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

[SewingBees]

New thread!

Thanks!!

Love the title!

@SewingBees excellent title!

Brilliant title.

my ketamine has run out and GP has said they aren’t alllowed to prescribe it. Discharging hospital said it’s up to the GP to do it. Pharmacy told me they don’t have it in stock anyway. So I’m going to Glastonbury with stupid oromorph and paracetamol. I’m almost packed will finish off on the morning.

i hope you are all feeling ok. I’ve ordered a kfc to drown my sorrows.

@Enigma53good Luck tomorrow

@sellotapechicken thanks 🙏

Just placemarking so I can find you all for now.

@EachandEveryone excited to hear about Glasto!

@Enigma53 hope today's ok!

@SewingBees thanks for the new thread.

Hope everyone else is ok x

I’m halfway to glasto and my shoes are on so far so good. All my friends are already there I’m so excited to see them. It’s our one weekend a year when we see each other. All women over 40

Had a phone appointment to talk surgery today. He rang an hour later than anticipated and it lasted 45 seconds. ‘Do you want the surgery ? Yes? Ok I’ll let you know when we have a date’ 👍

@sellotapechicken Do you know the surgeon? Can you trust that he’s being efficient rather than abrupt? Any idea of timeline?

I do know him, he’s not known for his patient skills. ‘Before the End of the year’ as my scans are still clear and they need to secure funding from nhs England for it. Long process!

Today I am managing to sit up more than I lie down. This is a breakthrough 🤣
Went to the muga scan and DH made me sit in wheelchair- which absolutely fine, but feels like an obvious deterioration. I just can’t walk a distance anymore

Chemo starts again tomorrow. It’s been brought forward a week - no idea why. And I won’t have had a chemo precheck done, so I half expect to be sent home. But I queried it, and have email evidence that I definitely have an appointment.

It’s caelyx (doxorubicin). Anyone have experience? I believe it can be hard going x

@RedRosesPinkLiliesI had doxorubicin for leiomysarcoma. 4 cycles, it didn’t work. I found it tough! ( hopefully you won’t!) 🤞

@sellotapechicken I thought your surgery was July? That’s a bummer “ before the end of the year”
Clear scans, that’s great! Are you still on chemo?

@sellotapechicken i think at least he’s on your side, and maybe a formidable opponent for others (who decide funding?)

@Enigma53 scared to ask - what especially was tough about it?

@RedRosesPinkLilies nausea and headaches for me. Also it battered my mouth. BUT remember we are all different. Xx

Yes! I thought It’d be done asap but it’s all red tape with nhs England. Yes still on chemo and immunotherapy. I have one small area which hasn’t gone away but it’s all decreased or stable so they’re happy to play the funding game still.

how was chemo?

All good from your end then.

Ive got ecoli. Been waiting an hour to find out if chemo is going ahead!!

@RedRosesPinkLilies I had it for my primary breast cancer, 3 rounds 3 weeks apart. It made me incredibly tired for about 5 days, but the steroids I was given alongside made the first 2-3 days a lot more bearable. I was a bit nauseous, lost my appetite, got a sore mouth, also sore labia (sorry if tmi), my hair fell out and my nails were also affected. But I was back to work for the second half of each 3 weeks cycle.

They should give you steroids, and also anti sickness tablets that you should take at the first sign of nausea.

@EachandEveryone I hope you have a great time x

Well, I’ve had my chemo which is as meant to start tomorrow- stopped. As my heart isn’t working well enough. The ejection fraction is too low - around 20%, I believe

Consultant said he would phone back on Friday with a new plan. Pile of 💩
I don’t think there’s much left to try

Oh no!! Is that why you’ve been feeling so unwell recently??

@RedRosesPinkLilies I'm sorry to hear that. Doxorubicin is known to give some people heart problems so they monitor with ECGs during treatment. When will you find out your alternative treatment plan? Thinking of you, you're in a hard place xx

To the point then!

probably! Although it could be the sarcoma pressing on everything, a bowel obstruction in the making (fucking hope not!) or just a combination of everything! 🙈🤷‍♀️