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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Retroperitoneal Leiomyosarcoma part 2

110 replies

Earlandmrsgrey · 24/01/2026 09:02

The power of Mumsnet...I actually had a reasonable nights sleep!!

Work night out tonight. Bongo's Bingo in Clapham. Not sure what to expect but I wasn't going to turn it down. I'm hoping to find a good balance of doing stuff/doing nothing this year. I get so exhausted, but I don't want to spend the rest of my life on the sofa! This blasted cancer has at least resulted in the reconnection of some old school friendships. Every cloud... sometimes you just have to search a little deeper for the silver lining.

www.mumsnet.com/talk/cancer/5394978-likely-pancreatic-cancer-how-do-i-tell-my-mum-that-im-probably-dying-from-the-same-thing-that-killed-my-father?page=1

OP posts:
Thread gallery
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Missingducks · 21/03/2026 19:41

On the upside, the control arm won't be doing any harm @Earlandmrsgrey and we don't know the active arm will be doing any good. So still a win. And you are still brilliant for advancing the science!

Beachtastic · 21/03/2026 20:04

I'm at a complete loss for anything helpful to say, OP, but just wanted to send you an enormous hug and much love. Your spirit shines through in everything you write and I wish I could help you. 💗💗💗

TheBroonOneAndTheWhiteOne · 21/03/2026 20:15

Oh Lord, I don't know what to say to you OP but please know that I do think about you.

Muchtoomuchtodo · 21/03/2026 22:17

I’m so sorry to hear that you didn’t get on the trial arm but I think you’re even more incredible than I did before for being so selfless to put yourself forward to be any part of the trial and enduring the extras that go with it. Thank you 💐

Earlandmrsgrey · 24/03/2026 14:08

The Amaz*n algorithms are hard at work and have correctly sussed that I'm terminal.
Today's Top Picks for me included End of Life Planners!!!

OP posts:
Lougle · 24/03/2026 14:20

Earlandmrsgrey · 24/03/2026 14:08

The Amaz*n algorithms are hard at work and have correctly sussed that I'm terminal.
Today's Top Picks for me included End of Life Planners!!!

Well that's helpful! How are you doing otherwise?

Beachtastic · 24/03/2026 14:30

Earlandmrsgrey · 24/03/2026 14:08

The Amaz*n algorithms are hard at work and have correctly sussed that I'm terminal.
Today's Top Picks for me included End of Life Planners!!!

Got to admire the callous efficiency of a marketing algorithm 😬

Muchtoomuchtodo · 24/03/2026 14:54

Bloody hell, that’s brutal. Surely a human could override that level of AI interference?

I’d be absolutely fuming, hope you’re ok @Earlandmrsgrey 💐

TheBroonOneAndTheWhiteOne · 24/03/2026 16:08

Earlandmrsgrey · 24/03/2026 14:08

The Amaz*n algorithms are hard at work and have correctly sussed that I'm terminal.
Today's Top Picks for me included End of Life Planners!!!

Good gracious.
I don't know what to say.
I'm so sorry.

Sbmpp · 24/03/2026 17:00

@Earlandmrsgrey nope, don’t give up. I’m not going to give up. Where there’s life there’s hope. You are always on my mind.

Gymnopediegivesmethewillies · 30/03/2026 17:01

Blimey @Earlandmrsgrey. I’m so sorry about the trial. As PP have mentioned, any chance you could access through the private route?

Thanks for algorithms, internet gods. Way to make you feel good!

DeQuin · 01/04/2026 06:28

Was thinking about you this morning; haven't checked in since the new thread but I had a very real "I wonder how things are with @Earlandmrsgrey" moment so here I am.

The algorithm once decided to follow me around the internet with funeral planning adverts, with "go to the doctor to get it checked out" and other cheery messages. You can tell the algorithm to absolutely fuck off as far as it can go.

Earlandmrsgrey · 01/04/2026 10:02

This last week has mostly been dominated by the mouth ulcer from hell. It just got bigger and bigger and bigger. Fortunately it was only the one so I was able to eat on the other side of my mouth but oh boy was the pain constant! It's looking much better now and I can tolerate hot drinks again. I now have a small arsenal of products and remedies up my sleeve ready for the next cycle.

Hair started falling out yesterday. I've already sorted my collection of scarves into colour coded piles. I think I'll be more bothered by the eyelashes and brows than the head hair but we'll see. What is annoying me most is that when wearing something on my head I can't easily flip my specs onto my head when reading. I wear varifocals but still find it easier to read without them.

Mostly, I'm a bit bored to be honest. There is so much that I could be doing... definitely suffering from a bit of 'get up and go, got up and went.'

DH has been great and is busy decorating the living room for me. It was quickly whitewashed about 12 years ago when the extension was finished. I persuaded him to paint the high ceiling a dark green. He was very very dubious but went ahead and did it and it looks amazing!! Decorator will put the wallpaper up in a few weeks...I don't trust him with that!

I'm a little more settled regarding the regime I'm on now. The other drug is not currently licenced in the UK, even for what it was originally aimed to treat.

There's still about 7.8kg of chocolate buttons left. Must try harder.

OP posts:
TheBroonOneAndTheWhiteOne · 01/04/2026 11:43

There's still about 7.8kg of chocolate buttons left. Must try harder

I think there are plenty of us on the thread who will gladly come round and help you to eat them.

I'm so sorry about the mouth ulcer. Things like that become all-consuming because they take so long to go away, and they hurt even when you're not eating.

Muchtoomuchtodo · 01/04/2026 12:16

That green ceiling sounds awesome!

Lougle · 01/04/2026 12:36

Green is my favourite colour. It sounds wonderful! The mouth ulcer not so much.

Do you do puzzles or anything like that? I can't get out much because of caring responsibilities and lately I've been doing the Wasgij puzzles. It's a nice distraction from the monotony.

Gymnopediegivesmethewillies · 02/04/2026 22:11

Love the sound of the green ceiling and wallpaper très chic!

I read a great hint for mouth ulcers that I have found to be brilliant. Drink the natural juice from tinned pineapple, slosh it around your mouth if you can. I actually keep tins in the pantry in case of mouth ulcers. Anything is worth a try because they are miserable.

I bet your scarf collection is lovely. Have you got a beanie or two in case your poor head gets cold?

PatsFishTank · 02/04/2026 23:37

Just jumping on this thread as another chemo baldy. I lost my hair in November but have kept my eyelashes and my brows are still there too albeit sparser. I went for a free cancer makeover at Boots (link via Macmillan website I think) where I was able to get advice on eyebrow make up to fill them in. I don't wear much make up and was clueless about it so it was helpful.

I've been wearing lightweight merino beanies from Buff which are light enough for indoors and I'm experimenting with headscarves now the weather is warmer. I tried a few wigs but decided they weren't for me.

So sorry to hear about your ulcer, that sounds tough.

Wowsersbrowsers · 03/04/2026 18:23

Living room sounds glorious. Sounds like you need a stack of books to read and relax in there whilst eating chocolate buttons.

TheBroonOneAndTheWhiteOne · 06/04/2026 18:46

How is the pain in your mouth now @Earlandmrsgrey?

Earlandmrsgrey · 06/04/2026 19:28

Mouth ulcer is now all cleared up. Hair is about 80% gone and I'm rocking the headscarf look! Spent a glorious sunny day with BIL and SIL drinking a bit of Kylie pink fizz and pretending it was the real stuff. Came home with even more chocolate!!

24th wedding anniversary for us as well today. Determined that it will not be our last.

Tomorrow I am going to start on a project... don't know what that is yet but I will find something.

OP posts:
Flamingmentalcats · 06/04/2026 19:39

So glad you have had a nice day and anniversary 💞

Beachtastic · 06/04/2026 20:59

Earlandmrsgrey · 06/04/2026 19:28

Mouth ulcer is now all cleared up. Hair is about 80% gone and I'm rocking the headscarf look! Spent a glorious sunny day with BIL and SIL drinking a bit of Kylie pink fizz and pretending it was the real stuff. Came home with even more chocolate!!

24th wedding anniversary for us as well today. Determined that it will not be our last.

Tomorrow I am going to start on a project... don't know what that is yet but I will find something.

Congratulations on your anniversary! 💗

I'm impressed that you could get the cork out of that Kylie fizz. I really like it, but even my hulking DH struggles to open the bottle for me!!!!!!!!

Lougle · 06/04/2026 21:01

Happy anniversary! Glad to hear the mouth ulcer has reduced.

hourspassed · 06/04/2026 21:09

Happy anniversary! Good luck with the project 😍