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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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45
Bluekangaroo123 · 18/08/2023 10:44

Hi @Elisebev, I can really relate to the wondering about results & second guessing as I had this recently. I had a holiday booked & usually have phone follow ups & they wanted me to come in face to face. A friend that’s had cancer was saying that there’s not much anyone can say or do to make the waiting better & the best thing is to distract yourself with nice things. I decided that was the best strategy but it hard waiting. Will be thinking of you. Hope everyone else is ok.

Merchantadventurer · 18/08/2023 12:38

I am waiting on scan results too and it is awful! I have a call with hospital on Tuesday but it is my regular 3 weekly chemo/bloods review and I will be away with loads of family - coming home on that day. I know it won’t be the consultant as he has said he will be away.

I am half tempted to not mention the scan unless they do and follow it up with BCN when I am home on Wednesday . I don’t want to deal with shitty stuff with loads of people around as I am usually very private about it all.

Elisebev · 18/08/2023 14:43

Blimey scan done this morning and already got scan results through. Wish that would happen every time. Everything looks good. So relieved

ohimsohappy · 18/08/2023 15:02

Oh god I hate the scanxiety , I really hate it . But it's also such a relief when the oncologist gives good news after it and it's a good day .

Bluekangaroo123 · 20/08/2023 19:52

Elisebev · 18/08/2023 14:43

Blimey scan done this morning and already got scan results through. Wish that would happen every time. Everything looks good. So relieved

Thank goodness! Happy for you. Waiting for scan results is the worst.

ohimsohappy · 21/08/2023 21:42

So I can now have my chemo a week and a half later than due , after my chemo missed the vein and went into my hand , phew . No real damage done except from a stay in hospital and a visit from plastics and some steroids .
Hope everyone is doing ok and finding each day has a high point . 🤗

testingtesting · 22/08/2023 22:36

I don't have stage 4 cancer, but I work in cancer care with lots of stage 4 cancers.
I can understand that the mention of hospice/Macmillan nurses have very negative connotations, but there is a lot of emerging evidence that early referral to palliative care services can be of benefit to patients with stage four cancers. It has been shown that patients who access early palliative care (EPC) report better symptom control, higher quality of life, and improved overall survival. (I don't work in palliative care, but refer lots of patients for EPC).
Happy to share links to the research if you want.

Original poster
mowly77 · 23/08/2023 04:26

Hi @testingtesting - I’d be interested in some research. ‘Improved overall survival’ though? Longer survival time as compared to patients not accessing services ? Links would be helpful for anyone on this thread who wanted to take a look I’m sure.

I found the palliative care nurse very helpful when I did see her. My point is only that the idea of ‘palliative care’ - i.e. these are staff from a hospice - is extremely triggering as it’s such a stark reminder you’re going to die of cancer, quite possibly in a hospice. And so much of a stage IV diagnosis is trying to live each day & not sink into constant repetitive thoughts of death.

Not sure there’s much to be done about that though.

I’m feeling particularly mentally terrible at the moment anyway. I hope everyone else is managing to find a spark of joy. I’m going about my day but I almost literally feel death standing behind me most of the time.

I don’t know how to change it. I’m sure it will change because it always does. But right now it’s not good.

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TwigTheWonderKid · 23/08/2023 10:49

Hey @mowly77 , how was the wedding?! Are you still in the States?

I'm "enjoying" my second hospital admission in the past week. Infection of unknown origin. Yay.

Though was good news last week! DS1 did really well in his A levels and got into his first choice uni. Celebrations rather marred by me feeling utterly dreadful after my first Oxaliplatin and not being able to get out of bed though ☹️

Fantasea · 23/08/2023 12:33

@mowly77 I'm really sorry to hear you're struggling. If you're not back in the UK yet, I'm hoping your journey home goes as smoothly as possible. I'm hoping your wedding went well too.

@TwigTheWonderKid really well done to your DS1, that's fabulous news! I'm so sorry you couldn't join in with the celebrations. Cancer takes away so much.

Original poster
mowly77 · 24/08/2023 04:48

Hi @TwigTheWonderKid - sorry to hear about your second hospital admission, surprise hospital admissions are never fun & I hope you are full of fluids and antibiotics and on the way to feeling a bit better today. & congrats on DS1 A levels! & uni! That’s a magical thing. We have to take all the wins & celebrations we can.

I’m still in the US, me & DD don’t fly back until next Friday, arriving Saturday morning which is madness really as she starts year 1 on the Monday & I have to drop her off & rush up to the Marsden straight after — always a long day normally ending in complete failure by the pharmacy to have any of my drugs ready. All that will be fun with jet lag.

The wedding was a great day. But it feels like forever ago now. And I’m on the mental countdown to go home and a huge mountain of stuff to do. After the recovery from the journey; start of term; & the start of Xeloda the first thing on my list: MAKE MY WILL!

Then a bunch of stuff for DD to remember me by. Thank you for the suggestion upthread to record my voice. I recorded a little video of myself reading a favourite book to DD after diagnosis right before the first chemo hit me and all my hair fell out. I want to do more stuff like that. I wish I had a recording of my mum’s voice as I simply can’t remember it anymore. But in 1985 not as easy as now — and I also think she was probably in denial about her situation or maybe the doctors didn’t even know. She died in hospital very suddenly. All I know is she was having chemo at the time. She had a nosebleed that wouldn’t stop and she checked herself in & that was that. Never saw her again.

Even if something sudden and awful like that happens to me I have videos / photos /letters I’ve written to DD so I hope that’s a comfort in some way.

Morbid. Good lord! We all went bowling tonight & ate lots of fried food (fried pickles with ranch are my favourite!) so that’s a win.

I took my last dose of Palbociclib and Letrozole yesterday too as I have to be off them for 2 weeks before starting Xeloda / Cape. I don’t know how to feel about that. Even though the last scan proved differently I’ve started feeling physically better - less pain - in the last two days, & a
small part of me is thinking they might have magically started working again. A fantasy … like being told the stage IV diagnosis was all a mistake. I’m not sure if that’s denial, bargaining or just madness.

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HerbalRefreshmentt · 24/08/2023 08:57

@mowly77 Yeah I hear you about that pharmacy two-step at the Marsden, though they have some really lovely people working there. Two new Canadians I think and they are so cheery and want to be so helpful while the line is just piling up along the wall. Pharmacy is ALWAYS the let down though, it was a major issue over at Barts too. I know the oncologist behind the curtain has to double check and approve things but surely they can automate some of this stuff?

Got my scans back and its all a bit muddled and now my hip is either going to be replaced completely or get a few rads. Xeloda effectiveness is still not clear, markers dropped a bit but the hip is a disaster area that doesn't seem to be responding. Really annoyed because for being chemo naive you would have thought My First Chemo would have actually done something! Another scan early October which I dont mind but Im real tired of watching the days go by as I limp along. At least they sent me home with a giant (glass!!) bottle of liquid morphine so I've actually been able to sleep at night which is a relief.

Went back to work yesterday after being off for five weeks due to the lung clot and while I know my line manager well and hes a good guy, he kinda misread the room talking about his two weeks holiday starting from Friday and squeezing in another in November. I couldn't go on my own half-assed holiday because I couldnt fly and now a short train journey I want to book in late September is likely off the table because of timing with the hip situation and there is no point going if I cant move/in pain. Was a bit annoyed actually lol like dude, Id love to even make it to the shops never mind the airport and getting on a plane. So burned out on this cancer crap.

Original poster
mowly77 · 24/08/2023 15:47

Hi Royal Marsden friends! That’s good to know about the new staff at pharmacy - they are always very nice, but yes indeed waiting for the oncologist behind the curtain. I think when they went to a new computer system (although the app is very useful) a while back it of course stuffed everything up. It is supposed to automate it! But it hasn’t seemed to work properly —they always end up on the phone to the clinic upstairs to see what’s happening. Once I was told “come back in 5 minutes & it will definitely be there” for a solid hour before we all gave up & it ended up being couriered to my house the next day - although that also took a million phone calls to ensure was definitely happening.

That’s so frustrating about your hip, @HerbalRefreshmentt . I’ve never had radiation but I would still take surgery over treatment any day. New hip surely? I think I just like the GA as I’m a chronic insomniac. There is a very funny thread about responses to waking up after a GA floating around MN somewhere if anyone wants a distracting laugh.

It’s super frustrating when people don’t read the room, particularly with holidays and big things when your own life has been so shrunk down. I can’t actually deal with most people talking about anything these days. I’m dreading start of term & school parents asking me if I had a nice summer. But unlike reception year we won’t have to all gather in the playground and wait & make aimless small talk (or glare if anyone tries in my case) - I think we have to line up somewhere else?? (tiny infant school) so hopefully the opportunities to hear other people’s complaints / boasts will be more limited.

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Original poster
mowly77 · 24/08/2023 15:52

I‘m almost too scared to click on that link @zazasabore because although all my family are here I’m not a citizen & I definitely won’t be able to get health insurance. The emergency room visit here was amazing however in terms of efficiency. Although I’m still waiting for my massive bill. I have no idea at all how much it will be & I keep making wild guesses to myself. I have a £1000 excess on my travel
insurance and the rest will be covered by them but I will still be very interested to see how much a CT scan & X-ray cost.

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HerbalRefreshmentt · 24/08/2023 19:56

I read that link and I would argue its out of date post-Covid and Obamacare wasn't taken into account. The UK system is already two tiered and Im guessing maintaining my annual gynae checkup I had in the US would have caught this cancer way WAY before it ended up Stage IV. There is also a lot of psychological stress via NHS pathways in terms of not knowing what is going on, delayed scanning, hell even a hospital stay on a ward. A fuck up the weekend before regarding my partner in an NHS hospital led to extreme stress that Im pretty sure helped precipitate the blood clot. Im afraid to switch jobs in the UK because I get great insurance at my current place which is paying to bring my care up to almost US standards. Im sure I could port it and pay out of pocket but how did I end up in exactly the same situation? I cant even quit my job because the govt sick pay benefits here aren't worth it.

Mowly - you wouldnt have to be a citizen, just have a green card or whatever and access any of the state plans/exchanges or eventually come under Medicare as cancer is classed as something you have access to that program, regardless of age. I very very much want to go home next year but I have got to get a handle on what that would look like for benefits and medical care.

Neither system is better than the other, it just depends on who you have to fight to pay the piper - the govt or the insurance companies.

Re: hip - I loooovvvvee a bit of surgery, truly, but its a five week wait for my appt with the orthopedic surgeon they wanted a second opinion from, so hoping he already told them to radiate. Its five days and you get relief almost instantly. However, the prospect of a new hip is also kinda cool, honestly I just need a titanium underbody like the Terminatora at this point.

TwigTheWonderKid · 26/08/2023 18:36

Hi guys, day 5 of hospital, still on IV antibiotics and was feeling a lot better having had 6 litres of fluid drained from my abdomen but now I've developed some horrible pain which just won't go away and I know I need to take the oramorph I've been prescribed here but for some ready it feels like a scary step.

I'm upset that it's taken a hospital admission to get them to take the ascites seriously, especially as that's where the infection is. I had weeks of feeling awful plus they've had to stop the Capecitabine until I have got rid of the infection and I'm so worried about the consequences of that.

Anyway, we are where we are...

Bluekangaroo123 · 26/08/2023 20:38

Sorry to hear that Twig, that sounds really tough & scary. I’m sorry to hear you’re in so much pain. Have you taken oramorph before? I’ve had it a few times & although it doesn’t agree with me I’ve also been taking oxycodone which is a similar strength. When she prescribed it to me the oncology registrar did reassure me that it’s prescribed for lots of things & not to fear that I was in some kind of last chance saloon.

Bluekangaroo123 · 26/08/2023 20:40

I think I’ve missed some of the updates but glad your wedding went well Mowly. I’m starting radiotherapy next week but just been worrying a bit that I can feel mets in other bones now. It’s so hard not to spiral with cancer. Also I’ve just eaten 3 fondant fancies just because. Hope everyone is doing ok.

Original poster
mowly77 · 27/08/2023 15:42

Now I want fondant fancies @Bluekangaroo123 !

sorry to hear you are still in hospital @TwigTheWonderKid . I understand about the opiates. I am currently watching Dopesick, & I just watched Painkiller on Netflix & I got myself into a right tizzy about my oxycodone prescription. But I just saw a GP here in the US who said oh goodness you don’t need to worry about that - these drugs are for people like you & you need them. I do now realise there is no pride in not taking them and suffering with pain. They gave me a morphine shot into my vein in the ER & it was amazing to be almost totally pain free for a couple of hours. I do think we get used to struggling on with pain etc & suddenly when it’s taken away you think why on earth was I resisting that.

GP said I should take them ‘for life’ though (obviously the rest of my life which will be sadly short) & I do balk about that a bit because of the side effects (morphine & codeine are killers for constipation for a start) & sometimes I have less pain & I really don’t need opioids every day, but my body is probably reliant on them now so suddenly stopping will make me ill as well. When my pain starts to improve as it sometimes does I titrate off them slowly & see what’s the smallest dose I need.

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Original poster
mowly77 · 27/08/2023 16:01

I finally read that US/UK comparison study @HerbalRefreshmentt & I tend to agree with you. My recurrence would almost definitely have been caught earlier in the US as the NHS let me down badly on that point. Psychological stress is a huge issue in the NHS post-Covid; Brexit; & Tories. My experiences of emergency care in both systems were also worlds apart. I genuinely think I have PTSD from my emergency admission to my local shithole UK hospital last year.

And my ER bill finally is revealed: $4,956. That was a chest x ray; CT scan; blood and urine panels; doctor time; fluid drip; and one shot of morphine & one shot of anti inflammatories; & prescriptions (separate cost of about $50 at the pharmacy). Plus an ER fee I had to pay there and then of $300. Trying to get hold of that bill and actually pay it before leaving (I’m flying back Friday) was as stressful as anything to do with the NHS! The hospital only sends bills through snail mail; or you can drive 3 hours to their billing office ?!! No snail mail bill - you can’t pay it. They didn’t send it out until 2 weeks after the visit & US mail can take up to 14 days to arrive. Couldn’t access online without a SSN. Brainless billing department had zero suggestions about what to do if the bill didn’t turn up before I left the country!

If I was on vacation here at a hotel etc & not at my parent’s house I would have been tempted to simply leave (and therefore not pay it) as they had no alternative ideas or payment systems & did not seem remotely alarmed that I was leaving the country & had no bill.

My sister managed to sort it by using her own online account. But honestly … what a palaver.

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Original poster
mowly77 · 27/08/2023 16:17

I also understand about not being on cape @TwigTheWonderKid — it gets really worrying doesn’t it? If you are able to speak to your oncologist they might be able to reassure you.

How’s the hospital stay in general? Are you managing to stay sane with podcasts / books / etc? And some nicer food that hopefully someone is bringing you?

And if you weren’t taken seriously before, a PALS complaint or even a strongly-worded email could help ensure it won’t happen again. I totally understand what an awful energy suck complaining is. But without drawing attention to these fuck ups I feel they get made again & again at the expense of us, the long-suffering patients. I feel strongly that no-one should experience such things & if I can shine a light on it it might just help others in my situation further down the line. But that’s personal to me. More admin is the last thing anyone who is ill in hospital wants to do. Sending you love and strength.

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TwigTheWonderKid · 27/08/2023 18:37

@mowly77 hospital stay is actually quite nice. I've got my own en suite room, with a view, almost all the staff are utterly lovely and apart from breakfast, the food is actually very good. I had hardly been eating for weeks because there was no room with the ascites but I've just wolfed down my dinner.

I actually quite like a bit of solitude and I've been using the time to get some of DS's uni shopping ordered online as I'm not sure if or when I'll make it to actual shops before he goes.

Last night night I wrote a massive reply to your previous post, about memory making and mums etc and my sodding phone switched itself off before I finished. I'll try and do it again this evening. It's so good to be able to share that stuff with you, we have a lot in common.

Original poster
mowly77 · 30/08/2023 16:56

Hi @TwigTheWonderKid , how are you doing now? The hospital stay does sound quite wonderfully relaxing. I also enjoy my own company, & if there is also good food & a view I can take it!

Hope everyone else is doing as ok as they can be.

Flying back to the UK on Friday on an overnight flight. I am dreading it. I find it hard to get to sleep & am in so much pain when I wake up, sitting on an aeroplane will not improve matters at all. But DH will pick us up, so once the actual flight is over hopefully it won’t be too taxing.

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TwigTheWonderKid · 31/08/2023 12:27

Hey@mowly77 I'm ok. I got up super early to go for an echocardiogram only to receive a phone call whilst I was in the loo at the hospital AFTER I'd checked in to tell me it had been cancelled! I'd had a missed call from the hospital that morning but they didn't think to leave a message. I was a bit cross...

I'd taken DS2 with me as the hospital is half way to Kingston and I wanted to take him to get his new school shoes. It was nice to be out and about but I feel totally wiped out now.

Can I ask a question re pain relief? Do I just contact the GP about that? The in-hospital palliative care team prescribed me dihydrocodeine and oramorph but didn't give me anything to have at home. I still feel like I'm navigating this thing without a map. That was another upside of being in hospital, everything felt a bit more joined up.

How's everyone else doing?