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Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

1000 replies

SewingBees · 24/06/2025 15:08

New thread!

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sellotapechicken · 13/08/2025 17:31

@EachandEveryone what immuno are you on? I’m on a combined one called Ipilimumab and Nivolumab. every 3 weeks

EachandEveryone · 13/08/2025 19:12

PrincessFluffyPants · 13/08/2025 16:38

OMG! I am so pleased for you! The best news to hear all day! Amazing! How are you going to celebrate?

My friend has bought me a packet of rich tea so I’m cracking them open. Still a long way to go. My consultant doesn’t know yet so I hope to touch base with him when he gets back. I’m still having the runs. I just want to get home to my cats. I don’t know if booking an Ocado shop for the weekend is pushing my luck!

EachandEveryone · 13/08/2025 19:13

@sellotapechicken se as me. I’ve only had three so far. How are your side effects?

sellotapechicken · 13/08/2025 19:20

EachandEveryone · 13/08/2025 19:13

@sellotapechicken se as me. I’ve only had three so far. How are your side effects?

I had horrific colitis and it blew my thyroid up so I have a crohns immunotherapy drug to fix it and I will be having my thyroid out

EachandEveryone · 13/08/2025 19:42

I have thyroid issues anyway so it will be interesting to see how that goes

Enigma53 · 13/08/2025 19:50

I’ve got a thyroid goitre that needs removing. Now doesn’t seem the right time though!
@EachandEveryone easy does it on the rich tea eh? 😊 And take it easy on the Turkish kebabs ( even though they are delish) Seriously, I’m made up for you!

Well chemo 2 complete.
Can’t wait for another stay in my local hospital next week, hooked up to god knows what, eating shit again. Hopefully not, but with Haemoglobin at 82, it’s gonna happen 🙈

PrincessFluffyPants · 14/08/2025 10:16

Just drinking my cup of tea and pondering on life. What are everyone's thoughts on DNRs and other ways of opting out of resuscitation? Not trying to bring the mood of the thread down at all but because of the lytic lesions I have in my sternum I've realised I've become very protective of that area becoming damaged in some way, not obsessed but very wary. I've bought a big cushion that straps onto my seatbelt as (and I'm sure you will have also had this) it hurts to have the tension of a seatbelt strapped across me, but my biggest fear is the thought of my chest bone being broken if I were ever to need CPR or if the airbags were activated in the car.
I tried to discuss this with my husband along the lines of that I would want to refuse CPR as it's so violent but I would probably happily accept an infusion antibiotics or anti fungal treatment if I needed one. I know you can let your GP know your wishes, plus the local ambulance service and the hospital but it's a fair amount of admin so I haven't approached it yet.
Has anyone done this or looked into it and still considering options?

On the less morbid side of this post, today for the first time in months I can see/feel a hint of collarbone in my neck line. I've been so puffed up and tender there for months I thought I would never see it again. Feels like a win even if it's a small one! The things we cling on to for a bit of hope!

Hope everyone has a lovely uneventful and stable day that causes no trouble at all for you.

GoldenDog1 · 14/08/2025 18:14

@EachandEveryone that's great news. So happy for you 😃

EachandEveryone · 14/08/2025 18:29

I’m being very cautious however I do feel like booking a holiday. I saw my boss friend today and said I need to slowly get back to work

Enigma53 · 14/08/2025 18:32

EachandEveryone · 14/08/2025 18:29

I’m being very cautious however I do feel like booking a holiday. I saw my boss friend today and said I need to slowly get back to work

Take it easy. Don’t run before you can walk. Hopefully you can continue with your immunotherapy 😊😊

Enigma53 · 14/08/2025 18:40

@PrincessFluffyPants how’s your day gone?

Mmm.. to be honest, I haven’t given DNR instructions, any thought at all. We are all living with different cancers on this thread and whilst some of us are struggling, some are clearly living well with it. Im at the point of needing antibiotics/ anti fungals/ blood transfusions, any time a week within chemo. Other than that, I am able to go about my daily life. I am off sick from work at present and have no idea when I will return!

Take ALL the wins @PrincessFluffyPants they are SO important ❤️

Enigma53 · 14/08/2025 18:41

@EachandEveryone wouldn’t a holiday be ace!!

EachandEveryone · 14/08/2025 20:10

I want to go back to work it’s two grand a month I need. I saw my manager today she said I have 8 weeks annual leave so I can count that in my hours. Once I can’t walk properly and my wounds have healed and the immunotherapy is under controlled I have to bite the bullet.

EachandEveryone · 14/08/2025 20:11

I want to go back to work it’s two grand a month I need. I saw my manager today she said I have 8 weeks annual leave so I can count that in my hours. Once I can’t walk properly and my wounds have healed and the immunotherapy is under controlled I have to bite the bullet.

Enigma53 · 16/08/2025 17:52

How is everyone?
I’ve got a blood transfusion booked for tomorrow. HB remains shit.

@EachandEveryone have you escaped??

lucysmam · 16/08/2025 18:16

I'm tired - my own fault for partying in the Fontaines DC pit like I'm 18, last night, though! My hips have been telling me all day I'm not 18 any more 🙈. Just waiting for dd1 to finish work so we can eat Chinese for tea 😋. Bloods and Denosumab for me this week, and I need to book a dentist appointment - I have an achy tooth but it's not the one that she sealed with a filling so not sure if the Denosumab is guilty there.

@EachandEveryone are you home? Hopefully you're chilled with your cats & enjoying something on the telly with your feet up!

EachandEveryone · 16/08/2025 20:59

Gosh my friends say that Green Man is far too polite and not edgy enough!

I’ve ordered a mild curry and going to watch and just like that. I have bags everywhere and I’m quite overwhelmed by all the steroids

lucysmam · 16/08/2025 21:15

Oh! Their line up looked promising. That's quite disappointing. Is it the crowds, or the vibe? Or the artists? I wonder.

I'm ignoring my overnight bag from yesterday so hope you're ignoring your bags for now? We had chicken in garlic sauce, very garlicky, very tasty 😋

EachandEveryone · 16/08/2025 22:33

I really thought they’d send me home with painkillers but I guess because I was on them at home they haven’t?

jusr very middle class hippish and too many children 😀

lucysmam · 17/08/2025 09:10

Oh, do you have any painkillers at home? Seems odd they wouldn't send everything you'd need!

Ah, there haven't been children where we've been. There were a handful I saw at Wythenshawe, including one little boy living his best life on barricade, but not loads.

We're considering options for next year - whether to buy tickets or wait for lineups & get resale 🤔

Any of you up to much today? I've got towels in the washer & need to start the gig scrap book

EachandEveryone · 17/08/2025 10:53

The steroids are keeping me awake so better start being productive. Got a £250 bill off the council for the one hour daily visit from the carer. I don’t think so. I know I never got my bank statements together so must attemp that today

Enigma53 · 18/08/2025 16:21

Did you keep the curry in @EachandEveryone?

Oral fucking thrush AGAIN this end..
Euthanasia better be legalised soon. Im
done ☹️

sellotapechicken · 18/08/2025 22:41

I’m ok, I’m in York doing a week long ‘learning mission’ read ‘I need cpd hours and this was the longest and most boring they could find to put me on’ 27 hours of cardiac issues in under 16s. Absolutely useless to my job but if it stops the constant emails from the gmc and hr then fine. They’ve paid for it and my lovely travelodge..

sellotapechicken · 18/08/2025 22:41

Enigma53 · 18/08/2025 16:21

Did you keep the curry in @EachandEveryone?

Oral fucking thrush AGAIN this end..
Euthanasia better be legalised soon. Im
done ☹️

Oh mate that’s awful

Enigma53 · 18/08/2025 23:10

sellotapechicken · 18/08/2025 22:41

Oh mate that’s awful

Yes fucking awful

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