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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

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Earlandmrsgrey · 16/02/2026 11:58

Typically the specialist sarcoma oncologist is off for the next 2 weeks. Next available appointment 5th March.

No words

OP posts:
Fortheloveofgodwhy · 16/02/2026 12:55

Oh that’s awful. You must be beyond frustrated by this on top of the bad news.

Youllnevergetabetterbitofbutteronyourknife · 16/02/2026 13:06

Ah, op, I'm so very sorry to hear this update. Sending you healing virtual hugs 🫂💐

TheBroonOneAndTheWhiteOne · 16/02/2026 13:08

Oh my dear. How absolutely dreadful.
What shattering news.
I am terribly sorry.
It just wasn't what you were expecting and is certainly extremely difficult to cope with, after all you've been through, and how positive you've been feeling.
I wish there was something any of us could do to help you.

Thank you for posting that difficult update. It was remarkably brave of you.

We're here by your side. Keep talking to us if it helps you.

AlleycatMarie · 16/02/2026 13:56

I am so sorry to read your update @Earlandmrsgrey . I desperately want to write something to make you feel better, but clearly those words don’t exist.

Keep wearing all the fabulous outfits and drink all the good wine!

I am wallowing; this time last year was our final (unsuccessful) attempt at IVF and I’ve been feeling sad. I am going to be more you now and stop wallowing and go for a walk after work and then enjoy some posh chocolates I was saving!

PerriDowton · 16/02/2026 15:39

I'm really sorry to hear your update. I was reading your post and it made me cry, sorry..
I wish we could all give you a big warm hug. I hope you can get an earlier appointment.

The sun is shining here too, so I'm going for a walk to the woodland spinney. My joints (arthritis) are getting a bit stiff, so exercise can help a bit. I really need the fresh air. I have a lot of catch-up TV tonight.

Sending you love and support. xx

chatgptsbestmate · 16/02/2026 15:47

Oh fuck fuck fuck

What to say? I can only think of 'fuck'

I'm beyond sorry

Sending you so much love and angels xxx❤️🥰

Jasminesmellingcandles · 16/02/2026 17:11

I am so sorry 😞.

Gentle hugs to you 💜💜

Wishmyhousewasbigger · 16/02/2026 17:46

So sorry to hear your news, thinking of you Flowersxx

Daftapath · 16/02/2026 18:42

Oh love that is just shit! I’m so sorry to hear this, as you say, you had been doing so well in recovering from your big op.

You sound as though you have a good plan for enjoying all the good things - friends, perfume, wine, clothes (I’m dreadful at keeping everything for ‘best’ and then have no best!)…. Your son sounds fab too.

Sending love and hopes that the experts get their acts together with a plan for you

Beachtastic · 16/02/2026 22:33

Ohhhhhh no, I am SO sorry to read this 🫂🫂🫂

Apart from the devastating news, I am sorry that events conspired to isolate you so completely on Friday. It must have been desperately lonely.

I wish I could wave a wand and make things better for you. 💗

WatieKatie · 16/02/2026 23:22

I am so very very sorry to read your update. Fucking fucking cancer.

Also sorry to read that there is yet another delay to you being able to seek answers. It feels like you’ve had one agonising delay after another since this started.

You are in my thoughts.

sellthebigissue · 16/02/2026 23:35

Oh OP. Ive sat and read through everything from this thread and your previous.

Im so sorry - keep strong x

Agapornis · 17/02/2026 18:04

I have a family member who was equally put on the back burner for months causing the cancer to get worse 🙄 they can be right twats

Do push for patient accommodation https://www.uclh.nhs.uk/patients-and-visitors/inpatients-your-hospital-stay/patient-accommodation

Patient accommodation : University College London Hospitals NHS Foundation Trust

https://www.uclh.nhs.uk/patients-and-visitors/inpatients-your-hospital-stay/patient-accommodation

MidlandsWoman · 17/02/2026 18:30

I'm so sorry to read your update, OP. Usually, I just lurk on your threads, but I'm posting with a hug. Keep doing all the things you enjoy whenever you can. Flowers

Missingducks · 18/02/2026 12:10

How incredibly cruel Friday was - along with others I wish there was a way we could help other than letting you know we hear you and send you imaginary pot of primroses and something wonderful to wear x

Earlandmrsgrey · 20/02/2026 12:14

When everything is going to shit I'll take every small win. Managed to get a Teams consultation with oncology yesterday afternoon.

Basic treatment plan is 6 cycles of DOX. Potentially this could be done in Southampton which would be much easier in terms of travel. However I have been offered a phased 3 trial back up at UCLH. This would require 2 extra journeys back up to UCLH in both cycles 1 and 2. I can see the benefit to this if I get selected for either of the treatment arms but if I get given the control arm then it's the same as what I could have in Southampton. They are calling me this afternoon to discuss further.

Another CT booked for next Tuesday then the echo for the 10th March. Chemo will start shortly after that. So 3 weeks to try and enjoy myself with 2 of those days being up in London. Need to decide on what fun things I can do.

My sister came to visit on Wednesday. Took her to Winchester Cathedral as she had never been. I'm not religious but I do appreciate a good Cathedral and an old village church. I think it's the smell and the echoes and the change in temperature. Good for the senses! Don't like gaudy, overly ornate Cathedrals full of gold though...they give me the rage!!! We had a lovely lunch and a good shop and came home with more earrings and more plant pots and more things that I just don't need. Annoyingly I had to purchase some more black boots as somehow on that dreaded Friday 13th a massive stone managed to wreck havoc with the sole and totally destroyed them. They are rather fab though with shiny silver glittery laces!

Lots of life admin to get on top of now.

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hourspassed · 20/02/2026 13:06

I also love a Cathedral too! Always feel a sense of peace there yet I'm not really religious either though I have some level of faith - I think?

Good to hear some positive steps in your treatment plan. Enjoy all the quiet and fun moments and wear all the glitter and sparkles! Sending hugs x

Beachtastic · 20/02/2026 14:29

If you're in London and love a cathedral, but not churchy things, how about the Natural History Museum? (I'm suggesting this while bearing in mind that on a recent thread about places you hate, a few posters mentioned the NHM!)

I always head for the minerals gallery - it deeply moves and comforts me, for reasons I can't really explain.

TheBroonOneAndTheWhiteOne · 20/02/2026 14:31

When I go round cathedrals I always hope that the organist will be playing, or the choir practising.

I usually also buy stuff I don't need in the gift shop and eat too many cakes in the coffee shop.

I'm glad you had a good day, and that you've been able to talk to the team about your treatment options.

chatgptsbestmate · 20/02/2026 15:29

I love Cathedrals too. Also churches. Actually any old buildings. My local church is 900 years old. Imagine what it's been witness too, over the years

Sending you more love ❤️

Earlandmrsgrey · 20/02/2026 16:25

@Beachtastic Natural History museums are my favourites as well. Always love to visit them in other countries as well. They always have the best buildings...and dinosaurs!!

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Agapornis · 21/02/2026 20:09

Have you been to the Grant Zoology museum? It's on the UCL/UCH campus. 1 minute walk from the MacMillan cancer place, 5 min walk from the Lidl pastries.

No big dinos but they do have a big jar of moles.

Gymnopediegivesmethewillies · 25/02/2026 13:27

@Earlandmrsgrey I’m sorry it’s taken me a while to catch up with you and I’m terribly sorry about your update. I deeply hope your treatments are beyond successful and we’re here for you throughout. Enjoy your respite time, I too love a church or cathedral, although as PP said, I don’t like the ornate gold ones, goes against the grain somehow. Any chance of a trip away for a few days before the treatment starts?

Earlandmrsgrey · 25/02/2026 17:19

Busy day yesterday. Drive to the local rural train station that has a decent amount of parking, only to find it chock-a-block with white workmen's vans. Had to head out of the village and abandon my car on a muddy embankment before run walking back to the station. Get to the platform, and yes, you've guessed it, no fewer than five of the vans start up and move on out in convoy. Having not actually done any running since last July I could have done with some fluid but scans were both Nil by mouth.

Met a colleague at Euston then three appointments, three different buildings! Liver MRI then CT then bloods. Went to get a tissue from my coat pocket on the train on the way home and found my bra still stuffed in there from when I had to take it off for the scans!!

Back up again this Friday to see the oncology team and the clinical trials nurse. Might have to face that one alone as we're trying to save my DH's A/L. He's been in his job less than a year but has arranged to see his manager and HR next week.

Got a busy weekend of catching up with friends and family all booked in. Hoping to see an old uni housemate who I haven't been in touch with since 1997. Turns out he now lives round the corner from my mum. We fell out over toilet paper, makes me laugh now but back then I was fuming. Think I might give him a roll as a present!

Spent a lovely sunny afternoon today listening to the birds in conjunction with the Cornell app. Beautiful birdsong to lift the spirits along with the babbling of the river running through the trees. Nature really is healing.

I think next week is so far appointment free so I'm hoping to get across to Pembrokeshire for some alpaca therapy. Hopefully it won't be quite as wet and cold as it was back in November....but it is Wales so I'll be prepared.

Echocardiogram is booked for the 10th. Trial randomisation Friday the 13th (determined not to read anything in to that). PICC and first infusion due on the 16th.

I have so many tasks that need doing but I just can't bring myself to do them.

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