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

The app is insane!

@sellotapechicken yep, not sure what I think!

Yeah I don’t love it 🤣 wonder what will break first on it

Hair is now falling out properly 😭
How is this fucking shit, even happening!!??!!!

Can I share good news? Latest scan shows no tumour progression. And I've found a cleaner who actually turns up as planned.

That’s fantastic! 10/10 finding someone who turns up ! Hope you’re going to treat yourself to something nice for a good scan 🥰

Good God today has been horrendous! I woke up late and had to drive at break neck (not speeding honest ) speed to get to the Christie for my appointment only to find it’s next week not today. Then the bypass road I use to get home had a fire near one of the exits and despite having lived nr Stockport for 5 years now I had zero idea how to get home so decided to see a friend in Macclesfield, forgetting that the main road to my village from Macclesfield is closed because the road disappeared into a sink hole near Christmas. Then I posted a parcel and got home with a naughty McDonald’s ready to watch utter shit on telly as my lovely husband is out tonight. Picture the scene, scruffy pjs with bleach stains on, hair in a messy greasy bun because when I wash it more hair than I can cope with falls out. Face deep into a Big Mac wearing the burger sauce all down my top. And the door goes.

it’s the police and a gas man who said that next door but 1 sawed through his gas main whilst doing diy today and they need to evacuate the entire terrace because he didn’t tell anyone for 18 hours, so I had to pack the dogs into my car, bring all the stuff I need for them and me for a week including my nanas funeral on Tuesday, plus all my medications for a week,
and my elderly dogs medication. DH is staying in a hotel but we can’t take the dogs so I’ve gone to my mums

it usually takes an hour to get to my mums, it took 2 tonight because they closed the motorway near Chester and the diversion took me to Prestatyn and then back to the bit of north wales my mum lives in which is closer to Chester than Prestatyn by about 40 miles….

@sellotapechicken You couldn’t make that up!! What a day!

It was ridiculous!!

@sellotapechicken I have no words!

What a day @sellotapechicken and I really hope you at least got to enjoy the big Mac
Good news @SewingBees
@Enigma53 (or 52 possibly 54!) I'm sorry you're going through hair loss it's always shit when it happens.
I'm still in hospital hopefully home tomorrow after chemo today that's the plan but info is very hard to come by. Waiting for my NHS speciality cold toast the highlight of the morning. Might make a break for M&S later.

@sellotapechicken.. wow.. just wow! What an absolute arse of a day! All because dickhead ( I’m sure he’s nice really!) neighbour saws through gas pipe and fails to report? Do you have to stay at your mums for the week now?

@SewingBees great scan and cleaner results! Are you still on the ribociclib/ letrozole combination? Excellent news.

@Florsilvestredelcampo when do you get to leave “Hotel Hospital”? How are you feeling in yourself now?

Major wallowing in self pity party going on here. Yesterday I just cried and cried over my hair. Told my colleague to pretty much fuck off ( over WhatsApp!) refused to see my oldest
( no longer friend and her creepy looking boyfriend) told DP I was leaving and cried some more. I need to source oestrogen hrt, as now convinced leiomysarcoma is going to kill me, so what the hell. Yeah lovely.

@sellotapechicken are you cold capping ( can’t remember) I’m torn between asking my hairdresser to shave all hair off and just waiting a bit longer to see if shedding stops.

Just waiting to see if chemo will go ahead today then consultant forgot to write the prescription 🙄.I did have a single RM which was great but last night I was on a very chaotic bay. Bloody air mattresses I'm not on one but they are so loud it's like trying to sleep next to a constantly inflating hot air balloon

I am but it isn’t doing much if I’m honest! I’m going to call the gas company now as I really want to go home!

@SewingBees that's lovely positive news about your scan results.
Good news about the cleaner too.

@sellotapechicken wow I don't even know what to say about your day.
It sounds bloody awful.
Hope you can get home sooner rather than later.

@Florsilvestredelcampo hope chemo goes ahead today and you are able to go home tomorrow.
Nothing worse than trying to get some sleep in a noisy, chaotic bay.

@Enigma53 Sorry you are having such a hard time. Sending hugs.

Chemo seems to have hit me a bit harder this week.
I've slept a lot since Tuesday and had quite a bit of pain in my legs.
I woke up on Tuesday feeling like I really didn't want to go for my chemotherapy.
I did go of course, but sometimes it all feels too much, too often.
Anyway today, I am feeling a bit brighter with a little more energy.

Love to all xx

Just popped in to say hello - nothing exciting happening here - same shut, different day. Hope we all have as good a weekend as we can manage 🥰

I need to pop in too
Im doing well wrt cancer/ chemo, but exhausting week with several visitors. Glad to get to a quiet weekend
still getting over @batterychicken ‘s day. It doesn’t actually recognise the new name!

Was at @sellotapechicken - last message about the day

I’m shaking my consultant just text me and it’s all approved!!! I’m getting immunotherapy 😀😀

@EachandEveryone Fabulous! Congratulations ♥️♥️♥️

Yay!! 🕺🕺🕺🕺🕺

New app officially christens me Enigma53! 😁

@EachandEveryone Fantastic news!

I’m not liking this app 😬