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

[SewingBees]

New thread!

@RedRosesPinkLilies Don’t lose faith. Friday isn’t far away. Holding your hand tight 🤝

Did they do a sample test? Did it go ahead? To the point doesn’t cover it. I knew Sarah would be horrendous in person as she has zero bedside manners. Patients complain all the time but I didn’t expect Malcolm to be the same!!!

Malc and Sarah eh? I don’t know, they need to go back to med school and complete the module on bedside manners!

Well, wee sample on 6th June said ecoli. I couldn’t complete the course of anti biotics as was throwing up all weekend. I gave another sample in yesterday and they reckon I still have it, based on symptoms. Could be the slow release oxycodone I guess.

Yes. They both do!! Oh that’s so crappy for you x

@Enigma53 @sellotapechicken funny reading your comments. Undercover patients

@RedRosesPinkLilies defo undercover. Malc and Sarah, you are EXPOSED!!!!!! 😁

I’ve got a port and went swimming today. Really weird experience swimming outside in the Peak District but it was so nice ! :)

🤣 probably shouldn’t post about it tbh!!

Anyone awake? Can’t sleep 😴
Bladder in overdrive and brain even worse! 🙈

I am. I’ve got 2 dogs asleep on me and my leg is twitching like mad which is making my dogs ear twitch which is making my leg twitch.. ad infinitum !!

Twitchy legs and fucked bladders. Who’d have them eh? 🙄

Im still waiting for my Curaleaf outcome. Itching to try this oil!!

@Enigma53I hope you get it soon!! It has made a very big difference to my life. I like the gummies. I probably ruined the oil by making cake 🤣 so I bought some more of that, definitely works better under the tongue! Did you get to have to chemo today?

lol I got hidden for discussing them. Oh well! I hope you get it soon! Did you have chemo today ?

Nope, no chemo. I called the Hotel Christie hotline, told them I felt like shit, and didn’t know why. They told me come for chemo anyway and they would “ assess”. I got there and waited 2 HOURS 15 minutes in the chemo suite, to be told it would be rescheduled for next week and here is some cyclizine!

Mmmm….the cannabis sweets, what do they do ?

Just had a call from the hospital to bring my operation forward to Monday instead of Wednesday. It's a bit of a shock but I'm in pain and nervous, so the sooner the better. Just waiting to hear from (ex) husband if he can cover childcare for the extra 2 days.

@SewingBees best of luck for Monday 🤞 Hope all goes well and ex H plays ball re: child care.

@RedRosesPinkLilies have you heard from your oncologist yet?

@Enigma53 he phoned this morning. He wants to discuss the problem with my heart with a cardiologist. He doesn’t think the chemo caused it, but that cancer can affect organ function. He doesn’t know if they can use any meds to help the heart function

Next step is a tablet called cyclophosphamide. At least I can take it at home. I don’t think it’s got much chance of working.
He did mention no treatment as an option, but I’m not there yet and neither is my family.

Just to ask - it was a phone call and the Dr always insists DH is on the call too. Does anyone else have this? I don’t think he’s got a nice manner and I feel shoved to the side in my own appointment. Probably being over sensitive. I really wish I had an oncologist with some warmth.

@RedRosesPinkLilies okay, one step
at a time. Let’s get your heart sorted. Doxorubicin can affect the heart, so he’s right to abandon that plan.

The tablet, why don’t you think it will work?

No treatment.. Mmmm…. What do you think? That’s a hard one to swallow.

@RedRosesPinkLilies I have to say, I have always gone to my appointments alone. I prefer it that way. But most of my sarcoma doctors have zero warmth. I had one call where I just cried and cried as she was so blunt with me!

@Enigma53 i am sorry. I think it must be their general manner.
xxx

@RedRosesPinkLilies agree. This is their bread and butter, they don’t this all the time. My breast oncologist is lovely however.

do

Surely it's your choice if someone else attends a medical appointment with, whether it's on the phone or in person. He sounds like a bully.

Operation is going ahead on Monday. I'm really relieved. Quite a lot to sort out before then but I'll be pleased to be busy. The last few days (after Tim Minchin who was hilarious and just what I needed) I've been stressed and on edge, in pain and not sleeping well. Just want it over with so I can start recovering.