Please or to access all these features

Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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....

OP posts:
Thread gallery
12
loubieloo4 · 18/09/2021 05:20

This reply has been deleted

Message withdrawn at poster's request.

loubieloo4 · 18/09/2021 05:24

3rd time lucky! I must be starting to get tired 😂

Anyway I have a question about me!

I have a strange question for you all, obviously we are all stressed has anyone had any physical issues with the stress? I hope that makes sense! I have developed some random sort of eczema, on my hands and feet, the huge problem is that it's making my nails fall of my hands 😱 I currently have 4 intact nails and the rest are either on there way out or gone completely. The nails get extremely swollen and very painful then die off. (I don't know if they will grow back as they fallout from the nail bed.
I have all sorts or cream from my gp and some antibiotics as a couple of the nails had pus underneath before they came off. They have worked great on the rash but I have one nail that's driving me mad with pain because of the swelling. The gp thinks it's stress related?

You never know someone reading this might have a good idea to try 👍🏻

OP posts:
Scottishgirl85 · 18/09/2021 07:35

Hi, I have followed this thread from the start with great sadness, you are such a wonderful family. Flowers
I wanted to say that I have stress-induced eczema. I use Eucerin, Epaderm, betnovate steroid cream, floxaccillin antibiotics and it works well. An old fashioned method is soaking your hands and feet in potassium permanganese solution for 15 mins twice a day, and this works well too! Hope you find a solution, but I agree it will definitely be stress-related x

Scottishgirl85 · 18/09/2021 07:37

*flucloxaccillin
*potassium permanganate

Scottishgirl85 · 18/09/2021 07:38

Oh and Dermol soap substitute, don't use regular hand soap for a while

Scottishgirl85 · 18/09/2021 07:39

And don't use hand sanitiser if you can avoid it!

Thisisconfusing · 21/09/2021 00:39

I sorry for the stressful horrible situation you are in . I developed horrendous eczema when my extremely prem twins were in NICU . I had been very unwell hence early delivery and then we had some ups and downs in NICU ( but all well in the end). My hands just became open gaping wounds that got easily infected . They were extremely painful. We eventually realised I was allergic to the soap in NICU and the unit kindly ordered a different one for my use but by then it had set off a chain reaction and my hands were just a raw bloody mess. For me it is genetic and allergies but aggravated sky high by stress so it flairs back up so I have learned to manage it in multiple ways Eg

  • using Dermol as pp suggested as a soap substitute . it’s got Chlorhexidine in it and good for keeping infections down. I get on prescription but available in pharmacies - shower gel and vats of the lotion ( nb some people are allergic to chlorhexidine ) ; alternatively use diprobase which is just an emollient
  • steroid cream start with eumovate which you can get from pharmacy . Betnovate is stronger and dermovate strongest .both require prescription The ointments are better but greasy . Note using these creams especially the stronger ones too much can make your skin very thin which is why worth starting with lower dose stuff first . My dermatologist recommends slapping the lotion on top of the steroid ointment to seal it in over night
  • mine is often triggered by allergies so I take fexafenadine ( prescription only ) but I do use piriton as well
  • for those wounds that just won’t heal then Haelen tape ( I forget it’s generic name) is amazing at delivering low dose steroid continuously whilst protecting it unfortunately its prescription only too and not as many GPs seem to know about it
  • for me it was also about identifying the triggers . I had extensive allergy testing and now have a list of ingredients to avoid . Interestingly I am not alone in being allergic to ingredients that are often included in the sensitive version of soaps. I agree hand gel can be horrific and really sting if you have open wounds. However it is not easy to avoid . I carry my own which I know I’m not allergic to. Many have aloe Vera in them which I’m really allergic to. I also use gloves .
I am sorry that I have no advice to offer the nails but that does sound very painful . Best wishes
HitthefloorforTaintedLove · 18/11/2021 00:27

How are things Loubie?
Hoping that your poor hands cleared up.

Also hoping that your DH is having some good days. 💐

episcomama · 03/12/2021 03:19

I've been thinking of you, OP. I hope you're doing ok.

50ShadesOfCatholic · 07/12/2021 09:41

Me too @loubieloo4

I check in here every day. I know whatever is happening is bound to be incredibly tough. Sending love

SivvyPlath · 08/12/2021 01:54

@episcomama

I've been thinking of you, OP. I hope you're doing ok.
Me too.
user97533676 · 09/12/2021 04:11

Hope things are OK. Lurker delurkingThanks

CookieDoughKid · 17/12/2021 00:01

Delurking. Really hoping you get to all spend a Christmas together. Sending you well wishes.

Flackattack · 09/02/2022 19:14

Hope you are all doing ok?

loubieloo4 · 26/07/2022 01:20

Sorry for the long gap in replying, mn wouldn't let me log on or post for ages and I didn't want to loose my name so to speak!

Gosh I have so much to catch up on....

We had a fantastic holiday in Mexico in February although dh was Poorly for the last few days. Straight back on chemo when we got back. He's had a couple of scans since then and everyone has been so so news, some stability lungs and some growth in his abdomen. He had his 47th round last week and has now asked for a break, he really isn't himself anymore ☹️ he's always on edge and angry and sleeps for days after chemo (he had his last one on Wednesday last week and has pretty much slept since) I have to force him to drink including the horrible build up shakes as he's loosing 5kg a week.

To top it off I ended up very ill in hospital for a week at the end of June, my kidneys failed which sent me very confused with an infection on top. After a couple of days in ITU and dialysis things started to get back to normal. I don't remember the days in ITU as I was sedated thankfully. It's very confusing looking back trying to picture the days and times. They thought I had encephalitis (infection surrounding the brain) hence the need for ITU. Thankfully after 6 lumber punctures they realised it wasn't. Very low rate of survival from that.

I will need regular tests to make sure my kidneys stay ok just to help with the extra hospital visits!

Then our daughter had a seizure at home and we got broken into.

So still not a bed of roses but we are all still here making the most of everything
I have no idea how but you just do.

Thank you all so much for checking in on me/us it means a lot x

OP posts:
Milliways · 26/07/2022 19:44

Goodness, you have been through it! But good to hear from you. I’ve been following your story from the start as I’m supporting someone with a stage 4 cancer too.

Hope your kidneys carry on behaving and that your DD is ok now. Make sure you do look after yourself somehow.

sending love x

CookieDoughKid · 26/07/2022 22:49

Shit happens and I’m so sorry to hear. Please take it day by day, we all don’t know what’s going to happen tomorrow,…..there is always something, even a little thing to find joy in.

OReillyTheOneEyedTelescope · 04/08/2022 05:20

My goodness you have really been through it

My mum had stage 4 cancer and also outlived their expectations but I found the last few months v difficult. First of all, and I know this sounds odd, I think we had got used to her living longer than they said she would. She had to stop treatment near the end because it was making her so unwell and it didn't seem fair to continue. When she did pass away, she actually had a heart attack (I think her body had just had enough by that stage) and although looking back I am relieved it was quick, at the time it felt horrendous as I think we had just got so used to her being unwell but still around, I think we thought we would have longer!

With you being a nurse you are probably better used to these things than we were.

Do they know what caused the problems with your kidneys or your daughter's seizure?

The life insurance thing is infuriating - have you tried your MP?

bloodywhitecat · 04/08/2022 07:54

I have no wise words but wanted to wish you all love and strength.

newfriend05 · 06/09/2022 15:59

Hope your all ok OP was just checking in ❤️

HitthefloorforTaintedLove · 16/09/2022 13:54

Sending lots of love Loubie, I hope your DH is kept comfortable.
Do not worry about people outside your family, this is a time to look inwards and be together xx

Isittrueornot · 20/12/2022 15:06

Thinking of you all x

HitthefloorforTaintedLove · 26/03/2023 19:31

Hi Loubie, thinking of you all, keep getting notifications that it's Bowel Cancer awareness month and just sending love 💐

loubieloo4 · 16/01/2024 23:51

So I guess I should update this.

Dh passed away in my arms 9th June 2023, he was in our local hospice who were phenomenal. It was just the two of like we had planned. The night before he woke up at around 2am to tell me 'I love you & im sorry' 💔 he then fell into a very peaceful sleep. All of our children came to see him in the morning, his parents "popped" in for about half hour and my mum for about 3 hours.

It was at 6:45pm whilst I was sat on the chair reading the news to him, when he took a gasping breath twice, so I climbed on the bed, tucked his head on my shoulder, put my hand over his heart and told him how much I loved him. He took one last breath and then was gone. His patio doors were open but the sunshine was bright so I had closed the curtains but we could hear the wonderful birdsong. I lay with him like that in my arms telling how much of a wonderful father and husband he was for about half hour before I pressed the call bell for the nurses.

Then the reality hit and I made the hardest phone calls of my life. I don't remember what I said or in what order but the children and my mum turned up first then his parents (who shouted at me and got kicked out by security) who the hell does that in a hospice? Then I did the very last thing I could for him and helped the nurses do his last offices, I washed his body and hair, sprayed his favourite aftershave. Then left so the nurses could do their part.

It's fucking shit, I'm so sad and lonely and even after 7 months still don't quite believe that I'm never going to see him again. The loneliness is slowly killing me. I'm on antidepressants but they haven't made a difference. I wouldn't say I'm at risk of harm but if you told me I was going to die tomorrow I would be happy.

Somehow this month I have to get myself a job, I need to work to bring in some money to the house. I have no idea where to even start because nursing isn't it anymore. Who will want to employ someone that has been out of work for 4 years and whose only experience is nursing? Answers on a postcard!

OP posts:
DramaAlpaca · 17/01/2024 02:18

@loubieloo4 I've just seen your update. I'm so very sorry for your loss, my condolences. Sending love x