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
timegoesbysoslowly · 30/09/2020 01:02

Sorry your going through this, cancer is shit

notapizzaeater · 30/09/2020 11:20

((Hugs)) @loubieloo4

It's shit 😭

Hellin301 · 04/10/2020 19:32

Sending you and your family so much love at this difficult time xx

Frikonastick · 04/10/2020 21:36

I have that dream @loubieloo4, of being homeless, or not having any money and thinking what am I going to do. I think it’s about loss of stability.

Theyvallgone · 04/10/2020 21:47

I’ve just read all your posts, sometimes with tears in my eyes. I’m so sorry about this shit situation and how unfair it is. I’m thinking of you all

CeeceeBloomingdale · 04/10/2020 22:01

There are no adequate words. A friend of mine is stage 4 and I just can't comprehend how she gets out of bed each day and lives her best life with her husband and children knowing she has limited time. Life is so unfair sometimes.

loubieloo4 · 11/10/2020 16:07

Chemo round 4 done. A small problem with his neutrophils a couple of days before chemo but they came up just enough to go ahead with this cycle. I'm not sure if it's connected or not but it seems to knock him for six this time.

Having a phone consultation with the oncology team on weds, hopefully they will book his scan in soon.

He struggled a bit during his chemo session, he is the youngest patient they have and I think he's fed up of not being able to talk to anyone. It can take up to 7hrs for his chemo, a long time to be sat with your own thoughts. I do sit and wait in the car (I refuse to go home just in case he has a reaction) so we text each other. I just wish I could stay with him.

OP posts:
HitthefloorforTaintedLove · 13/10/2020 17:18

Oh Loubie how exhausting for you both.

Those dreams are horrible and I suppose reflect the very big and real fears that you are bound to have at this time. It's obvious from your posts that you are brave and strong but don't know why life feels the need to test some people's reserves to such extremes. 💐

Hoping that the phone consult tomorrow goes as well as it can. Sending virtual hugs xx

loubieloo4 · 13/10/2020 21:49

It just gets better and better...... my dad is now being checked for prostate cancer due to some symptoms he is having. Honestly my brain and my body do not have capacity for this, I can't even begin to know how we are going to tell the children. It won't be mentioned until we get a definite diagnosis, dd (15) is so close to him, how can we put this on her too?

Life is just fucking to awful sometimes

Oh dd is off school again due to a positive covid case in her class.

@HitthefloorforTaintedLove thank you as always x

OP posts:
Caelano · 14/10/2020 18:56

I’m so sorry. Life is so fucking shit at times. Yet so beautiful at other times. There are no answers. Just know that you’re not alone Flowers

loubieloo4 · 17/10/2020 03:05

Scan date came through for 5th Nov.

Dh has been very fatigued this cycle, hasn't really left the house for over a week, so I convinced him to go for a coffee with me and he managed about an hour before he came home and crashed.

We also had a very serious talk about home security, dh would like us to get some sort of cameras. Similar to ring etc so I will be safer when I'm on my own 😢

OP posts:
notapizzaeater · 17/10/2020 17:38

It must be a man thing, we had a ring system fitted last year so I'm safe. He's had my BIL and sister here today laying a concrete base for a new shed that's more secure 😢

echt · 18/10/2020 02:22

A lurker on this thread and so sorry to hear loubiloo4's avalanche of complications. I was caught by your dreams and the security. My husband died suddenly and unexpectedly for years ago, and I was racked with ideas of money problems, and no amount of objective evidence has completely removed it.

In addition I became instantly obsessed with the security of the house. It is perfectly OK and in a low- crime area. Plus I have a dog who will hurl himself off the bed and down the stairs at a noise. I started to sleep, and still do, with my bedroom door open so I can hear intruders. Ridiculous, I know, but the caution has never left me, I relax because I can hear everything.

Enough about me. Many Flowers for you, and best wishes to you and all who are going through such trying times.

loubieloo4 · 20/10/2020 18:25

So we are back to dh being slightly confused again this week, not sure if it's the chemo or he needs another steroid pick me up. I will have a chat with the nurses tomorrow when he has his chemo.
His gp wants him to have the flu jab this year (he's never had it before) so I rang his CNS to see what they thought, she spoke to his oncologist who agreed. The difficulty is that he is on a 2 weekly cycle of chemo and his best day to have the jab would be the day after his bloods but we then need to know that his bloods are ok before we go ahead with the jab! If we do manage that he will then have chemo the next day 🥺 which seems a bit much. Although it doesn't really matter at the minute as I can't find anywhere that is taking bookings let alone late evening ones so we have chance for his blood results!

We also need to sort out his ct appointment as it's currently the day after chemo, he takes a chemo bottle home with him for 2 days and then go back to the hospital and have it disconnected. So we are not sure A) if it's safe for him to have whilst still connected and B) if there is any metal in the chemo bottle etc. The bag he carries it in has a zip so it would need to come out of that at least. Hopefully they will just rearrange for the week before or after.

On top of all this dds school have 5 cases of covid now, 2 of which are in her year, so she is now at home until after half term.

Then we have the issue of my ddad who is having to isolate with my dm whilst he is having more tests for prostate cancer, poor dad is having a camera down his penis on Friday and they don't even give them any sedation 😱. His consultant is checking to see if and where the cancer has spread before they decide on treatment.

Life is just one big fucked up mess of confusion and hospital visits. I think it's all that crazy my head can't work it out anymore, it's like the worst book ever....

OP posts:
loubieloo4 · 20/10/2020 18:28

As always thank you to those who read my ramblings and leave me messages, they really do help.

@echt I'm so sorry you have been through hell, thank for taking the time to message me. I hope you are doing as ok as can be.

One day I might actually turn our life into a book, it might just help others that are in the same boat as us.

OP posts:
HitthefloorforTaintedLove · 24/10/2020 00:39

Oh Loubie where to start?

Your DH and the ring doorbell - I don't know much about those but can see why he's thinking of ways to protect you, it's a very deep love between you (I remember the wallpaper remnants you mentioned before).

Hope things can work out so that chemo, bloods flu jab and CT can be arranged in a kind of logical order.

Sorry for the additional worry about your dad. My grandfather had prostate cancer for a long time and found the treatment manageable, hoping your dad's doctors can get a good plan in place.

I know it's crap the school situation, I just hate how covid has impacted so many people who were already going through enough.

Are you getting any time at all for you? 💐
I expect not much.
Wish you didn't have all this burden. X

HitthefloorforTaintedLove · 31/10/2020 00:02

Just sending hugs @loubieloo4 💐
Hope it went as well as possible for your dad.

Hoping with time you may have greater peace @echt
Illness and death take away some things you never expected / never realised you needed to 'appreciate' something like sleeping with your door closed or I imagine you have many examples 💐

loubieloo4 · 31/10/2020 00:55

@HitthefloorforTaintedLove

Ddad is doing ok, it is prostate cancer but very early stages thankfully. They have a treatment plan that seems very doable, it's just going to be hard work with isolating everyone due to covid and somehow managing to have a normal ish life. My poor dm is struggling and I really don't know how to help, she has been such a massive help for us over the last 18m. I think it might help us all to have some sort of counselling to try and work out everything and to come to terms with it all. I'm not sure how much anyone of us can take before cracking.

Thankfully the kids have seemed ok with dads diagnosis, the oncologist told us it was more like a disease he can live with like diabetes etc so that's what we told them. It looks like it worked to take the dramatics out of it.

Dh has chemo again next week, his scan is going ahead the day after. Then the long wait for results again.

Somehow we are all ok and just getting on with it all....

Oh, I'm so glad the love dh and I have for each other comes across through my weird midnight writing, it's hard to express how much and how deeply we love each other. We are so very lucky to have each other and our wonderful children.

OP posts:
notapizzaeater · 31/10/2020 09:59

I'm really glad your dad is early stages and treatable. My FIL has been living with prostate cancer fir about 17 years now, trying to think back as we're very low contact with them but DS was about 1 when we found out.

Our local hospice organises counselling, we are waiting for them to get in touch.

They've doubled DH pain meds so when we swop his fentanyl patch tonight we are placing two on whilst we wait for the doctor to sort out the bigger prescription.

We've got an actual in person visit to oncology Tuesday morning, will be the first time since Covid - it's results of the latest x rays 😭

HitthefloorforTaintedLove · 31/10/2020 12:44

Glad to hear your dad's prostate cancer is at an early stage, it does seem to be something that a lot of older men live with.
Good luck to DH for the chemo and the scan.
Your love really does come across, as a very real day to day love if that makes any sense (it's intended as a compliment, like it's the real thing that grows not that gushy love you get at the start).

Macmillan organised counselling where we are, the sessions were held in the local hospice. If you can access it via zoom or something now it could help. A bit of space to talk it over without censoring or reigning in your fears could help.
Also for your lovely children if they might find it helpful.

@Frikonastick I recognise you from the other thread, I didn't want to keep posting there as after some further tests my DH is fortunately doing well touch wood (they had suspected a spread to lungs but turned out to be something else) and I know you and the others are in a very different place.
I'm thinking of you and hoping for some positives on Tuesday. 💐

Frikonastick · 02/11/2020 03:19

Thank you @HitthefloorforTaintedLove, we had tumours doubling in size, but no further spread, which means we can add a few more months onto time frames, a rare stroke of luck

loubieloo4 · 11/11/2020 07:26

Well where do I start! It's been nearly two weeks since my last update and a lot of stuff has happed....

Firstly chemo was a bit of a wobbly start, DH's neutrophils were low again, lower than last time. When we go to the ward they took some more blood to see if it had come up from his last check a few days prior. Annoyingly it came back as 1.45 it needs to be over 1.5 for chemo to go ahead. They suggested he wait around for a couple of hours and test it again, this time it came back as 1.52 so they went ahead with his chemo. Because I'm such a worrier I wait in the car whilst he has his chemo, I'm worried he will have a reaction to the oxaliplatin which can happen as it builds up in the system. Thankfully no reactions but another long day (7hrs). It was fairly nice weather wise so I did a few laps around the hospital to avoid getting a numb bum!

The next day was his ct scan, which he hates as he 9/10 passes out when they put the cannula in. Let alone it being the day after chemo which is always his worse day symptom wise and he was still connected to the chemo he brings home. That was a bit of a drama in the ct according to dh even though we checked with both his cns and oncologist that it was ok for him to have it. They wanted to speak to a consultant and to have one present during his scan, so he had a long wait on his own. He has to drink around a litre of water before his scan but one of the side effects of the oxaliplatin is cold sensitivity, I had thought of it beforehand and sent him with some juice cartons to drink that were not quite as cold as water from the tap would be. He did drink 2 but couldn't manage anymore. He waited around 2hrs for a consultant to be free. Obviously this made him more nervous so he did faint when they inserted the cannula! Poor man.

On top of all that it was nearly 7.30pm by the time we got out and it was bonfire night, DH's dog hates them and is a nervous wreck, it's heartbreaking to see her and we were worried about how the kids were coping. Fucking lockdown (sorry it makes me cross) meant that my mum couldn't come over and help. It will probably take 2-3 weeks to get the scan results.

OP posts:
loubieloo4 · 11/11/2020 07:33

So in separate news.......

Dd (15) is going to shave her hair off in December to raise money for the amazing chemo unit dh uses. Her hair is so amazing I will attach a picture. I may cry when I do it 🥺

We created a GoFundMe me page and put it on social media, text friends etc and within 24hrs people had donated over £1500 😱 how flipping amazing is that. Then I had an email from the GoFundMe PR team. They said our story had caught their attention and they would like to help us, including the press, tv, radio etc eeeekkkk. Apparently they liked the way I write 😂 I'm not always moody and gloomy! They only offer this service to a very small percentage of campaigns. So now I have a PR advisor 🙈🤣🤣

Sometimes humans really are fabulous and generous, we have had donations from people we don't know from Australia. It makes up for the shitty ones.

(Kind of wishing we did it for a new bathroom now! Joking obviously)

OP posts:
loubieloo4 · 11/11/2020 07:36

DDs beautiful hair!

Dh stage 4 bowel cancer
OP posts:
FazeleysRoyale · 11/11/2020 18:30

I am de-lurking ( I read and follow a lot of the health threads) to ask whether your DD is going to donate her hair ?

My niece had similar hair (even the colour !) and decided to go for the chop for personal reasons. Her hairdresser chopped a big length off it which was donated to a charity which makes wigs for children and young people with hair loss (often from chemotherapy). Then the remaining hair was cut into a short hairstyle but obviously the remainder could be shaved off.

My niece felt good about her hair being used in this way. Her hairdresser had done this before so maybe it has to be a participating hairdresser, I'm not sure. I don't want to name the charity she donated it to on here but it is the top hit on Google.

I wish all the best to you and your DD.