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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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Original poster
mowly77 · 31/08/2023 14:01

Ah wasted trips & cancelled appointments - fun! Mm yes @TwigTheWonderKid I normally contact GP for pain relief as whenever I’ve been in hospital they haven’t sent any/much to go home with either. If you say the magic words “cancer pathway” and “stage IV cancer diagnosis, pain relief is urgent please” to GP reception you should be able to speak to GP same day/get prescription put in urgently that day to go pick up. Or at least, that works for me. My GP has separate prescribing team also. Otherwise they usually faff around/won’t give a same day phone appointment for GP if needed/ & then say it’s 72 hours to obtain a (repeat) prescription .

navigating without a map is perfectly put!

I have Margaret the borrowed cat asleep tucked into my left arm, it’s just before 9am here, I’ve only had about 5-6 hours sleep and that won’t do me at all. So I’ve taken a sleeping pill & am praying to get some more sleep in before DD starts really bouncing around after everyone else leaves for work. Much packing to do, boooo.

OP posts:
TwigTheWonderKid · 04/09/2023 07:42

Good morning everyone. Hope you are all doing ok.

Have had a fairly good week here, managed to take DSs to the cinema on Friday, crazy golf on Saturday and an escape room yesterday.

Today have got my rescheduled echocardiogram and then appointment with oncologist to see if tomorrow's chemo can go ahead. Wish me luck!

@mowly77 I hope your flight home was uneventful and as restful as possible. When does your DD go back to school?

Greyandrare123 · 04/09/2023 09:31

Hello Ive stage 4 triple positive breast cancer. Liver and bones. Im on the 3rd line Enhertu. 4 years of 'battling on' 'being brave' 'being an inspiration' have left me exhausted.
Generally I am doing well but I do have my moments. Last cycle I wasnt feeling great, low level nausea, off food and just meh. I was feeling so miserable I didnt eat or drink and then I was surprised when the GP told me the onc told him I had acute kidney injury due to dehydration! So Im drinking water now and no matter how I feel, its my priority.
This is how cancer affects me. Im so lucky I have no pain.

  1. I feel 'dull'. Cancer clouds everything
  2. Ive given up planning. I was meant to go to a wedding Sat then I decided Wed I didnt have the energy to last the night.
  3. Things get overwhelming very quickly. I work 2 days a week and although a distraction, its overwhelming.
  4. I like being in nature. Fields, woods, parks . I just meander around.
  5. I feel isolated
  6. Joining FB bc groups hasnt helped me unless they are about side effects.
  7. I feel muderous when slebs tell me my cancer could have been prevented with a better diet.
  8. Most of my friends are tumbleweed. They want to hear I am ok and then move the convo on. I dont have the energy to go for coffee on their terms even tho I am part time. Ive maybe 2 friends and my inlaws do appear to care.
  9. Hearing constantly about peoples holidays over the summer was irritating
10. Im a sort of carer for my 89yr old mum. Its a one way befriending situation. 11. I want a dog..my dog was PTS aged 12 3 weeks before I was diagnosed and I miss the big lug so much. 12. I feel like I am semi existing.

I am also disabled from the bone involvement. Crooked spine, kyphosis, head not on shoulders straight.

Thats me!

TwigTheWonderKid · 04/09/2023 17:27

Hi @Greyandrare123 and welcome. This is definitely the place to have a good moan.

I can relate to many of your points. I think most of it for me can be summed up by the feeling that your life is not your own any more (can't plan, never know what's coming next and frankly this life bears no resemblance to what our lives are supposed to look like) and a feeling of "separateness" from the normal world (I have done much swearing at people's holiday photos FB) I'm very lucky that I have some amazingly supportive friends but they still get to go back to their happy, normal lives.

Is there no way you could get another dog?

Original poster
mowly77 · 04/09/2023 17:36

Hey @Greyandrare123 I can relate to so much of that, particularly the tumbleweed of friends. I have no energy for that. Most of my family are the same. I think they genuinely don’t understand how dreadful I feel as I look semi-okay most of the time. And I am so fed up of telling people how sick I am — it bores me, it bores them. You are absolutely right, they just want to hear you are ok & then move on to moaning about their problems which seem so utterly insignificant to me now that I have no mental space or energy for them.

@TwigTheWonderKid glad you’ve had a semi ok few days. Sounds totally action-packed to me! Good luck for your appointments and hope you can get your chemo tomorrow.

The transatlantic trip has broken me, even though the actual flight itself was ok. DD watched a film & got a few hours sleep; I dosed myself up on Valium and dozed a bit. But my energy is drained now & I’m very ill. DD went back to school this morning in a state of high excitement! Bless her. I was too ill to get up with her (she woke up so excited and so early) and too ill to take her to school myself and I’m just broken about that. Just misery on top of misery. She didn’t mind, her dad took her and she was so happy to be seeing her friends. But I did.

I've been at the Marsden all day getting Cape sorted and still waiting for the pharmacy — and a 2hr+ drive back home to come. So I don’t know what sort of day she’s had in the end. Want to lay down and die, frankly, I’m so so fed up.

OP posts:
TwigTheWonderKid · 04/09/2023 22:47

Oh @mowly77 I'm sorry you are feeling so shit. That was me a couple of weeks ago, totally unable to celebrate DS1's A level results and feeling so bloody awful I didn't even have the energy to care or feel bad about it. I've had a few really good days but my pain is back this evening and then I panic that this is it and I'm just going to get worse and worse and not have any good days again.

Which Marsden are you at, Chelsea or Sutton?

Original poster
mowly77 · 05/09/2023 13:22

Chelsea. I’ve been put on 1800 of Cape - 1 week on / one week off because I wanted to go slow. It was nice to be listened to immediately. I’ve just taken my first dose. Yikes. My sleep is so messed up. I was awake between 2-3am but somehow have only just woken up again?? I took a sleeping pill around 3am but they never last that long so I must be mega tired. Or it’s just … the cancer … which is worrisome. Horrible night sweats and nightmares. Oh, onc also gave me some more oxycodone, but I realised when I picked it up was slow-release sort not instant release. I shall have to crush it like the folks in Dopesick/Painkiller. I shall try not to snort it however. Or OD in a parking lot.

My number one complaint however is … constipation!! My god. I took double the laxative dose last night … nothing. I’m so uncomfortable & I dare not take any more morphine. Pray for me, pray for my poop.

I hope everyone else is doing ok? If anyone else would like to list their complaints that would be most welcome. Or indeed their joys! Maybe you’re all full of joys!

OP posts:
TwigTheWonderKid · 06/09/2023 19:05

Hi @mowly77 have you had a satisfying and comfortable poop yet?! I have quite the opposite problem right now.

I'm sorry you have such a mission to get to the Marsden, that must be exhausting. I'm really fortunate that the Marsden has an "outpost" at my local hospital in Kingston.

Had my second Oxaliplatin yesterday. Got there at 10am, went home at 5pm. Started the infusion at 11.45 which they did over three hours this time in an attempt to reduce the side effects from last time. Was fine all the way through but when they did the flush the double vision started again. Not as scary as last time as I knew it had resolved itself last time, but then I lost control of my tongue and my jaw kind of locked, didn't last long but was very strange. Then I stood up to go to the loo and kind of lost control of my feet as they went into painless spasms.

All fine today, except half an hour of dropping eyelid. All very strange.

Started the Capecitabine last night, 2500mg twice a day for 2 weeks. Week off then it ( hopefully) all starts again.

Had a visit from a lovely palliative care nurse from our local hospice this morning. So nice to finally talk to someone who is interested in all of me and who can coordinate my care.

TwigTheWonderKid · 06/09/2023 22:51

Sorry 1300mg not 2500!

LuciaPillson · 10/09/2023 00:23

Poking my nose in.

Just a bad day emotionally. After a week of back to back appointments was really looking forward to a weekend of trying to get the filthy messy chaotic flat sorted. Then the emotions hit. Have done a little of the chores but not what I'd planned. Just kind of out of steam and having that disorientating fear feeling. Also tired of course always. Feeling very alone today.

Re listening to other people's problems, I'm a bit the opposite actually, I like to hear them. People will stop themselves and say "but it's nothing compared to what you're going through," and then maybe they won't tell me anything and I'm cut off from conversation and sharing. I don't mind even listening to people's trivial worries really as I also get upset about trivial things. It's also a much needed break from being in my own head.

Original poster
mowly77 · 10/09/2023 00:33

Hi @TwigTheWonderKid , how are ya doing? The weirdness during the chemo sounds quite horrible, yet familiar. I had a reaction to Paclitaxel once, similar, and I was suddenly surrounded by staff with crash kit, quite ... intense.
The absolute length of time for the infusion also, what a day out! How often do you have it, and is there an end point, or is it ongoing? - sorry I can't remember if you've said in a previous post!

As for me, the poop is resolved but unfortunately I had a horrific reaction to the Cape yesterday, & so I've stopped it. I spent all day & night Friday up to 5am wondering if I was having a heart attack & I should call 999 (but as the NHS here are an utter joke & I have PTSD from my ED stay last year I was loathe to do that) or instead the worst heartburn anyone has ever experienced in the known universe. Pain radiating down left arm as well & chest & vomiting, unfortunately symptoms of heart attack and heartburn in women seem to be identical but I did settle on 'likely to be gastric-related' in the end & now II'm scared to eat anything!

Starting to come back to life this evening & have done some pottering. I've been in bed since Tuesday anyway as I felt so horrific after trans atlantic flight, Marsden & then nausea from Cape. Totally missed DD's first week in year 1 at school, was completely gutted. But she's had a great week & DH has been amazing. Thank goodness for these mercies and victories. We live by the sea so they've also been swimming every night with some little friends so she's really living her best life & coming into her own & that makes me very happy.

Will get through to the Marsden as a matter of urgency to get some advice on Monday as its clinic day & the good prof & his team will be there.

I hope everyone else is doing as ok as they can be x

OP posts:
Original poster
mowly77 · 10/09/2023 00:57
Cat Book GIF

I feel you on the emotions @LuciaPillson . 'Disorientating fear' is exactly right. It's so hard to get out of my own head too. Do you live alone?
Even though I live with my family I feel very alone at certain moments. I am not living in the regular world, I am isolated in cancerland,TM it creeps up.

I think OPP - well it depends on the person! I know one school mum who's a moany cow all the time about bloody everything & my instant reaction is fuck off with that - but then again she's menopausal, as am I, sort of get it. I still like talking to people about trivial things to get my mind off impending death. Having play dates with nice friends& talking shite, chewin' the fat, shootin 'the breeze. My brain seems to fill up with celebrity gossip, deep dives, Tik Tok theorys and I think my god, I could have READ SO MANY BOOKS I USED TO READ SO MANY BOOKS.

🤕🤒SHALL WE START A BOOK CLUB?!! A FUN ONE - NOT ABOUT CANCER!?????

i Always wanted to be in a book group,

OP posts:
HerbalRefreshmentt · 10/09/2023 07:49

@mowly77 there is a very rare side effect to Cape that manifests in the first week or so (if its gonna show up) - coronary vasospasm where it feels like a heart attack but isn't. Did you call this in? I wouldn't take Cape again until this gets checked out. I hope it was just heartburn though!

Best try a stool softener alongside the laxatives too - I know from bitter bitter experience that is the better way to go. Cape can also cause insomnia (I want to find the cancer drug that doesn't), I seem to wake up every 2 hours, unless Ive taken a little hit of the liquid morphine and then sometimes I can achieve up to four hours! Ugh - usually it all piles up until I take a big nap one day and sleep everything off.

@TwigTheWonderKid you must live down nearish me, I headed to Kingston as my localish hospital when I had the blood clot, though I dont attend the Marsden outpost there as my oncologist only does Chelsea and Sutton. Ive always wondered at the Sutton site, like is it super big and clean and not the rat run like Chelsea? But its much further for me to travel so I stick with Chelsea.

Still limping along on this dumb hip although my rads initial appt is Tuesday morning where I should know more/plan of attack. So so tired of being stuck at home and bored - I can only manage up to 15 minutes walking at a time before everything gets to be too much. I did start some herbs in small self watering boxes so thats been positive and I even talk to them in the morning like King Charles.

Ive been reading an interesting book on the Oregon Trail which is part travelogue, part history lesson, part some guys therapy (I guess? I really dont care about his relationship with his father, but its fairly minimal) - the author and his brother bought, refurbished, and drove a covered wagon down the old trail etc. Rinker Buck is the author (what a name!), and I think he may have done something similar on a wood raft down the Mississippi river, based on my Amazon search.

Not gonna lie, I read Twilight saga the week I was in the hospital. And Im really invested in the Jonas/Turner divorce lol. Probably time to pick up that embroidery I was meaning to learn.

TwigTheWonderKid · 10/09/2023 09:14

@mowly77 that sounds very scary. I was told if I had any heart attack-like symptoms I needed to call an ambulance straight away. But I can't remember if that was for the Cape or the Oxaliplatin... Hope you get some answers tomorrow.

Right now I'm not feeling too bad some gastric Cape side effects starting and I'm wide awake for an hour or so in the middle of the night. Really, really hoping it doesn't get worse. DS1 is off to university next weekend and I really, really want to be able to go with him. I'm not even dead yet but it's unexpectedly shit not being able to be fully-present for our kids now, isn't it?

@HerbalRefreshmentt I'm in Raynes Park, what about you? I had my radiotherapy for last year's breast cancer at the Marsden in Sutton. It is indeed big and the radiotherapy department is lovely. I was also amazed that the car park was big enough. I've never been experienced that at a hospital! I'd never drive myself to Kingston; parking is impossible.

Happy to join an undemanding book club. Or maybe it should be demanding? Feel like I've let my brain completely go. When I was in hospital the other week I read some dreadful "cosy" murder mysteries and since being home I have binge- watched some utter tripe (including the whole is Season 5 of Virgin River in a day...) I think I need an intervention...

@LuciaPillson I hope you are feeling a bit better. It's so frustrating to want to do stuff and not be able to. I'm trying to get my DS's stuff together for uni but can only manage 10 minute bursts. I really don't think the 33° heat is helping either.

LuciaPillson · 10/09/2023 13:34

@mowly77 Yep, just me taking care of me over here. I can't read specific books for discussion, too much effort but will be very happy if I find time to read some of the library books I just took out or the books from our sharing library in my building.

@TwigTheWonderKid Thank you! Woke up with back pain and tiredness, have taken codeine, just want to try to clean out fridge a bit more before doing a little shop with my trusty walker but so unsure as to whether I can do any of it! Floors horribly dirty as well. Ostomy also being weird as it tends to be if it thinks I want to go out and do anything.

@HerbalRefreshmentt Rinker Buck sounds backwards I think! But a quick google says his first name is actually Charles. As for Twilight I occasionally watch bits of the films as they manage to be slightly less alarmingly bonkers than the books.... I like the Pacific northwest scenery and some of the music, I like paranormal and YA fiction but the Twilight series has its issues. Quite good comfort viewing/reading though.

Original poster
mowly77 · 11/09/2023 00:36

@HerbalRefreshmentt ha I loved the Twilight books, must have read them in my early 30s so maybe when they came out roughly. I also know absolutely everything about the Turner/Jonas divorce! Aghhh. And if I see one more clip
of either Beyonce or Taylor on Tik Tok my brain may melt.

so yeah I feel like I need an intervention, entertainment wise.

I like the idea of not a formal book club but we share our attempts at using what little is left of our brain cells. it was v interesting to hear about your Oregon Trail book, I am fascinated by that historical period! I’ve started the new Anne Patchett that I bought stateside & it’s as good as all her stuff but my brain is like oh a book no thanks.

Re: the heart stuff I sat next to the onc at the computer blithely chatting away about the tech not working & the usual shit as I signed the consent form & he rattled through the coronary bit on Monday - then by Friday afternoon I was like oh shit it’s happening. Gotta laugh at life really. I’ll call it it in tomorrow — & I have certainly been too terrified to go near those drugs again. Great start, F, just great.

OP posts:
Original poster
mowly77 · 11/09/2023 00:46

@TwigTheWonderKid i also eyeing up Virgin River 👀 I am a few seasons behind so even more garbage to watch,

insomnia: always. Can’t remember the last time I didn’t take a sleeping pill; either OTC or prescription at night. I think my sleep
Is truly broken.

I'm not even dead yet but it's unexpectedly shit not being able to be fully-present for our kids now, isn't it?

you got that spot on. Wah. But I was able to show up today & we played endlessly (Ken and Tigger had a big party) then watched the Little Mermaid. I still haven’t the strength to leave the house and god no not in this heat but I’m chalking today up as a win. We show up when we are able to and we do our very very best. Fingers crossed you can help your son with uni and take him there too, such a big exciting transition for him.

thinking of you all x

OP posts:
TwigTheWonderKid · 11/09/2023 10:25

We show up when we are able to and we do our very very best.

Thanks for reminding me of that @mowly77 , I guess I feel like my best isn't quite good enough but you are right.

Please let us know how you get on with oncologist today.

LuciaPillson · 11/09/2023 14:09

Big Monday hugs to all the totterers 🤗

Original poster
mowly77 · 11/09/2023 22:13

Thank you for the Monday hugs, I needed them. Like the word ‘totterers’ too! I’ve got so much to do but all I can do is sleep. I think I frightened the Tesco delivery man when I answered the door at 2pm in nightdress, eye mask askew on my head & declared “I’m not very well!” as an opening gambit. After ascertaining it wasn’t Covid however he did carry it into the kitchen for me.

Well I’ve got the schlep back to the Marsden this Friday for a CT scan (that’s a record-breaking one a month for three months now); blood tests; & an ECG before any decision about continuing Cape is made. Predictable, a pain in the arse, but good it’s being checked out. I was steeling myself to eat breakfast & try taking them again but I’m glad not to have to do that. In fact if they clear me to take them again I’m going to take them whilst sitting in the hospital so if the ridiculousness starts up anew they can admit me / do something about it because I’m not really up for a repeat of My Night Of Hell: Should I Call 999 Or Not?

I’ve had a hospital bag packed since that night sad to say. But one piece of admin out of the way!

I am a bit 😮about being unmedicated for the actual cancer now for a month though.

And I foolishly told work I could start again this week. Slightly regretting that now but it will engage my brain & DD is at school …

As for our reading club, I skimmed a few bits from The Spectator in the hammock for about 10 minutes before it got too dark so gold star for me I feel … I only subscribed to it because they had a great column by Jeremy Clarke who had cancer & lived in France. But he’s dead now. Might offer to replace him.

OP posts:
Original poster
mowly77 · 11/09/2023 22:23

& let us know how your rads appt goes tomorrow @HerbalRefreshmentt if you are inclined to.

OP posts:
TwigTheWonderKid · 11/09/2023 22:45

Did you tell the Tesco delivery man what is wrong with you @mowly77 ? I ended up telling the Sainsbury's delivery man on Saturday as I had to shout for DH to deal with the frozen and fridge stuff (can't touch anything cold because of the Oxaliplatin). The other day I also told the lovely man in our local kebab shop (had a massive craving for a lamb shish kebab) that I am dying. It's odd, isn't it when people you see like that ask you how you are, expecting the usual "I'm fine"? response, which sometimes I give but sometimes I just think fuck it I'm got to tell the truth.

Glad they are checking you out properly before more Cape. I've started taking my hospital bag with me to all my appointments now, since my 2 surprise admissions.

Good luck going back to work. Assume you are WFH? What do you do?

I have failed to do anything more edifying than scrolling through crap on my phone today. Well done for having a go at The Spectator.

Thanks also for the hug@LuciaPillson and hope all goes well tomorrow @HerbalRefreshmentt.

Original poster
mowly77 · 11/09/2023 23:07

I didn’t @TwigTheWonderKid but when he left he said “I hope you feel better soon” & I was so tempted to say “I won’t! I’ve got incurable cancer!” especially after he had to just awkwardly stand there in the kitchen as I speed-emptied the boxes trying not to flash my minge.

I tell people should they ask, however, mmm it’s a real conversation stopper isn’t it. I never lie I also just cannot be arsed! Why should we lie anyway? It’s not our bloody fault!

yes I work from home mainly WFB (Working From Bed). I’m an editor so easy to do it whenever I feel well enough/ around school hours. Although sometimes … deadlines. It’s a weekly cycle & I have tried to install in the team I can only work 2 days across Monday - Wednesday because I need the head space, not a small drip feed of work every day with increased franticness by Fridays.

I have been a journalist all my career but my brain don’t work so good to make words from scratch now. I write sometimes if the mood takes me. I would love to do more writing & envisaged I’d be doing that now DD is firmly in school but, whoops, dying.

OP posts:
LuciaPillson · 12/09/2023 02:43

Lmao at everyone shouting at everyone that they're dying - or wanting to. I'm at the point where I can't tell whether I just imagine myself doing this or actually do it. I feel like it could become my go-to defence in all arguments though - "Well I'm DYING of CANCER! So THERE!"
That oughta shut 'em up. 😂🤣

@mowly77 The almost minge flashing in the kitchen with the awkward Tesco man has seared an indelible image on my brain so thanks for that!

A kind relative came yesterday to help me with shopping and getting rubbish downstairs. I was far too weak to manage it on my own and greatly appreciated the help. However she's gone off with my recycling bags which is making me mutter a bit!

I read a Young Adult or kids fantasy book about an alternative Victorian London where a bizarre family rules the "heaps" of discarded items and each member of the family carries about a birth object which holds a strange secret... and then it all begins to go wrong. Quite reminiscent of Mervyn Peake I thought. It's called Heap House and has two sequels.

Thinblueglass · 12/09/2023 03:06

Just jumping in with my intro.

I got 14 years between initial diagnosis (stage 3b) and recurrence at age 60 (in 2021). So long enough for my DD to finish secondary school, an engineering degree and a couple of years in the workforce.

I was initially treated for er+, pr+ seemingly successfully. It took more than 6 months to have the recurrence diagnosed as I had the symptoms of gall bladder disease but nothing showing on ultrasound. Once I got the sh*ts with the messing about and got a CT done privately, it was clear what was going on. It has come back as TN and spread to bones, liver, lungs and brain.

I live in Melbourne Australia and have kind of used bits of the private and public systems to get to where I am now - which is in the public health (Medicare) at one of the primary cancer research hospitals (Peter Macallum Institute). I’ve been able to access two stage 3 drug trials, one of which delivered more than 2 years progression free and focused on PIK3 inhibitors (Piqray) This just failed in the last two months, so am now waiting to see if I qualify for a stage 1 trial which will include Enhertu. I am her2 low but Australia doesn’t give her2 low patients subsidised access to Enhertu, so this is the only way I can access it. Won’t know for another couple of week whether I qualify.

Pain management is via the Palliative Care team atPeter Mac and they have been pretty good, I struggle with the idea that I need increasing doses of opioids to function so have ended up at A&E a couple of time with uncontrolled pain.

I had been self employed for a few years prior to recurrence and was making a comfortable living with a mortgage free house and some pension money put aside. The house was getting too big and empty, so I sold up and am living with my daughter and her family (her partner and their two girls 3 and 5. With only one child the idea is to merge finances to relieve some of their mortgage pressure and give me a space which is smaller, private but still connected with people. Trying not to make my daughter my carer, and the pension money I put aside will help buy in support when I need it.

Like all of you there have been both hairy and hilarious moments that only a dark sense of humour can get me through. Thanks for listening.