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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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loubieloo4 · 25/06/2021 23:48

It's been a while!

Good news first! Our amazing dd has just finished her PGCE and has already got her very first teaching post! She will have her very own class in Yr1 starting in September 🎉🥳 I have no idea how she has managed to achieve so much with the last two years. So damn proud. Lots of happy tears.

Then obviously because our lives don't seem to let us have any sort of bloody break to celebrate...... dh had a scan and the results are shocking and scary. He has had some pretty major growth in all tumours and a new one in his abdomen that is bigger than any of his others. Plus his tumour markers have doubled.

Two things piss me off about this

  1. why do they leave his scans so far apart
  2. they fucking rang us at 19:45 in the evening to tell us 😡 who the hell thick's that's ok?

So now we have to wait until Wednesday to see them (in person for the first time since Dec '19😱) thankfully they are allowing me in. They did say to dh on the phone that is very urgent and they will be giving him a different chemo this time, which in medical,terms for dh means last chance chemo due to his very rare mutation.

Fuck fuck fuckity fuck. We were hoping for another six weeks off now there are more countries added maybe even have a holiday.

It feels like the beginning of the end, albeit slowly. Even dh feels like it, which is so unusual for him. He said he can feel where it's grown and is taking more painkillers. The new chemo has more side effects and he will lose his hair, which he really doesn't want as it will make him look and feel like a cancer patient.

So yet again my heart shatters that little bit more.

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Cheeseandbiscuits1 · 26/06/2021 06:52

God love you. I haven't commented before but have read the full thread. Congratulations to your dd, you must be so proud. I can't imagine what you are all going through right now. I hope you get some sort of holiday, if only a UK one. Sending you all my love, will be keeping you all in my thoughts.xx

Cheeseandbiscuits1 · 26/06/2021 07:03

Did the life insurance ever pay out? How horrendous of them forcing you to fight them for it when you have so much else going on.

BooksChocolateAndSleep · 26/06/2021 08:45

Oh Loubie.. The hugest of congratulations to your daughter, what an amazing achievement and even more so because of the last 2 years.

I'm so sorry to hear about your DH and calling you in the evening is a really shitty thing to do. I do hope you manage to get away somewhere and also that the new chemo isn't too awful for your husband. Sending lots of love xx

AgathaMystery · 29/06/2021 16:46

i'm so sorry to read this update. huge love to you all xx

loobylou10 · 29/06/2021 21:37

Goodness me you are incredible. My words mean nothing but I really am sending you and all your lovely family so much love. Thanks

Aliceclara · 30/06/2021 18:59

I just wanted to send you my thoughts and prayers and to say what admiration I have for you and your family for your love and stoicism through what is a truly hideous and unfair set of circumstances. Sending positive vibes and hoping the universe will do the same xx

HitthefloorforTaintedLove · 06/07/2021 18:18

Oh Loubie,

Sending so many congratulations to your daughter whose achievement is magnified by having got there through such a difficult time.

Sorry to hear about the growing tumours and the new one that is really awful.

Hoping they have started your DH on the new chemo or got some plan in place.
Also hoping the two of you can get some kind of break, even an overnight in a hotel for a change of scenery.

Sending big hugs 💐

Borntobeamum · 08/07/2021 15:26

I’ve just read all your posts. You write so eloquently and I’m sure, in time, you may consider re-reading them all.
I’ve been diagnosed with cancer, so reading from your perspective has helped me to ‘deal’ with my DH, understanding what he’s going through.
It’s not easy. It’s crap.
Sending you and your lovely family lots of positivity x x

hellotesting123123 · 24/07/2021 23:22

Just wanted to chime in to say I'm so sorry about the recent news. You are a very strong woman and no one deserves this.

loubieloo4 · 10/08/2021 23:08

So dh is now on a chemo call Folfiri, he had his 2nd round last week. The side effects are shit and he's been more sick since being on this than any other time 😡 he feels sick, has diarrhoea, his hair is falling out (although his pubes fell out in one go last week 🤨) he has inflammation in his nose and throat..... it's really rough. I'm not sure it's worth it if I'm honest, that must sound awful 😞 he's not living a life right now and to top it off, I think he has steroid induced diabetes. It really is death by a thousand cuts. He even looks like a 'cancer' patient now. He's done so well for so long, I can see his mental Heath is struggling now too. I don't know if he's just resigned to feeling like shit for the foreseeable or that the only way out is for him to die 😭 how do you even get your head around that?

Anyway I'm moaning again sorry, if only we could have something to aim for or to look forward too........

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loubieloo4 · 10/08/2021 23:12

Thank you for your messages I do read them all, even if I don't respond and honestly they really do help.

@Cheeseandbiscuits1 no the life insurance still hasn't paid out.

@Borntobeamum I'm sorry you find yourself on this shit show. I wish you and your dh the best of luck.

@HitthefloorforTaintedLove as always thank you for your support and love.

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marmaladehound · 15/08/2021 19:43

I have not commented on here before but read through your thread.

I have no real words of comfort at all but wanted to send you and your family a big virtual hug. How does life get to a point for someone so young that the alternative to die may be better, just so sad and god knows how your get your head around that, I am not sure you can.

Lots of love xxx

notapizzaeater · 16/08/2021 20:38

@loubieloo4 it is shite ! Day by day, drip by drip. 'Luckily' DH was unaware towards the end 😭

Mummapenguin20 · 19/08/2021 19:29

♥️

loubieloo4 · 13/09/2021 05:02

So it's 04:40 on Monday 13th September which is DH's 41st birthday, considering he wasn't meant to make it to his 40th this extra year has given us something so profound I can't put words together to describe it!

We had a really rough few weeks on this chemo, where we had a very real and scary talk about stopping it. As it I got hold of one of his chemo nurses and begged them to help. He now has a much better anti sickness tablet and various other meds that have made a small difference but huge in DH's mental health (I think one of his new meds has an antidepressant in it, keep meaning to check!)

one more chemo tomorrow then a scan. For the first time I'm actually shit scared of this one, I've had the usual scan anxiety but this is so much worse, it's painful, it's actually hurting my heart. I can't shift that awful sense of doom that this chemo hasn't worked and we really will be out of options.

And no fucker gets it, "be positive I'm sure there are plenty of treatments he can have, my uncle's girlfriend twice removed had such and such and it cured her" 😡 I just want to scream (even my best friend refuses to believe it, denial maybe but I need her to be strong for me and hold me whilst I'm sobbing that my world will never be the same again "
NO THIS IS IT, LAST CHANCE THEN HE WILL DIE
Why can't people listen, give offers of support, coffee and a chat just to get me out of the house and not thinking and worrying.

So I'm currently sitting writing this listening to songs for his funeral, I hope with all my being that he will have years left but the truth is he doesn't and I have to prepare for that. So I'm making a list of things that need doing, I obviously don't want dh to see the list or listen to this fucking harrowing music. He will need to help with a few things like passwords etc but I'm sure I can slot that into normal conversations.

So yeah a very long shitty night, but I have time to shower and put on a smile to enjoy and be thankful we have made another birthday.

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notapizzaeater · 13/09/2021 08:14

Happy birthday DH, we was 2 weeks short of DH birthday, so that made it hard as straight after we had his birthday, then mine, then the funeral then Valentine's Day within 3 weeks. I know there's never a good time but there's bad times too !

Luckily my best friend 'got it' as her dad had died 18 months earlier from cancer. DH tummy was bloated (kidney issues) his drugs gave him a 'tan' so superficially 'looked' ok, it was only if you saw him naked you realised he'd no bum, muscles in his legs etc.

A couple of months afterwards I heard 'dancing in heaven' if I'd heard it before it would have been one of my songs, I sobbed all the way through it.

We ran out of time to sort passwords etc out, tbh he was confused for the last few weeks when we could/ should have been doing that so the earlier you do it the better. It's hard as DH didn't accept he was going (and in reality the hospice had said 3/4 months - we got 2 lucid days, 2 very confused days then 4 days in a coma)

50ShadesOfCatholic · 14/09/2021 10:23

Oh that is so sad and difficult, you must be exhausted from all the emotional energy required to stay strong. Is there anyone at all who will sit with you and help you with practical things like choosing music for the funeral or lists of chores to be done? Why is it people offer to help in any way except the way that is needed.... sending love and very best wishes x

loubieloo4 · 14/09/2021 11:02

@50ShadesOfCatholic

Why is it people offer to help in any way except the way that is needed.... sending love and very best wishes x

This is so true sadly.

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iwantavuvezela · 14/09/2021 11:13

@loubieloo4 - I am so sorry reading your updates, and it takes me back to that place supporting DH - it really resonated with me when you said about everyone also putting a positive spin on things - i actually spoke to my bereavement counsellor about this, when things where going really fast downhill for my DH, i phoned a friend sobbing (trying to explain the loss that was already happening and to come) and she asked me if it was perhaps side effects of the Pfizer - NO - i wanted to scream its the stage 4 brain tumours that would be causing the side effects. Or when i told family that new "spots" were discovered in a MRI and DH would be having radiotherapy, "good" they all said - with me thinking How can this be good, how can new "spots " or radiotherapy be good news .... I have really struggled with this, and its a lesson for me in the future to learn how to support others when they may go through something like this.

So to you Loubielou - sending you some thoughts your way, and acknowledging to you that this situation is shit, and hard, and it will continue to be this way - and for you to acknowledge to yourself how absolutely well you are doing in supporting your DH through this whilst managing your own thoughts and emotions . You are amazing.

AgathaMystery · 15/09/2021 11:50

Huge love to you xxx

HitthefloorforTaintedLove · 16/09/2021 20:30

I hope you managed to celebrate DH's birthday, I guess there were tears and it must have been an exhausting day too.

Maybe people need alternatives to all the platitudes they spout, or just to turn them around a bit.
Here are a few for you @loubieloo4
Don't feel you have to be strong in front of me.
If you are fed up of positive thoughts I'm here to listen to your negative ones.
I think it's so so shit that your DH won't be cured.
I know he's tried so many treatments, and they can make a person feel awful, and it's so hard to watch.

If you want to vent here go ahead, or do it when you're talking to yourself in the car or wherever you get alone time.

I'm not against a positive attitude in case it comes across that way, I'm trying to say others don't have the right to want to make you be positive in order to make themselves more comfortable in your conversations with them.

Sending hugs, 💐, tissues xxx

loubieloo4 · 18/09/2021 05:14

This is my wonderful dh, looking great with or without hair

Dh stage 4 bowel cancer
Dh stage 4 bowel cancer
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loubieloo4 · 18/09/2021 05:17

The first picture was him during chemo number 25! The 2nd a few days after we shaved his head. He hated having it shaved (tears from both of us) as he thought it would look like a cancer patient!

I think he rocks it well, at least shaped head 😂

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loubieloo4 · 18/09/2021 05:19

This reply has been deleted

Message withdrawn at poster's request.