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

She seriously doesn’t get it and never will. She’s always been emotionally immature at the best of times.

Hugs.
Sorry as well

@enigma53 must be something in the air. I was crying last night and this morning. I've god all these sores in my groin, I'm sleeping on a puppy pad to ,especially the blood off my skin. I booted the so called friends out of touch last cancer but know how you feel, just so tiresome to deal with.

You have them as well? Mines a massive leaking abbcess are you getting them dressed? The pain is horrendous the “back ground” morphine isn’t doing anything for me I don’t know how long it is supposed to take to work. Today I really feel like I’m on my way out. Stupid I know but this pain and relentless leaking. the weight loss and my awful colour I don’t see it reversing. Maybe I’m just panicking because I have a mri and ct next week and the immunotherapy starts Tuesday. I can’t help thinking it’s come too late ☹️

Fucking hell, this is all shit.

@Enigma52 you're right, nothing from Herbal in ages! Hopefully she's just got lost on the way here & found something much nicer to do!

I get you with the one thing a day thing. I did two yesterday & went to bed at 7pm 🙄. I need a sleep in between if there are two things to do!

I wish I could go at 7 and sleep right through but my cats won’t allow it! Sometimes I do look forward to popping a sleeping pill but I try not to take them too often.

nothing on the blooming telly tonight

I never sleep through - I wake up every few hours for a drink, or to pee, stroke whichever cat is curled up with me - then back to sleep 🤷‍♀️. I'm sort of used to it it's shit.

Do the sleeping pills help?

I'm watching Mary Berry on Food Network. Seen it a million times & she's nice and gentle on the ears 😊

Huge hugs. It’s shit what we have to endure, truly shit. Are you getting help with the sores?

@eachandeveryone apparently its the lymph fluid trying to escape, but bugger me they're tender. Currently have 6? open ones which get some sort of cream then viscopaste over the top. I'm losing weight too but it's because I'm not doing anything so am not hungry.

@enigma53 I have the district nurses in twice a week to thoroughly clean them as there are bits I just can't see.

Oops just realised the time better try get some sleep!

Mine comes every day as it needs packing. It runs like a tap when I stand up and so stingy

The district nurse came to see me on Friday and muttered something about power of attorney. I couldn't work out what she meant I thought she was asking me if I held power of attorney for someone else. I finally figured out that she meant did someone have power of attorney for me.
FFS communication skills amongst HCP are piss poor. I thought I was bad turns out I was a skilled communicator!
Anyway luckily I knew some information and I found a useful Sue Ryder site. Need to get the forms in as it can take up to 20 weeks for them to be registered.
I might write an advanced directive/care plan as well x

That does sound shit. Im
guessing it just isn’t healing? What’s the plan with it going forward?

Sorry to everyone going through such shit times right now.
I wish I could give you all a massive hug, even though in reality I know it wouldn't really help.

@Enigma53 Yes the chemo will continue until it stops working or the side effects become too much.

I've been out today, but it was slightly spoilt because I've had terrible diarrhoea and had to keep stopping to find a loo.
It's my own fault as I've been trying to up my fibre intake but nothing seemed to be happening so I've also been taking my lactulose.
Well today my poor intestines just couldn't cope with it all and well, let's just say it's been pretty bad.
My stomach is still hurting so I don't think it is quite over yet.

@GoldenDog1 yes I’ve had days like that. Nothing, nothing, nothing, bang.. where’s the loo!! I hope you feel better soon. I find bowel issues really tough to manage. It’s makes me stressed.
Hugs 🥰 I hope the side effects are manageable and you can keep going for a long while yet.

Still feeling like a crock of shit this end. Nystan seems to be doing precisely zero for my mouth pain.
Took our daughter to the station earlier and dropped into Nando’s for tea. Well you would have thought I was eating a vindaloo with extra chillies; pure torture! Had to wait until it was complete cold to eat. Ringing GP tomorrow. Massively fucked off now.

He said if the immunotherapy works it will go.

@Enigma53 Nystan took ages to work for me.
The upside was I loved the taste of it.
I hope your GP can prescribe something that will work quicker.
I'm sorry you are dealing with all this.

I've been on and off the loo half the night.
I was starting to get worried as I started passing blood, but I'm not surprised really considering how bad my guts were yesterday.
Tummy is a bit sore this morning, but I feel like it is calming down now.

I have a telephone appointment with my Oncologist later today. I expect it will be a quick call, because nothing has changed really.
I won't mention the toilet trouble as I'm pretty sure it's nothing to do with the chemo.
Today I will be eating food with less fibre and definitely no laxatives.

It's my week off chemo, the weather is looking beautiful all week but I'm at a bit of a loss with what to do with myself.
Maybe some quiet time in the garden.

Love to you all and big hugs ❤️

I can’t blooming beleive it my immunotherapy is booked tomorrow and the nurse has just rang to say I need an ecg but I have my dressings done at home in the morning. Why on earth have they left it so late on the day?

Wow, that is really late in the day!

I'm in wait mode til it's time to leave for my 7:30pm CT scan 🙄 . Earliest I'll be home is 9pm...🙄🙄

Because, of course, I couldn't possibly have an earlier appointment. Clearly the fucking machines! take the tea alarm very seriously & do not work through tea break 🤔🙄🙄

& of course, everyone has ignored my query as to why it absolutely must be so late (according to appts clerk) 🙄🙄🙄. I have queries for the people working in the dept since no-one else will answer me!

I’m fuming she hasn’t rang back I’ll have another restless night tonight. This really isn’t fair they’ve had weeks to sort it out and I have to wait for the district nurse in the morning.

good luck with your scan

I can’t see how it can all be fitted in @EachandEveryone what a cock up!

Exactly and I suspect my little hospital with the infusion suite won’t even do them. I don’t understand how my iPhone went straight to voicemail it’s not the first time this has happened when the hospital has rang. Still they have my landline and email address and the secretary at the infusion suite emailed the nurse to say I was in. Is it routine to have to have a ecg before immunotherapy starts? I’m guessing it is. I was at the big hospital today having a CT scan and could easily have had it there.Today. I’m fuming I don’t know what they are going to say tomorrow but I’m going nowhere until my dressings are done..

@Enigma54how are you? Xxx

Think I tagged the wrong account but how’re you going ?

@sellotapechicken still struggling with either oral thrush or oral mucositis. Bloody awful. Don’t know whether to phone hotline or GP tomorrow ( not that I can trust my GP to diagnose a cold!!) First sarcoma scan on 12th April. Fuck fuck fuckity fuck! 🤣

How are you? X

@EachandEveryone Well your dressings need chasing, that’s first and foremost. What time is your immunotherapy meant to be? Communication is shite in London too it seems? 🙈🙈🙈🙈