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

Im so, so upset and I dont know if im being irrational.

im waiting to go to rehab. On the round the consultant said lets get your catheter out I said great but i will need help getting to the toilet as Ive been using a commode. A nurse Ive never seen piped up “you can goto the toilet Ive seen you go and the physios said you can walk there. Ive had two physio sessions one to show me how ro get to the end of the bed the other to show me how to transfer tonthe chair. And now its BH. I said I really cant. Then a nurse who knows me said she can go to M and S and everything. WTAF???? I could go to m and s after my first bleed when the stents were put in but after i nearly died when my femoral artery burst its been a different story how dare she say im going shopping when i can hardly put my foot on the ground.

surely the right thing to say was”before this she could go down to m & s and she is going to rehab to hopefully get back to the same fitness level”

now they've come back to me asking to text my consultant to find out when my next immunotherapy is! Hows he supposed to know he said when the wound dries up which it has. Im so embarrassed texting him when hes probably out with his family. She stood over me and said i cant be discharged without it.

WTAF I'm not sure how nurses are being taught to communicate these days even basic human compassion would tell them it's not that way.
@EachandEveryone I'm so sorry you having to deal with that on top of everything I wish I could come and give them a piece of my mind!

i know and bless my poor consultant he text back and said 10th June straight away. It’s a wonder he didn’t tell me to Buggar off

Wow Those nurses need to go back to nurse training school!! 🤬

Good that your next treatment is soon. When can you go home??

Well I’m waiting for transport to take me to physio rehab it’s a live I situation I think it sounds quite posh own room etc. I just hope they can deal with my pain etc. they will have all my meds. I hope the food is better than the rubbish here. And I hope they aren’t mean to me 😀😀😀 I keep thinking of private Benjamin that they will stand over me and shout TIL I get up and do twenty press-ups

what an ordeal the stuff we have to go through . I keep thinking it’s nothing to do with the cancer then I have to remember it’s the cancer that ate through my vein causing it to burst 😞 where is it now? I hope it hasn’t been disturbed.

I know. I keep trying to pre empt where
“ Davros” ( my cancer) is. Still only in my pelvis ( I hope!!)

Let’s hope you get away from “ bossy nurse shitty food “ land quick!

Yes I hope mine still in pelvis have they ever seen it on scans near your femoral veins..?

I long for a piece of Kentucky chicken. Just one piece. I hope we can order in.

Christ I hope it isn’t near any veins!
Thursdays scan will tell. I know it’s attached to my vagina!!! 😱😱😱

Hope you get your KFC.

Mines not attached to my vagina but I have had a hysterectomy

I’m in the ambulance are you enigma with those bunnies?

Omfg I’ve arrived and they are saying I have to go back as my hospital knew their doctors finished at 4 and no one is here to write up
my meds.

Yes I have the bunnies

Omfg!! What a nightmare!
So stuck for another night now?

No I’m refusing to go back can you imagine if my bed had gone? By the time they’ve admitted me it will be midnight. My hospital knew damn well though that the doctors finished at 4 and wouldn’t be available.

i have a very good friend bringing contraband in.
the food is amazing here. I have my own bedroom with a tv and a bathroom. They said I can wake up when ever I’m ready😀😀 I’m staying!

Get the KFC ordered, I’m on my way! 🤣

I’m lying here sweating waiting for a doctor to come and write my prescription up. I’m in so much pain this can’t be right.

Have you got pain relief now ? Are you still in the rehab or did you get transferred back to the ward ? I’m sorry you’re having such a shitty time of it.

Ive had a lot of pain this weekend. I spent most of it in bed. I got dressed once to go to a new all you can eat Indian buffet that’s in the pyramid in Stockport. That was absolutely cracking and my friends and DH stuffed themselves silly. I just had a couple of starters and enjoyed the atmosphere. Then we went home at 9 and I went back to bed. I feel for my lovely husband as I really don’t have much energy to do anything at all at the moment.

it really is the shittiest. I’ve got a lot of breathlessness at the moment which is new. Not sure if I can bring myself to call the Christie helpline as it’s a minimum of a day out waiting around and when you feel shit it’s a lot!

Hope you all had a nice weekend.

It was our 9th wedding anniversary this week, and we celebrated with a glass of champagne with the fire on as this weekend has been in the words of my Scottish husband ‘Dreich’

I’ve got clinic on Thursday and I really am shitting it

Still at the rehab in a bed whose remote doesn’t work. Doctor has just turned up it’s 5am and the nurses are arguing that they won’t give me the drugs I’ve missed invluding the blood thinners. That’s not going to go down well with me. I wonder what hourly rate this doctor is on? A lot I imagine. He’s not like a frazzled nhs ward doctor.

I really want to ring the ward up and tell them that they knew I wouldn’t be getting any drugs after 4pm yet they still couldn’t get me off the ward quick enough.

god this kind of nursing is a doddle I can’t say I feel exactly safe here. They’ve obviously had good kips over night.

happy anniversary I must tell my niece about the Indian place. It feels surreal going for a night out 😀

@sellotapechicken I thought you were
on the mend with the lung melanoma? Did immunotherapy not work? When’s the big surgery? Hope you feel better soon. It’s all a pile of shit. Today I’m thinking WTAF is happening to my life!!

@EachandEveryone how’s it going in hotel rehab? 😉

Shit day so far. Banging headache, took ages to get my stupid pain under control last night. I wish this sarcoma would fuck off now. I’m not surprised our @Whatevershallidowithmylife had had enough, bless her.

Hope everyone else is okay x

It’s pouring down here. I’ve been forced to excercise 😀. Everyone is nice enough but they just leave you to it really. Like dressings and drugs you have to tell them basically what to do.

@EachandEveryone did the exercises fulfill your private Benjamin fantasy?

Well it was two women and a very gentle student who must’ve been 15! God I keep looking at uber eats I just want one piece of chicken 😀 I just don’t know if they would deliver to the wards or what address to put

Well just had THE most depressing phone call with sarcoma doctor. Basically my kidney function is starting to struggle, nephrostomy bag more than likely needed. outcomes are poor for leiomysarcoma and treatments just give a “ bit of time”

How does one even process such shit information??

@Enigma53 I have no idea. That’s crap. And they really don’t sugar coat it, do they? I’m sorry. Any use asking how you feel? Lots and lots of love. X

I had my CT today - more chemo tomorrow, even though this one has probably stopped working.

I’m definitely getting more tired. Weekend in London was great, but I couldn’t rest as much as I normally do - basically because we all put a show on (or try to). But it was definitely lovely to have a mini holiday.

My nails are also suffering- I think they’re starting to separate from the nail bed. Any ideas?
Beauty is only skin deep, except I’m rapidly losing any skin appendages which might enhance my appearance. Bald, barely any eyebrows, and soon no fingernails.

@Enigma53 what I meant is how are you processing the conversation? Angry, sad etc? The whole situation is truly awful and we are all on the same train.