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Original poster

Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

998 replies

mowly77 · 05/08/2023 17:46

I’m expecting tumbleweed. But I’ve jumped over from the lovely supportive threads I’ve been on for general cancer - latest one here-

https://www.mumsnet.com/talk/general_health/4863468-cancer-support-thread-89-the-best-thread-that-no-one-wants-to-be-on?reply=128175880

to see if there’s any interest in a separate thread. I often feel like such a derailing buzzkill on the general cancer threads as there are so many shapes, sizes, flavours of cancer & so many different issues when you’re being treated to be cured as opposed to being treated palliatively.

And those of us unlucky enough to be incurable, and let’s face it, dead, sooner rather than later from this insidious disease, have our own concerns and darknesses. And admin. And hopefully some good days. Please, please let there be more good days.

Help, advice, dark humour and support are the aims. There are wonderful people on the cancer support threads & I often feel guilty for trauma-dumpling my tales of woe on it, to those dealing with their own, but different, bullshit.

Anyway —- come on in, the door is open. All I have to offer today are tales of woe about NHS incompetence & updates on the state of my bowels.

Here’s ‘my story’ - my bullshit story I wish wasn’t true but here we are. Please share yours if you would like.

estrogen+ BC diagnosed age 36, v aggressive, 3 tumours, 2 very large. Right mastectomy. No lymph node involvement. 5 miserable months of old school FEC poison. Then diagnosed BRCA2+. Left risk reducing mastectomy. Then crickets from the NHS. No one told me NED but indeed I had none. So for 11 years I love my life.

I give birth in 2018 to my DD, conceived via IVF, as my reproductive capabilities did not survive the FEC. Had my ovaries removed shortly after as per advice for BRCA2 patients . THEY DIDN’T BOTHER TO FURNISH ME WITH ANY ADVICE ABOUT HOW TO DEAL WITH SUDDEN SURGICAL MENOPAUSE WITH NO HRT THOUGH. And a baby in the mix! I’m still v cross about that.

Right when I wasn’t expecting it, when I thought I had ‘beaten’ the ten year survival rates (hahhhha, that fucker came back. After much faffing from utterly shitballs hospital trust finally diagnosed metastatic, stage 4, incurable, spread in my lungs, pleura and sternum. This was March 2022 when my daughter was 3.5

I’ve since had 15 rounds of Paclitaxel (first 3 months some shrinkage; last 3 months total failure, back where started) & then managed to get moved to Royal Marsden in London with great effort as my oncologist was so bad, so rude & she made my life a misery. I started on the ‘gentler’ regime of Palbociclib & Letrozole and whilst I was battling horrible side effects from those I had a 6 month run of clear scans and I was finally getting to grips with the treatment. Then the other shoe dropped and the bastard cancer is growing again. I’m still on Palbo & Letrozole while they test my blood for an enzyme that will determine if I can move on to Capecitabine. Which I’m terrified of! Better the devil you know.

In the meantime I’m in America with my family (who all live here) trying and failing to communicate with the NHS over email to see if I can fly home earlier than scheduled so they can see me quicker and get me on Cape asap because I’m really not doing well.

I can have a ‘good’ day if I’m dosed up to the eyeballs on Oramorph but it’s all quite exhausting & I’ve had to temporarily come off it to relieve my insane constipation and stomach issues. So now I’ve been on bed for two days. BUT it’s not all bad. I’ve been to see the Barbie since I’ve been here & been to the local pool with DD a few times & enjoyed sitting on the porch listening to the cicadas. It’s boiling hot too so am getting a break from the rain.

I’d love to hear your stories, tales of woes, worries, advice. Anything at all you want to say in this safe supportive space. There’s just so much in the mix for this stage of bastard cancer.

Page 3 | Cancer Support Thread 89 - the best thread that no one wants to be on. | Mumsnet

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OP posts:
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45
VinEtFromage · 07/08/2023 19:06

I really don't know what to say. Sorry. I want to be supportive, but I'm sure that would look different to all of you. I'd like to reply to you all separately with individual comments, but it all boils down to the same thing really...

I know you don't really have any choice, but you're all being so strong. I'm in awe of you all.

I desperately hope all of your partners/family/friends can give you the comfort of knowing they'll always be there for your children and you'll always be a part of their life.

much love & strength
xx

Remaker · 07/08/2023 22:52

@mowly77 for three cycles I was taking 7 x 500mg Capecitabine tablets per day for 14 days. For cycle 4 they reduced it to 5 x tablets per day.

Just on the hand and foot syndrome, for me it has been more of an ‘ew yuck’ symptom as I peel huge strips of skin off my feet. But it hasn’t caused me a lot of discomfort or interrupted my daily routines very much. I have the odd day when I’ve overdone it the previous day so I put my feet up and watch Netflix to give them a rest.

Vintagecreamandcottagepie · 07/08/2023 23:54

Words are useless in trying to convey enough, but I didn't want to let that stop me speaking for all of us lurkers reading amd wishing you all the best.
I'm especially sorry to you op, and any others on this thread with young children.

Bluekangaroo123 · 10/08/2023 21:19

Hello all, I’m sad to join this thread although glad to find somewhere for stage 4 as I found the cancer support thread too overwhelming.
I was diagnosed with stage 4 bowel cancer in 2021 aged 42. Sadly it had spread to my liver & ovaries & I have the BRAF mutation (same as Deborah James). First line chemo didn’t work but I went on to targeted treatment & had an amazing response allowing me to have major surgery last year. Sadly recent scans reveal that I now have a tumour in my clavicle & mets in my liver & lungs so back on treatment I go. I have a 5 year old DD & sometimes I can hardly bear the sadness of thinking I will probably leave her early. I’m sorry for everyone going through this & thanks for starting this thread OP.

Bsmirched · 10/08/2023 21:54

Hello, can I join you? First diagnosed February 2018 with triple positive breast cancer with spread to lymph nodes. Had chemo, radio and mastectomy then continued with herceptin, zometa etc. Herceptin caused heart failure after 12 of 18 doses so had to stop that.
Fast forward to autumn 2022. I got increasingly breathless, initially put it down to the heart failure. Turned out I had huge amounts of fluid around my heart. Had surgery to drain it, but analysis of the fluid showed the BC had returned and spread to my pericardium.
Ironically, my heart failure had improved massively so after 6 more docetaxel I'm back on a version of Herceptin every 3 weeks, for as long as it doesn't damage my heart again. I have an echo every 6 weeks to check. I don't imagine I have very many effective treatments left if I can't have Herceptin.
I have a lovely DH and 2 boys, 10 and 13. I can't bear to think of the pain I'm going to cause them. I'm terrified for myself about what the end may be like but horrified that they'll witness it.
As for admin, I made so many lists when first rediagnosed, but have done bugger all!

TwigTheWonderKid · 10/08/2023 22:45

Welcome @Bluekangaroo123 and @Bsmirched . Sorry you are here but glad to see you.

It's so nice to have a safe space where we are all in the same boat. Stage 4 is so isolating, isn't it? Plus having to deal with all the sympathy from friends. I don't mean to sound ungrateful and I am very lucky to have a very supportive network around me, but being asked how I am multiple times a day is quite exhausting sometimes.

Merchantadventurer · 10/08/2023 23:03

I am stage 4 breast cancer with mets to bone and bone marrow (results of a scan on Tuesday pending!) I was diagnosed in 2019 straight to stage 4 following back pain. I have two DC aged 17 and 14.

It really is an awful place to be isn’t it. I have done a bit of life (ha!) admin but not enough! We did alter our wills so my share of the house goes to the DC in trust. The solicitor wrote it an a way that allows DH to move and the trust just own half of the new house. My advice would be to go to
a good solicitor and they should be able to sort it for you. We also did power of attorney for health and money.

TwigTheWonderKid · 10/08/2023 23:08

Welcome @Merchantadventurer .

That's really interesting about the trust. My solicitor told me that selling the house or DH remarrying would automatically dissolve the trust. She seems to know what she is doing ( it's the famous Mumsnet will writer) so I'm very confused.

Merchantadventurer · 10/08/2023 23:25

TwigTheWonderKid · 10/08/2023 23:08

Welcome @Merchantadventurer .

That's really interesting about the trust. My solicitor told me that selling the house or DH remarrying would automatically dissolve the trust. She seems to know what she is doing ( it's the famous Mumsnet will writer) so I'm very confused.

My DH has had some experience as his dad’s house was left to him in trust with his step mum having the right to live there. She has in fact sold the house and bought a new one. The cost was the same but if it hadn’t been then any money released would have been either invested in the trust or gone to DH.

Due to this experience DH was very clear he wanted to be able to move and it was the same solicitor who helped when his dad died so she knew what we wanted.

I was also not bothered about him re marrying as I want him to live as he wants so long as my bit is protected for the DC . Therefore I am pretty sure that clause isn’t there but would have to double check as it has been a while.

Maybe there are different types of trust?

Bluekangaroo123 · 10/08/2023 23:29

Thanks @TwigTheWonderKid, yes it’s truly the worst. I just don’t think anyone can understand it unless they’ve experienced it, I really had no idea before this happened to me. I also find it draining when people ask me how I am. I know it’s hard for people to say the right thing though. I agree it’s good to have a space to talk about how we feel. It sucks.

Elisebev · 11/08/2023 08:39

Merchantadventurer · 10/08/2023 23:03

I am stage 4 breast cancer with mets to bone and bone marrow (results of a scan on Tuesday pending!) I was diagnosed in 2019 straight to stage 4 following back pain. I have two DC aged 17 and 14.

It really is an awful place to be isn’t it. I have done a bit of life (ha!) admin but not enough! We did alter our wills so my share of the house goes to the DC in trust. The solicitor wrote it an a way that allows DH to move and the trust just own half of the new house. My advice would be to go to
a good solicitor and they should be able to sort it for you. We also did power of attorney for health and money.

@Merchantadventurer hope your scan results go ok. I’ve also got a scan coming up and am already dreading the results (last two scans have shown spread and resulted in a change of treatment).

Timeforabiscuit · 11/08/2023 09:01

Dh has stage 4 glioblastoma, which has recurred (the cancer didnt get the hint after full resection surgery, radio therapy and chemo).

He's currently on chemo, which is an absolute delight (still find a sick irony that you should avoid touching the pills that you swallowing three times a day for a week). But it's inoperable, so we are moving towards the endgame. Please no suggestions of alternative treatments, there aren't any, it's hard enough accepting this without someone googling immunotherapy and sending trials for cells on a plate.

On practical stuff, the local hospice were actually hugely helpful for a human being to talk to, he actually finds doing short video easier and records these on his phone, he's asked us to give him questions and he'll record answers.

As he's likely to lose cognition, I've set up financial power of attorney (apparently the health one is less useful as we are married and I've been with dh to every appointment already), so if his mobile contract ends while he strokes out I have a legal stick to harangue a call centre with.

Marlow Wills are the ones mentioned on mumsnet, I found them really good although there isn't a way to easily separate assets like a house to guarantee your children receive it after a spouse dies. But as dh is likely going first its now a moot point.

The nuts and bolts of moving bills over to my name, is strangely horrible, its dhs role in family life, and he can still stay on top of things for now, inever considered paying a gas bill an enriching life experience, but that's cancer, the git strips everything you took for granted.

Merchantadventurer · 11/08/2023 09:14

@Elisebev thank you and good luck to you too! It does feel like we live scan to scan doesn’t it! I try to force myself not to second guess the radiographers’ facial expressions!

Original poster
mowly77 · 11/08/2023 13:37

Thanks @Timeforabiscuit for the will
info. And I am so sorry to hear about your DH. but like the other general cancer thread, this is a safe space for those of us with the disease, to let loose and be totally honest in our thoughts and questions & be among others experiencing the same. There is a very good thread for spouses with partners with stage 4/ serious illness on life limiting illness I believe called Be Still The Storm.

OP posts:
Original poster
mowly77 · 11/08/2023 14:10

I’m supposed to be on a social media cleanse as I’m on a short vacation at a beautiful beach with the whole family! But whoops here I am. In the meantime I have experienced the delights of US emergency room as I was getting sicker and sicker & didn’t know how I would cope with this trip; daughters birthday party; and my wedding in quick succession. They v quickly & efficiently did a chest X ray right there in my cubicle. & then a CT scan. Not quite enough fluid in the left lung to drain unfortunately but they loaded me up with Oxycodone and strong anti inflammatories. ER dr was about 1, think Doogie Howswer, but in a backhanded compliment he said my lungs weren’t in as bad shape as he imagined after my tale of cancer woe , compared to people with CPD etc, which was strangely comforting coming from his naive enthusiasm. The pain is in my stupid inflamed plura likely. “You must be in a lot of pain” he said well yes it turns out I am and I needed to up the pain relief - my quality of life for now is much better.

Looking forward to the bill but thank god I could get insurance (Insurance With are specialists for cancer among other things) I have a £1000 medical excess but well worth it.

And my Marsden onc finally replied (before he knew I went to hospital; I’ll send him the details of scans etc in due course) & in a very thoughtful answer said he did not advise rushing back to start treatment in august as it could wait until September and “family time is important.”

so here I am loaded up with drugs; feeling more functional. Still very breathless on stairs but went for lovely long (slow) walk on vast sandy beach with the huge waves of the Atlantic Ocean pounding besides me, people watching, shell collecting.

DD is having a great time spoiled rotten by her aunts. There was a big storm last night & I went out to the dark beach with my Dad & watched the lighting out to sea lighting up the sky; the sky was so clear & there were millions of stars were above us.

I stayed up to 2am reading, I have finally got my concentration back & am really enjoying a biography called Lives of the Wives that focuses of the unlucky half of literally marriages. Take-away message —men — especially writers — are arseholes. Surprise surprise. Well men and one woman - Radcyffe Hall aka John - who treated her long-term partner Una Troubridge with as much contempt. I’m really enjoying all the Hollywood and Broadway history in Patricia Neal’s chapter right now. Although I haven’t got to the bit where Roald (pronounced Roo-all - the ‘d’ is silent! A revelation to me! His parents were Norwegian) invariably wrecks her happiness & sense of self-worth.

Have a very good weekend, cancer-havers, if it’s possible. And don’t forget this thread is always here for bitchin and moaning or celebrating small victories or asking the big questions. ( like whoops am I teeny bit hungover …. I did drink more than my usual 1 or 2 drinks last night but I was really enjoying the pink champagne I bought as a l treat to go with our crab dinner) Love & light to all affected by this disease.

OP posts:
Mischance · 11/08/2023 14:18

Bloody hell. Why are you having to battle to get the right treatments and sympathetic consultants? What the hell is wrong with our health service?

Sorry - but it makes me furious. My late OH was a GP and would be horrified at the state it is all in.

Doihavetoputaringonit · 11/08/2023 20:10

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Bluekangaroo123 · 11/08/2023 21:39

Glad you are feeling more functional @mowly77 . It’s nice that you were able to stay up reading until 2am!
Thanks for gate keeping on the thread too, I’m sure people mean well but it’s clear this space is for people with a stage 4 diagnosis.

Bluekangaroo123 · 11/08/2023 21:41

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Do you have a stage 4 cancer diagnosis? If not I would ask you to step away & stop promoting something which has no solid evidence to support its use. You’ve no idea how many similar ‘cure all’s’ are promoted to people with cancer & it gets pretty tiresome!

HerbalRefreshmentt · 11/08/2023 22:02

Hey @mowly77 - glad to see you started this thread, went on holiday, got moved to the Marsden, and now apparently got some primo health care and pain management :) The tone of your last post is so different and settled compared to some of your prior ones (if you dont mind my saying!) and Im seriously jealous of your trip to the US. I would have loved to have watched that storm on the beach.

Im Herbal, dx Stage IV de novo BC to bones only in September 2019. I was on the other thread for a while (minus a t) but then someone got on my ass about something stupid and I figured it was a good time for a break.

Currently laid up with a crap hip and needing the cane while Im waiting for Xeloda to kick in and close up my pelvic met (trying to avoid radiation on this for reasons). Its getting there but christ am I tired of limpin. And then, thanks to the super shit genes I inherited (thanks for the BRCA1 dad!) and lack of mobility, I had a lung clot three weeks ago, spent five days in hospital, got to add thinners to my repetoire and had to cancel short holiday. Mom flew over to help out/visit and its been nice to have someone cook and clean because i was totally over everything (husband went alone but he had some things to hash out with his family so its worked out ok. He needed the break too). Mom was telling me the other night to 'just take half a pain pill' and im like what pain pills? My brother got something like 800 oxycontin when he went through Stage III head and neck in the US three years ago and she can't believe I have nothing stronger than the usual paracetamol.

Any of you starting capecitabine/Xeloda shortly feel free to ask questions. Its actually been a really easy ride so far in terms of side effects, although my feet are starting to get a bit spicy at night. I scan Monday at the end of this third cycle but expecting adjustments due to some elevated liver numbers and fatigue.

Original poster
mowly77 · 12/08/2023 01:44

Hi @HerbalRefreshmentt 👋🏻 Great to see you again, although not obviously, great. I’m sorry about your crap hip. And fingers crossed for the Xeloda. I’m due to start on the 4th. I’m enjoying the lessening of pain with my US-prescribed oxycodone/ibuprofen but even I had a morphine prescription in the UK before this … (I just didn’t use it enough, clearly). If you need something stronger than paracetamol won’t they just hand it over, or am I unusually lucky with my GP?

yes I’m feeling much more positive in general despite being laid up (down?) with severe nausea on the last night of holiday. But I’m not complaining as I had a day at the beach first & just laying here in the dark as I hear everyone else is actually quite relaxing. I’ve also just stuffed a croissant down my gob & glimpsed the sunset as someone else puts DD to bed so all good really, can’t complain.

OP posts:
Original poster
mowly77 · 12/08/2023 01:47

Bluekangaroo123 · 11/08/2023 21:41

Do you have a stage 4 cancer diagnosis? If not I would ask you to step away & stop promoting something which has no solid evidence to support its use. You’ve no idea how many similar ‘cure all’s’ are promoted to people with cancer & it gets pretty tiresome!

Show quote history

Fucking tiring, and frankly, extremely stupid. Blue Kangaroo I’ve reported this.

OP posts:
Bluekangaroo123 · 12/08/2023 11:39

Thank you for reporting, I reported the first comment & mumsnet said they were looking in to it but to feel free to challenge it on the thread. But it gets so exhausting challenging it all the time!

Doihavetoputaringonit · 12/08/2023 13:19

I can only apologise if my posts caused offence, many others have taken great comfort and benefit from this information. Not quite sure on what grounds it can be reported. I'm also a healthcare professional and genuinely hought some may appreciate this insight- No worries. Good luck with your journeys, I really wish you the best of luck.

Selttan · 12/08/2023 13:30

My mum has just been diagnosed with stage 4 breast cancer and we are still coming to terms with what that means.

First admitted to hospital to remove a brain lesion and now the cancer diagnosis. She has 9 small lesions on her brain that will be treated using radiation and they are doing hormone therapy for the breast cancer.

It is so frustrating dealing with the Drs and the hospital - we are getting minimal information and she has 3 Drs who seem to only visit her when no one else is there and she's getting confused. She just had brain surgery ffs.