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

@RedRosesPinkLilies there’s no one I’d rather travel on the train with, than you and our gang. They don’t sugar coat a thing; I must look like the type of person who can the brutality, I don’t know.

I’m glad you enjoyed London. I always feel alive down there. Also bald, no brows, no nose hair, no lashes and for what? Well, my heart is still beating, that’s definite! As long as there is breath, there is life!

Scan on Thursday; that means one thing, M&S jam doughnuts! 🍩

Good luck with chemo and for forthcoming scan results. X

The never ending parade of bad news is disheartening and I have no insight on how we are supposed to deal with it. Its often delivered in a way that makes you feel that the person giving the information has no thought for the human in front of them .
I had a nephrostomy fitted last time I was in hospital it has made me feel more comfortable.
Enjoy the doughnuts xxx

@Florsilvestredelcampo sorry for delivering shit news. I have no where else to go with this. The sarcoma FB group is beyond depressing. There are so few treatments for this type of cancer and I’m scared. I won’t post again now x

@Enigma53 sorry, it is all shit. How are you feeling this morning?

@EachandEveryone how are you getting on?

@RedRosesPinkLilies my nails separated for a while when on chemo, they did eventually grow back normally. Keep them clean & dry as thoroughly as you can after washing to try and avoid any nasties under them.

I know what you mean about resting as much as possible - I'm achey and tired after Manchester but need to go out for bloods. Usually I'd spend the next day or two doing as little as possible. Worth it though - we were right at the front so excellent view of the bands! & @EachandEveryone access made life so much easier! I was able to chill in the hotel until an hour before doors & they let us in early.

I honestly meant the news that delivered by HCPS to us as patients I'm so sorry that I didnt make that clear. This group is so important and we need it and I never meant to cause more distress .I need to be clearer in what I post I apologise again x

I’m exhausted every time I close my eyes someone else wakes me up to exercise. What pass did you get, the proper one your co sultan got nurse sign for? They are brilliant.

No! I emailed the venue to enquire about their requirements & offered proof of PIP, they were happy to add me to their list without seeing it which surprised me (I did email a photo, just in case).

How often are they waking you? That's not fair.

I know @Enigma53 and @Florsilvestredelcampo - it’s truly awful at this stage. And we are not treated like humans, or a partner in our own treatment. Some of the chemo nurses are lovely - but constantly change. You have to be so mentally tough to put up with this.

My Ca125 had doubled and is over 600. Scan was yesterday
in getting chemo that isn’t even working now. I do question the point in this. But feel I have to do it in case the paclitaxel is doing anything

Hopefully a new plan soon. Running out of options
xx

I agree, this stage 4 cancer stuff is relentless.
It can be so overwhelming at times.
Good luck to everyone going for CT scans and here's hoping for some positivity with the results.
I'm still waiting for my results, fingers crossed for Monday 🤞

All this talk of London is making me want to get down there for a couple of days.

Love to all xxx

Quite a few people have said to be when they did this life saving surgery to replace my femoral artery why didn’t they just take the tumor that was engulfing it out at the same time? I don’t know the answer to that. It didn’t even cross my mind.

Agree with @RedRosesPinkLiliesThe mental resilience required to deal with S4 cancer and for those cancers, in particular where treatment options are limited, is huge. Greater than anyone could imagine. I look at FB posts of colleagues, sunning themselves abroad during half term; they haven’t a bloody clue, no idea what it is like. The bitterness is real. Maybe I need to rename myself “Bitterandtwistedlikealemon53” 🙈🙄

That's a fabulous nn change @Enigma53 !

I tried changing once, felt weird🤣. Maybe I should try a musical one!

@GoldenDog1 I want to get down to London too! That’s next on the list!

@Enigma53 London is definitely calling after all the talk on here about it.
I'm hoping to go away for a few days during my next week off chemo in June and I was looking for something quiet and rural.
I'm now thinking London instead.

How's everyone doing today? I'm in wait mode for my injection appointment later 🙄. Might paint for a little while - I did a lot of base colours yesterday so could finish those off.

My niece and nephew have come down to visit they are staying in my flat so im pleased for my cats😃 they are going to see Stranger Things tonight which cost me £100. Train fare was £120 and I thought being in hospital would save me some money!

i hope im not addicted to ketamine after all of this. Its really quite lovely. The morphine doesnt touch meat all has anyone else found that?

How has Stranger Things cost you £100!?

Hate morphine. Would happily take cannabis right now though!

@Florsilvestredelcampo what does the nephrostomy entail? Looks like it’s on the cards for me.

It’s a west end show and I suppose they charge more because it’s so popular. They’ve got good seats which is my fault I just don’t like being up in the gods so thought they might not either.

yes I would take cannabis as well I wish it was on the nhs. I’d never be able to roll it I wish it was like in Amsterdam where you pick one off the menu

Ooh, I didn't know there was a show! I thought it was just a tv series, sorry 🙈

I've just had an MRI, treating myself to a KFC before I head home. It's so my surgeon can see whether he can safely remove any tumours when he fixes the broken metalwork in my back. I'm hoping to be able to wean off the morphine after the surgery - it makes me quite groggy and I often have to nap during the day.

When's your surgery scheduled for @SewingBees ?

I don't have a date yet, the surgeon was waiting for the MRI which has taken 3 weeks from being requested.

@SewingBees hopefully you don't have to wait too long for the MRI results and surgery 🤞
Scan results day for me tomorrow (hopefully).
I'll be mighty pissed off if they are still not there.
Feeling rather anxious.
I've had a hard, marble size lump pop up on my inner thigh, near my groin.
Il suppose I'll have to mention it tomorrow and whip off the old leggings so they can check it out.

Weather here is shit but I hope you are all able to find some joy in today xxx