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

🤣 @Okitsme that made me chuckle - that's the sort of weird shit this does to us! The limbo phase is horrible - it's better when there's a solid plan in place, I promise.

I've been to see my favourite consultant of all the ones I've met today - she's absolutely lovely. Nice BCN sat in too so we had a chat. Consultant was pleasantly surprised when she examined left breast - feels normal! & very pleased with right too, even though it's wonky af! She commented that my skin's looking lovely too...presume that must have been bad at the start but honestly, don't remember.

CT scan's showing no changes so they're going to move them to 6 monthly with an in person every in between 3 months (does that make sense 🤷‍♀️).

She was baffled by the struggle to get a suitable CT apt - is requesting now for 6 months time & going to note that I need a sensible apt. at easier to get to hospital. Not 7 p fucking m! She's also put a note on my prescription while I was there that pharmacy need to dispense all 3 mths of meds at once, not expect me to go back every month. She says check when I get to my chemo suite apt on Friday what they've done & she'll sort it if they haven't done it.

@EachandEveryone did you enjoy your nail appointment? Mine are dreadful lately.

@Enigma52 have you heard anything further?

I’m still here in the salon my feet are a disgrace but it’s so painful isn’t it? I can’t believe how sensitive they are. The foot massage was amazing but I stink and I’m very aware. Since they changed the dressing regime I’m leaking even more and I was so optimist

@Okitsme welcome 🤗
Sorry you are having to join us, but welcome to this lovely group.
I’m Enigma53 (or 54/55/56!)! Stage 4 breast cancer, accompanied by an arse of a leiomysarcoma ( now named Davros from Dr Who! ) Currently in a bit of shit chemo wise ( it’s not working!) but don’t let that put you off posting.

Definitely keep it normal until it isn’t normal. My targets are simple; to make my daily morning coffee ☕️ and to see my daughter hit 21 in November.

Here we share experiences ( cancer and non cancer) laugh, cry, rant, grumble, swear, celebrate and much more! We are all on different cancer pathways, but support each other as best we can.

You will make it to Easter! 🐣

xxx

@EachandEveryone how are the feet looking? Sparkly and new? 🦶

@lucysmam I’ve been summoned back to clinic on Tuesday. Feeling rather scared. I joined the leiomysarcoma FB group, left as too scary, rejoined, now I think I’m leaving for good! 😬😳😱

Is the fb group that bad/scary@Enigma53 ? I think I tagged you as 52 up there ^ .

No, I meant my own shit show situation isn’t great, but didn’t want to worry anyone else who was joining this thread.

@Enigma53 I left most of the ovarian cancer Facebook groups I was on - too scary! Only stayed on the Scottish group in case it’s useful to me (info about trials etc).

@RedRosesPinkLilies yep, I left today! It made positively awful reading and although that may be my own reality in time, I don’t want to read about it now!

@lucysmam sorry, was getting confused ( doesn’t take much these days 🙄)

Yes, the leiomysarcoma FB group was terrifying, so I’ve scarpered! But I hope mine/ our experiences on here, doesn’t put people off joining us either.

Ha, tbf, it doesn't take much to confuse me either!

@Florsilvestredelcampo used a phrase once, I think. Something like informed denial? That’s where I live - I know where this is going, but I’m not stopping enjoying life

My cancer markers are down, but my abdomen still thinks it’s 6 months pregnant! I hate it!!! So can’t get away from reality, but have no intention of living in reality.

Often that’s what people don’t get. All the sympathy is all very well, but it’s not going to change things and I’d rather enjoy their company in that moment and not be the cancer person.

@RedRosesPinkLilies agree. On the “ outside” I appear “ well”. However,
“ Davros” the dickhead sarcoma, is pressing on every bodily nerve available and making my life a misery right now. I’m looking at my meds and saying “ pain or constipation?”’ Yep it’s constipation!

Feel free to ignore, scroll on etc. but was wondering whether anyone is hoping that the Assisted Dying Bill gets passed in the UK soon? I’m having my first taste of real pain this week and well, the thought of not being able to access a hospice bed and being in pain, fills me with terror. That said, I don’t even know if I could euthanise myself. No need to respond, I’m struggling this week and I know that a lovely lady whom I’ve been chatting to for ages, isn’t going to last long with this leiomysarcoma and I know it will be me next.

@Enigma53 I doubt it will be but god i hope it would - i would be first in line! I hate this non life and don’t know what i’m meant to be doing. I’ve done the live life till the full/do my bucketlist shit and the only things left i want to do was what i did when i had a life. I can barely walk now but my wheelchair is so uncomfortable because of the pelvic tumours it’s either bed or recliner. I have good friends, I have a loving family, I have decent finances but i’m done. There’s nothing i can do to hasten this to end. I have online counselling tomorrow and she’s great to talk to but all the MH tools in the world can’t help now. So after that outpouring of pish no one needed the answer is no - not any time soon

@EachandEveryone are you on?

I think at this stage it’s survival mode for you all, my 16 year old was stressed out his
mind for his Nat 5s (Scotland) but has figured it out for his highers (A Levels) 16 is still so young to be experiencing stress and I don’t thing they know how to cope with it. My advice would be take some deep breaths and try and survive this turbulent time sunnier times are coming when the exams are over.

@JoyousHazelHelper think you might be on the wrong page? 😀

@Whatevershallidowithmylife no I don’t think anytime soon either.
God this is all so hard. I’m mean what are people meant to do?? Suffer? But we don’t allow animals to suffer in the same way?

Did you get your room decorated and Roman blinds?

Yes just finished Big Brother

@EachandEveryone i was reading what you were saying about what the nurse put on your wound and i’m wondering if we have the same thing. Not a case of i’ll show you mine if you show me yours as i’m rather squeamish to say the least so i wouldn’t be able to look but would you if i uploaded a pic? DEFINITELY feel free to say no!!

I promise you it’s not my vagina. It’s the crease at the top of my leg a really awkward spot. It’s 6cm deep.

@Whatevershallidowithmylife I’ve posted see if it gets through the censors otherwise I’ll pm it on facebook

Well, I think I'm going to take some deep breaths and try to survive the summer @JoyousHazelHelper . I know you posted on the wrong thread but it made me giggle this morning, so thanks 🤣

@Okitsme welcome to the thread, although I am very sorry you find yourself amongst us lovely lot.
This is a great little corner to rant, cry but also have a laugh.

In regards to the assisted dying bill.
I hope it goes through sooner rather than later.
Not for myself, it will be too late for me, but I strongly feel that everyone has that choice when it is needed.

I'm OK but have had persistent stomach issues for the past couple of weeks.
This has set off my anxiety with intrusive thoughts.
My next scan is on the 11th May and I'm trying really hard to not let the worry get the better of me.

Love to all xxx

@GoldenDog1 sending hugs 🤗
I’m the same. Seeing oncology on Tuesday for a shit load of bad news. Give me strength!