Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

@balkanscot
@enigma54
@sewingbees
@EachandEveryone
@lucysmam

Thanks for our lovely new thread @sellotapechicken 😊

What are those temps doing now?

seems to have settled thank goodness! How’s your chemo going?

That’s good. Long may it last.

Just had Trabectedin no.2. District nurse coming later to disconnect pump. Hoping for minimal side effects!

Thank you for the new thread 😊
@sellotapechicken

i am avoiding drugs, although I’m not sure why.

my drug avoidance has left me in bed. My lungs are bad and I’m having trouble getting upstairs and downstairs as a result . DH is doing a grand job though. Next week I have a ct scan on Saturday- we’ll see if I can last that long. They have taken me off the ribocyclib as my liver is bad. I want a blood test on my lynmphangitis which probably means a chest X-ray.

Quite honestly I’m fed up. Sorry. I shouldn’t be compared to you ladies. I went to my parents last weekend. They wind me up.

we go to to co. Durham next weekend (6hours away) and I’m letting DS and DH have a good weekend together.

Thanks for the new thread @sellotapechicken !

Just to let you all know - we had our day in court. The judge was merciless with the landlord's solicitor. Ll sent his wife - judge like wft? face 🤣. Wife had made witness statement. Judge like 🤔🤔.

Upshot was they were told to be sensible - we have 6 more weeks.

However...we're finally moving over the weekend 🥳🥳. Boxes & crates all over the bloody place here & my dad's coming to help start moving stuff this evening.

That’s such good news!!

I appear to have accidentally started a book club in my village..

Thanks @sellotapechicken! So relieved 🍷

My dad's just taken four car loads & is coming back tomorrow for more.

How have you started a book club?

That’s such good news! I’m so happy you have found somewhere.

Re book club I asked if there was one and everyone said no so I arranged a meeting to talk about books 🤣 then people started asking me what book we were reading so I had a google and suggested one. Then we met and talked about the book 🤣

Well done @lucysmam. DH has inadvertently started a sci fi book group from our village phone box. He has people talk to him in the pub about the books now. It’s really nice to see.

does anyone else have stupidly bad brain fog?

Maybe I need to start a book club 🤔.

@Ventress I make such a twat of myself with brain farts. It's like my brain just does not process words sometimes 🤷‍♀️. Or I cannot remember who people are. Or I just have no focus. Or whatever else.

Embarrassing as fuck but 🤷‍♀️. Least it amuses folks I suppose 🤣

@eachandeveryonehow are you?

Hi all. Just checking in. My latest CA125 has come down, now at a lowly 667 (normal <35). Oncologist totally bemused by my yo-yoing numbers.

Hope you’re all doing as well as can be, each and everyone you have been on my mind!

@lucysmam Result! 👍

@eachandeveryone how are things?

I had such a miserable Saturday despite all the Spring blazing sunshine (still freezing - it is Scotland after all). Woke up with such dread/anxiety on my mind, couldn’t shake it off all day. Kept crying every 5 minutes when DS wasn’t looking. Just awful. A bit better today - I have started doing a jigsaw 🧩, I love doing them as I can spend hours engrossed in it. Didn’t take my PJs off until about 2 pm this afternoon. Didn’t even answer the door when (I later found out) my next door neighbour rang to give me her freshly baked banana bread. 😳🫣

Still haven’t been able to put much weight on as everything tastes shit. 🤢

Aw your neighbour sounds so lovely.

I spent all of Saturday in bed and most of today 😳

@balkanscot how are you feeling today? What a lovely neighbour you have, to bake you banana bread. My neighbours are shite. On one side is a rude old lady and on the other side, a family who are far too filled with their own self importance ( don’t care if that’s outing or whatever!) I know you mean about the anxiety, it’s a horrible feeling for sure. How is DS? The jigsaw’s sound a good shout to help distract the mind
( I may by myself a couple!)

@sellotapechicken are you poorly? Hope you feel better very soon 🤞

I’m bed hopping. Feel so rough after 24 hours of chemo last week. Honesty, a life time of this, doesn’t appeal 😢

@eachandeveryoneI do hope you are okay.

Has anyone heard from @eachandeveryone

Apologies for typos, my brain has left the building!

@sellotapechicken really hoping @eachandeveryoneis okay

Me too :(

How is everyone ? I know we haven’t heard from @eachandeveryonebut I think we need to set aside space and also continue the thread. I hope above hope she’s just got no signal or whatever and is comfortable.

@Enigma54how is your new chemo going?

@balkanscothow are you feeling?

My temps are over now so I’m feeling a lot better :)

@sellotapechicken @Enigma54 This week is my week off, so feeling pretty good. As farms pretty good goes when you are stage 4. Loving not having to go anywhere near the hospital. Although I keep thinking that as long as I have hospital appts. it means I am still being treated. Actually, I do have to go the hospital later on today for a meeting with onco psychologist. Weather is vile, gale force winds with lashing rain. I plan to take the bus as there is pavement resurfacing going on at the hospital and all disabled parking bays in front of the cancer centre have been taken out of action, making parking even more stressful than usual.

I have finally started doing my physio exercises more consistently.

Neighbours in the stairwell are really lovely. I got some savoury bread delivered yesterday by th same neighbour.

@Enigma54 have things improved after your chemo session (in terms how you are feeling)? How does this regime compare with Epirubicin?

@sellotapechicken how are things with you?

And anyone else?

Is @eachandeveryone in the Facebook group?

Watching “Band on the Run” (Paul McCartney post-Beatles) and my opinion on Linda has not changed: I just cannot warm up to her. And despite the fact she perished from the same damned disease I will perish from as well.

@balkanscot yes she is the Facebook group. I’ll put a message on there too. I’m doing really well actually. I caught some form of horrific flu last week and have spent most of the week in bed but I got my latest scan results and everything is stable with just the 1 tumour in my lung. So I’ll take that!

@sellotapechicken Fantastic news about your scan! Long may it continue.

Thank you for putting out a call on FB for @eachandeveryone

I fell unceremoniously on Saturday afternoon after tripping on the dipped/curved part (drainage)that sits in the middle of the pavement. Landed on my left side, squashing the DIEP-reconstructed left boob to boot. I phoned NHS24 just to be on the safe side as I was worried I may have cracked a rib as it was so sore around the area. Luckily, nothing was broken, just badly bruised. I also have a gash just below my left knee, I was bleeding quite a lot from it in the aftermath but that, too, is now fine. Apart from being sore. I also have a massive bruise near my right knee. The fall really shook me up and undermined my confidence. It’s the last thing I need on top of everything else. I also keep having nightmarish dreams almost every night.