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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
7
AlleycatMarie · 24/01/2026 09:30

Thanks for starting a new thread @Earlandmrsgrey
Have a fabulous time tonight! You really have tackled all this with such an amazing attitude.

MyOtherProfile · 24/01/2026 10:11

I hope you have a great night!

Chocolatebunny61 · 24/01/2026 11:09

I’m really glad you are doing well @Earlandmrsgrey. As a Bowel Cancer patient myself I really get the scanxiety and I’ve also spent nights lying awake catastrophising. I’ve definitely got more health anxiety as a result of having cancer but it’s great you’ve found others with the same experience as you- it does really help to talk about it. Good luck for your scan results!

chatgptsbestmate · 24/01/2026 11:15

Yay! Sending love ❤️

Stigsmother · 24/01/2026 13:36

Have a fabulous night out 😊

PerriDowton · 24/01/2026 17:51

Hi @Earlandmrsgrey have an enjoyable evening. xx

TheBroonOneAndTheWhiteOne · 24/01/2026 18:36

I'm glad you've started another thread.

Hope work is going okay, and you have a great night out.

Iamnotalemming · 24/01/2026 23:28

I use a sleep technique when my mind is racing.
Step 1: get comfortable, lying flat on your back, arms by your sides
Step 2: ten deep slow breathes in and out
Step 3: imagine your body relaxing, moving from your toes to your head
Step 4: make a mental list in your head of all the thing you did today in as much detail as possible.
It works 9 times out of 10.

Muchtoomuchtodo · 25/01/2026 14:24

How was the bingo @Earlandmrsgrey?! I’ve always fancied bongo bingo but never been.

my sister swears that magnesium supplements have revolutionised her sleep that was very poor after a health scare. Not sure if you’re able to take that or not? xx

hourspassed · 25/01/2026 20:49

Hope you had a great night OP. Good to hear you are doing well.

PerriDowton · 26/01/2026 17:32

Hi OP, hope you had a fabulous night. xx

Berlinlover · 27/01/2026 18:11

Hi @Earlandmrsgrey I hope you’re doing well. I was diagnosed with uterine leiomyosarcoma to my peritoneum in September, 2023. After four surgeries and six rounds of doxorubicin I was told in December, 2025 it had returned to my peritoneum and both lungs. The nodules are smaller than 1cm so my oncologist has decided on the watch and wait approach. My next scan will be mid March. I returned to work last August and am enjoying it.

TheBroonOneAndTheWhiteOne · 01/02/2026 14:39

Hello @Berlinlover I really hope that things turn out well for you.

Berlinlover · 01/02/2026 14:49

TheBroonOneAndTheWhiteOne · 01/02/2026 14:39

Hello @Berlinlover I really hope that things turn out well for you.

Thank you @TheBroonOneAndTheWhiteOne xxx

Earlandmrsgrey · 01/02/2026 20:24

@Berlinlover Just seen your post, I've had a few days off Mumsnet!
I'm glad you're enjoying being back at work...I am too.
I'm hoping your next scan shows very little in the way of growth.

I'm still waiting for my scan results, but I'm giving it another week until I start chasing.

Had a bit of an issue with my stoma in that I suddenly developed a contact allergy to my bag. The itching was insane! I've been given another bag type to try. I became allergic to my wedding band after only a few months as well!!

Snowdrops are carpeting the country lanes around here. Days are getting longer and the birds have been chattering away. Shame about all the rain, rain, rain. Hopefully I'll have good news soon.

OP posts:
Earlandmrsgrey · 01/02/2026 20:27

...oh, and bingo was great. Didn't win anything, drank too much prosecco and my DH met me off the train with a MacDonald's. Excellent night.

OP posts:
TheBroonOneAndTheWhiteOne · 01/02/2026 20:54

Earlandmrsgrey · 01/02/2026 20:27

...oh, and bingo was great. Didn't win anything, drank too much prosecco and my DH met me off the train with a MacDonald's. Excellent night.

I loved going to bingo when I lived in London!

I also loved a Big Mac when I lived there.

I now live in Argyll, far away from things like this.

chatgptsbestmate · 15/02/2026 20:37

How are you doing @Earlandmrsgrey ?

Earlandmrsgrey · 16/02/2026 09:21

Unfortunately Friday 13th was the worst day of my life. Metastases to the lung and liver.
Three short weeks ago I was feeling absolutely fine but then suddenly overnight my output into my colostomy bag changed. Instead of having to take a daily laxative to get it soft enough I almost needed to take something to thicken it. At first I thought it might just be a bug, or because I've gone back to work and the lab air is really drying. But it didn't change, and they always say that changes in bowel habits need to be looked at. I started chasing for my results but still heard nothing. Then last Sunday night when I went to bed I started to feel a niggling pain in my back which hadn't been there before and my inwards were so noisy and churning. Then Monday night was a little more painful, and Tuesday night more painful still, then I had my first period in 5 months, so maybe nothing to worry about after all. Thursday I sent another more strongly worded email to chase my results. They rang back a few hours later to schedule a face to face appointment for Friday. I knew it was bad then. Too late for my husband to schedule a day off and I didn't want to burden anyone else...stupid I know.

So on Friday I travelled to UCLH alone, wearing a fabulous outfit and all the make-up to try and help compose myself. I cried in Waterstones on Tottenham Court Road, I cried in China Town and in front of a portrait of Charles I in the National Portrait Gallery (not sure how I even ended up there). I rang my mum about a thousand times but she wasn't in, I couldn't call my husband...he has a driving job. I WhatsApped I friend and she and her DH arrived just 2 minutes after I got home. We did have a fabulous night out, a lot of dark humour and too much wine.

But I am broken. A long weekend of telling people but not wanting to talk. I've been desperately wanting to post here as I find it so cathartic but having to hold back as some know me in real life and they haven't been informed yet. I'm sorry if that is you, but I need to put words to a page.

In terms of what happens next, I don't know yet. Oncology appointment should be later this week. I'm so scared of the pain that is to come. And the logistics, I still need a specialist centre and that is UCLH and I'm near Winchester. Not sure how that is going to work.

Today, the sun is shining and I'm determined to enjoy it as much as I can. I shall wear my finest, most fabulous outfits with the expensive boots. I shall get through all my perfumes, and the face creams, eye masks and serums. Use the crystal glasses, burn all the scented candles (not all at once though!) and wear Christmas socks whenever I feel like it. What about you, what are you going to do?

...oh, and my youngest son reckons I'll look fabulous with no hair (if it comes to it). Got the right head shape for it apparently. He's a complete git, but I love him!!

xx

OP posts:
TheBerry · 16/02/2026 09:39

So sorry about this update OP. Don't really have any words but I'm thinking of you, as are many others.

Seems so shit of UCLH to need so much prodding to give you the results. Hopefully they'll be proactive now with the next stage of treatment.

I hope you can enjoy your day in the sun! I'll be taking my daily walk to Tesco with the baby.

outofideas2 · 16/02/2026 09:40

So sorry to hear your update, there are no useful words but we’re quietly here by your side ❤️

Chocolatebunny61 · 16/02/2026 10:29

Really sorry to hear this update. I hope you don’t have to wait too long to see oncology and get your treatment plan. Sending you love and hugs xx

Muchtoomuchtodo · 16/02/2026 10:31

So sorry to hear that last Friday turned into such a shocker @Earlandmrsgrey

I hope you get a treatment plan sorted soon and the logistics aren’t too complicated.

Finding joy in wearing your best clothes, drinking the wine and soaking up the sunshine sounds like all you can do for now.

I am playing hunt the mouse (mice) in our house - and have resorted to calling in the experts today as all of my efforts over the past fortnight seem to be falling short. I have high hopes that they will get us sorted (they better had for £300!) Talking of teenage sons, yours sounds fabulous and far more supportive than mine who can’t be bothered to keep his room food free and tidy then complains when there’s evidence of a mouse in his room.

I’m pleased that writing is helpful for you. We’re here for you to offload to anytime xx

Berlinlover · 16/02/2026 11:04

Sorry to hear your update @Earlandmrsgrey I hope you’re not waiting too long for your treatment plan, waiting can be difficult. I found out last week that my next CT scan will be 25 March. I’m hoping the nodules in my lungs and peritoneum are stable so I won’t have to go back on chemo just yet.

I’m working tomorrow evening so this evening my partner and I are celebrating Pancake Monday. My appetite is very good. Sending you hugs x

Iamnotalemming · 16/02/2026 11:35

Bastard cancer is a real bastard. I'm so sorry OP. It's affected so many ppl in my life. I really feel for you.

I am surrounded by piles of housework which I am ignoring in favour of a break before going back to do some more difficult work at my desk. As I did last night when I squeezed in some exercise instead of doing laundry. Too late in life I am trying to get used to putting my health and sanity first.

Unmumsnetty hugs to you.