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

[SewingBees]

New thread!

Sounds grim. Smell = infection surely?
Enjoy tonight. I need to get out too, but chemo has fucked with my mouth and it’s so sore. Tomorrow is another day!

Swabs negative and bloods don’t show infection so I don’t kno what to think

Morning all!

Just checking in to see how you're all going on?

@thegirlwithapearl how are you feeling?

I’m doing ok. Absolutely exhausted but ok. How’re you?

Bleeding again!! Fucking had enough!

The steroids are making me eat and eat I can’t walk past a bakery without going in. I am bored now. Tomorrow I’ve got appointments and Wednesday they will look at my scans.

I'm ok @sellotapechicken ...still plodding along! Knackered but nothing new there 🤷‍♀️.

@Enigma54 you're really going through it 😥. Can they not do anything to help/stop it?

@EachandEveryone I eat & eat even without steroids lately! I've had school dinner & toast, since 1pm...steak & chips for tea 😋.

I've got bloods tomorrow, meant to have an in person Thursday but going to see if it can be a phone call instead - not much point trekking over an hour with no scan results yet (scan next week), and meds this Friday. Fucking hate this week! At least work don't expect me back in, I suppose!

My lumpectomy friend is having chemo <sigh>.

In other news...I'm of to London next weekend for 2 gigs (I actually might have mentioned before!) with dd1. She's been to Ikea today in between seminar & tutorial...bought herself a dustpan and brush. The floors get bitty, y'know? Who'd have thunk you have to clean your floors 🤣.

@EachandEveryone or any of you really - have you ever been asked by accessibility the reason for joining that queue?

I was under the impression, after talking to Manchester Apollo's team, that they're not allowed to ask what's "wrong" that you need to use the facility. Hammersmith Apollo want a reason & I'm not sure what to put 🤔 - I can queue if I need to, it just means I'm knackered & rather sore after an hour or two.

I'm sending my enquiry without a reason anyway - we'll see what they come back with.

This is why you need the nimbus card then when you book you go through a special accessibility booking line. Please get one. They never ask for it once you’ve booked through them.

in the meantime just say you are having cancer treatment it quickly shuts down the conversation, you can’t stand for long there’s nothing else to say. Speak up for yourself and have a fab time!

are you on Chemo @lucysmam? If so, just tell them that; fatigue etc makes it hard to queue.

Thanks both of you! I'll see what they say - I sent it without a reason.

@EachandEveryone I did look at the Nimbus card briefly, then didn't get one purley because some venues you have to be seated if you use accessibility, and tbh, I prefer a standing gig...just without the hours in a queue (standing or sitting on the pavement) - it makes me ache & I'm tired before I get through the door & I'm fully aware that I'm not as 'able' as others to do that (does that even make sense?).

Trouble is; a lot of people and venues seem to think along the lines that back of queue = back of pit & actually, I can hold my own if I've not stood about for ages in a queue 🤷‍♀️ - I just want to not be shoved to the back because I'm not able to queue forever (mid pit would be fine - I'm not fussed about barricade, although it's nice to have an uninterrupted view).

Thank you for asking @lucysmam
I am doing okay, I think. Ascites have miraculously mostly gone from my stomach (or at least the swelling has) I can walk around normally now. It's a total rollercoaster that so much seems to be changing week by week.
I've not been told what my bloods are like, I think my liver is still pretty bad, but I have been told my kidney function is surprisingly good and apart from some mild liver discomfort I'm now eating normal meals and not really having to limit what I'm having.
My challenge at the moment is remembering what my oncologist has told me about my prognosis and not assuming other people's stories are the same as mine. Which is very hard when you google statistics, as I know everyone here is very familiar with. But i also feel so far past that now that a bit of me reads them and in my head is just like "nope, I'm not having any of that." I want to be the person who is here ten years later making other people feel reassured. I hope I can do that.

@lucysmam do what you need to, to avoid queuing. Life is hard enough, without bloody queues! 🙄 And have a blast when you are there!

@thegirlwithapearl you sound very much like me almost 2.5 years ago...I don't think the ascites has ever fully gone for me - it's always commented on in ct reports. Although my consultant did once comment that she saw no reason for them to keep doing that when it appears negligible (right word?) & is not currently a priority.

I'm also the "nope, fuck that shit" dickhead - haven't even enquired about prognosis 🤷‍♀️. Plan to keep chugging along until...well...I can't chug any longer. No fucks left to give, about anything much. I have far too many things to do!

Oh yes @Enigma54 there are 2 alternating setlists, hence 2 nights. Been looking forward to this one for a very long time 😊.

Excellent! Bloody well enjoy! 😊

Same! I went on them for pain. I was eating day ( and night!) and thinking about food constantly! Crisps at night, sweets at night; I even bought corned bloody beef. I don’t eat red meat’ 🙄🤷‍♀️🙈

Oh god, I’m sweet hunting online again! 🙈

@lucysmam are you not interested in theatre? I’ve seen most of the London shows and I go to a lot of comedy it’s great to have the free seat makes it much cheaper. Also festivals including Glastonbury is one free ticket. Are you interested in the IOW line up? I’m not really. I went out without my bus pass today and really begrudged paying the bus fare😀😀

I also don’t want to know about prognosis or time lines I’m not interested. I just go around with my head in the sand.

@EachandEveryone theatre is more dd2's thing but I'd happily go with her. She doesn't often tell me when she likes something though, so misses out on loads 🤷‍♀️.

I haven't checked out the lineup yet - we were talking festivals the other day though so I'll have a look.

To have a nimbus means you can put it on and go to the front of the queue or through another entrance so might be worth it for that?

That is how I feel, I have so much to do. I'm 36, I have three children under 10, I don't intend to go anywhere any time soon. It's partly quite liberating but also hard as when DH and I talk about say, the children going to uni, there is always a little voice that says, if you're still here.
It's quite surreal typing that too.

I was out with colleagues last night and they were talking about retirement. I can't imagine making it that far - another 14 years most likely - but my oncologist reminds me that 1. I'm responding to current treatment (ribociclib) well, 2. There are other drugs to try if/when this one stops working and 3. Ribo is quite new so the stats on longevity are constantly being revised. So prognosis is impossible to calculate.

I'm finding it really difficult to plan for moving house. I need to - don't want to live next door to my ex and the house is not suitable for a mildly disabled person - but do I plan for something fully wheelchair accessible? I guess so - plan for the worst and hope for the best is probably the best approach.