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

Thanks all for the support! I think I am going to go for surgery

@GoldenDog1 yes, I mentioned it at my most recent oncology appointment. She didn't seem concerned in the slightest 🤷‍♀️

Stay in London! Free tickets? Egg and salad cream sandwiches? Hell, you wouldn’t get me moving! 😆
Could you qualify for a council flat maybe?

Yes I can drink fluids through a straw, thankfully. It’s just a complete headache. I may ask oncologist ( number 8!) next week, if i can delay chemo next week too!

@GoldenDog1 thanks, I do have the gelclair sachets, they make me heave though. I’m crap at all this self care stuff, it’s just too high maintenance for me. Laxatives, immodium, gelclair, Difflam, movicol, prunes… bloody hell! 🤣

Whilst recovering, you are going to start writing the “ Confessions of a surgeon” book, yes? Don’t forget to give us all a mention 😆📚📘

I know I’m sick of the nurses asking if I’ve had a poo. I didn’t realise hospital toilet seats were uncomfortable. I’m not going to have one I just know it so I’d rather not think about it.

yes I hope that you have all got the Nimbus cards it’s saved me a fortune. www.nimbusdisability.com/services/access-card-and-nos/

Will you return to nursing?

gah.. no eye brows or lashes or ANY hair now! The look just keeps on getting better!

@Enigma53 i have lost eyelashes at either end of my eyelashes - so just have some in the middle. Probably looks so silly, but I’m grateful to have them
Eyebrows have thinned considerably- lucky for me they are so dark - it looks like I still have some.
I have fuzzy white thinned hair, it used to be brown.
Chemo is not a good look 🤣

I must admit I’m loving the blading even though it is painful

When I was in recently the nurses came round with the Bristol stool chart on a i-pad and you could self select🤣

I'm intrigued by the Nimbus card! Excellent sandwich choice earlier @EachandEveryone I made one before I dragged dd1 to walk with me...she was rewarded with a Koppaberg for her efforts!

You know I get free carers tickets for everything including Glastonbury you will really benefit as your daughter can go as your carer

Really!? Well, you learn something new every day! I'm just going to shower and put pj's back on, then I'll look into it.

I have enquired about accessibility for our Manchester gig - I haven't got queueing in me really but am doomed to back of pit if we arrive everywhere at doors which is unfair on dd/both of the girls. They warned me there are no accessible tickets available but I can speak to security to be allowed in slightly earlier. I've asked if both girls will be able to join me & offered proof of PIP if needed 🤞.

You see that’s why you need the card. Get your consultant to sign it. And tell him what he needs to tick they honestly don’t care 😀

I’m never posting on a thread on Mumsnet apart from
Here. I am having the surgery in July and I will be in hospital for my 34th birthday but that’s fine. I haven’t added anyone on Facebook because im so used to being so anal about social media but fuck it, life is short and actual friends are quite rare! Thank you for being there for me, and if I can be of any help in the group or whatever please tell me :)

It’s brutal out there!
I’ve been flamed on occasions, for asking seemingly normal questions!

Keep us updated! ❤️

@sellotapechicken I know it’s a while away, and doesn’t need saying - but keep us updated. X

Mumsnet is weird. I can’t remember why, but I mentioned having Stage 4 cancer on a thread - and was accused of lying 🤣. I think I challenged another poster - maybe it was to do with life perceptions. I really can’t remember. It can be really nasty at times

@sellotapechicken I know it isn't until July but I just want to wish you all the best for your surgery, and yes please do keep us updated.

@Enigma53 yes I found the gelclair pretty disgusting too.
I found putting it directly into my mouth rather than mixing it with water worked better for me.
How is your mouth today?

I don't post on other areas of these forums.
I find that some posts just wind me the fuck up so I stay away.

I'm feeling rather emotional today.
I had such a good week last week, feeling really well and 'normal'.
Yesterday's chemo has brought me back down with a bang and reminded me that my life is far from 'normal'.
I have been up all night feeling really sick and my stomach hurts.
I've got pain in my muscles and I feel unsteady on my feet.
My mood has completely changed.
The joys of chemotherapy eh?

Hope you are all able to enjoy this lovely sunshine today xxx

Huge hugs @GoldenDog1 ❤️❤️
I really hope you feel better soon. Cancer is such an entire head fuck I’ve realised( finally! 🙄) When you feel good and well you are lulled into this false sense of security. Then, it hits you again, like a rocket! It’s so unfair

I will try the gel clair directly on my mouth later and see if that helps, thanks.

@sellotapechicken there are some nasty and lovely people who use this website, I’ve discovered.
Stick with us kiddo! ❤️

Well, I’m truly in a conundrum re: work. Today I feel I could work. Next week
( chemo week) will be different. Mri results, bloods, oncology and pain management appointments, all next Tuesday on my bloody birthday!! Chemo on the Wednesday and then boom!
Still got my pressure pain, so im
guessing chemo 3 didn’t do much either.

Ah well, enjoy the sun everyone ☀️☀️🌞🌞🌞

@Whatevershallidowithmylife are you okay? X

Had my 17 th chemo today - paclitaxel
Ca 125 has gone up slightly again. From 142 to 168
I suspect some part of the thing has become chemo resistant. But won’t know for sure till a few more blood tests (weeks) have passed +/- CT scan result
Utter torture. Am expecting the worst so that anything else is a bonus

Meanwhile weekly chemo continues and because it’s weekly I don’t even fit the schedule for weekly pre checks. So they keep not giving me an appointment and telling me they will phone me with one. So I can’t even plan to do things with my shortened life on a Monday / Tuesday as I have to wait and see when a five minute appointment is

@RedRosesPinkLilies it’s all a long, rambling, head fuck of a journey. The twists and turns, bloods, CT scans
( contrast dye where you have to drink the earths supply of water in an hour!) the waiting, the delays, the head tilts, the patronising clinicians, the constipation and whatever else is chucked at us, along the way.

Thank goodness for cornettos, crisps and wine!

xxxxx

I think I love you @Enigma53 ! You do make me laugh! X