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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 · 11/11/2020 21:02

@FazeleysRoyale
Yes dd is donating her hair! To the little princess trust. I'm cutting it and shaving it though 🙈

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Filou6 · 11/11/2020 21:22

I had to message because though it wasn’t a husband going through this... it was my amazing dad , sadly he lost the fight and I know how hard all this is
Miss him desperately and you never get over it you just learn to handle the void
I’m thinking of you

HitthefloorforTaintedLove · 14/11/2020 21:43

Oh Loubie your daughter's hair is magnificent! What an amazing thing that she can raise funds and help out practically. I'm sure she'll be gorgeous with her shaved head or maybe progress to a pixie cut when it grows a bit, I would donate if you send the link.
You do have an engaging writing style even with all the shit going on in your life, it's very conversational and friendly I think.

Sorry to hear of the long chemo days and CT fiasco. It's horrible to make people wait so long especially when drinking all that fluid and with anxiety building.
Is the consultant there for his wellbeing during the scan or to look at it quicker, or maybe both of those reasons.
DH has a CT next week assuming they'll go ahead if not cancelled due to covid, it is routine (hopefully obviously, and I know he is lucky to be in that position).

Are you getting any 'me time'? I don't mean your laps of the hospital! I know there's so much going on including with your dad, at some point you need to pause.
Sending hugs 💐

loubieloo4 · 20/11/2020 17:27

Ahh more stress 😡

So dh didn't get his chemo on Wednesday as his blood test from Monday showed his neutrophils were to low 1.2, they tested him again on Wednesday and they were 1.1. So they sent him home.

He went back today for another blood and covid test. (Poor man has a huge needle phobia and he has to have diazepam before any needle to stop him from fainting) anyway today's test showed they were even lower at 0.7. So now they want him back on Tuesday to try again.

What I don't understand is why haven't they given him any Filgrastim injections to boost his stem cells? I am going to try and go in with him on Tuesday to ask. I'm so worried with his neutrophils that low he is going to get an infection.

On top of that on Wednesday we have a phone consultation about his scan results. Ahhhhhh

Good news dd has raised over £2500 so far 😱 oh and I'm putting up my Christmas tree tomorrow fuck it.

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SarahSinuses · 21/11/2020 13:43

I'm a lurker on this thread. Congratulations to your dd for raising all that money! That's amazing!!

So sorry about the pause in treatment though. Very frustrating but hope you can do something about it on Tuesday. Hope your dad is well, also.

Go ahead with the xmas tree! Lots of people putting up decorations already. Hope you can all enjoy it Flowers

loubieloo4 · 24/11/2020 21:39

Neutrophils were still only 0.7 today 🥺 we have no plan until tomorrow after scan results, I do think he will still be having chemo as the nurses were trying their hardest to book him in for next week but they have no slots until 8th December. That will be 5 weeks since his last lot.

Trying not to worry or stress but it's so bloody hard, something always seems to be going on or changing and today is day before results day urgh scanxiety is a real thing....

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loubieloo4 · 26/11/2020 19:12

Scan results were ok I guess. Mostly stable with some growth in his abdominal wall, dh is pleased. I sat and sobbed when he had gone to bed, in my mind any growth while on chemo is shit news.

The plan is to try and have chemo again on Tuesday at a different hospital, then give the GCSF injection when he disconnects on Thursday. Then go back to our normal hospital for chemo every other week until..... well who the fuck knows.

I feel so crap for saying this but we can't live our lives like this forever, our youngest is off school for the foreseeable, our older two go to uni one day a week but stay in their bedrooms for the rest of the time so they don't infect dh with anything. We don't go anywhere other than the hospital as dh is at such a high risk. I can't even go and see my mum for a coffee in a nice cafe or a walk around the park. The walls feel like they are falling in, let alone closing in.

And then I'm expected to be happy about the scan and the fact that he can have more and more chemo. Obviously I am pleased he can still have treatment but the whole regime of it really takes it toll. Dh doesn't drive anywhere now, he worries that he's to tired. That means I have to take him and sit and wait in the car, sometimes the blood test and covid test can take an hour! We are pretty much at the hospital 3x a week for one test or other, then chemo day and then back again a few days later for his disconnect. I was really hoping for some slightly better news so he could have a month or two off from treatment, just to give us a break.

Then fucking covid and our incompetent PM decides were are going into tier 3. Fuck it all today.

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loubieloo4 · 02/12/2020 19:08

Dh finally got his chemo yesterday, his neutrophils had gone right up to 2.4 which is amazing. He did have to go to a different hospital which wasn't great, they wouldn't let me in with him while he was connected. Thankfully he didn't faint! They have sent him home with the Gcsf injection for me to give on Friday so hopefully his neutrophils will behave now. Fingers crossed we can go back to our usual hospital for the his other treatments.

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Ginger33 · 02/12/2020 22:24

@loubieloo4 I’ve been following your thread and just wanted to say I’m so pleased DH was able to get his treatment yesterday - it’s a shame you weren’t able to stay with him during but keeping everything crossed you get to attend your usual hospital for future treatments and are able to accompany him.

Hopefully the rollout of these Covid vaccines means life for patients and their families can return to some normalcy (I’m also attending hospital for treatment albeit not a life threatening condition but not being able to take a family member or friend to accompany you is difficult at times)

Sending you and your DH and family warm wishes

HitthefloorforTaintedLove · 09/12/2020 17:43

Oh Loubieloo you poor thing.
The walls feel like they are falling in, let alone closing in.
It's unsurprising you feel this way, you've had so so much going on and it's been relentless, your family life is affected, your dad's illness too.
I'm just in admiration that you get out of bed in the mornings, honestly, you deserve so much credit for that.
Apart from the sadness there is so much tedium sitting waiting in the car, waiting outside clinics, waiting for results or suggestions from the team. Are you speaking to anyone in real life?
Have you heard if he can go back to the usual hospital?
Big hugs as always, they are virtual so allowed in covd times 💐

loubieloo4 · 14/12/2020 18:41

Thankfully we are back at his normal chemo unit this week.
We had a bit of a drama with his GCSF injection, he fainted on me! He was lying down in his recliner chair so I just carried on 😂 worked brilliantly as his neutrophils are 5.8 this week.

I was very naughty last week and took my mum Christmas shopping in a tier 2 area (we are 3), we had a fantastic day and even managed coffee and cake in a cafe. We did wear our masks and wash our hands eleventy million times. We had a bloody great day and I'm feeling so much better and more human for it. Fuck it 😁

The big day for dd is on Saturday eeekk

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loubieloo4 · 14/12/2020 18:45

Forgot to mention, dh should be getting the covid vaccine soon (ish), I can't have it though as I've had anaphylactic reactions in the past, although not to any vaccine. I'm willing to risk it and have it done in the hospital just in case, I might see if I can convince my old manager to give it to me on my old ward (acute medicine) as it's more than equipped for emergencies!!

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fucksanta1 · 27/12/2020 00:07

Still thinking of you all

HitthefloorforTaintedLove · 27/12/2020 01:22

Also thinking of you all and hoping you had some enjoyable times this Christmas.
How did it go with DD's head shave?

loubieloo4 · 30/12/2020 04:55

Well it's been a while!

We had a wonderful Christmas, nice and calm. My parents came over to have dinner with us (they don't see anyone else and work from home). This year we decided as the children are older that we would open our gifts after we had dinner at 5pm. That way there was no rush trying to cook dinner, dh could have a lie in and we could have a relaxing day with the children before my parents came (we don't see much of DH's family unless they want something or want to do the whole, feel sorry for us routine our son is dying, if only half of the people they talk to knew we only see them twice a year 😡).
Anyway back to our lovely day......
We didn't get out of bed until 10am! The children were all still asleep, dh and I had a lazy breakfast in bed on our own. Once everyone was finally up, showered and had breakfast we spent the day playing board games with Christmas music on in the background. I had loads of time so I managed to decorate the table and we all including dh took the dogs for a walk. It's the first time he's been out of the house for any reason other than a hospital appointment for a while.
After a very long and leisurely dinner we opened our gifts. Then to top off a perfect day our best friends FaceTimed us to tell us they had got engaged 💜. Just perfect.

Treatment goes back to normal next week, he's had 2 weeks off due to the way the bank holidays fall. Back at our usual hospital thankfully. A few issues with the GCSF injection, they cause a lot of pain and knock him out. He was in bed for over 36hrs last time and only waking up when I went into him to make him take his meds and drink, he drank a couple of protein drinks after I pretty much forced him. He has oral morphine for the pain which probably doesn't help. He's doing ok though.

The big shave went well, I sobbed but dd really doesn't care, completely nonplussed! She is amazing 🤩 we are stopping the donations at the end of next week £3200 so far and plan to give it to the hospital when we go back in after that. Dd looks amazing and is full on rocking the bald look. For some reason it won't let me post a picture!

As always thank you for thinking of us, I hope you all had a wonderful Christmas 🎄

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Pucca123 · 13/01/2021 17:21

Hi I've been following your thread, wondering how you all are.
Your husband sounds like a fighter and your doing brilliant, I dont want to hijack your thread but I just want to say we are in a similar situation. My husband has been diagnosed with stage 4 bowel cancer, we received the news today so everything is still a shock. I'm so scared, hes my everything and I love him goddam so much.
Thank you for sharing your journey. I hope I can find the strength you have to help my husband.xxx

Monsterpage · 16/01/2021 09:15

Reading your post has given me hope. My Mum was diagnosed this week with bowel cancer that has spread to her lymph nodes and onto her liver. As they only scanned the bowel and liver we’re expecting they may do a more extensive scan. Apparently there are lots and lots of little secondary tumours in her liver. The MDT to discuss her treatment pathway is early next week so we’re just waiting to see what they say. I have been really worrying about her having to go into hospital for her treatment and the risk from COVID-19 but I can see from your posts you have been doing that for weeks safely.
Reading your post I can see how much your family love and support each other. I hope your husbands treatment has not been affected by the most recent lockdown. Thank you for sharing your story x

HitthefloorforTaintedLove · 16/01/2021 10:38

Your Christmas sounds just lovely Loubie, especially your breakfast in bed and that DH was able to walk the dogs with you all.
Your in-laws sound familiar!

I hope the resumed treatment is going as well as it can.

Bet your DD looks amazing, and knowing she has raised so much too, you all must be so proud.

How are you? Are you getting any time for you? I know you have so much going on so if you ever get a chance to pause take it.
Sending hugs and 💐

@Pucca123 @Monsterpage sending strength and 💐 to you too. It's so very scary, I hope that your loved ones get a plan of what treatments are available soon.

loubieloo4 · 16/01/2021 12:51

@Monsterpage @Pucca123 please come and join us over on 'still the storm' thread.

@HitthefloorforTaintedLove
Well I would like to say it's been getting better but I have found a lump in my right breast 🤨 I know the chances of it being anything serious are low and we probably have more chance of winning the euro millions! It doesn't help that there is a huge backlog for referrals in my area and even under an urgent one the waiting list is 8 weeks. Bloody Covid-19 🤬
I'm not overly concerned but you can't help the what ifs in the middle of the night.

Oh in different news I'm thinking of going back to work for a couple of days a week, I stopped working when we were told dh was stage 4 and his life expectancy was 12 months. I will wait until after his next scan but feel like I will feel more normal seeing other people. Obviously it depends on dh getting the covid vaccine.

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HitthefloorforTaintedLove · 16/01/2021 13:36

Oh FFS Loubie that is all you need!
I don't know if it's worth it/financially possible to get seen any quicker privately or if the private places are taking on NHS overspill already so not much quicker.
I got a next day appointment for a private mammogram in December (all fine).
Obviously I'm hoping you've just got healthy lumpy boobs!!

Regarding work it's something to think about, can they be quite flexible (if you need to drive DH to appointments) and can you change your mind again if you want to?

Sending even more hugs now I know you have an additional worry which I hope is resolved very very soon xx

loubieloo4 · 19/01/2021 00:17

Well I have decided on going back to work but only on the bank team, I will be doing covid vaccines for 3 short days a week. Bonus point that they gave me my vaccination today. At least that way I can work around DH's appointments etc. I'm hoping it will make me feel more normal, I will get to talk to other people and feel like I am actually doing something to help! dh will get the relief of me not asking him a million times a day if he's ok 😂

The extra money will be put away for a holiday once we can. I do need to contact someone to cancel the carer's allowance I get.

Still no news about my breast appointment.

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echt · 19/01/2021 08:28

I'm a lurker on these threads. What a colossal pain, loubiloo4, far more than that, one worry on top of another. Sad

As Hithefloor suggested, is private a possible way? I only say this as I am in Australia where you get clobbered with additional tax if you don't take out private health insurance. Hmm, so I have it. I had a cancer scare after an annual skin check just before Christmas (yippee) - possible melanoma - and was biopsied on the spot. As you can imagine, my week's wait for results left me prey to the most horrid imaginings. All good as it turned out.

I feel for your additional burden and hope you find a speedy (and good!) resolution.

notapizzaeater · 19/01/2021 09:44

@loubieloo4 a quick private ultrasound would only be a couple of hundred quid - worth it for the reassurance ?

It will be good to go and meet 'normal' people, people who moan about aching knees, tv, weather etc

loubieloo4 · 20/01/2021 00:27

To be honest I have only really thought about it on the long nights where nothing will shut my mind off, or when I feel it.

We could afford for me to have an ultrasound privately but I don't know if that would be worse if they found anything. We don't really have the extra fund for scans etc so would have to go back on the nhs list anyway. At least at the breast clinic it's a one stop shop I believe.

Had the Oxford vaccine yesterday, be prepared to have a few side effects, I've had a high temp, it was 39.7 ish at 7am and a ranging headache. All very normal 1in10 patients have some sort of side effects. Well I will be hopefully joining the community team next week to get some housebound patients vaccinated. Finally I can use my skills to help without putting dh in danger.

Dh has 3 more chemo sessions to go including tomorrow's then he will have to have a break which I'm dreading as his mets always grow. He is due another scan soon too. Tomorrow's chemo will be number 17 In total 🥺 honestly he really is my super human.

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loubieloo4 · 20/01/2021 00:29

He was thinking he could sneak in his little buddy in his chemo bag! 🤣🤣🤣

Dh stage 4 bowel cancer
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