Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

@EachandEveryone that is utterly ridiculous and worthy of complaint.

Bloody hell @EachandEveryone what a shambles! Are any of them getting anything right FFS?? 🤦‍♀️ Don’t blame you for wanting to get out pronto!

You see I’ve been a nurse for 25 years. I know exactly what goes on overnight especially somewhere like this the nurses are all half asleep this nurse is the one that got my thyroxine wrong and the past two shifts has said I refused oxycodin

Bad practice all round. I can’t believe how much we have to be our own advocates in this shit show. God help the poor sods who can’t speak up!

I’ve seen so many medical people now, been on the receiving end of so much negativity and lack of care, I’ve had enough! What happened to viewing the person as a human being and not just a patient! I’m so determined to get my second opinion now.

I’m due oxycodin every night at 8 no ifs or buts it’s prescribed yet she’s out I said no two nights running. There was no question to be asked it was not a choice as such.

Please do get a second opinion. Your treatment at the Christie has been absolutely despicable. You shouldn’t have to feel like it’s a fire fight just to be heard

I’d start a complaint at that. If it’s prescribed and prn you need to be offered it not lied about you saying no!

It wasn’t prn which makes it worse. It was a regular drug so there was no question whether I wanted it or not I should’ve just had it.

That’s absolutely disgusting

Yes I spoke to the matron today and the nurse is keeping out of the way.

Everything is set up for me to go home tomorrow. I have the same carer who was rubbish. 45 mins in the morning and 30 in the evening. I’m thinking of what she can do in 30 mins in the evening. At 530

How are we all?
I’m back from my appointment. Davros the sarcoma has grown a futher 1cm, but still contained to pelvis only . Breast cancer is fast asleep. Start the new chemo treatment ( oh fuck!) in 2 weeks. Kidney hanging on in there ( for now!)
Requested my second opinions. Not eligible for trials apparently, as I have two cancers. Radiotherapy a no, due to size and location.

That’s me 👍

I’ve spent 5 hours waiting for an ascitic drain to happen - they do it under ultrasound. Except it was never requested. Incompetence

so back home, still with ascites. Might just buy some maternity clothes and live with it.

Well that’s shit isn’t it.
Why wasn’t it requested?

I think too many different people involved
one for ward admission, one to order tests.

The ward physician associate has sorted it and I have a secure appointment tomorrow

Omg @RedRosesPinkLilies don't live with it! Ascites is one of the worst things I have ever put up with!! (I've seen that you're not, and I'm very glad you have a secure appointment tomorrow).

@EachandEveryone @sellotapechicken what's prn mean?

How are you both getting on?

@Enigma53 would you like to share my 🍷? Sounds like that sort of day.

All good here - nothing to report unless you want to hear about my work woes & concert bookings!

@EachandEveryone who do you want to see at Glasto? Still jealous - the lineup is epic!

Prn means Pro Re Nata or ‘as and when required’ as opposed to every 8 hours etc.

@lucysmam just hand me the bottle! I mean I’m on fucking anti biotics for a wee infection, but who cares! 🤷‍♀️🤷‍♀️🙄

@lucysmam i haven’t really thought about it who do you recommend? Deffo Alanis as she’s my uni era. And Neil Young as Only love can break your heart is probably one of my favourite ever songs. Rod for the fun and the fact that he has Ronny Wood playing with me all that music reminds me of my dad in the 70’s and then the other old group The Searchers are my mothers era and I always find the old groups are good fun especially in a smaller tent. Really I’m taking it easy. My mums already putting me off saying I won’t be safe with a mobility scooter. Really if I don’t hire one of them I’ll have no way of getting around.

Thanks @sellotapechicken !

@Enigma53 have a big one <passes wine>

@EachandEveryone The Other Stage Friday and Saturday line ups appeal to me. Alanis is my A Level ish era - she'd be fun I think. Gurriers on Woodsies on Sunday. Noah Kahan's in there somewhere too, and The Script. And I spotted Shed Seven, Chloe Slater and Wunderhorse somewhere in there. My lineup would feature terrible clashes! Very hard to pick and choose this year 🤔. Kind of wish we'd tried for tickets but didn't know the artists would appeal so much 🤷‍♀️. We're seeing a few of the artists at Transmt and have seen a fair few or have them booked elsewhere though.

@lucysmam gulp gulp gulp.. passed out hand more please! 🍷🍷🍷🍷🍷🍷🍷🍷🍾🍾🍾🍾🍾🍾🍾

passes 🙄

@lucysmam are you going to Pulp? I really thought they’d pop up somewhere. Clashes are awful. You should always try for tickets as there are always loads of bands on that appeal. I can’t go to En Vogue or Franz Ferdinand because of Alanis. I’m not bothered. About 1975 should I be?

im going to take a Zopiclone tonight as I won’t sleep otherwise. I can’t beleive I will be seeing my cats tomorrow!

We're not going to Pulp...maybe we should be 🤔. I like the 1975, I think they might tour next year. There are others I'd see over them though!

Enjoy seeing your cats; my big one's currently sniffing my feet 🙈🤣

Are you home @EachandEveryone ?

Yes!!! In bed. Can u believe nowhere did it tell me what drugs I’ve had today and I’m on loads. I had to ring up. And both controlled drugs say give 40mg and 5 mg good job I’m a nurse. Is that normal not to put the mls on the label?

it’s so good. I think I will use the trolley with the wheels on a lot 😀😀