroids on holiday so dh would have some energy, worked great until we got home. 2 days after getting back we were in A&E due to dh having left side chest/abdo pain that tramadol wouldn't shift. Thankfully it wasn't a PE which was my worry after flying, his heart was fine, however, they did see something on his CT which dh refused to hear the results as we have the oncologist on weds. A junior dr did slip out to me that he had read the report from his scan in June that there has been significant progression of disease 😢 that's without whatever they saw on the scan last week. Dh is burying his head in the sand as usual, which I get. There is no point in him having the results without knowing the plan. He doesn't know what the dr told me.

He is home now with oramorph for any break through pain he has again, this feels like a slippery slope and we are already on borrowed time. Cancer is shit

Dh stage 4 bowel cancer
OP posts:
bengalcat · 09/08/2020 18:58

Sorry you’re having a shit time but that beach photo - wow - idyllic and absolutely timeless

FlatBeer · 09/08/2020 19:08

Thinking of you and your family, OP. The holiday sounds like it was incredible. The rest of your update is terrible for you and your poor DH. You will be in my prayers.

Louise91417 · 09/08/2020 19:11

Cancer is shit, it is also a complete bastard...you have made some lovely memories...you and your family are in my prayers. Stay strong.flowers]

HelenaJustina · 09/08/2020 19:12

You are in my thoughts and prayers. So glad you finally had the holiday you needed.

Hippofrog · 09/08/2020 19:17

Thinking of you both x

morefun · 09/08/2020 19:21

So sorry for you all. It's so unfair.

That's a beautiful picture.

Crispsareafoodgroup · 09/08/2020 19:31

I haven’t read the full thread but the same thing happened to my dh. He was diagnosed with stage 4 bowel cancer with mets in liver and stomach. He was given the same prognosis as your dh. We have 2 young children.
I’m truly sorry for you and your family. If you want to message me but you may not want to think too far ahead. Lots of love.

Louise91417 · 09/08/2020 19:34

@crispsareafoodgroup..so sorry you are in same situation..you and your family are also in my prayersFlowers

Frikonastick · 09/08/2020 23:31

thinking of you @loubieloo4 xxx

hellotesting123123 · 10/08/2020 08:46

I'm so sorry @loubieloo4 :(

HitthefloorforTaintedLove · 10/08/2020 19:13

Oh @loubieloo4 I'm so sorry to read your update (the shitty part, I'm glad to read you enjoyed your holiday obviously).
Hope the plan is as good as it can be 💐

Cheesecakejar · 10/08/2020 19:22

Life is so unfair. Your holiday looked amazing, you both truly deserved it and I hope things can be the best they can going forward. Cancer is absolutely shit and we all have experience of how it tears through families, your strength is admirable Flowers