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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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Oliversmumsarmy · 15/02/2020 05:35

Really sorry you are going through this.

Dp was diagnosed in A&E after multiple visits to the doctors.

He came home from work on the Friday and went to bed. He woke up the following morning looking like he had lost 5 stone over night.

Ended up in A&E on the Monday, unable to walk. He was diagnosed with stage 4 bowel cancer

Was given a course of chemo but then the shutters went up on anything more from the NHS.

That big operation with Hipec treatment (he also had his spleen and part of his stomach removed we had to pay for. NHS refused it as it would have just been buying time.

Dp I think is only alive today because of that operation.

Still living on tenterhooks for when it returns. We are 4 years post diagnosis.
He has had to give up work though. (A case of jump or be pushed. Don’t think they wanted to pay out the life insurance)

HerkyBaby · 15/02/2020 07:06

Dear OP this absolutely should not be happening. There is a reason why life insurance is taken out and this IS it. If you are able to send a copy of all the details you have given to us to your MP, the financial services ombudsman and send it to the two correspondents in the Telegraph and The Times who deal with financial complaints. They actually have problem pages. Can any of the Cancer Support charities such as Macmillan help you deal with this claim? Has your husband ever been a member of a trade union because if so I am quite sure given your circumstances that there might be people there that can help and apply pressure. Check your home insurance document- you will probably have some sort of legal cover to costs of engaging a solicitor to help deal with this insurance claim. Write to the entire board of directors and ask them at what point they do pay out for terminally ill patients and ask them how they would feel if it was a member of their family being treated this way. Finally OP we really need to know who this life insurance is with so that we can lead the way in moving our policies to other more reputable companies. Oh and OP I’m really sorry this is happening xxx

PerkyPomPoms · 15/02/2020 08:35

Can you talk to CAB re the insurance - surely there are options?

loubieloo4 · 16/02/2020 01:22

Legal and general are the insurers

I have contacted the ombudsman, I have to complain to L&G first and give them chance to respond.

We first started the claim at the start of August! In October his oncologist stated he was stage 4 with numerous mets (they went into detail) and had a life expectancy of 12 months or less. Why didn't they bloody pay out then🤬 they wanted a newer scan following his chemo treatment, which did show a partial response to 2 of his mets the rest stayed the same. The oncologist told us it probably hasn't changed the original diagnosis. So the life insurance are saying no as he has had a partial response.

They are willing to keep his case open as he is due another scan in March.

I will take it as far as I can including the tabloid papers and our local mp, thank you for the suggestions.

It's not even about the money as such it's the memories it could make, like going away just the 2 of us whilst he is "well", choosing a necklace each for our daughters for when they get married etc. We won't be able to get a bank loan due to previous credit problems (years ago, when dh had his on business and the recession hit).

It has made me so sad, angry, confused and I feel like I'm grieving for the memories we will miss out on.

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StartingAgain33 · 16/02/2020 01:51

This is just so sad and so awful. I am so so sorry. Life is just absolutely shit sometimes

Oliversmumsarmy · 16/02/2020 07:59

I feel like I did when he was first diagnosed, stuck in limbo land waiting for the bad news to come

I have tried to explain this to friends and I don’t think they get it.

It is though your life stops and plans for the future are off the table but life keeps going and you are just waiting for the inevitable.

We are 4 years down the line and the limbo is completely shit.
We live in 12 week chunks. (Dp was being tested every 3 months)
As fast as he was having scans and tests then the appointment for the next would be put in the calendar.

We thought we were covered with life and health insurance but even these have been taken away.

No one would pay for the big operation he had but it was agreed that if they discovered cancer in any area that was operable in the future the health insurance would pay for him to go private to have it removed.

Now that has been taken away if anything happens then it is up to us to pay.
We spent everything on the Hipec operation. There is no money left.

I feel very angry towards the company he worked for who pushed him out.

I feel like they have signed his death warrant

The NHS have been next to useless through all of this.

StartingAgain33 · 19/02/2020 10:22

Just bumping this up the thread.

I'm so sorry @Oliversmumsarmy. Do you have people you can turn to for emotional support, or a way to let any tension out? That probably seems like an annoying question. I just remember being in a similar situation and feeling like i could never / should never switch off and try and find some kind of outlet / distraction, because at least I wasn't the one with cancer, but I ended up getting extremely burnt out - which ended up making me even less helpful.

It's hard though because even if you try, you can't get your mind off this situation.

That company should be fucking ashamed of themselves. Is there anything you can do legally to prove that letting him go was unwarranted?

HitthefloorforTaintedLove · 19/02/2020 17:46

@loubieloo4 I have no real advice, what a rubbish situation and I don't know if anyone at the hospital or Bowel Cancer UK would provide info to back up the implications of your DH's diagnosis?

I just scrolled up and see @HerkyBaby has given more suggestions.

@Oliversmumsarmy I totally get the chunks of life between tests, it's been like that for a while for DH, though nowhere near as long as for you, and I actually think I could spontaneously combust with frustration some days. Relatives who knew he was having some pretty unpleasant tests sent a text obviously trying to be helpful and I just thought what fucking planet are they on?

Rubywhox · 19/02/2020 17:51

God OP I’m so so sorry that you and your family are going through such an awful time Flowers all the best

loubieloo4 · 01/03/2020 02:47

Dh has a scan on weds then oncologist for results on 25th another long three weeks stuck in limbo. He is doing great at the minute, better than me mentally. Still waiting for the life insurance to reply to my complaint before I can take it to the ombudsman.

It just kind of hits you at random times, I know he has cancer and it's terminal etc but I try not to think about after, if that makes sense. We had an invite to a wedding abroad next year which completely ruined me, there is a very high chance dh won't be here then, it hit me ten fold.

Less of the misery, our eldest turned 21 and we had a house party of all our loved ones, it was a great night (I got very drunk, which I never do, pretty much tee-total. My best friend managed to come which is a 5hr drive for them now along with shots, as any best friend would know, she knew I needed a big blowout! The hangover was worth it) and heart warming to see how many people actually care about dh and our family. Anyway I think I may of mentioned it but this photo is what love and memories we will continue to make. They were dancing to passenger let her go.

Dh stage 4 bowel cancer
OP posts:
ncncncncn · 01/03/2020 03:35

💐

eaglejulesk · 01/03/2020 04:15

Sending you and your family big hugs. I am so very sorry to read your story, it's just awful and so unfair. Flowers Flowers Flowers

YawnYawnYawnYawnzy · 01/03/2020 04:34

I'm so sorry.Flowers

notapizzaeater · 01/03/2020 14:16

The waiting between scans etc is so so hard, we're back Thursday
. I love love love the photo

loubieloo4 · 17/03/2020 04:11

So scan review appointment next week if it goes ahead. CV-19 is pissing me off! Will it effect his treatment, a few people have been told it's riskier to have treatment. We still have children at school/uni, we are stopping them from physical contact and will be keeping them from home next week......

So dh who could very well die in the next 12 months, may well be stuck indoors going stir crazy and unable to do even the sip,e things on his "fuck" it list that we made with the kids, we also won't be able to go on our semi planned 3 week holiday just the two of us for some much needed alone time. Not many memories to be made stuck indoors really 🙁

Dh himself looks and feels really well at the minute, small problems with his hands and feet but can cope with painkillers, our plan was to go away very last minute after his scan results next Wednesday regardless of the results, while he feels so good.

CV-19 can fuck off now, fuck off and let those of us who already have a difficult life at least plan so nice things to do with our loved ones before it's too late 🤬

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loubieloo4 · 17/03/2020 04:13

Oh life insurance, we have enlisted the help of the Macmillan's legal team, hopefully they will get somewhere.

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notapizzaeater · 17/03/2020 10:02

I totally get it, DH has 6/9 months, we where planning a cruise in June before kids broke up, holidays at Easter etc I keep thinking he won't be able to do anything as by the time we are ok to do these he probably won't be 😭🤬🤬🤬

loubieloo4 · 25/03/2020 20:32

Good news again!

The oncologist rang to let us know that there has been no sign of growth since his last scan in December.
Thankfully that means no chemo yet. I was worried that we would have to decide to go ahead with chemo and the risks due to CV-19.

This is our 2nd week in isolation, I have popped out a couple of times to get food and medication. Getting fed up of it now though, I hate that we can't make any nice plans whilst dh is doing so well (and there is always that nagging thought, for how long?).

I have never really been religious but have found myself saying the odd prayer or two when we have visited places and look around the local church or abbey. Yorkminster was amazing. Now I feel like I want to go back and say thank you.

OP posts:
loubieloo4 · 07/04/2020 20:43

Today marks the worst day of our lives. One year ago today dh was diagnosed with Bowel cancer.

I don’t know how we have made it through, a huge operation, being told he was stage 4 with less than a year to live.

Actually I do know, the love and support from friends, family and loved ones. Far to many people to mention. THANK YOU.

This amazing man, who I am so lucky to call my husband, my true soul mate and best friend has been so strong for the last 12 months. He took it all in his stride, kept smiling throughout it all and helped us all stay positive.

We won’t be celebrating the way we hoped but celebrate we will! The champagne is in the fridge for later. Here’s to another year of no growth in scans and hopefully some more adventures along the way.

Dh, you amaze me with your strength. I love you more than I could ever articulate. Thank you for being as wonderful you are, the children and I are so lucky to call you ours ❤️

THANK YOU everyone for the support you have gave us and continue to give us 😘

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HitthefloorforTaintedLove · 07/04/2020 23:13

@loubieloo4 hope you two enjoyed that champagne 🥂. You are lucky to have him, and his luck is in having you. Wishing you the very best 💐

HitthefloorforTaintedLove · 07/04/2020 23:15

@notapizzaeater sorry that this whole coronavirus situation has struck at such an awful time for your family. 💐

loubieloo4 · 07/05/2020 05:11

I am worried more than usual about dh, (39, stage 4 bowel cancer) he already has lots of mets including liver & lung. I think he needs a scan of his brain, he keeps forgetting words, stopping talking half way through sentences as if he has finished them iygwim, he's had a few dizzy spells, headaches and is getting very very tired. He was disagreeing with ds that the kitchen cupboards are called wardrobes yesterday. He's just not himself.

His last chemo was December and he is due a scan next month but we've had no correspondence from the oncologist since March, his usual oncologist has also been moved to help with covid. I'm not sure who to talk to about it the secretary is useless and rather rude whenever I have spoken to her before. I don't want to ask about scanning his brain in front of dh as he gets pissed off (he's obviously scared 😟) they have never scanned his head before, do you think they would listen to me without dh?

Still no news from the life insurance although the Macmillan team who are dealing with them have been great at keeping in touch.

Can't wait for lockdown to be eased slightly so I can go for a coffee with my mum and get it all off my chest.

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GoGadgetGo · 07/05/2020 06:23

Not much to be said exceptt I hope you and your family get the help and support you need.
Take care.
GGG

Livebythecoast · 07/05/2020 06:29

Morning @loubieloo4. I'm sorry you and your family are going through this.
Could you speak to your GP and request a scan explaining these new symptoms?.
I work in a GP surgery and we are experiencing similar problems with oncology consultants where the patients are having problems getting through to them but we are still referring for scans if deemed urgent - which I think in this case, it is.
Try and get hold of his GP and see how you get on. My thoughts are with you Flowers

ChangingStates · 07/05/2020 06:35

Those new symptoms do need checking out. If you can't get hold of his oncologist have you tried his Macmillan nurse- they may have some insight into what is going on and be able to sort out an appointment for him? When my dad was terminal the Macmillan nurses were a godsend!
Such an awful time for you all, lots of unmunsnetty hugs.