Retroperitoneal Leiomyosarcoma part 2

[Earlandmrsgrey]

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

We should all be looking for the joy in the small things. Because they are usually the big things. Sending you hugs OP.

I couldn’t agree more that we often rush around so much that we miss out on simple pleasures.

well done to your DS - making the smoothie and clearing up - that’s a triumph for all of you! 👏🏻👏🏻

I’ve silently been following you and thinking of you. I hope and pray you have a lot of life left, but I’m so happy that you’re finding peace.

I’ve been silently following too!
I just wanted to say that the way you have tackled your illness has been a true inspiration to me & that I’m thinking of you 🤗

Another quiet follower here too. You are touching the hearts of many people @Earlandmrsgrey . We all have some limited choices in matters of life and death and dying, and your choice has been to be amazing and inspirational. Thank you. 💐

That's a beautiful photo of you embracing life 💗

I expect many people, like me, are silent because we have no idea what to say. But sending you much love and support. (see? - the words are simply inadequate)

Also a silent follower hoping and praying for you

I'm another who has been silently willing you on. You are so right, the humdrum of life gets in the way of living with your eyes really open to the every day wonders and pleasures that are all around us.
Sending you my very best wishes, sounds like you are a total inspitration to your family, long may it continue.

Another silent follower coming on to send you love, you are an inspiration to me with your full life. I need to do the same and stop wallowing!

How are you doing @Earlandmrsgrey ?

@Gymnopediegivesmethewillies I'm melting!!! It's going to be absolutely hideous tomorrow, we have heating engineers in updating our oil boiler. They're going to test it tomorrow which means turning the radiators on at full blast!!

Been a quiet week but I will get up to something at the weekend. Went to a sarcoma support group yesterday, lovely people, all thrivers, all about 20 years older than me. No one else there has any experience of chemo but it is a safe space to vent.

Back up to London on Monday for follow-up. Youngest son has decided to travel up with me as he has money to burn and fancies some new trainers. Not sure which is terrifying me more, the shopping or the consultation! He will not join me at UCLH, we've both agreed that he wouldn't cope with it. There is a possibility that a friend will be able to make it but she can't commit yet (complicated). I've then got to go back again on Tuesday for another CT scan. Apparently I'm kind of still on the trial as they like to collect supplementary data on all those who don't finish the treatment sets. I guess every little bit of knowledge will help for those who will follow me down the line with this type of cancer.

We've been plagued by mosquitoes recently and after waking with 5 large angry bites on my face last weekend I ordered some netting. I now sleep (well, toss and turn in this heat) in a Princess style bed! Thoroughly recommend it.

My hair is growing back but I won't get too excited as I don't know whether that is set to stay yet.

Thanks for all your lovely messages. For those that love the sunshine, make sure you get out and enjoy it...for everyone else there is always ice-cream xx

@Earlandmrsgrey I just wanted to say I think you're inspirational and that I've been quietly following you and cheering you on 💐

@ ditto x

Following for a while and sending lots of love.
List of nice hotels near bath / Bristol way. Budget mildly expensive to very expensive. Most will need car to get to.
Lucknam park
Woolley grange
Calcot spa
Celtic manor
Loads more but forgotten off the top of my head.

Absolutely 💐 Sending love for a stress free shopping trip. Hope your DS find his trainers! And have a lovely weekend x

Tritto 💙💙

They had better be some pretty special trainers to brave this heat! I hope the journeys are smooth.

What a day. Somehow we have survived the radiators being on. Hot as hell! Heating engineers were incredible and we slipped them some well deserved extra beer money. Now to put the house back to rights.

During all of this I took a call from UCLH. They were cancelling my Monday follow up because I haven't had an MRI done. I know this but did try multiple times last week to chase this but no-one responded. They wanted to postpone my follow up until Sept 7th as the MRI is currently scheduled for 23rd August. Obviously I was not happy with this as that would be about a 3 month break in treatment. Long story short, after a rant on a Facebook support group it was suggested I rang Sarcoma UK. Sarcoma UK have chased UCLH on my behalf and my Consultant gave me a call. He has updated me with my PETscan results. They are surprisingly better than they anticipated and there does seem to be some degree of stability, especially in the lungs. Previous scans on the liver have always been a bit unusual with areas of concern coming and going. Last CT suggested there are new multiple small potential mets but these are too small for the PET. Therefore an MRI is required as this will determine what the next step is. He is hoping that another chemo is not required quite yet and that they will be able to offer targeted therapy instead. In the meantime radiology are going to look over all previous scans again and they are chasing an earlier MRI. I've also been given better contact details so this doesn't happen again. Stress levels were unbelievably high during all this but are now back to normal.

Still going to London on Monday as trainer shopping has not been cancelled!

Off to Weald and Downland museum tomorrow (Repair Shop place) with some old school friends. We've all been there before on multiple school trips. We have packed lunches and clipboards at the ready!!

Stop the press.

School trip postponed. MRI tomorrow afternoon. Another day of nil by mouth during a heatwave.

Wow, what a stressful turn of events!! Sorry the trip is postponed but glad you’re getting the MRI!!

What a drama! So glad the MRI has been brought forward though. August is ridiculous when treatment options depend on it.

yay for the MRI and reduced stress levels but sorry about the no drinking in the heat. 💪

What a day you're having!

Well done for having the strength and tenacity to say 'this isn't good enough!'

Best of luck for the MRI tomorrow and hope you're planning something delicious to eat and drink for afterwards!

Good luck tomorrow x