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

Has anyone had the conversation with you gier oncologist about how long they have left? I haven't it's not something I want to hear. I was asked today and I'm not sure if it would help me or not.

No. I can’t face that kind of mental shit right now x

That's how I feel

Seriously, do oncology have a crystal
ball. We will know when we’re on the slippery slope down, we don’t need to be told ( I don’t think ?)

To give context I was asked during a meeting with my son's HOH while we had were talking about how he would be supported at school through all this. She was very sensitive and helpful Her question just made me wonder.

I’ve had that conversation and it’s very blunt and hard to hear. Thing is we are all individuals
But also we need to be realistic - especially for our children. I think you’ve maybe got an idea yourself - without hearing it from an expert.
I suppose right now I think I have 6 or 9 months if things go badly. Ie; chemo stops working and other treatments don’t work
But also I posted on a facebook group and someone in a similar position has had 8 years - she has been switched from last ditch treatment to last ditch treatment and they have worked
So we don’t know.
Supporting our loved ones isn’t just at our end - it’s through our whole horrible journey.

Yes, it’s certainly thought provoking.
I just think we will “ know” when time is almost up. That said, those last ditch treatments can turn up at the 11th hour and work. I’m bitter that I’ve been forced do face my own mortality and it’s hard work shielding our loved ones when all they want to see and hear is positivity.

Pass the wine @sellotapechicken
🤣 🍷

I can’t and won’t think about it.
i have constipation I just can’t do it in a strange bathroom.

Prunes?
kiwi?
laxatives?
sugar free sweets?
pineapple juice?

Do you HAVE to poo at hospital?
When will they let you home?

@Florsilvestredelcampo yes I had that conversation with my Oncologist after I had my surgery and was told I was no longer "curable".
He was very sensitive and reminded me that nobody can actually tell me when I will die.
I was very upset when he gave me my prognosis, but weirdly after the initial upset, I didn't get hung up on it.
Also, when I received my prognosis it was based on me having 8 cycles of chemo.
As I'm now into my 18th cycle, I suppose the initial prognosis went out the window.

I have no desire to have that conversation again.

Nope, I have no desire or inclination to know. I'll carry on til I can't carry on any more.

Having a shitter of a week here, everything's all wrong 🙄

I’m still in hospital. Drain has been removed so of course the site is now leaking like mad. They are keeping me in as they want to try and find a solution to the leaking. I still haven’t BO because of the strange environment I’m in. Everyone that visits can’t believe how well I’m doing considering I nearly bled to death a week ago. I feel very detached. We have a m and s but not stocked great because of the cyber attach. I’m on the black coffee and can’t stop thinking about cigarettes. I’m even dreaming about them as I know they would get my bowels moving. It’s been years I don’t know why I’ve become so fixated. I have stents in fgs!

This is not related in any way but I need someone to help me with how I put this to my Head Teacher please!

So, in today's briefing minutes it suggests that staff with a 1:1 role can approach the HT if they'd like a change. Now, I don't totally mind what I'm doing now, but I would like some actual classroom based time. I enjoy my little phonics group. I like working with the children I do Speech and Language Therapy with. I quite like doing literacy with my 1:1 child and then activities around/related to what we've read. The 1:1 isn't really a problem any more, but a bit of classroom time would be good too!

Do you reckon just literally say to her that I'd like some classroom based time too? I don't want to come off as a moany bitch. But actually, I do spend time with the other children anyway, but am the "forgotten" TA because I'm with one child for a good portion of my morning. Instead of doing TA jobs.

Any sign of a bowel movement @EachandEveryone?

@Whatevershallidowithmylife are you okay? xx

Maybe post this in the staff room forum? They are usually pretty helpful in there? 😊

Not sure I can cope with being told to suck it up, or I'm a moaning Minnie, or anything else right now @Enigma53 , but thanks. I'll nip & see her Monday & see what she says.

probably STFU in a nice way. Then I'll cry some more 🤷‍♀️.

Anyone got a tiny violin I can borrow ffs? I am irritating the fuck out of myself this week with my woe is me bollocks!

(Not helped by someone taking something of mine from my chest of drawers without my consent. My reaction was "do you think I'm dead already & you can go through my things taking what you want?!" . Ffs. It was not a small/unimportant item. & they have no fucking clue they did something wrong).

Anyway...fucking moany bitch sending myself to bed for everyone's sake!

My friend lost him mum suddenly at Xmas and he is still so bereft as he has a right to be. However he is still in her house abroad and he won’t come back. He is my dear flat mate and I have his two cats. He keeps saying he wants to be with his mum. He texts me every night with this saying he doesn’t want go
live and I don’t understand. It’s really upsetting me to be honest. I love him dearly but I really can’t shoulder his pain ☹️

Morning everyone 🌞.

Sorry for last night's drivel...was feeling v v sorry for myself 🙄. Anyway, booked a cheer me up gig...have plans to wander to the market shortly. Much better this morning.

How are you all?

@EachandEveryone that sounds like hard work.

@Whatevershallidowithmylife hope you're doing ok?

@lucysmam enjoy the market. Glad you are feeling better.
@EachandEveryone sounds tough. Is he your flatmate? Maybe he needs some therapy/ support?
@Whatevershallidowithmylife really hoping you are okay? Xx
@GoldenDog1 glad you are feeling better 🌼 enjoy the sunshine xx

Pretty fed up this end. Leiomysarcoma is a horrid beast and I just know by my pain, that doxorubicin isn’t working for definite. I hate not having hair. I hate not working. I don’t know who I am these days? I often think about my cancer free days and can’t quite believe this is where I’m at.

Oh and one of the loveliest of ladies whom I was chatting to on the secondary breast cancer fb group, has died. Yep, it all sucks.

Was watching the 80th anniversary VE Celebratory programme in London, last night. One man was 107.. 107??

@EachandEveryone It sounds like your friend is in need of some support.
However I do feel it is unfair to put that on you with everything you are going through.

@Enigma53 sorry to hear about your friends passing.
Big hugs xxx

It is one year on Monday since my lovely friend/colleague passed away.
I still can't believe it.
We were diagnosed within a month of each other.
It definitely all sucks.

CT scan for me tomorrow.
I've decided that I'm only going to let them try 3 times max to get the cannula in.
If they can't do it after 3 goes at it, I'm going to ask them to give me another appointment during the week so I can go to Oncology to have it done.
11 attempts it took last time radiology did it and I was Black and Blue.
I'm not putting myself through that again.

On a more positive note....
I had a lovely few hours in the sunshine today having a picnic and a wander by Lake Windermere.
Afterwards my brother drove up to see me which was nice as I've not seen him for a couple of months.

Knackered now so will be having an early night.

Love to all xxx

band in itu massive bleed from femoral vein again I don’t know how this will end. I suspect I will lose my lego

@EachandEveryone omg! No, you can’t lose your leg surely. What’s happening?

@EachandEveryone oh no, I hope you don't lose your leg.
Keep us updated, we are all here for you xxx

Thanks it’s a shitty position to be in