Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

Does your g.p not have a stable of unicorns delivering meds at a moment's notice?? 🦄😏

@Florsilvestredelcampo of course that’s available to me…I declined just to be difficult 🤣🤣🤣

How is everyone?

@LuciaPillson and @balkanscot we haven't heard from you for a while, how are you doing?

Apart from changing meds, I was told to eat a low residue diet because my bowel is all stuck together by cancer. So I’m prone to bowel obstruction
Anyone else having to do this - any advice?
xx

@RedRosesPinkLilies I've done low residue before due to Crohns disease I be honest it's something I 've struggled with because it's a full method of eating. I used to call it the white diet because it white starchy food that doesn't challenge the bowel. If you look at the Crohns and Colitis UK site they may have more advice about a low residue diet.

Always proof read before hitting send I ment its a DULL way to eat

@Florsilvestredelcampo thank you. Yes it does seem to be exactly the way I don’t want to eat. Does probably explain why I go around looking pregnant most of the time as my bowel bloats so easily.
I need to get som indomitable pants to flatten it! 😂

@Florsilvestredelcampo think I’m right in this - have you started your chemo yet?
I’m deemed platinum resistant- so my options are mainly the oestrogen blocker tablets.
Down the line I may get weekly carboplatin/ paclitaxel chemo - but to be honest if it comes to that I think they’ll be suggesting I don’t do that.
Have also been referred to MacMillan nurses, which was a bit too real.

I don’t really know how oncologists do their job. It’s bad enough when you’re facing this head on once in your life. But to be reminded daily that young and relatively young otherwise healthy people, can be so struck down by such awful illness, must be very very sobering.

edited to add commas!!! Hope I got them right.

I'm still waiting to hear about when my chemo will start my oncologist wanted me to start this week. He was very keen for me to have 2 cycles then he would delay cycle 3 so that we could go on our holiday. But I guess what he wants and what actually happens is very different. There is no point in me trying to phone the hospital today because the phone lines will be completely jammed. I did phone the cancer nurses on Friday so maybe they will get back today.
I've never experienced these type of delays before and It keeps popping into my mind that maybe this is normal when your this far down the treatment track.
Our planed holiday is to Scotland (not as far North as you) and I'm terrified of not being able to go because it would break my sons heart. He is obsessed with Calmac ferries and already had our route mapped out so if you need to know the times of the Taynish to Mull ferry he's your man!
I had adhesions in my bowel before and it's not nice I had surgery and a bowel resection is that an option? (As I write that I realise it may come over as the kind of unsolicited advice I hate, but I'm sharing my lived experience so that's the difference I hope!)
I used to eat a lot of fish and rice but always ended up craving veg and fruit. The advice always used to be not to do it for too long, as low residue is so low in nutrients,two weeks and then slowly reintroduce more fibrous food to see how you manage
I hope you manage to get your meds sorted out x

@Florsilvestredelcampo I've also wondered whether being incurable means other patients are prioritised. Certainly my experience when I had breast cancer 2 years ago was totally different. I felt well treated medically and emotionally. Don't feel like that with this cancer.

@TwigTheWonderKid I really hoping that someone would come on here and tell me that I was being paranoid. But as we approach the end of another working day I'm beginning to draw my own conclusions

@Florsilvestredelcampo that’s useful information about the low residue diet. I think I’m going to take the diet as advice, but not necessarily religiously follow it.

Sorry you’ve not heard yet. I wonder the same a bit as there seemed less hurry to get in touch with me this time (only after my husband actually emailed the hospital). Also, although I’m not on letrozole there was talk of not continuing with active treatment in time.
I know they know our prognosis but they don’t need to rub it in.

If you don’t hear soon will you contact the hospital?

I've just spoken to one of the cancer nurses who has reassured me that they are chasing it up x

It's interesting about being treated differently once classed as incurable. I no longer have access to the breast care nurses, everything is via my oncologist. He's just been on holiday for 3 weeks with no named cover, only the oncology registrars, whoever they may be. I'm still waiting for my April CT scan to be compared with the previous one, rather than the one before that. It's now so late I may as well wait for the next one.

I feel relatively well cared for, but haven't had to call on emergency or critical help (yet) and am presenting as quite well, for now. I might ask my oncologist what to do if/when that changes.

I'm so sorry for those of you struggling to get the care/advice/support you need. It's truly shit and I have no wisdom or advice that might help xx

Good evening everyone.
Hope you are all as well as you can be with this shit disease.

I'm booked in for a CT scan on the 21st. I honestly can't believe it has come round all ready. Time is going far too quick for my liking.

I've been suffering with headaches and pressure in my head behind my ears which is also causing earache.
I'm trying not to think the worst and just hoping that it is just stress after what has been an emotional and difficult few weeks.
Someone is coming to see me about it tomorrow while I'm having chemo so we will see what they say.

Hope you all have a lovely evening.

@Florsilvestredelcampo I was good with feeling cared for up until last summer. Then something weird happened - I dont know if it was a senior management change at my hospital or they lost a lot of nurses all of a sudden or what but since then Ive felt treated but not cared for, if you see what I mean? And that was really evident over the winter when I had a bunch of issues that had my onc been paying attention and everyone else doing their jobs they wouldnt have gotten as far down the path as they did. And my onc only does MBC so its not like she has a bunch of early stage folks to deal with too.

Its started to get a bit better with some new faces and new procedures Ive noticed but its very hard to trust again that they have your back when you are in pain and want answers/action to ease your mind and stress and to them its like the 700th bleep of the day and they have 40 other things to get to first. I dont know what the answer is, but it really doesnt help!

@SewingBees What is the point of quarterly scans if they cant be read in time?! And I know our oncologists deserve a break too, but no one to call and ask otherwise, man. Try not to worry too much about the treatment not working, assume it is until told otherwise!

Started my second cycle of Abraxane yesterday and Im already bored of this crap. Also I NEED this lymph clinic appt moved up for this leg, onc looked like she would get involved if the nurse cant get a better date (no way will she manage it). My PT/osteo can do lymph massage so maybe he can help me out Thursday to tide me over. Again - quality of life impacted by lack of NHS resources and poor listening skills (Id been reporting this since I was in the hospital/early May)

Another day no news this feels so wrong and nothing like I have experienced before.Physically I feel well but I'm imagining cancer invading organs and spreading while I'm sat twiddling my thumbs!
In a effort to chase away the scaries i've been listening to Kicking back with the cardifians on BBC sounds. Charlotte Church interviews her family and close friends. It's very frank and they all use some very expressive language, so don't listen if impressionable people are near. C.C's dad talks very frankly about living with a terminal diagnosis, sounds like a busman's holiday but it's really not x

I can't really say I've felt too much of a difference in the way I've been treated since recieving my terminal diagnosis.
This is probably because I was treated appallingly before it.

Nobody came to see me yesterday about my head and ear pain, they were "too busy" apparently just as they were "too busy" the day before.
I could tell the nurses were pissed off with them and they've told me to ring the help line so that they will have to see me.
I'm not going to though (as long as it doesn't become unbearable) because to be honest I'm tired of chasing everything.
I have an appointment next week with my Oncologist so I'll see what he says.

Sorry I sound so pissed off but I am pissed off.
I feel stressed and tired of it all at this point which in reality is probably what is causing my head & ear problems but the not knowing the cause adds to the stress and anxiety.

It's like trying to get the ultra sound scan for this bloody awful lump in my stomach. They just won't do it so I'm still anxious about that.
I give up with my care and I'm trying to accept that I'm receiving the bare minimum.

I’m so sorry @GoldenDog1 - I want to send you a virtual hug, flowers, chocolate, wine…anything that will make you feel better- in your mood (not necessarily physically).
Lots of love from Scotland xxxxx

@GoldenDog1 I'm so sorry to hear what you're going through. It is shit and you are right to be pissed off, no need to apologise xx

@RedRosesPinkLilies & @TwigTheWonderKid thank you.
I do try to be as positive as possible but when you are constantly chasing up things or being ignored it is hard at times to not feel down about it all.

Anyways I hope you are all doing OK .

@WrenNatsworthy are you OK as not seen any posts from you for a while?

Sorry it's been ages. Been up and down. HB result was 100 on Monday so no transfusion Tuesday. I was feeling ok but today no appetite, felt sick, tummy pains and tearful when not asleep. I have a transfusion booked for next Wednesday.

Sorry things are so shitty @GoldenDog1 . Holding your hand weakly.

Sorry to hear you are not doing so well @WrenNatsworthy.
I really hope things improve for you.

Thank you for the hand hold, it's needed and appreciated and I'm offering you a hand hold right back & anyone else who needs one xxx

I used to work with someone who would describe tough times ,as like wading through treacle backwards with wellyboots on. That's what cancer treatment feels like although the treacle feels more like shit.
This is the place we all understand that and we are all here for each other when needed.
I'm going into the for my pre treatment blood test today I don't have a date for the actual treatment but hopefully they will find a broom cupboard for me next week!

I'm sorry to hear that we are all feeling overwhelmed. I cried hysterically last night because I came up to bed and DS1 was in the bathroom so I had to go back downstairs to have a wee. I felt like a toddler! I'd had quite a wobbly day, not helped by several friends sending me messages to 'stay positive", my abdomen is so full of tumours I can't get comfortable and I'm so scared my bloods will be rubbish again and Monday's chemo will be cancelled again.

@WrenNatsworthy and @GoldenDog1 big hugs to you both.

Fingers crossed for you @Florsilvestredelcampo