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

@GoldenDog1 - I’m going to phone the hospice first thing and tell them the state I’m in. Worse since the drain. Can’t eat. In pain, breathless on exertion

Who will you see tomorrow, if not your nurse? I think you need to speak/ shout up for yourself. Insist on help
xx

@RedRosesPinkLilies oh I'm so sorry you are in pain and can't eat.
Hopefully the hospice can help you and ease your symptoms.
Do keep us updated with how you are xxx

If my nurse isn't there today I will ask the nurse doing my bloods if she can either pop in to see my consultant who should be there today as Monday is his clinic day at my hospital.
If not I'll ask her if she can email him with a list of my symptoms.

@RedRosesPinkLilies I hope the hospice will be able to make you more comfortable. Sorry you are suffering. It’s crap isn’t it x

@GoldenDog1 good luck today, I hope you get some answers. New symptoms are always a worry aren’t they? Hopefully it’s just a blip and things will get back on track again very soon x

I’m convinced this sarcoma has gone to my brain. 2 episodes of sickness and headache, a week apart. I want an MRI of my brain now. God I hate all of this so so much 😢

@RedRosesPinkLilieshow did it go?

@RedRosesPinkLilies I hope the hospice were helpful?

@EachandEveryone how's things with you?

@lucysmam @sellotapechicken I phoned the hospice late morning, but haven’t heard anything. Which is not a big surprise. So still lying flat a lot. But feeling a bit brighter.

Trying to eat soft foods that fit in my squashed stomach more easily. We had a roast dinner last night and I didn’t eat much, but what I did eat just caused discomfort.

I took sleepeze tablets from Boots in the end. Old fashioned anti histamine. For me they work really well. And I can just buy them rather than having to ask for them and be refused (obviously we wouldn’t want someone with terminal cancer to get dependent on sleeping tablets. They should feel every ounce of suffering)

I’m getting really bitter!

No, not a surprise, but shitty. Because, of course, why would you appreciate a timely response 🙄. Utter shite!

I've never heard of sleepeze - do they literally do as the name suggests?

Sleepeaze tablets
diphenhydramine I think
work well for me. But make sure you don’t have to be up early

No good for a work night then! But maybe they'd help with the wakeful night's sleep when I don't need to be up 🤔. I'll have a look for them and read the packet next time I'm in town.

How is everyone ?

Still feel a bit queasy. I hate that most people would think a bug/ gastro issue etc. I’m thinking brain tumour! 🙈☹️

How are you @sellotapechicken when’s the big surgery?

All good (well, good as it gets) here. We're waiting for the train home from birthday gig 7/12 for dd1 🎶. Straight home & bed for me - off on a school trip tomorrow.

That’s understandable!

im talking to the surgeon again on the 25th. No date yet for surgery though. I know it needs to be soon I’m just so scared!

Our house nearly caught fire tonight. I feel so shaky still! A beer can exploded in the kitchen and I actually shit myself and thought something had exploded and the electrics hadn’t tripped so I inspected everything as I didn’t realise it was a beer can exploding. Check the lava lamps and the google home hub and the home hub was smoking

completely unrelated to the loud bang but I noticed it before the smoke alarm noticed. Threw it outside and turned the hose on it!!

How is everyone?

I’m ok how’re you?

Plodding on here...slightly melted!

@EachandEveryone how are the glasto plans going?

I’m here. Had a semi permanent peritoneal drain put in yesterday- basically it will be permanent I don’t know why they say ‘semi’
Drained 6.5 litres whilst I was in. Really great care in the local hospice.
Now Im home and keep falling asleep - my body probably doesn’t know what’s hit it these days.

@RedRosesPinkLilies 6.5 litres? Wow! I’m glad you were treated well in the hospice. I find they are so so different to cancer hospitals. I went for reflexology at my local hospice today. They treat you as individuals. The reflexologist treated my feet as if they were the most important feet on the planet ( yeah that sounds weird I know) but you get my drift.

@sellotapechicken have you recovered from the burns and bangs now?? Bloody hell, I would have frozen with fear!! 😰

@EachandEveryone how are you getting on?

@GoldenDog1 and @Florsilvestredelcampo I hope you two are okay?

@lucysmam any luck with houses yet?
Melting here too. Can’t cope with heat or cold! 🙄

Plodding on in some weird bubble. New chemo starts next Wednesday. Fucking petrified!

Love to all ❤️

Urgh, spoke to my friend last night. She's in for a lumpectomy on Thursday, then radio when she's healed..."and that should be that". She's understandably stressed, but is asking me questions I can't answer & telling me all about how it was caught early <sigh>.

Anyone for a Friday 🍷 while I'm off to the shop?

@Enigma53 yes, I think we have a house sorted 🤞. It has a lovely kitchen too - I'm considering my weekend brew spot 🤣. I've acquired boxes to start packing...dd1's going to help me tidy the garden one afternoon next week (once we purchase gloves for spider protection!). All systems go! I just have zero go to make much of a start right now.

You'll all miss out on the wine at this rate 🙈

I've just had a good moan at my best friend over the phone & drunk 2 glasses. I am stressed af! Rollllll on crying in the shower time & silent cuppa time tomorrow morning ☕️.

I'm not doing well right now, can you tell 🤔. I need processing time!

@lucysmam what’s up? Moving house? X

@Enigma53 I'm ok thank you.
My consultant wants me to have a barium swallow.

My appetite has returned a little and my stomach isn't as sore at the moment.
My upper GI nurse said even though I'm feeling a bit better I should still have the test.
I agree because with all the stomach issues I keep getting at least they will be able to see if my new opening has narrowed or not and check food and drink is going through OK.

With all that talk about London recently my son and I have booked a few days in London next week.
I can't wait.

Love to you all xxx

@Enigma53 think so! There are 2 weeks til (probable) move day. Worried about my friend, who will be fine, too. Not a clue where I am next year in school.

Maybe just...everything, actually. My brain is full & not enough time to mull it all over.