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

Fucking hell...who activated moaning minnie me tonight <sigh> sorry!

@Enigma52 well, if it’s any consolation, I don’t even know whether I can return to school next year. I face a future on lifelong treatment or until death. Yeah that’s shit. Pass the wine
( what’s left 🍾🍷) Hopefully your friend will be fine 🤞🤞 Are you renting or did you buy a house? I’m sure once you’ve packed, moved and settled, all will be good.

I’m ok thanks. My cats are really clingy and one has lost all the fur on her inside leg☹️ I feel terrible about leaving them next week.

had a vascular follow up today. Could surgeons be anymore arrogant? My leg is killing me and like a tree trunk although it’s fine in the morning now I have a great wedge pillow. He more or less said well you could’ve lost it or died so you will just have to put up with it. Great. He made it quite clear he did save my life and of course he did but he didn’t cure the cancer did he? Anyway glasto plans going ahead I don’t care if my friends just plonk me in my very expensive chair near some music and leave me. Yes, Vapes will be involved. I believe I can’t drink on my meds which makes me sad as I haven’t had one for two years. I will need something. Good job it’s not fashionable to smoke anymore or else I’d be taking a pack with me. I’ve come to the conclusion that abit of what you fancy is alright. I just hope it cools down by next week.

Just watching Isle of Wight it’s been very good

I feel like I’m melting

Who did you watch @EachandEveryone ?

@sellotapechicken snap!

@sellotapechicken had my appointment. Oil to start with. The cost, I cannot justify.

how much is yours? It has made a real difference to my sickness and pain.

Not sure yet @sellotapechicken will find out this week.

Mine is £80 for 30ml of oil and £45 for gummies if that’s any help? Xx

Mine is about 80

Yeah I reckon that’s what mine will be too. I feel sick from this oxycodene and just generally “ meh”

I'm knackered. I've been spreading myself too thin. Trying to coparent with an ex who still hasn't submitted info to our mediator so we can discuss financial split and custody arrangements. Very very busy at work (full time). Doing bits and bobs of decorating pre house valuation. A new bed delivery. Getting daughter ready for first ever school residential. And a gazillion medical appointments, scans etc to prepare for next week's back operation. And constant pain through it all.

I keep thinking about when people say that no-one with cancer needs to die in pain thanks to modern medicine. But we bloody have to live with pain don't we?

If this operation doesn't help with the pain I'm going to explore the medical marijuana options, I just need to be certain that it's compatible with being a single parent.

Rant over.

@SewingBees rant away! Life sounds stressful. You are juggling lots of plates. Pace yourself ( I know it’s easy to say) and I’m not a single parent working full time.

Honestly, there’s a group of us on the chronic pain board under Curaleaf. I’m going for it. I won’t be tied to all these grim meds with their equally grim s/effects, if there are alternatives, I will try!

What day is your operation?

@RedRosesPinkLilies how are you? X

My operation is on Wednesday next week but my lovely surgeon has arranged for me to be admitted on Tuesday so I don't have to get a £100 taxi to get there for 7.30am. I'm first up in surgery because I'm the most complicated and he wants to take his time to get as best an outcome as he can.

The operation is going to be bigger than anticipated because bits of (now useless cancer ridden) vertebrae have shifted. I was measured today and I'm 6cm shorter than 2 years ago. I shall ask lovely surgeon if he can restore at least 3cm.

He apologised today for the fact that the post op recovery will be painful. He said I'd hate him on day 3 when they take away the good painkillers. Actually I bloody love him. He's the best medical professional I've ever dealt with.

And I'm taking a secret stash of zomorph. I'm not putting myself at the mercy of incompetent nurses who 'forget' when you've asked for oramorph in the middle of the night, or just don't bother answering the buzzer.

I agree with you take as many drugs in as you can.

i was kidding myself about Glastonbury. I’m in so much pain. I can hardly walk my foot is so swollen I don’t know what I can wear with it? Anyway my best friend text to say she’s booked us an Airbnb in Frome because she said I’m never going to manage going to toilet during the night on my own in a tent. She’s amazing and won’t take any money. So we will do a mixture of glamping and Airbnb. I just wish I could get on top of the pain. The nurse has told me to take ketamine four hourly and oromorph as needed. Oromorph doesn’t touch me. I can’t drink on my meds btw!! I don’t think I can even have one. Anyway I’m here and I’m going to enjoy it or put on a happy face at least. And just moan here.

@EachandEveryone Will you go to Glastonbury during the day and just stay in the Airbnb at night? It sounds like a good compromise.

I was in a lot of pain last night - possibly partially psychosomatic after seeing the state of my poor back on the MRI - so I had some oramorph before bed. I then had some awful dreams and have woken up feeling really sluggish.

Empathy for those of us in pain. I too was awake early, scrabbling for the oxycodene. It’s not fun.

@EachandEveryone I hope you will be okay. I wish I had a friend like yours. She sounds lovely. Take it easy. Have you got your cannabis?? Can you increase the oramorph?

@SewingBees Definitely take your stash of pain killers. The nurses all too often “ accidentally “ don’t hear the 3am pain buzzer and that’s shit.

Sorry I’ve not been posting- I know someone asked after me, but can’t find it
Had a drain put in last Wednesday- took out 6.5 litres over the two days. Been left exhausted and breathless over the weekend. So maybe that’s fluid physiology redistributing itself (too complex for me), or maybe it’s cancer.
im a little better now, but have hired a wheelchair to hopefully go to my son’s graduation.
I did discover how many friends disappear in an hour of need. DH has been away in this time (back now), but absolutely most friends who said they would help have disappeared. Particularly one - does hurt, doesn’t it?

One friend really came through- travelled from another city to stay with me. So I’ll treasure her. Xx

Yes we are lucky to have some close friends you find out who they are at times like this. My sister has been to stay and was a help but I wish we gelled more. She’s the earth mother who did everything by the book and has a beautiful family. I was the one who never quite got it right and ended up on my own but very happily. We just don’t have much banter between us. She’s not very open minded I guess. Anyway she thinks I’ve improved. I’ve put a big trainer on today and I’m hoping my foot won’t swell too much.

oromorph doesn’t touch me. It’s the ketamine need really. I feel that the GP are dragging their heels to prescribe it even though it was on the discharge letter.

@EachandEveryone My sister and I have a similar relationship. It takes work for us to stay in touch and not piss each other off. We are different people but we'd do anything for each other. She's going to look after me once I get out of the hospital until I'm able to look after myself. We're going to see Tim Minchin tonight!

This thread is nearly full so I've created a new one, hope the title is ok https://www.mumsnet.com/talk/life_limiting_illness/5361108-thread-6-living-with-incurable-cancer-taking-all-the-drugs-and-remembering-our-fallen-comrades