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

@mowly77 I can't shower for various tedious and complicated reasons so didn't know how I was going to get the hair off my shoulders! 🐺🌕

Oh @mowly77 I want to wave my magic wand and take it all away, but I can only offer goodies from the room of requirement. A celebrity hairdresser perhaps? My choice would be Guy Tang.

@LuciaPillson I am really impressed with your haircutting method. You are a genius. I used to be able to trim my fringe but since I had my eye removed my depth perception for things like that is hilariously shit 🤣

No it's definitely not unbearable at the moment. I have fatigue and vertigo and last week I had an emergency tooth extraction that still hurts. My NHS dentist is off on long term sick so getting an appointment with an emergency dentist was a right hoop jumping exercise. Tooth extraction is medieval (apart from the anaesthetic!)..

So far still alive.

Ways to stay sane? I used to meditate regularly but have fallen off the wagon since the summer. I spoke to my friend who has heart failure and her advice was to do what I want to, and to try and get one useful thing done each day.
I was also trying to be up and out of bed by 10am for Woman's hour but this week I've just not been able to do it. No idea why.

Have been having backaches for some weeks but suddenly it went up a whole bunch of notches and I've just had lower back pain so bad I was screaming and couldn't move. Had just taken painkillers and first dose is kicking in, also took extra codeine as soon as I could move my arm but what the FUCK. Maybe bad sleep positions in chair or bed, and hunching over using the wheeled walker (please make those things with adjustable to be taller handles, manufacturers) finally catching up to me? I used to have chronic back pain, just muscle spasms but could be very bad, maybe it's coming back... hope it isn't anything more serious. But very disabling if it continues, so I'm worried. Was honestly shocked by the intensity of the pain. Pf. Also I absolutely could not relax (made spasm worse) or meditate or do a mantra or anything except in tiny intervals between the pain, all I could really do is cry out and hold on and stay still and wait. Arrgh. Pissing arrgh! It's all so fucking stupid isn't it! 😅 Great solidarity to those of you in pain and many many hugs. 💜💗💙💖💛

So sorry @LuciaPillson , come on the Codeine.
I also prescribe milk of the poppy, Game of Thrones style.

@WrenNatsworthy Thank you. Codeine is behaving well, though now I've stupidly begun cooking as I need to, but it isn't a good back thing to do (that wasn't quite English was it).

Yes re haircuts I guess you don't want to be stabbing yourself in the head with scissors, not helpful!

Your friend's advice sounds really good! I try for a mix of "want to" and useful too. It's led to a lot of shopping....

Re GoT I rather fancy myself as Arya with a hit list as she looks so cool doing it but it's a lot of effort and then what about compassion and nonviolence... a bit of a stumper but I can't help feeling that regularly offing people must be so cathartic. What is wrong with me? 😂🤣

I think my mental state is less a side-effect of the Cape and more the general ongoing head-fuck that is knowing that I am dying, but actually feeling ok, and therefore this kind of oscillating between the denial that comes with not feeling ill and the twenty times a day that I remember I am going to die.

Also, as more time goes on I am finding it harder and sadder to deal with the hopelessness of it all. Normally, when bad stuff happens, once I've had a quick panic I tend to take a "what's the worst that could happen" approach and things feel instantly better. In this case the worst is clearly catastrophic and inescapable and that lack of hope, coupled with an ever-expanding list of things I can't do anymore and will never do again is really grinding me down.

Sorry for the pity party. Especially when you are all having a far worse time of it.

@LuciaPillson I hope your back is feeling better. If not, maybe you can get some alternative pain relief? When the palliative care nurse came to see me she explained that different causes of pain respond to different types of pain relief, so if the codeine isn't cutting it then maybe something else will help?

@WrenNatsworthy it's totally not fair to need to have a tooth extraction on top of everything else!

@mowly you really can't catch a break can you? DH and DS2 have both had an awful cold this week. Didn't bother testing so no idea if it was Covid but I've been keeping well away from them, just in case
Did you get any joy from the oncologist on Monday?

So happy we all have The Archers in common, and not just cancer. But bloody Rob! Seriously?

@TwigTheWonderKid never apologise for moaning, it's the mental health that is key, and when the physical is crapola as well it's hard to Pollyanna everything.

I swear I get panicky when I hear Rob's voice on TA!

Hope everyone is hanging in there... I'm going to leave some coffee, tea and herbal tea, some Boston Creme doughnuts and little Portuguese custard tarts (apologies to those who aren't fond of custard, will also add some jam doughnuts and plain glazed and the little cake ones with icing sugar) and some biscuits, let's see, the new Galaxy orange choc ones and some Borders dark choc gingers, maybe some Jammy Dodgers and Hobnobs in the thread, come and help yourselves!

@TwigTheWonderKid Yep the mindfuck, I cherish the more normal times when by some miracle no (or at least less) medical stuff is going on and then it's like I get a bit too comfortable and then it's all a shock again. Feh. But I agree with @WrenNatsworthy , never be sorry for throwing yourself a pity party, just have some good food and invite us all! However it's made me think of a new phrase to use on myself and from now on when I think I'm moaning a bit too much and need to get on with things I'm going to tell myself to pull up my pity panties! "Pull up your pity panties, bitch, and get to work!" Let's see how that goes. 😁

The codeine really is working for the moment but I have people to tell if it isn't. I managed to get out shopping this morning without dreadful repercussions, touch wood, so that's good!

Morning all, how are we doing?

I got a lift to and from DS1's university yesterday and took him out for lunch. It was so lovely to see him but he is clearly very worried about me. I really hoped being away would give him some respite from that, a bit of out of sight, out of mind" but it doesn't seem that way. When I left I though he wasn't ever going to stop hugging me

Anyone else here have older teenagers/young adults and if do, how are they coping and what kinds of conversations are you having with them?

Something about the 'dark time' between 7 and bedtime (10 or 1030 usually) where everything seems to hurt and Im half asleep. I think its the heating pad making me groggy :) Husband keeps finding my ice packs all over the house too.

Nothing new to report, my scan was cancelled because the machine broke down (at least they called me!) so that's put my scheduling back two weeks or so. I do get another bone injection next week and that has been helping a lot, but I will be calling the BCN tomorrow to make sure there is a big ol' PRIORITY slapped on that scan so its read before my oncology discussion otherwise we are looking at more delay. Im tired of having my life on hold for this crap.

Slowly increasing strength day by day with longer walks or pedaling on my floor cycle, but it just wipes me out by the evening. I know Im stronger than I was but not close to what I was last year at this time and thats really defeating some days. But I guess all you can do is keep trying

Someone asked for the stuffed aubergine recipe, its the Lebanese Stuffed Eggplant recipe here, though the tangine was pretty good too (and easier!). Most of her recipes are super tasty - the moqueca fish stew is a house favorite, and she has a chickpea curry sandwich/wrap filling that is super tasty for lunches:
https://www.feastingathome.com/eggplant-recipes/

I'm sorry about your scan being cancelled @HerbalRefreshmentt. I know what you mean about comparing fitness levels to how it was before, but like you I'm not giving up trying. Before I had my first immunotherapy in 2020 I was running every other day and I'd lost two stone. Tonight I dragged myself out to aqua aerobics for the first time in 2 weeks and am proud of myself.

@TwigTheWonderKid I have 15 nearly 16 year old DS. It's GCSE year. I tried to talk to him about what palliative care means but he won't even countenance the idea I might die because I beat the odds already. We will deal with it as I deteroriate I guess. I have been crying on DH about this tonight. He does cuddle up to me daily (mainly so I scratch his back!).

I had my second opinion today. Second Onc is an Ocular Melanoma specialist (there aren't many). He agreed that there's no point me having ablation on the lung tumours. There are too many. Thing about OM mets is that they are like lots of tiny spots that grow at different rates, and don't respond to chemotherapy. I can't have any more immunotherapy because of the side effects from last time. He said new trials might come up in about six months. I'm just waiting for the sword of damocles to fall and trying to have fun until it does I guess.

Huge loves to all.

How is everyone?
I saw my hospice nurse today. I got into my car and switched on Radio 4 just in time to catch a programme on funeral planning. It made me laugh out loud - cheers universe!

Thought I'd share. Please come back everyone. I want to know how you are.

Big nosebleed Monday when the nurse was here so she was painfully jamming her fingers up my nostril to try and stop it! She's given me some stuff to stick up there when it happens again. It's a side effect of the immunotherapy and I'm not a fan, it's not a delicate little trickle of blood it's Niagara Falls and I never know when it's going to burst forth. I haven't been prone to nosebleeds in the past and am not used to it!

Otherwise autumn is autumning and I'm just coming out of the worst bit of my chemo cycle so hopefully I'll be feeling a little more with it and get more things done, I've been feeling as if underwater the past few days.

@HerbalRefreshmentt Thanks for the recipe link. My aunt makes a similar middle eastern inspired aubergine dish. Could be Delia but I'm not sure. Well done with the exercise and same to @WrenNatsworthy. I just walk sometimes but have some indoor exercises to do and need to actually do them.

Hi all!

That's hilarious @WrenNatsworthy . I'm a big believer in gallows humour. It's the only way to go, I think.

Has anyone planned their funeral yet? I've got as far as 3 hours of music for my after party but not sure about the main event. Although I did have a wicked plan - I've told DH he must get married again and I thought it would be rather fun to have my ashes formed into a diamond and made into an engagement ring for the second Mrs Twig...

@LuciaPillson that nosebleed sounds spectacular and rather worrying. How lucky that the nurse was there with her fingers 😉

Apart from the bloody insomnia I'm having a good week. Have done lots of work and excited that DS1 is coming home for the weekend.

Got my fourth round of chemo on Tuesday and am supposed to have a scan after that which I'm dreading. Trying not to think about it but suspect that is the cause of the sleeplessness.

Laying here just doing some aimless scrolling. I'm in a comfortable position for 80 pct of my body and thats as good as it gets these days and yet I'm not ready to fall asleep. Today was definitely a rest day after getting a hair cut Tuesday and scan yesterday. BtW the district line going west at rush hour is full of dickbags who won't give up a seat for someone with a cane. I ended up finally taking the Piccadilly line out to hammersmith and swapping over, at least on the Piccadilly line I can prop myself up against those gross seats at the end of the carriage and its usually not busy (so long as its not a Heathrow train).

Stairs are really tough on me and of course every station I use has stairs only. I almost cried looking up at the mount everest of stairs at Parsons Green tube. And don't get me started on South K.

Tomorrow eye exam and then Monday I am also at the Marsden where there will be words about getting this radiotherapy done ASAP, tired of living like this. I called today to ensure a flag was placed on that scan result because so help me god I need that read for Monday. @mowly77 if you see someone with short choppy brown hair stomping about with a black cane,a Yoga with Babar tote and a pissed off look, stop and say hello lol.

I have certainly spent the last few years funeral music planning, its like the last greatest mix tape you'll ever make. But the practical stuff no, something to do maybe next year.

@LuciaPillson i keep tampons and pads in the house, despite being post menopause, for the absorbancy. Next time you have a bad nose bleed, whang a lillets up there and keep it packed. Had a doctor do that to me when I had an uncontrollable nosebleed as a kid, worked great!

Everyone doing funeral planning, is anyone doing something really scary and Gothic with Hallowe'eny decorations, an ancient church on a hill preferably overlooking Whitby or some such, thundering organ music....? Tim Curry officiating preferably.

Disgustingness ahead so do skip if squeamish: It's never just blood around here it's always shite as well, woke up with some back pain but also ostomy pouch blown up like the Hindenburg and had to gather some paper towels around me then let some gas out of the spout, then had deplorably smelly fingers and cleaned them with alcohol then wet wipe so could get up and take painkillers, now sat typing this to put off emptying pouch which will stink the fingers up all over again. If only the gas build up gave me the ability to fly, but we aren't allowed any fun apparently.

@TwigTheWonderKid Yes, the second Mrs Twig will always have you wrapped around her finger, that should prove a comfort to her 😁👻 What is that film where the man's late wife, wearing greenish makeup and being very sarcastic, is haunting him as he tries to create a life with his second wife? Wait let me google... ok it's Blithe Spirit (1945). Rex Harrison but not the one where he's the ghost. Kay Hammond plays the first wife Elvira and she seems to be having a great time hamming it up and making her character just as annoying as you'd be tempted to be under the circumstances. It's got Margaret Rutherford too who used to play an unconvincingly robust Miss Marple in some of the Agatha Christie films.

Scans I know, but what can you do, it's just another form of cunning mental torture they like to inflict. 😡 Hope you will be able to get some decent sleep regardless. Hugs.

@mowly77 Ohhh when you weren't around I was so hoping that it wasn't because you were very poorly. I'm so sorry you're having to endure this and am sending the best of virtual good energies... but wish you had something much more effective than that. Please do let us know how you're doing if you possibly can. BTW "I am so fucking sick" was exactly the phrase I used soon after dx and surgery, to a friend, when released from hospital. A mantra of sorts though not the inspiring kind I guess? 😂

I'm fairly sure I asked my late mum aloud a couple of days ago if she'd come and get me when the time comes! I don't know if people really grow out of wanting their mum and I think the childlike part of us perhaps doesn't go away entirely, we just kind of accrete an adult persona over the top. I don't think it's disturbing that you are wanting her, very natural. As an agnostic I have no formed opinion as to whether consciousness can survive death but if it did I think a lot of mums would want to check in with their kids! 1985, you must have been very young? Many hugs.

@HerbalRefreshmentt I don't use public transportation at all and am impressed that you do! May the dickbags who will not give you a seat be cursed with genital warts yea unto the 9th generation, may their grandmothers retroactively develop werewolfery, may their thumbs type random obscenities whilst texting, especially to their boss and colleagues, and may they never again taste a really satisfying stew (I'm now in winter cooking mode and made myself a nice soupy stewy thing with chicken mince and lots of root veg. So good).

I do have some pads in the house but had given no thought to tampons so I'll pick some up. Will try to find some little nostril sized junior ones. Nurse gave me a thick strip of some material that's supposed to help in a similar way but I like to over-prepare so tampons it is! Having gauze in the house, the kind without big holes in it, has been very helpful as well, similarly terrycloth towelling as it absorbs faster than paper products.

@mowly77 Cleaning unicorn is ok as long as it's a unicorn with a tiny stubby My Little Pony type of a horn because I need no impalements. I think I want something with hands though, don't really want ape or monkey so that narrows it down, cleaning raccoon maybe? Obviously a sparkly magical hardworking domestic lady raccoon, not just the average trash panda.

I hate that you're having to wake screaming in pain, do the hospice nurses possibly have any better drugs they can hand out? I'd suggest the local drug dealer but it could escalate and you don't want gang wars and such in your bedroom, plus, it would be expensive I suppose.

The one happy thing is that your closet is producing phantom clothing. Clothing fairy maybe? I have lots of hand me downs from friends and neighbours and have been buying stuff so some of my clothes are a tad unfamiliar but haven't found anything I straight up don't recognise.

Hello all, not sure which thread I belong on tbh, so feel free to kick me out if I'm in the wrong place.
I have BC recurrance in the same area as my BC lumpectomy 6 years ago and also now 2/3 spinal mets and a possible lung met. I've been told this week it's incurable and they are going for stabilisation only.
I am due to start Denosumab and Palbociclib next week. Is anyone here on this and can give me some real life experiences of it?
They now want to do a special biopsy on the lung met which has to be done at the QE in Birmingham and involves a general anesthetic. I've asked them what's the point of it if I now have bone cancer but getting no answers on that one so I think I'm going to turn it down.
I can't see how it will help and at the moment my breathing and lung function are totally normal. I can't see how sticking a great big needle all the way down there is going to help me at all.
I am considering asking for a private 2nd opinion at the Royal Marsden - has anyone done that and did it change your treatment?
Wishing you all the best weekend possible, at least the sun is out here in Welsh Borders.

Hello @Englishrosegarden :)

Yep you seem to be in the right place. Which is too bad but welcome! We have a variety of baked goods and a new cleaning raccoon.

I don't have any answers to your questions but I'm sure others on the thread will have.

Odd that they can't explain the reasons for the biopsy, they must have something in mind, maybe it's just for research purposes? No idea but if it won't benefit you it sounds as if you are right to turn it down.

Welsh borders sounds nice, do you have hilly scenery or is it flatter where you are?

Well, its breast cancer cells now in the bone and possibly the lung. I'd challenge that biopsy if you aren't having symptoms because if the palbo works (are they also doing fulvestrant or another AI like letrozole with that?) Itll show on the next scan and you have your answer without needing such an invasive, risky procedure. How large is the lung lesion? Anything under 3mm and in lower lobes is usually not cancer, usually caused by pollution or illness.

The only thing it could maybe do is change you from palbo to the other same drug (kisqali, I can't remember the official drug term, which does a bit better on lung mets) but honestly, its all much of a muchness at this point. Your proposed treatment is international gold standard first line for MBC, I'm not sure a second opinion would say much different.

I got about 2 years stable out of that combo, but started with a much higher tumor burden than you are facing. Some women go for 5+ years. It will likely cause low white cell counts and fatigue at the end of cycle, so be aware of that. Frankly it wasn't my easiest or favorite drug and didn't do a whole lot for me, but some folks do get really great response.

Oh, one more thing to add, they always start people at the highest dose and few can stick with it past the first month or two. Don't feel like you have to stay at that dose if you feel awful, it is just as effective at the two lower dosages.