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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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Pinchaperfect · 19/09/2023 13:23

Thank you both, yes I would be the same if anyone I knew were in the same group.

I'm the same when Im waiting for results to, it's hard isn't it.

I've had a call, my CT scan has been brought forward to friday and the follow up next Friday.

I also, saw my GP this morning, was really helpful, has upped the morphine and co codamol, and has a plan for me to move onto other pain medication when I need it, its actually nerve pain ive been getting, which I had read about, the tumour is growing and pressing all the nerves in my mastectomy site. Doesn't stop it hurting but good to know the reason I thought I was having a heart attack was NOT because it's basically end of life pain

WrenNatsworthy · 19/09/2023 23:12

Sending love to all.
I'm going to a drop in coffee morning tomorrow at our local hospice. Feels good to have somewhere to go after being in limbo.

Original poster
mowly77 · 20/09/2023 15:35

I’m so ill. And every time you think: is this it?

Coincidentally re @TwigTheWonderKid ‘s recommendation I called palliative care team at local hospice as last time a nurse came to visit and she was so helpful in sorting out my pain and anti sickness meds. But I’ve been discharged! Why how etc. I didn’t use them for a long time but had I explained I wasn’t ready or in need of any of the services but would come back when I was ready. So I had to call my GP and get them to refer me, again, god knows how long that will take. I was in tears as already tried and failed to do some other stuff relating to Will & had to call GP twice yesterday.

although I see a truly excellent oncologist he’s so big picture he’s very remiss on details and prescribing & presumes someone else does that. Well there’s no team of nurses to do that at the Marsden so I rely on myself and I am not a trained medic, but here we are, and my GP. So I’m back on Cape as of this morning & no heart effects burning or otherwise. I got some Lansoprazole & I took it first thing. I am very scared taking Cape again as I feel so generally unwell already. And more so because this is my last tablet treatment available before it’s IV chemo again and I don’t want that, obviously I don’t want any of it.

good things: there’s a cat on my lap.

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AGreatUsername · 20/09/2023 22:12

Hi all, I’m so sorry but I haven’t yet read all the stories here, but I know many of you from the thread in general.

I think I may belong here now. I was diagnosed last May age 36 with stage 3a low grade ovarian cancer. I had surgery and chemo and was declared NED. 9 months on and I have just had PET results through today saying I have lymph spread in my pelvis, chest and neck. I am devastated. I’ve never felt horror like the horror I am feeling right now, like my heart might stop with the fear. Surgery is not an option so I am being referred to The Marsden London for a second opinion, having genetic testing on the initial tumour and looking at clinical trials. There are options to hold it at bay but for how long? I don’t know. Stats are shit.

I will post again soon but I can’t see a way to live with this awfulness, yet I have to as I have 5 children, a full time job and bills that mean I simply must carry on.

LuciaPillson · 20/09/2023 22:14

@mowly77 I'm so sorry you're feeling so poorly. I wish I could help somehow. Glad you have a lap cat who can certainly help! Big hugs to you. I do wish everyone could access good and consistent supportive care. Cancer patients really need so much more than an oncologist.

I've been reading on here about people getting Capecitabine without realizing it's more or less the same as a drug I'm getting - Fluorouracil. I've been on a low dose though. In fact I'm home from my hospital infusion and I have my little bottle of 5-FU infusing into me as I type!

Re all the phone calls etc etc I am sometimes very bad and neglect emails or don't pick up answerphone messages. Usually sometimes I'm just very over it. I get to the important stuff eventually, I have a couple of calls to make tomorrow, eurgh, but honestly I am not a professional phone and email answerer, thank you very much. I just want to kick back and eat some stuff and watch a movie sometimes without being hounded by the long suckery tentacles of the medical profession (who are doing their best for me and I'm very grateful BUT STILL).

LuciaPillson · 20/09/2023 22:31

@AGreatUsername Well I'm so sorry you're here but welcome, anyway. We have tea and biscuits and pirate cannons to defend the ship from all attackers nice supportive chat.

It has just occurred to me that we should think about decorating this space. Any ideas? Grand and imposing with moat, portcullis and towers? Or more of a cottage garden feel with sweetpeas and pumpkin vines? Do we want a koi pond? Pet foxes? Comfy sofas? A luck-dragon? Wine cellars/dungeons? Japanese tatami rooms? Ice cream parlour? Bubble tea? Martial arts classes? Ivied walls and quadrangles? Weaponry? A massive library?

WrenNatsworthy · 20/09/2023 23:38

I'd like a Moroccan thene, with great lanterns and lots of comfy places to lay about. Great drugs on tap. And massages.

Original poster
mowly77 · 21/09/2023 00:16

@AGreatUsername I’m so very sorry.

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Original poster
mowly77 · 21/09/2023 00:18

The shock is real and weird. Deep breaths. Marsden is a really helpful idea. Just try and stay calm stay off Google & wait to see what your options are @AGreatUsername

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Original poster
mowly77 · 21/09/2023 00:20

Can it be all of those things at different times @LuciaPillson? like Howl’s Moving Castle. I’ll be skipping the bubble tea and sliding past the koi carp pond though (phobia!. But I’d like to play with some kittens. looks around hopefully

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WrenNatsworthy · 21/09/2023 00:56

@AGreatUsername Welcome, but sorry you're here.
@mowly77 I'm also a huge cat lover, I have 2. Kittens everywhere in our multi dimensional virtual home (litter trained ones).

LuciaPillson · 21/09/2023 03:20

And I am allergic to kittens! 😄😸😿 But here's the thing, all kittens in this place (um, Fouryland? Metasphere? Mortal Realm? Badass Bailiwick? Utmost Outpost?) will be magically hypoallergenic and unable to cause anyone to have asthma. So it's all good.

Absolutely it can be different things at different or the same times, and everyone can have their own domain to arrange as desired. Here's my advert: "Sail through sunset clouds on Lucia Pillson's pirate ship and luck dragon breeding facility! Land anywhere real or imagined, explore scenic Buddhist temples, Rivendell, Pacific beaches and the best bits of the Yorkshire Dales! You can blast holes in your enemies' hulls whilst chanting the mantra of infite compassion because there's no need to be consistent. Come one, come all, we fly the Jolly Todger (there was a cock-up with the order from the flag company but we are learning to embrace it)."

Someone once signed a letter to me (yes, I come to you from the distant past) with "I hope the weather is nice for anyone you like and not nice for anyone you dislike" and I want to incorporate that feature as I found it funny. Your oncologist displaying insufficient sensitivity? Perpetual hailstones and fun-sized tornadoes!

Also there's no reason at all we need to be boring and have koi in our koi pond. We could have a Kraken, Cthulhu, grumpy mermaids, iridescent dolphins, or the whole thing could be filled with the drink of your choice which you could scoop into pint glasses.

HerbalRefreshmentt · 21/09/2023 19:57

I like the idea about how this is essentially the Room of Requirement like from Harry Potter - its whatever you want it to be :)

Had an unexpected bonus this week at my monthly H visit - pharmacy screwed up my order and didn't do the count right, so I have two months of one pill and a month and a half of the other (Cape so two different strengths), but that means I can skip the pharmacy wait next time as I am covered. I thought it seemed like rather a lot of pills stuffed into the boxes!

Bone injection Monday caused all sorts of grief the last few days but seems to be subsiding. I hate those with a passion but we had to go back to monthly due to my hip. It really DOES seem to be helping though I could really do without the four days of pain and inflammation.

@AGreatUsername I sorry to see that you have joined us over here in this thread, but I hope we can give you some well needed support and a place to vent. The Marsden may be crammed to the rafters (Chelsea at least, dunno bout Sutton) but there is a certain content vibe going on, the nurses all seem to be busy but empowered? Doesnt appear to be a lot of turnover. Even the blood lady stopped to chat with me Monday afternoon outside pharmacy when she realised I was STILL THERE going through my rounds of appointments lol.

@mowly77 Cape is slowly slowly bringing my numbers down, but they also slowly slowly went up so for a Grade 3 cancer it sure likes to take its sweet time doing anything. Youll have to give it a good 3-4 months try for sure. Will they do a blood biopsy to check for mutations if you progress? There are still some pill based therapies if you have certain mutations.

TwigTheWonderKid · 21/09/2023 20:26

@AGreatUsername so sorry to see you over here but this is such a great, supportive place.

@mowly77 how are you feeling today? My palliative care nurse called me today to check in and said if I was still feeling better when she calls me next month she'd discharge me but she said it would be really easy to go back on her list, so fingers crossed it's straightforward for you.

Original poster
mowly77 · 22/09/2023 07:12

I can’t get the Cape in me. Yesterday (day 2) I woke up with the horrific heartburn I had before. It wasn’t as bad as before i.e. it didn’t feel like dying from a heart attack. But although it eased & I took my first dose of Cape on day 2 it came back & I was too sick to take second dose. I am utterly screwed if I can’t get this drug in my system. It’ll be curtains for me.

Someone from the palliative team is coming Monday. I hope to god they’ve got some useful suggestions.

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TwigTheWonderKid · 22/09/2023 07:39

@mowly77 Are you taking the Cape on a full stomach? And have you been prescribed something for the heartburn?

Original poster
mowly77 · 22/09/2023 07:49

I eat small breakfast before morning dose (I’ve hardly managed the evening doses) and am taking Lansoprazole now twice a day - two hours at least before the Cape - as the heartburn is so bad. It’s taken the edge off — it’s not death but it’s still utterly debilitating, stopped me in my tracks, didn’t dare take another dose.

The one time I didn’t eat beforehand the burning started straight away, was horrific, lasted for 15 hours & that’s when I thought I was having heart issues so dare not take it without food? I do not know what to do anymore and feel so sick and helpless.

I’ve been in bed all week again and it’s terrible for my daughter. My husband was also an absolute grade A verbally abusive twat last night & I have zero energy for that.

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LuciaPillson · 22/09/2023 14:27

@mowly77 Your husband was a what? Oh no no no no.... teared up reading that. He must not. Can he be asked to somehow re-ignite his compassion? Is he usually kinder? Of course caregiver stress is real, I've had it and one can be grouchy to the patient even when you love them very very much.... I was like that sometimes in my caregiver days to my shame, didn't always cope well and it's not easy to control I found. But "abusive" is going too far.

I can't remember if you've said anything about it but can you be given the drug intravenously instead of tablets? Or a lower dose? I'm on low dose IV Fluorouracil or 5-FU, it infuses over 46 hours so I take it home with me and it is attached to my port. From googling I understand it is basically the same drug, or the Capecitabine (assuming that is what you mean by Cape) turns into 5-FU in your body somehow? It is not too hard on me, of course there's a chance it isn't helping me much either bc of the low dosage but I'm not suffering as you are. However, different cancer (mine is colon with, so far, abdominal mets), different protocols I guess. But for me because I am incurable, my oncs have no desire to torture me, they want quality of life above all and are very emphatic about this. Very tricky balancing act this business of palliative treatment seems to be and I don't know what the right answers are.

Anyway. Hugs hugs hugs hugs hugs.

TwigTheWonderKid · 22/09/2023 15:55

@LuciaPillson I also have a colorectal type cancer and was offered the regime Oxaliplatin plus 5Fu but I wanted convenience of the Cape tablets and to not have to go back 2 days later to have the pump removed. I think @mowly77 is traveling a fair distance to the Marsden so it may not suit her.

@mowly77 I'm guessing you have cut out foods and drinks likely to make the reflux worse? Are you a member of the Xeloda/Capecitabine Stage 4- Metastatic Cancer Support Group on FB? Might be worth posting on there?

Original poster
mowly77 · 22/09/2023 16:04

thank you @LuciaPillson yes I understand it's basically the same drug too. I have wondered if there's a different formulation it may come in. I will raise it with oncologist. I'm not sure about different protocols for different cancers & in different countries but worth asking. I already had that drug in 2011 with first breast cancer as I had FEC chemo & it's the F... on another note they don't give FEC anymore as it's too brutal/they developed better chemotherapies. Yay.

Yeah my husband. He is quite unpredictable but he does get strung out with caring for our daughter mostly on his own and worrying about me. Can't say he was caring for me yesterday as not one morsel of food or drink did he bring me. And I looked after my daughter the entire time post-school, so all he had done ws take her in the morning yesterday. I was struggling to boil eggs for tea for my daughter and me, was in such a state. He had left and gone swimming right at teatime with no communication & left me in the shit.

He can be compassionate and caring to a point and then it just ... stops. He gets very angry, verbally abusive, like he's in a fuge state & can't be stopped, doesn't ever think before he speaks & says awful things. He also tries to mke it about him and his stress of living with me which I understand but he needs to let that negativity out on someone else. He's not NT but there's no excuse for it, compassion fatigue is very real & I understand he's got it hard in a very different way. He is retraining to be a counsellor (ha) but that's emotionally draining him too. He has separate counselling outside of his training so that should be a great outlet for him (& I don't because I'm too ill to go there, ironic) (but I've asked her for telephone appointments). I'm not making excuses for him because there aren't any really for relentlessly shouting and swearing at someone as ill as I am.

He clearly felt defensive about not doing so good on the caregiving front yesterday either to me or daughter, but he'll have to work that out. That's all the brain space I can give it.

i'm fretting about not having finished my will (hold up on solicitors end now) & many many important things I wanted to do before I die.

I'm so ill right now it would be a relief to die. Just put me under, in a coma, I'm 18 months into this but I'm stuck. Only thing stopping me from going to Dignitas right now is my daughter. But I can't parent her when I'm this ill & I'm giving her anxiety. She kept asking if I was ok yesterday, if I was sad. Which breaks me. And when she does see me she has huge separation anxiety afterwards.

It's all so fucked up.

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Original poster
mowly77 · 22/09/2023 16:13

Hi @TwigTheWonderKid Yep I'm on that group, I did a search & quite a lot of heartburn but not so debilitating they've had to stop the drug? There's also so much confusing info about whether the drugs I'm on interact with Cape or not so that hasn't helped me, so I'm going to look again when I've the strength.

yeah well if I can't do Cape its IV chemo or nothing it seems so that would also mean too many visits to the Marsden, guessing weekly. Nothing seems like a solution apart from giving up & dying.

But yes in the meantime I'm learning about what gives you heartburn & trying to work that out & I've ordered a wedge to sleep on at night as you're supposed to elevate your chest and head; pillows don't work apparently. Makes sense. I suspect a big part of the issue is I am always in bed so not in an optimal position for eating and drinking. yesterday I got up and moved around after eating and taking Cape but I was still done for by early evening.

Anyway god this is boring. I want to go to Lucia's pirate ship/ room of requirement and see some mermaids.

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LuciaPillson · 22/09/2023 16:20

🧜‍♀️🧜‍♀️🧜‍♀️🧜‍♀️🧜‍♀️🧜‍♀️
🦜🏴‍☠️⚓

HerbalRefreshmentt · 22/09/2023 18:01

@mowly77 I had horrific heartburn on olaparib when I first started, and it was three days of god awful pain that didnt subside until the lansoprazole kicked in and I was drinking gaviscon like it was going out of existence. Survived on popsicles and cream crackers and lost 5 lbs. It is the absolute worst but once the lansoprazole built up it settled down. However, the side effects I got from that were flu like (with diarrhoea) so if you feel weak and yuck, it may be the lanzoprazole.

You definitely have to eat with cape, though - are you eating bland foods before your dose? I keep microwave rice packets on hand, cream crackers, oatmeal is a good one some nights. Stay away from anything fatty like cheese or fried foods, or acidic like certain fruits or tomatoes. Coconut water was a nice way to change things up a bit and eventually I moved on to jacket potato (no cheese, bit of butter) and peas, etc.

Original poster
mowly77 · 22/09/2023 18:28

THANK YOU @HerbalRefreshmentt Very good suggestions. My main mistake is not waiting for the lansoprazole to kick in, I think. No more Cape for now & I'm going to keep taking the lansoprazole over the weekend and that fucker had better kick in. Yep I always eat before dose (now) & am experimenting with blandness. Yum. I was having muesli / granola / oats type thing with yoghurt but maybe the yoghurt should go.

Heartburn seems like such a common & well-known complaint I just can't understand why I can't solve it. It's doing my bloody head in. It's like a horrible riddle in a horrible game & if I can solve it I can ascend to the next horrible level which is taking Cape & getting more, different, fun side-effects.

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HerbalRefreshmentt · 22/09/2023 19:25

Sometimes when Im doing bland diet I think of that old show with that woman (Jillian McKeith was it?) who would go to fat people's homes and they would fill a table with what they ate in a week and it was all brown and beige food and they would be shamed before she taught them how to eat appropriately. Though I guess my table would only have some slices of dry toast and maybe a yoghurt not a pile of pizzas and kebabs!

I say all this while hubs pulls a squishy cheesy hot beef bolognese ready meal from M&S out of the oven. Man, that seemed like the best idea EVER tonight, for a sixth the price of a takeaway. We dont do ready meals very often, and I could make it at home but why. That and I was fresh out of cooking ideas for the week!

Should be a nice weekend, I hope you can get out with your daughter a bit @Mowly77.