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

OP posts:
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LuciaPillson · 07/11/2023 13:36

@mowly77 Oooh, result indeed! That's wonderful. Banana and two pillows sounds an oddly phallic, yet I'm sure comforting toolkit for surviving the hospital experience.

Curious though I must say about Perpetua's friends and relations which I'm sure, like Rabbit, she has in unending supply. Will they turn up with a pack of hounds? Waxed jackets and tweeds and green (or whatever poshest colour is) wellies? Women in floaty dresses discussing their lunches out and where to buy 250 quid knickers and keeping saying they're longing for a cup of tea or a prosecco? Enormous numbers of rampaging children with remote controlled drones? Bored husbands taking loud wankerish work calls on their phones? Whole families who will want to FaceTime other whole families while there? Perhaps they're the loud ones and she's the shy quiet introvert of the bunch. 😳

Original poster
mowly77 · 07/11/2023 16:57

Yeah I was quite sorry to miss them but not that sorry. Your sterling imagination has done a good job …

there was a therapy dog here earlier so a touch of hound

OP posts:
HerbalRefreshmentt · 07/11/2023 18:20

I will admit to enjoying the Ward Lyfe tales, I had great fun texting my family in the US in real time about what was going on around me (some real howlers!) in July when I was stuck, but there is ALWAYS one who pushes you to the mental limit with their entitled bs . How come there is like GDPR on everything and yet I will automatically know everyone's diagnosis and illness and treatment immediately on a ward, possibly even complete with commode noises and body flashes?

Hope your new area is much better - are hubs and little one coming to visit later tonight? Hows the food situation? Was the banana actually ripe or could you have used it for bodily assault on Perpetua?

TwigTheWonderKid · 07/11/2023 19:12

mowly77 · 07/11/2023 16:57

Yeah I was quite sorry to miss them but not that sorry. Your sterling imagination has done a good job …

there was a therapy dog here earlier so a touch of hound

Dog wasn't a schnauzer called Stanley, was it?

Original poster
mowly77 · 08/11/2023 08:15

Ooh I love schnauzers - The Thin Man dogs. No it was some kind of poo mix although name was remarkably similar to Stanley! Can’t remember it but would have sworn he was called Stanley because he looked like one. He was a bit touched out and had to be escorted out because he was about to bark. His handler said he barked yesterday and she gave him a treat to keep him quiet which she immediately recognised as a mistake.

I shall look out for genuine Stanley though as I have cancelled my holiday (wah) don’t feel any better than when I got here on Monday (double wah) and feel I might be in for quite a few days until some of these antibiotics are working (triple wah). I can’t sleep at night due to coughing and retching and I’m exhausted from it.

Disease progression means my right lung is partially collapsed and filled with fluid hence infection. The only bright side is no more cape. It’ll be onto carbo platinum something or other next. Anyone have any experience?

OP posts:
LuciaPillson · 08/11/2023 13:44

@mowly77 What are they giving you for pain/sedation? I can't remember what you respond to or tolerate but retching and coughing are so painful in themselves when they persist and you need to get some sleep. Can you ask for something better at night? Sorry these are likely imbecilic and useless questions on my part.

Or threaten to take matters into your own hands and outsource it to a drug dealer. Judging by one of the threads in aibu you might need to move to Liverpool area!

Carboplatin? No experience, looks from quick google like it's given by IV. I hated that you were struggling so much with the Cape, just seemed like way too much but then what do I know.

Greyandrare123 · 09/11/2023 03:18

Hello all. Ive read the thread and Mowly I want to smash whatever tablet that woman is using to loudly facetime.

Has anyone become judgemental of others? I have.

  1. Friend from school who informs me at my diagnosis she will be there for me and also sends evidence of this on a card, contacts me every 7 months or so. 7 months can be a gamechanger for us. Latest msg was she wants to meet in next 2 weeks before she 'goes away' (retired) on holiday. And oh, slips in she needs advice on her cpap for disordered sleeping. Sus motive? Oh yeah.
  1. School friend 2. Contacts me only in half term. Havent seen her for about 2 years. Tells me her dad saw me in the corner shop and he thinks I look great! Whoopey. Validation from her dad! I mentioned it was smoke and mirrors as side effects of enhertu are rough. No response to that, or maybe its coming next half term.
  1. School friend 3. Her mother needed major heart surgery. Loads of check ins by me. I gave her a lot or support. Not heard a dickie since mother has been discharged and doing well.

So Im ignoring the lot of them. It isnt hard to ignore them given they only contact me sporadically anyway.

And my mother in law asked me what I wanted for xmas. Physically Im well. So was thinking some perfume, an eye palette, nails done or money towards a wet suit. I walk, swim and do weights.

She gave me the following options. 1. An orthopaedic pillow. 2. A mattress protector 3. A gripper 4. A flannel sheet 5. A bed jacket.

Given I am already utterly miserable, being firmly labelled as disabled by the MIL whom I had dinner with only last week hasnt helped claiming my optimism. I am indeed disabled but I dont need disabled aids at the moment as its my neck that is crooked, other bits are fine. I was annoyed at the assumptions and Im finding the chorus of 'but she means well' hard to digest.

Good news is pre acupuncture I had been feeling queasy for days and post acupuncture I have managed a plate of scampi and chips, 2 cuppa soups and a banana..

55 years old stage 4 triple pos breast cancer 4 years in and on enhertu, trying to be less miserable, annoyed and possibly annoying.

Original poster
mowly77 · 09/11/2023 21:44

She’s still in the next ward @Greyandrare123, one of the gossipy nurses told me she’s in for ages as she’s had some kind of complicated operation despite being “SO WELL!” So I might pop round and smash it tomorrow. I’m feeling quite ragey after 4 days in hospital and not feeling much better for it so that sounds like just the ticket.

And yes I totally get what you’re saying about other people. I ignore people a lot. Especially if they ask stupid questions such, as in reply to school mum asking if I was free on Sunday I said no I was in hospital and I didn’t know when I was being discharged. Her: “oh no! When are you coming out?”

Being told I look good is a particular bugbear of mine if you read right back in the thread. But luckily my next line of treatment if I ever get rid of this infection and out of hospital is hardcore chemo and I’ll be bald. I dare anyone to say I look great then. (I have an odd shaped and small head. I’m going to buy some crazy turbans maybe).

OP posts:
Tilllly · 09/11/2023 23:04

mowly77 · 09/11/2023 21:44

She’s still in the next ward @Greyandrare123, one of the gossipy nurses told me she’s in for ages as she’s had some kind of complicated operation despite being “SO WELL!” So I might pop round and smash it tomorrow. I’m feeling quite ragey after 4 days in hospital and not feeling much better for it so that sounds like just the ticket.

And yes I totally get what you’re saying about other people. I ignore people a lot. Especially if they ask stupid questions such, as in reply to school mum asking if I was free on Sunday I said no I was in hospital and I didn’t know when I was being discharged. Her: “oh no! When are you coming out?”

Being told I look good is a particular bugbear of mine if you read right back in the thread. But luckily my next line of treatment if I ever get rid of this infection and out of hospital is hardcore chemo and I’ll be bald. I dare anyone to say I look great then. (I have an odd shaped and small head. I’m going to buy some crazy turbans maybe).

"You look great"
"Compared to...?"

Go on, I dare you

RedRosesPinkLilies · 10/11/2023 22:34

When people are telling me I look so well these days - I just want to turn it round on them and say something like ‘scary isn’t it? Wonder what your body is hiding?’

But I’ve never been brave / quick enough to do it.

Original poster
mowly77 · 12/11/2023 21:18

So. Awful and surprising news. I’m
not going to make it. My breathing is fucked & in short and they can’t fix it. I’ve been moved to a private suite here which is like a slightly nice Travel Lodge if you squint a bit. They’re trying to make me comfortable. It seems like it’ll be quick.

Cancerland is a shit place but honestly it was a wonderful place to share with all of you. I do hope someone can take on this thread if it ever needs to be - maybe @TwigTheWonderKid or @LuciaPillson?

much much love Mowly x

OP posts:
TopOfTheCliff · 12/11/2023 21:31

Sending much love @mowly77 May you find peace. You are already much loved xxx

CardinalCat · 12/11/2023 21:35

Delurking (I have an incurable illness- not cancer- but have drawn strength and inspiration from this thread even if I don't fit.) @mowly77 I am sending love and peace to you and your family. Your humour and defiance and honesty has been quite astounding to see. There are no words but many unmumsnetty hugs to you xx

RedRosesPinkLilies · 12/11/2023 21:37

@mowly77 I am so sorry. I hope it is peaceful, I’m sure it will be. With lots of love xx

Looby4 · 12/11/2023 21:38

@mowly77 I’m so sorry to read this. Having lost my sister in law at the age of 43 to small cell lung cancer in April this year, I can understand only a little of what you’re all going through. I think you meant to tag another Lucia - @LuciaPillson rather than me, and I hope she can carry this thread on. I wish you all the best and am thinking of your family too. There are no words, just a hug. X

Silkiebunny · 12/11/2023 21:48

I am so very sorry Mowly Lots and lots of love from Floof and I to you and your lovely DD. If there's anything I can do for you or your little girl just message me, not too far away.

MrsPositivity1 · 12/11/2023 22:13

@TwigTheWonderKid Apologies I’m only coming back now. I have the bulky feeling under my ribs which I had previously

Fantasea · 12/11/2023 22:14

@mowly77 sending you and your little girl all my love Xxx

SummerCycling · 12/11/2023 22:27

@mowly77

Sending you all my love xxx

If there's anything I can do please message me. I am less than half an hour's drive from the Marsden in Sutton.

❤May you find peace. You are very loved x

MrsPositivity1 · 12/11/2023 22:31

@mowly77 I'm so desperately saddened to read your post. I am sending you gentle hugs and your daughter and DH love and strength. Life is so incredibly unfair.

I’ll be praying for you and your family. Much love xxx

TwigTheWonderKid · 12/11/2023 22:38

Oh precious @mowly77 , what a bugger. Are you ok? I know that sounds like a mad question but when I think about dying I can only think about how my departure will affect my boys and not what it will be like for me.

Like @SummerCycling I'm close by so if you need absolutely anything just ask.

I wish we'd managed to meet in person and under different circumstances but I have loved getting to know you here, it's been special, as are you.

Huge love to you, your DH and your precious girl.

Original poster
mowly77 · 13/11/2023 04:22

I kmown@TwigTheWonderKid
Just thinking about DD and all the things I thought has fine to do for her but I don’t

Not a thought to myself

OP posts:
SierraSapphire · 13/11/2023 06:16

Aah, so sorry @mowly77 (though I laughed at your squinting Travelodge room, that was just what DD said about mine when I went into have an unconnected op a couple of weeks ago). You are one of the people who chatted with me about researching and challenging the doctors on my crap journey when they didn't appear to be following the new guidance, which made me feel less mad (in an insane sense, I still felt mad in an angry sense!) So thank you for the difference you made to me, and I hope you're as comfortable as you can be ❤️💐

TwigTheWonderKid · 13/11/2023 07:33

I know what you mean @mowly77 but you've done the most important thing; you've loved her fiercely all her life. It's utterly shit but she'll always know your love.

Who's with you @mowly77 ?

HerbalRefreshmentt · 13/11/2023 07:58

Ahh @mowly77 Im so very very sorry to see this update. It had gone quiet over the weekend and I was hoping that meant you were on the mend and were able to get some rest. This outcome must have come out of the blue, but it sounds like you are managing as well as could be expected. I hope they can get you comfortable and you can spend some really solid quality time with your little girl and DH. Thank you for all the great black humor zingers, and for starting this thread for all of us in this same unfortunate boat.