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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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Minxmumma · 07/05/2020 06:56

They will scan his brain if you have sensible concerns. Does he have a specialist nurse or contact with the hospice at all?
With my Mum if I can't speak to her oncologist then I go to one of these or even the sister on the chemo unit. Failing that ask the rude secretary for the consultants email address.
Hope you can get some help today. Gentle hugs x

HitthefloorforTaintedLove · 09/05/2020 15:27

Hey @loubieloo4 just wanted to say I'm thinking of you and hoping a scan can be arranged for your DH with a view to helping him feel less confused.
If this sounds ridiculous please ignore because I think I can tell where your worries would lead you (and I would feel the same) , but is there any chance it's a less scary reason, a UTI can cause confusion sometimes. In any case he needs medical advice.

loubieloo4 · 09/05/2020 19:05

@HitthefloorforTaintedLove

Thank you for thinking of us, sadly I know it's not a uti, I'm a nurse and we have some tests at home 😉
Hoping to speak to his gp on Monday

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HitthefloorforTaintedLove · 09/05/2020 23:13

Sorry Loubieloo, I thought it would be good if it were a UTI compared to some of the possibilities. I didn't know you were a nurse, I imagine that makes some things easier and some things more difficult for you. I hope his GP will consider this a priority on Monday.
Sending hugs and strength 💐

loubieloo4 · 13/05/2020 02:50

I spoke with DH's GP and she has arranged an urgent head scan, she will also see if she can get hold of his oncologist to see what the next steps are anyway. I'm hoping they will do a full scan as he is due one anyway and we have to give him diazepam beforehand to stop him passing out, poor man passes out every time he has any sort of needle. So one scan would be better for him. Not sure how long it takes to get an emergency scan, I'm guessing in the next couple of weeks?

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loubieloo4 · 13/05/2020 03:03

@Oliversmumsarmy

Sorry I thought I had replied to your posts, obviously not 🙁

It's shit that you find yourself in the same situation, the NHS can be wonderful at times but other shocking. As you can see at the start of my thread we had a couple of issues to begin with. Thankfully we are now with an oncologist team that I trust (it helps that they work in the same hospital as me!) I hope you and your dh are doing ok. Feel free to chat away on here or contact me if you want some support 💜

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HitthefloorforTaintedLove · 13/05/2020 08:20

Definitely sounds like a full scan would be better if they are able to do that and save your DH an additional appointment.
Hope it comes through very soon, if they don't have routine scans booked in fingers crossed they might find a slot in the near future.
That's horrible for him re needles, as if it's not bad enough.

loubieloo4 · 13/05/2020 20:58

The oncologist department rang today, he is having a blood test tomorrow and a scan of his head only, should be within the next 2 weeks. They have started him on steroids from tomorrow just in case. Hopefully we are just worrying over nothing and maybe it's the side effects from chemo 🤞🏻

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SlightyJaded · 14/05/2020 14:18

Fingers crossed for the scan OP. Hopefully a side effect of the chemo.

HitthefloorforTaintedLove · 17/05/2020 22:32

Very short notice but Bowel Cancer UK have an ask the expert if you submit a general question by 9am tomorrow a consultant may answer.
They are also organising zoom meetings for patients who are shielding.

Hope the scan date comes through soon @loubieloo4

loubieloo4 · 19/05/2020 17:54

Getting very frustrated now, we are still waiting for DH's CEA (tumour marker) blood test results and his scan date. I have tried to ring the oncology department, his oncologist, the appointment line for the hospital. I did manage to get hold of the gp receptionist who said his blood results don't go to them if they are ordered by the hospital 😡

Genuinely feel like people who have cancer have well and truly been forgotten about during the covid crisis.

Fed up of it all now 😢

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SlightyJaded · 20/05/2020 09:53

The postponing of so many important treatments shouldn't be happening. The few medical people I know tell me that with the exception of the Covid wards, the hospitals are quieter than they've ever seen them. I'm not surprised you are frustrated OP. Keep trying Oncology and hopefully they will come through.

loubieloo4 · 21/05/2020 21:29

So dh finally has a scan date for this Sunday, I hope the results aren't taking longer to get results due to covid. Dh is in a sulk as he isn't allowed to drive until he gets the results back. If he can't drive again (assuming the worst), he will have to get rid of his car which is his pride and joy. That is one conversation I'm going to put off as long as I can! We do have my car which is bigger and more practical than his so the best one to keep in the long term, not sure dh will see it that way though. Still waiting for his CEA bloods from last week....

We have also been told that dh has been furloughed at the 80% government rate 😡 not his companies fault at all, they have truly been amazing throughout this last year. It does mean we are fucked now 😱😭 I gave up work last year when dh had his op (a year ago tomorrow) loosing my wage of £1500 per month, it was a good choice as I'm a nurse which wouldn't be great with covid. Dh has now lost £1500 due to the furlough 😟 it's going to be really tight. £3000 a month is a lot miss each month. I in theory could go and dome some shifts at the hospital but we would lose the carer's allowance and I would have to move out, so not to put him at risk.

The bloody universal credit system is crazy, if I apply for help I would get £43 a week but would lose the carer's allowance of £66 ? How on earth do they think that works out right?

I know we have been very lucky in not having to worry about money since he has been diagnosed but I really don't want him to start stressing about money now, for what could be his last few months. We really need to life insurance to get their act together and pay out now.

I'm also struggling trying to be and do so many things all at the same time, it's all just getting to much. I selfishly find myself wishing it was me that had cancer so I could refuse treatment and die a nice peaceful death.

Sorry for the essay I just needed to get it off my chest so I can plaster the permanent fake smile back on my face and pretend everything is ok.

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GlitteryFluff · 24/05/2020 09:45

I'm no good with words but wanted to say thinking of you both today. Hope the scan goes ok. Thanks

HitthefloorforTaintedLove · 24/05/2020 11:21

Hope the scan procedure goes well today and that they can give you an idea of when results will be available.
So much frustration for you, it's difficult to imagine. I think you had someone chasing the insurance company for you, can you tell them about your change in financial circumstances and see if they can up the pressure regarding the policy.

The UC rules have caught people out, they put in claims that were declined but still lost other benefits.

Sorry you feel so low, quite understandable of course, the idea of just not having to deal with all this awful unfair stuff.
Is there anywhere you can take off the fake smile for a while, it will be exhausting. 💐

loubieloo4 · 25/05/2020 02:05

Thank you ☺️

His scan went well, he didn't faint 👍🏻 the diazepam seems to do the trick.

Now the long wait for results......

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loubieloo4 · 27/05/2020 18:53

Still no news on his bloods. Dh seems to be much better in himself, the steroids seem to have made a huge difference, which worries me even more. Does that mean he does have brain mets and they are helping or he just needed a pick me up? The constant worrying is a massive head game. No news from the insurance yet either.

Cancer is shit

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loubieloo4 · 29/05/2020 19:09

Today I have spent the day hiding away crying 😢

I had a big clear out of a cupboard and found dh has at some point marked up all the bits of wallpaper we have from decorating with notes telling me where they are for etc, notes like this...

"Baby, this is the downstairs hallway. Should be enough for 4 strips, it's all the same batch number I checked. Love you always"

How am I ever going to live without this wonderful human, today the weight of it makes it hard to breathe. It's not fair, he is a good person and deserves to live his life fully. I look at him and my heart breaks.
I really want to spend this time enjoying him whilst we can but god it's so fucking hard, I'm miserable and angry. I want to be happy and have fun and make lots of amazing memories but I can't the anger just makes it so hard. Dh of course as always is being amazing, he is doing more than me at the minute, I can't find the energy to do housework or cooking, it just all seems pointless.

He deserves so much more than the lazy, selfish wife he has. How do I get myself out of this when the future looks so shit, I literally have nothing to look forward to for the rest of my life other than loneliness and poverty. See selfish, why did dh have to get this shitty disease, the children would be so much better off if it was me.

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flapjackfairy · 29/05/2020 19:17

Oh darling. Huge hugs of support. You are not selfish at all. You are brave and amazing even though you can't see that. I habe no words of advice other than to say be gentle with yourself .
You will get through it one day at a time . There is no other way. Don't think of the long run that will overwhelm you just deal in the here and now. Xxx

notapizzaeater · 30/05/2020 16:16

((Hugs)) yup it's shite 🤯🤯🤯😭😭😭

SimplySteveRedux · 30/05/2020 16:37

I'm so sorry for what you're going through. Thanks

Is your husband claiming PIP? I believe they prioritise claims from people with terminal illness.

loubieloo4 · 31/05/2020 18:14

@SimplySteveRedux dh does have pip thank you 😊

We had a much better evening yesterday after we decided to go on a walk with my parents. The first time we have been out in 11 weeks other than the hospital appointments for dh. I didn't realise how much I really needed to see my mum 💜 the fresh air and a long walk has done us both the world of good.

My parents have been isolating for the same amount of time as us, even though they don't need to. They have done it just so they could be with us if we needed them. My mum has been amazing since dh was diagnosed. I'm so great full, we had a very difficult relationship when I was younger (I spent my later childhood in foster care) but she has more than made up for it now. I honestly don't know how I would have coped without her.

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loubieloo4 · 02/06/2020 21:03

Still not heard from the hospital for blood test or scan results, no letters for an appointment nothing. I am going to ring the oncologist' pa tomorrow (I have to build myself up to talk to her, she really is horrible). Dh is also due his routine scan around 4th but heard nothing about that either. Bloody covid seems to have completely taken over for cancer patients 😡

I'm also going to get in touch with Macmillan to see if they have anything back from the insurance, might as well get all the shitty phone calls done in one day.

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notapizzaeater · 02/06/2020 21:17

Can you get her email address for next time and chase her that way?

When DH was in hospital Saturday the nurses were non-existent, bearing in mind he went In for confusion they left him to sort his own meds out. He ended up taking the day ones at bedtime 😥

Our test results are actually coming through aisle if COVID, odd how different hospitals have different timescales

notheragain4 · 02/06/2020 21:33

Hi OP, I've only just seen this thread. I just want to say my heart goes out to you and your family, what a horrific thing to endure at the best of times but with Covid this all just sounds horrendous. As for L&G, we have our insurance with them and we need to change it this year, I will be seriously looking into changing providers. Just shocking.

You are doing remarkably, hope you get the results soon xxxx