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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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MrsGrindah · 10/08/2020 19:29

This is heartbreaking and heart warming at the same time. What a beautiful picture of your husband on the beach. I am so glad you got that special time together. What can I say other than I , and every Mumsnetter who has read this thread, is sending you and your family lots of love and best wishes .

loubieloo4 · 12/08/2020 21:13

So it was shit as expected. Fuck fuck fuck fuck fuck.....

Scan shows previous tumours have grown and he has numerous new ones in both lungs and liver (to many to count in his lungs), the pain last week seems to be from his lung 😢
His tumour markers have shot up higher than they have ever been.

So the plan is a port next week, he had a picc line last year but hated it and had it took out after one cycle, however, due to the chemo his veins are shot and he is very phobic of needles, it took them 11 goes to get the iv in last week. He hated the picc due to the lines dangling down all the time, hopefully a port will be better as it's put under the skin with no dangly lines!

Chemo will start the week after to give the port time to heal, they are writing up for 12 cycles every 2 weeks with a scan after number six. He is going back on the same chemo (folfox) as last time. They have said there is a high chance the chemo will become ineffective due to the fact he had it before.

I was expecting the tumours to grow but didn't even consider new ones, urgh. The added fun of covid and his immune system being low brings a new set of worries, they have told us he won't be a candidate for itu if he gets it.

So life will be put on hold and will be run around hospital visits once again. I know we have been very lucky to not have had any treatment since dec but shit. I also wonder if he had been scanned on time the new ones might not of had chance to grow 😡

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KatherineParr4 · 12/08/2020 21:25

I’m so so sorry. Love to you and your family . Xx

loubieloo4 · 12/08/2020 22:38

Oh and to top it off the life insurance rant to say they have refused his claim again 😡

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Fuccia · 13/08/2020 14:19

I've just read your whole post and I am so very sorry you're going through this hell of a situation, OP.

How could the life insurance be refusing?? That goes against their own policy! What utter assholes.

loubieloo4 · 13/08/2020 22:48

So we have dates...

Port Tues, then chemo weds 26th Aug every 2 weeks until Feb. We are hoping for 12 cycles with a scan after the 6th o e to check if it's working.

Looking back at this time last year we are very lucky that they are giving him the chemo. Even though he is medically worse, and has more tumours than last Aug. Let's hope his body can take it 🤞🏻

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loubieloo4 · 18/08/2020 17:49

Port fitted, I wasn't allowed in, not even through the hospital doors 😡 fucking covid. Took over 2hrs as dh fainted twice, they should of sedated him. Got home at 11:45 and he's been asleep since.

Had a copy of his scan report from 7th August, it's worse than what they told us..... shit 😢

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mrssunshinexxx · 18/08/2020 18:59

@loubieloo4 so sorry don't know what to say it's not the same but I lost my mum 3 months ago 6 weeks before I had my first baby she was my best friend in the universe
Life is really shitty and none of us know why, your children will keep you going
Sending love x

Kashtan · 19/08/2020 10:30

Sending Flowers and hugs
So sorry for you all.

MeanMrMustardSeed · 21/08/2020 23:45

So sorry to see that DH’s report was worse than you had been told. Thinking of you both.

HitthefloorforTaintedLove · 24/08/2020 19:46

Oh @loubieloo4 I'm so sorry to hear that things are worse. And that they didn't sedate him for the procedure.
Are you getting any support in real life?
Sending hugs 💐

bloodywhitecat · 24/08/2020 19:51

My heart goes out to you both Flowers.

SunshineCake · 24/08/2020 21:39

I haven't seen your thread before *@loubieloo4 and have read it all in one go. I am so sorry for all that you are going through and completely gobsmacked by the insurance company. Would you think about putting a shout out on here for anyone to help? You need money to help, how can they be saying no?

loubieloo4 · 27/08/2020 19:28

So good news first 😊

Our eldest dd graduated with a first in primary education last week. One of the first things she said to me when we found out how ill dh was, "daddy won't get to see me graduate" well due to covid (😡) all ceremonies were cancelled, so we held our own ☺️ we are so flipping proud of her, how she has even managed to get up and go to uni this past year amazes me let alone to get a first!

Dh stage 4 bowel cancer
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loubieloo4 · 27/08/2020 19:29

Honestly it feels like we're in a carry on film some days!

Got to the oncology unit at 10:30, DH's chemo hadn't arrived so he had to wait around until it finally arrived at 13:00 😡 when that had finished they needed to give him a bolus of the 5fu before connecting the chemo he comes home with. They lost the bloody 5fu injection. It was eventually found at 16:00 in a BIN. They let me in at this point so we could speak to the senior pharmacist, the injection was in 2 sealed bags so they were happy to give it. They wanted to make sure we were happy for him to still have it. He did and finally got home at 18:00 😖 oh and his tumour rakers (CEA) has gone up again 😢

He did great though, the port seems to be the best thing for him, slept really well and feels ok today 👍🏻

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Fuccia · 27/08/2020 22:35

Congratulations on your daughter's graduation. You and your DH must be so proud! You've raised an amazing human, to be able to finish her degree with a first under the circumstances.

So sorry about the shitty hospital troubles. It sounds awful :(

loubieloo4 · 15/09/2020 22:54

So Dh celebrated his big 40 on Sunday! We were told last August that he probably had 12-18m life expectancy. I honestly didn't think he would make it. Sadly due covid we couldn't have any big celebrations but we had a lovely day at home with just the 5 of us. We actually managed to get all of us together to eat dinner which hasn't happened in a while, that was lovely 😊

He had his 2nd round of chemo (this treatment cycle, 9 in total including last years) he seems to be tolerating it amazingly well thankfully. A small amount of sickness but the new tablet they give him beforehand seems to have worked wonders, at £600 a tablet he shouldn't feel sick again! He does have some pain in his fingers and struggled when the wind caught him with throat pain. The chemo he brings home seems better than the 2 weeks worth of tablets he had last time.
He has a phone consultation tomorrow with the oncologist to check how he's coping, next week is chemo again and a consultation with the surgeon who did his HiPec.

Dds birthday tomorrow, it's all go around here

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HitthefloorforTaintedLove · 16/09/2020 12:56

Glad you were all able to celebrate together, and may the cake continue today.

Hope the call with the oncologist is helpful.

Sending 💐 you just keep on keeping on Loubie

loubieloo4 · 17/09/2020 00:04

@HitthefloorforTaintedLove thank you as always for the lovely words x

Dh spoke with the oncology team today (not his usual guy) his CEA has risen again, fuck.

It's gone from 54, 72 & now 157 in 5 weeks ish and whilst he is on chemo. The highest it was last year was 8.4 and that was when the cancer had gone crazy. 157 is really high for dh, the oncologist was really flippant about it though and said they don't really take much notice of the CEA, so why test for it then?

Just another dip on this cancer rollercoaster.

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BitOfFun · 17/09/2020 00:30

What a pile of old shite! I'm so sorry. And I wish you love and I hope you get as much time together as possible Flowers.

OntheWaves40 · 17/09/2020 00:43

Gosh OP you are so so strong

loubieloo4 · 22/09/2020 15:22

Great now I'm arguing with dd's school.

They have a case of covid and we have decided to keep dd (year 10) home whilst they have active cases. I rang the school and spoke with student support who decided to lecture me on the government guidelines and how if she doesn't attend it will go down as unauthorised and we could get fined 😡

Why do some people lack any kind of empathy? All I wanted was some work sent home for dd.

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HitthefloorforTaintedLove · 26/09/2020 15:26

Oh that is so rubbish from the school, can they get a human instead of a robot to deal with these things?!
I know you probably haven't got the strength to argue but if there is anyone on your side who could set out in very simple language the reasons, or your DD's form tutor or someone with a bit of a heart.

Sorry it really angers me that people can add stress to a family already under so much.
Big hugs 💐

loubieloo4 · 30/09/2020 00:45

Dh is doing great 👍🏻 had his 3rd chemo last week and is currently not having any side effects other than he's a bit more tired than usual. Dd is going back to school on Thursday as is stands, they have no new cases of covid and it's been over 2 weeks since the one pupil that was confirmed has been in school.

I'm feeling a bit all over the place at the minute, not quite like my usual and quite somber. Feeling penned in what with all the covid rules and DH's chemo, and I keep having dreams about dh and I being homeless. And a very disturbing dream where I can't get hold of dh, his number isn't in my phone and I have no way of contacting him. It's like he's just disappeared completely from my life, like he never existed in the first place. I wake up feeling a complete sense of dread and then realise that will be my real life and then the heartbreak sets in. Urgh.

Cancer is a cunt

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BitOfFun · 30/09/2020 00:48

It's so incredibly difficult for you- I'm really sorry, loubie.