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

@Enigma53happy birthday!

Happy birthday @Enigma53 🎂

@lucysmam mine was always DIY.

@RedRosesPinkLilies your photos on Facebook are stunning.
Well done xxx

I'm off up to the hospital for my chemotherapy now.
I hate that I walk in there feeling ok and walk out feeling like shit.
Sigh! needs must.

@GoldenDog1 what brand did you use? Hope chemo goes ok.

@Enigma53 happiest of birthdays to you 🥳xx

Crikey @RedRosesPinkLilies that's some effort!

I'm just about to get sorted for cheer me up gig 🎶 . Shower, clean clothes, off for the train 🚊

Feeling deflated and sad.
Really haven’t any more strength for this ☹️

@Enigma53 I know it doesn't feel like it right now, but you are stronger than you know.
How did today go?
Here if you need to talk xxxx

@lucysmam I've used a few different ones but my favourite was the Schwarzkopf Live. If I remember correctly, it had a built in pre lightner that I loved.

@Enigma53 I agree with @GoldenDog1 you are stronger than you know. You’re always asking after the rest of us. You also don’t need to be strong all the time.

You don’t have to actually be strong - you have to be kind to yourself and appreciate what is good in life and love yourself. We know on this thread what our reality is.

Dont be unkind to yourself and criticise yourself. It’s awful what you are going through. If you can do the things that bring you any joy just now that is good.

Lots of love. Xxx

I have spent a significant part of today on the sofa. The dog has also refused to walk far.
Chemo tomorrow and the lottery of finding out my Ca125 level…

I'll have a look at that one, thanks @GoldenDog1 . I used Bleach London because it says it colours without bleaching first but that sounds better maybe?

@Enigma53 I'm so sorry you're feeling so down. Also here if you need to talk xx

We're just on the train home from seeing Bradley Simpson of The Vamps fame. He was surprisingly REALLY GOOD!! Some folks have zero concert etiquette though, talking through the opener & trying to shove their way through the pit 🙄. It's not on! They may not be your cup of bloody tea but someone in the crowd wants to HEAR them!! People are irritating as shit ffs!

Thanks all.
I’m so scared. I’m scared because there are only 4 treatments for leiomysarcoma and treatment 1 has battered me, but not the cancer! Yesterday my kidney function blood result was off ( the tumour is pressing on urethra ) and there is a small collection of fluid around kidney, so they want me to repeat bloods next week. I can just foresee issues going forward now.

I hate it all.

@Enigma53 of course you're scared lovely.
It's all so much to face.
The first chemo I was on, that battered me also but not the cancer.
I was told there was very limited treatments for me.
This chemo, and possibly one other when this one fails.
I was terrified, still am, but we keep trying and hopefully they find a treatment that works for you.

Sending you so much love, strength and positivity xxx

@Enigma53 That's what happened to me before they fitted the nephrostomy. The tumours in my abdomen were pressing against the ureatha and stopping my kidneys from draining.
I was terrified,when they first spoke about ithe nephrostomy.,2 and a half months later living with it is not so bad.
Part of the reason I was so scared was to me it represented another fundamental that my body wasn't doing because of the shitty cancer. I cried from the minute the porters picked me up and all through the procedure .
Because of the uncontrollable crying I was unable to tell the staff why I was so upset so they assumed I was worried about the procedure which hurt my pride!
Xxx

My Ca125 has risen to above 200 - so chemo is starting to not work. I have emailed the Consultant to ask about next steps.
They might continue paclitaxel for a bit - in case it’s doing something
After that there’s two treatments left - maybe a trial drug, but that’s not till next year. I think this is an aggressive cancer - and things could change quickly.

It’s really hard. I feel well - but apparently I’m not. Hard telling others - some are overly sympathetic and have gone to my demise already. My mother sent me a picture of her and my aunt having lunch out. I sent a message saying ‘lucky you’…change the letters 🤣

So greatful for this thread. X

Yes this is how I feel.
Bit by bit, this lump of utter shit, is taking things from me. In my head, I scream, well bloody take me then, don’t dilly dally! Get on with it! It’s taken my job, my confidence in my body, my hair, my ability to live without fear and reduced me to exist scan to scan, appt to appt, chemo to chemo. That sounds negative and dark doesn’t it?

So, tomorrow, I need to find joy in something.

Sorry, but anyone reading who ISN’T S4, will NOT have a clue what i mean.

On a brighter note, I did go out today, with only ONE eyebrow drawn on and wig on back to front!! 🤣🤣

I do feel the same. The uncertainty with ending one treatment and having to start another. There are tales of these last ditch treatments working..but unlikely.

I was meant to be meeting a friend for lunch tomorrow- and in light of today she was asking do I still want to meet?
Of course I do!!! It’s very nearly now or never!

You really don’t get this situation till you are living it. Stage 4 and incurable is a completely different ballgame to everything.

I have a relation who has some kind of incurable slow growing skin cancer. But she won’t die of it. Not the same.
Its one thing living with cancer, a completely different situation knowing that death is too flipping close for our liking. And too unpleasant a process.

It’s a victory to continue to enjoy life - no matter how small those victories are.

@Enigma53 For me the loss of the things that make me ,me has been so hard . All the things you listed plus my ability to enjoy a walk, not being able to take part in Parkrun breaks my heart every Saturday. Our cancelled summer holiday because planning with stage 4 cancer is impossible.
It does make me question if I want to pursue more treatment?
I hope you will be successful in seeking some joy today it's another gorgeous day today and I've got a friend coming for coffee so that's my joy for the day. I will also allow myself a little chuckle at the thought of you going out with a backwards wig and half a set of eyebrows! It does sound exactly like something I would do.

Oh you lucky things with your real coffees😀 I’m back on the ward now. I just hate it I was quite clear that I needed my pain meds every two hours so that I can start to weight bare then I can walk. The mid night dose came to me at 3am I had been up all night waiting for it. I’m so pissed off because at home I’m in control of all of this.

I'm so sorry to everyone experiencing such a hard time at the moment.
I agree with everyone about trying to find joy in the little things.....not always easy to do, especially when we feel like crap or things are not going well or when we are just feeling plain scared.
That's me at the moment, I'm scared.
I see the Oncologist on Monday, I'm hoping my scan results will be there, but I'm also hoping they won't be.
It's a mental tug of war.

I will keep trying to distract myself, looking for the little joys each day and reminding myself what I'm grateful for.

Today I've found joy in the little Robin that has been visiting my garden. I love the way he seems to move closer to me when I whistle.
Today I am grateful for the beautiful weather, allowing me to hang the washing out.

Hoping you all can find joy in something today xxx

I'm on my way to our breast unit to see a lady about the shape of wonky boob. I don't think I want a full on false boob - that wouldn't match the other side - but am sick of buying bras for them to mould to the dented shape of the right side 🙄. I'd also like to wear a lower neckline maybe but, at the moment, nothing hangs quite right because of the weird shape of right boob.

Sound stunning as fuck, don't I 🤣. It's most of a day off work if nothing comes of it, at least!

Love to you all, I'm sorry to see so many struggles xx

How is everyone?
I had a nice day yesterday- lunch with a friend, and theatre with my daughter. (Little Women).
I don’t know whether it’s chemo tiredness or the Covid jab I also had yesterday- but today I am pinned to me bed and exhausted. I think it’s the jab.

I hope those of you with bigger troubles than mine are doing ok/ better today xx

I had some scan results today . My scans are good and my ca125 has plummeted ( consultants words) the chemo may need tweaking as my blood counts haven't been good but at the moment carry on.
So today we take the win I might open the champagne I won at last year's school fair!

So pleased for you @Florsilvestredelcampo that’s lovely news. Definitely open the fizz! X

@RedRosesPinkLiliesglad you are getting out and about, maybe the jab has caused the tiredness? Beautiful weather eh? X

Chained to my bed here, steadily 🤮 since this morning, accompanied by a blinding headache. My thoughts are not healthy and I look
and feel like a cancer patient. Compared this time last year, we were zooming round Bath city, BC nice and stable, but unbeknown that sarcoma 2 was round the corner ☹️

@Florsilvestredelcampo fabulous!! Open the champagne!
@Enigma53 sorry. That’s not so good. Can you watch anything to while away the time?

Fuck me! What a day!

Dd2 is REALLY struggling.

Pass the wine!

I'll be back later on no doubt.

I’m on ketamine for the pain. Shame I can’t go dancing. My left leg is killing me. I just need to get ontop of the pain. I haven’t had Bo yet as I’m so paranoid as I have a chatheter in.