Please or to access all these features

Cancer

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

Retroperitoneal Leiomyosarcoma part 2

284 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
17
Gymnopediegivesmethewillies · 23/06/2026 05:59

Oh @Earlandmrsgrey I'm so sorry to see your update, I hope whatever treatment they come with next has far less side effects but with a much better outcome.

Also sorry you had such a rubbish birthday, sounds like you should pick another day and have a do-over, maybe when your mouth symptoms have calmed down. Try and stay cool and I hope your feet improve asap x

Flamingmentalcats · 23/06/2026 07:36

I am so sorry to hear your update. Sending you much love x

badhairmum · 23/06/2026 09:36

So sorry to hear this. Sending you love.

Berlinlover · 23/06/2026 09:57

Thinking of you @Earlandmrsgrey I have leiomyosarcoma too.

BeesAndCrumpets · 23/06/2026 14:15

I wish it wasn't so, OP. Sending love and strength to you 💐

Chocolatebunny61 · 23/06/2026 16:37

So sorry you had such a rubbish birthday and have had to cope with bad news. Sending you love and strength and hope the next treatment gives you a better outcome. 💐

namechangeformeeee · 23/06/2026 16:38

So sorry to read your update - sending you much love and hopes for better news going forwards xx

Wowsersbrowsers · 23/06/2026 17:25

Sorry to hear about such a rubbish update. I agree that you absolutely deserve a birthday do over on a day of your choosing.

ThaneOfGlamis · 23/06/2026 18:48

Oh op, this is the first time I have seen your threads. Fuck cancer! I know how frustrating it is to see what medical stuff is available in America as standard that we don't have yet, as I am in a similar boat. But being on a medical trial will help future people with the disease, so thank you for doing it, even if you are in the control group.

namechange62 · 24/06/2026 07:05

I am so so sorry after reading your update. For you and your lovely family. x

Earlandmrsgrey · 24/06/2026 17:12

Thank you everyone for your kind messages of support. I've never really been one for opening up in a real face to face situation. Growing up, my mum was never really one for talking about emotions and I guess that has really impacted the way I communicate. I've always made sure that I haven't been like that for my sons but with others I struggle to be open about my feelings. Definitely a bit stiff upper lip in person but I do need an outlet and mumsnet it is! There's no way I could talk to a therapist or use a support line. I'm upset, angry and frustrated and I just want to know what the next steps are. The waiting is unbearable. PET scan is booked for Monday, it's going to be a hideous day as its not until 4:15pm. Therfore only water after 10:15 and I don't get to eat until about 5:30-6. I'm going to be so hangry by then.

Today my husband made me get out of the house. We've wanted a new bathroom since we moved in 20 years ago and we're damn well going to do it. After schlepping round numerous massive showrooms and just being overwhelmed with what is on offer we ended up in a small independent. They'll be round in a couple of weeks to measure up and design the whole thing for us. The owner totally understood that I just want a functional bathroom and that neither of us have the headspace to design it ourselves.

Dorset knob and owl painting friend wants to take me to Inverness. If we can arrange it then I'll explain why in another post.

Obviously I've cried a lot over the last couple of days. I'm melting in the heat and my stoma is not liking it...oh boy is she whiffy. Are the drains blocked again? Are they muck spreading the local farmland? Nope it's me and I don't even have a dog to blame!!!

OP posts:
Lougle · 24/06/2026 18:05

If there's ever a time to be angry and sad and frustrated, this is it. Did the oral thrush calm down? This weather is awful at the best of times.

hourspassed · 24/06/2026 19:01

Do use this as a safe space to vent @Earlandmrsgrey So many people, myself included, have followed your post since the beginning and just want the best for you. I totally get what you're saying about opening up - I think my childhood was similar and I am totally dreadful at being openly vulnerable. I have had therapy myself which was useful but I still held back some even then. Anyway, wishing you well for Monday and hope you have something yummy planned for dinner. Sending hugs x

namechange62 · 25/06/2026 09:17

I'm listening.. rant away..x

Daftapath · 25/06/2026 23:48

@Earlandmrsgreysuch a tough time. I really hope that it’s possible arrange to get to Inverness.

pol123417 · 26/06/2026 13:19

Massive love to you @Earlandmrsgrey you have faced this with such grace, strength and humour xxx

Earlandmrsgrey · 28/06/2026 18:23

A couple of days ago I found out the shocking news that an ex colleague had died. Diagnosed with cancer in mid May and dead a month later. I haven't seen her in over 10 years so not a friend but someone I did work closely with for many years. Some great nights out and some good memories. A few years younger than me, children mid teens. I owe it to her to make the most of the 'well' time that I have left...she didn't have that opportunity and that really sucks.

Not managed to arrange Inverness yet as I'm still waiting on an MRI appt. There will be another opportunity and we will take it.

My sister is meeting me for dinner tomorrow evening after my PET scan. I will be ravenous by then! We had hoped to see a show but there isn't much choice on a Monday night and as she's a teacher she will need to get back home at a reasonable time. Can't find anything suitable but we'll have a nice wander around London instead.

Welsh alpaca friend also wants a couple of nights away later this month. Maybe something Bristol/Bath way. I've only ever been to Bristol for a conference so that might be good.

I've spent a lot of time this weekend with my youngest son, firstly we watched last night's game. He is a massive football fan and has an encyclopedic knowledge of international football. He's one of those people that if he's in to something then he's really into something and he just absorbs information. Unfortunately though he only absorbs information that he's interested in. He knows his world flags and capital cities, he's pretty good at dinosaurs and he knows his football. Cannot read an analogue clock (I did teach him!) and he'd probably struggle with knowing the difference between an oak and a beech tree (once again, I did teach him along with British nature in general). He also suffered with multiple ear infections as a small child and had childhood hearing problems which was fixed with surgery. As a result, when he learnt to talk he was blessed with a louder than average tone of voice that has never resolved. Basically no volume control. All this info leads on to one of my favourite stories...

When he was small, maybe about 6/7ish we visited Igtham Mote, a NT property in Kent, with my mum, brother and sister in tow. There was a bit of a queue getting into the property and he was acting up a bit. I happened to notice a swallow's nest in the porch eaves and I thought that this was a good time for a bit of performative parenting. I knew that he would know what built it, after all I had taught both my boys a fair bit about British wildlife and nature. So fairly loudly I said "What built that nest DS2?" He looked at me completely flumoxed. So I gave him a bit of a clue..."begins with Sw". He thought for a moment, I was convinced he would say swallow, or maybe swift. Then with a face full of pride, so loud that about 20 people around us heard "OH, SWANS!!!" Well, the whole of the queue fell about laughing, I was briefly mortified but also couldn't stop laughing. From then on it has become a legendary story within the whole family. Swans, swifts and swallow's are regularly interchangeable and constantly pointed out. If in company we are also not afraid to raise our voices about it and will happily point out a swallow gracefully swimming along the edge of a lake. Today I took him to RSPB Pulborough to do a spot of bird watching. We laughed as we reminisced and hoped to spot something beginning with SW. No SW birds found but we did spot a white tailed eagle soaring above the South Downs and being mobbed by crows. A beautiful sight. Peaceful time also spent with the merlin bird app (I found him cheating with that last week, app on his phone, birdsong on his laptop!!). Good drive there and back along the A272 as well, plenty of classic cars and even a steam traction engine! Fabulous day...this is what life is about. It doesn't have to be something grand, just something really meaningful. I'm hoping he will remember this day long after I'm gone.

Thank you all for your kind messages of support. They really give me a boost. Now get out there and watch the summer swans darting around the sky, swooping for insects!!

OP posts:
hourspassed · 28/06/2026 20:43

@Earlandmrsgrey what a lovely story about your son, thank you for sharing it.

Made me think of a question my friend asked me recently. 'If you could relive one day from your life (not a wedding or birth of a child or anything like that), what day springs to mind and what happened?'

For me it was a 'normal' day when my DCs were small, doing the school run for DS, giving them cuddles and taking my toddler DD to playgroup. Finishing off the day when DH got home from work with tea in our local and favourite pub at the time. Then happy to be at home for the evening knowing they were bathed and safe in bed. Funny how something very ordinary sprung to my mind! But they were the best times and the really important and memorable days for me.

I think it's important and rather lovely to revisit those normal yet special days in our minds. Do share if you come up with any more OP! Sending good wishes for tomorrow.

Beachtastic · 28/06/2026 21:00

I'm glad you haven't lost your appetite, or your appetite for life, OP. 💗

Thank you for sharing that story about your son!

Randomchat · 29/06/2026 09:07

That's a lovely story. We're on holiday right now in a place with swallows everywhere. They're so beautiful to watch flying around.

Sbmpp · 29/06/2026 15:51

@Earlandmrsgrey Love your story and love watching birds in the wild also. We happen to have a peacock (!…) in our cul de sac at the moment and he especially loves our yard. We live in a desert area in Cali so no idea where he came from but wish he would go. Beautiful bird but noisy and dirty. Kinda sounds like a rooster at 06 am.
I know how the Petscan waiting is: I just had one and was so anxious. Hoping you have good news. You surely deserve a break. I’m not familiar with Dorset etc (I sure would love to be) but a break sounds lovely. I hope heat is easing off and you’re comfortable. Sending hugs and love from across the pond. Enjoy the new BR btw! Something else we’ve been looking into.

Wowsersbrowsers · 30/06/2026 17:05

Have you got bird boxes in your house? You can get ones built into the bricks that they apparently love.

Earlandmrsgrey · 02/07/2026 20:08

Charles I seems to be following me around on this cancer journey, everywhere I go there he is with his pointy beard. I think since I became stage 4 I've really started to notice little things that perhaps others don't see. Obviously Charles I is a massive part of the history of this country but I realised today how much I see him without noticing. In pub signs and blue plaques and paintings and statues...He was there at the National Portrait gallery after I was told that it had metastasised, I saw his under crackers at Carisbrooke Castle when visiting the Isle of Wight before Doxorubicin, he was there again today at Kingston Lacy whilst I wait for my next steps. He's there at the village pub I pass every time I avoid some local major roadworks. I know I'm rambling but his statue today really stopped me in my tracks...

I've talked so much about death and dying these last few days and cried a fair bit. I'm obviously hoping that I have a lot of life left but there is a feeling of peace. A feeling of really noticing and a deep feeling of joy from the smallest of things.

I came home today after a couple of nights in Dorset to find that my youngest son had made an enormous bowl full of smoothie...and washed up afterwards! Absolute joy!

Retroperitoneal Leiomyosarcoma part 2
Retroperitoneal Leiomyosarcoma part 2
Retroperitoneal Leiomyosarcoma part 2
OP posts:
namechange62 · 02/07/2026 20:35

I'm listening.. (I feel silly just saying that but I'm not really a witty person who knows what to say..) just know I'm here for you.

DeQuin · 02/07/2026 21:06

I love this post so much ❤️. Thank you for sharing.