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
Diangled · 04/11/2019 20:23

Hi Loobie, hope you enjoyed your break & that things are stable at the moment.
My DH has stage 4 prostate cancer with widespread mets throughout the skeleton & 1 lymph node. Sadly all treatment so far has failed to keep it under control for long & he’s back to more chemo next month. Currently recovering from a tumour that is compressing his spinal cord so has been a terrible time.

My advice is probably very selfish but do look after yourself too. Go for a coffee with a friend, a walk & get some air or anything else that relieves the pressure for a while. I’ve been very close to losing it altogether over the last year but our youngest is only nine & I know he (& our other children) deserves the best of me. Sometimes leaving the situation even for a very short time helps.
Our children have been amazing so far & whilst I do hope he’ll write letters etc for them I’m afraid to mention it to him just yet as worried it’ll be too much for him emotionally. Smart phones really come into their own at times like these. I’m forever taking pics / videos at totally random times!
Sending you lots of calming vibes & do know you’re not alone.

loubieloo4 · 18/11/2019 10:15

Well a bit has happened since Scotland. We begged dh's oncologist to try again with the chemo, which he did with a reduced dose. Dh had that last Monday, been a rough week with completely different side effects.

The biggest fuck up right now is out life insurance 🤬 we started the claim on 8th AUGUST!!!! Last week they decided to tell us that they needed a re-staging scan before they can proceed any further, it's took them three and a half months to decide that. The problem we have now is the scan isn't booked until 10th December which we won't get the results until after the Christmas break. I really need to try and get hold of the oncologist to see if he can have it sooner. We don't want that hanging over us all over Christmas.

Oh and the kids are being lazy fuckers, driving me mad. At least they are being normal I guess 🤷🏼‍♀️

OP posts:
MyNameIsArthur · 18/11/2019 12:52

So sorry OP Flowers This is such sad news. You are all in my thoughts and prayers. I found the Macmillan website of some use when I had cancer and the discussion forum on there very supportive and informative.

www.macmillan.org.uk/

loubieloo4 · 18/12/2019 01:32

We have had a Christmas miracle, dh had a scan on 10th Dec. Some of the cancer has shrunk. Liver 8mm-3mm, lung 1.8mm - 1.2mm the rest is stable😊

Genuinely shocked, lost for words! We were expecting bad news. We saw the surgeon who did his operation in May today who told us the amazing news. We are seeing the oncologist later today to find out the exact bits and what the plan is now.

But right now I don't care 😉

OP posts:
Jingers5 · 18/12/2019 01:49

That is wonderful news to get. I really hope that things improve for your husband. Have a lovely Christmas when it comes.

Knowhowufeel · 18/12/2019 02:09

I'm so pleased for you all. Long may these miracles continue Flowers

Albern · 18/12/2019 02:15

What wonderful news, I really hope things continue to improve and that you have the most fantastic Christmas and beyond Flowers

supermariio · 18/12/2019 02:24

@loubieloo4 Fantastic news, I'm so happy for you x

Zoflorabauble · 18/12/2019 02:26

This is such amazing news op. Hope you all have the best Christmas ever xx

Torvi · 19/12/2019 15:37

@loobieloo4

I'm so pleased to hear you've had some good news. I've been following your posts as my lovely FIL has almost the same cancer and spread as your DH, with a very similar prognosis.

I hope you have a wonderful Christmas Thanks

daffodilbrain · 19/12/2019 22:03

Ah that's such great new! Enjoy your Xmas you deserve it x

loubieloo4 · 21/12/2019 02:59

So it's the middle of the night and I'm still awake.....

We saw the oncologist on Weds (18th Dec)

stable chest wall, lymph, some lung, liver & peritoneum (no change) 50% reduction in 1 of the mets in his liver and small reduction in one of his lung mets. No new growth.

Having a break for 7 weeks, they don’t want the cancer to get used to the chemo he is on as there aren’t many other options to try. Basically they don’t want him to become immune to the oxaliplatin (the main chemo).

Told us to have a great Christmas and new year, and enjoy a holiday or two! And have the go ahead to go abroad whilst he is so stable!!

All in all a great result, even though writing it down it doesn’t look like it. The oncologist wasn’t expecting any reduction, if anything more spread.

He is having his CEA (tumour marker) checked at the beginning of Feb and if there is any change he will go back on chemo.

Still waiting to hear back from the life insurance, the oncologist said he would confirm where the cancer is and life expectancy of less than 12 months, not that he "knows" that just in hope that the life insurance will sort themselves out. He has said he won't tell them of the partial response because ultimately it doesn't change DH's overall diagnosis. It would be nice to get it sorted so we could have a holiday sooner, this time of year money is a bit tight.

Still not quite sunk in, but was amazing to tell the children some good/better news for once.

On a side note........

Dh and I have been collecting food from friends and colleagues to give to our local food bank, after all the support we have had this year we wanted to give something back. We delivered it today and they were very pleased, shocking to see how many people were queuing to use the food bank though.

Here's to a happy Christmas and a much better 2020 🤞

OP posts:
thatmustbenigelwiththebrie · 21/12/2019 03:10

I am also awake in the night so swinging by to say hi. My thoughts are with you. I hope you manage a holiday even if it's just somewhere local ish. Have a happy Christmas xxx

eaglejulesk · 21/12/2019 03:33

Sending you and your family hugs and also to the others who have told similar stories. Life can be so cruel. I hope you all have good support networks, and please accept any help which is offered. Flowers

eaglejulesk · 21/12/2019 03:36

Oh, just read the latest posts. What great news! How kind of you to give back via way of the food bank. Best wishes for Christmas and I hope you do get away for a fabulous holiday.

Pixxie7 · 21/12/2019 03:40

I am so sorry to hear what is happening to you. Just wanted to offer a thread of hope my nephew aged 36 has been diagnosed with terminal bowel cancer with secondaries in the liver. This was in June of this year, however he is now part of a trial being undertaken in Newcastle hospital and has had some very positive results. Not sure of exact details but it might be worth you mentioning it to his consultant.💐

Minxmumma · 21/12/2019 05:14

Sending gentle hugs. So glad you've had some positive news just before the Christmas break. What a kind thought to support the food bank.
Have a lovely Christmas

Fedupofitnow123 · 21/12/2019 05:44

I am so sorry to hear of your DHS diagnosis, but happy for the most recent news, my father also has bowel cancer, in the small intestine, lymph nodes and ribs, he wouldnt find out life expectancy! Please keep strong! Enjoy the holidays

Zofloraqueen27 · 21/12/2019 05:59

My husband of 53 years was diagnosed last November with bowel cancer . In December we were told it has spread to his liver, lungs and peritoneum. No treatment has been offered - just palliative care. I feel frozen with fear at times while I keep a happy positive upbeat face for him. My heart is broken and I can’t share my utter grief with him.

I face a very bleak future without him. I am tired of being told by my family that he looks well, will fight this, etc etc.

I spoke to my very kind GP - she said she could not give me anything to take away my pain - I was/definitely am - suffering Anticipatory Grief. My grieving began the day my husband was diagnosed.

Sorry to hijack this thread. It is not knowing “how long” is hard to cope with.

Soontobe60 · 21/12/2019 06:14

OP, somsorry to read this thread but pleased your DH has had good news recently.
I just wanted to give you some advice about the money situation. This happened to a colleague of mine. Her DH had life insurance, who confirmed they would pay out, but time was of the essence. They contacted the bank, who agreed immediately to an interest free loan so they could have their holiday and not worry about the cost. Once the insurance paid out, before her DH passed, the loan was repaid.
Contact the bank, the bereavement section (they also deal with life limiting conditions) and they should be able to help.

loubieloo4 · 15/02/2020 04:36

Today/yesterday I feel numb, like I really don't care.

This has been instigated by the life insurance refusing to pay out for my wonderful dh, apparently they need to see progression of disease before they will pay out. By then it will be too late for dh to make the memories and enjoy the time he has left, they have no sympathy at all and one idiot said we can pay out x amount for his funeral 🤬 they are keeping his case open for now as he has another scan booked for 4th March. I just feel so flat, we have nothing to look forward to, I feel like I did when he was first diagnosed, stuck in limbo land waiting for the bad news to come.

It really is just shit

OP posts:
Fullforcegale · 15/02/2020 04:52

I’m so sorry loubie, that is a very unfair outcome. If your DH is well enough to go on a holiday is there any way you could put it on a credit card and pay it back later? Just an idea because as you say, he may not feel as well when you do get the pay out.

MonsieurChaCha · 15/02/2020 04:53

Oh that really is shite. Can you take out a loan until it is sorted?
How are you all doing?

Gwilt160981 · 15/02/2020 05:19

Sorry to hear this. ☹️