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

Daphne just wondering if it’s me or not

🥳 yay! How are the cats?

I'd hope the drugs are labelled with "idiot proof" labels...are they not??

Well done @EachandEveryone glad you are home! Get the medical marujana ordered, that’s what I’m doing. To work alongside the pharmaceutical drugs!

I have done

one of the cats is missing i haven’t seen him all day and still not home.

How is everyone? I’m having bloods done in clinic before I go home with my chemo pump

Chemo pump??
I mean fair enough if it’s a cannabis pump! 🤣

Yeah living my best live with my ever growing unwanted fuckwit sar-fucking- coma. Chemo 2 starts in 2 weeks. I’ll be stoned for the duration!

Yeah it’s like a little jar with a bag in it and it constantly infuses until the district nurses come and disconnect me in 3 days. Bit weird but it’s nice to be home!

have you got an appointment with the weed people? 😊

I honestly can’t remember what I’ve posted recently
In hospital overnight having fluid drained off my abdomen
Came in on Tuesday- waited 5 hours - and was told the procedure hadn’t been ordered. Physician’s Assistant couldn’t say when the ultrasound would be.

Then she booked one for the very next day. When I came back on Wednesday for a definite appointment the nurses kept asking why I’d left the day previously. Felt like I’d taken discharge against medical advice.

Still here. Drain not doing much, but they want me to persist with it.

Next chemo is pretty much my last option.
Starting to try and prepare my family - get them to be realistic
This is so shit.

@sellotapechicken weed appointment on 20th June 🤞

@RedRosesPinkLiliesThe shit we have to endure becomes bigger and bigger 💩💩 Have a VERY un MN hug from me 🥰

Pretty fed up this end. Life? I don’t really recognise it any longer.

Thank you @Enigma53 ♥️♥️♥️

That is awful. It’s so disjointed. I hope you told them why you left! It’s like they think our lives are just surrounded by cancer I mean they are but I don’t know many people who would be happy to sit around waiting all day for something to happen and then just be ok with it!

had to have a blood test in hospital yesterday, a blood test I’ve had 3x in my gp surgery but the hospital can’t see the results so I had to have them do it..

@sellotapechicken that is also ridiculous

We’re just not seen as human, just another case not worthy of being a partner in our own management

I do think the NHS drag us down mentally. Yesterday I really was speaking to DH about my funeral (he hates me doing that). At home I feel less negative- more in the moment.

I know maybe because hospitals force reality on us, but they also suck remaining joy out of our lives

@RedRosesPinkLilies yes I agree. I find my breast team to be amazingly upbeat and positive. However, the sarcoma team, oh my days! Write your life off now, why don’t you! I don’t need reminding, but they seem to take joy from sucking the soul out of someone!

It’s maybe a reaction to the days when people didn’t get told they had cancer. But I do think some of these professionals take pride in how brutally honest they are. I can only hope that someone treats them in the same way in the future

Agree. I’m all for a realistic picture, but hey, there is a line to be drawn. We are all intelligent human beings. Please don’t patronise, add on extra brutality or head tilt.. please!

I’m going to go to a soft play birthday party for a 4 year old later today.. wish me luck!!

Oof rather you than me @sellotapechicken !

@RedRosesPinkLilies how did the drain go?

@EachandEveryone how's being at home treating you? Did you decide on any more artists to see at Glasto?

@Enigma53 how's your ear now?

I've been awake on and off for hours. Too hot to sleep. Then dd1's alarms were playing away for ages until I got up to tell her to move (she's off to Lido festival to see Charli xcx). Then the cats both joined me for cuddles & their purring seemed extra loud. I've given up, come down for a brew & put the washer on 🙄

@lucysmam just seen your other post in chat re: moving. Good luck! Whats the rental market like where you are? I hope you find somewhere lovely with less work. We live in an old house, it all needs decorating etc. I swear I would prefer to live in a caravan somewhere hot!

Fuck knows what’s happening with my ear. Got a hissing sound now, maybe tinnitus 🙄 great!!

How’s everyone? @EachandEveryone how’s it going being home?

@RedRosesPinkLilies Did the drain go ahead?

@sellotapechicken GOOD LUCK!! Take a brownie with you!! 🤣

It’s a hot one in Cheshire, DD. has just returned from partying in ibiza, she’s got work ( still hung over) 😆 DS is in his teen pit, he’s got work later. I’ve upped my meds as my pain is annoying me. Got my weed appointment on Friday! Might make a cake, or clean my car. New chemo in 2, weeks, fuck!

@Enigma53 they're mostly for sale 🙄. Have enquired about a couple & will update my details with the council too. I did try suggesting to my dad that the house next to my friend is up for sale... he says he'll drive us to look at rentals 🤷‍♀️. I need to acquire boxes & start packing I suppose <sigh>. Just what I wanted to do...not.

Make the cake, car can wait!

It's nice here too, I think I'm going to town with dd2 - she needs shampoo and conditioner.

@Enigma53 thr drain went ahead, but stopped draining after 4 L . That wasn’t all the fluid - my abdomen was distended still
I suggested they might use a syringe to exert some pull on the fluid/ or flush the thing. But apparently not. So it was removed after a while because it never magically started draining again

A month ago I was climbing a Munro, now I’m breathless climbing our stairs (modern house, not that many). I don’t know if it’s fluid affecting my lungs or the bowling that’s in my abdomen which is also stopping me eating a normal amount.

We deteriorate quickly, don’t we?

*bowling ball - a heavy one!

Sorry to see the drain didn't work @RedRosesPinkLilies . That's utterly rubbish. I remember too well the feeling of relief as I deflated 😥

@RedRosesPinkLilies oh dear, sorry things didn’t go according to plan, that’s rubbish. So what happens now? Just crack on with chemo?

The potential for quick deterioration frightens me. Only a person at s4 can know how this feels.

My plans were quickly scuppered yesterday. A week ago they found I had a UTI, so prescribed anti biotics. Immediately threw it back up. Tuesday they prescribed a different one, they’ve made me feel sick, but yesterday I took one at 11am and by 1pm I was sick, which went on for 12 hours. I thought I was the beginning of the end! If it kicks off again, I will have to go to a&e. Unbelievable shit 🙈☹️

Hi everyone,
Sorry I've been quiet recently, some of you know my reasons.

@RedRosesPinkLilies I'm sorry to hear your drain wasn't entirely successful.
What happens next?

I'm OK but have had no appetite for a few weeks now, very unlike me.
Even with my stomach issues, I still had a good appetite.
The past couple of times I've been weighed on Oncology I've lost weight, again very unlike me.
My stomach has been incredibly uncomfortable, bordering on painful.
I've also noticed I'm peeing less than normal.
I should have told Oncology before now but wanted to remain in my little bubble of stable scan results for a little bit longer.
I was told when I had my bypass that there was the possibility of the new opening in my stomach narrowing and I may need a stent putting in.
I feel like this is what could be happening although I don't actually know, it could be a number of things.

I'm armed with my list of symptoms to take to Oncology tomorrow although whether I actually get to see my upper GI nurse, well who knows.
I haven't seen her for about 2 months.

Love to all xxx