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

@Beachtastic Fortunately I had a hulking nephew to do the honours!

Sounds like you’re doing really well and had a great day! Keep us updated on the project. We have 2 badly leaking showers, so I’m planning 2 complete bathroom refits when finances/reliable tradies permit.

Go me! Managed to walk the local park run this morning.

Hair pretty much all gone bar a few wisps. Eyebrows on the way out...sharpies ordered from SpaceNK.

My neighbour gifted me her gardener for a couple of hours which was lovely. I've now got a little rockery project to keep me busy. I should be outside doing it now but it's far too cold and windy. It doesn't help that we are also trying to conserve what remains of our heating oil.

Now just need to sort the Ocado order so that it is full of easy prep and easy to eat foods.

Wow, well done @Earlandmrsgrey
That's brilliant.

What a lovely neighbour! Sounds like a good day - being outside is so good for the soul - but not if it's too cold! Warmer days are on their way 😍

Hi thought I’d pop over and say hello!
I have a pelvic leiomysarcoma. Currently on Trabectedin. Determined to live my life for as long as I can.

Hair went with doxorubicin and docetaxol/ gemcitabine. It’s now back in the form of a grey weird fuzz! I may dye it at some point, but rather scared!

Off to see Magic Faraway Tree today.

Bye for now 😊

Hi @Enigma54 I've been lurking on the life limiting illness thread and was very relieved to read that your last scan went well. I hope you enjoyed The Magic Faraway Tree, I remember secretly reading them when I was a child. For some reason mum wasn't a fan of those. I was allowed the Famous Five but not the Secret Seven?!?

Back to London today for pre chemo bloods and consultation. Met up with a cousin that I hadn't seen for a while. Lovely to spend time with her and mooch around the Covent Garden antique stalls. My platelets are sky high again (probably due to the lack of a spleen) but they expect them to drop again when I have my next infusion. They've also just realised that there are some more bank holidays coming up and that all my chemo dates will likely need rescheduling. Surely with modern technology this just shouldn't happen (oh, how I wish there was a sarcasm font!). Anyway, normally this would wind me up but I think it will work in my favour. Before I knew that the cancer had spread I booked a pottery lamp making day with a friend. This was going to be 4 days after my 3rd infusion...looks like it will now be just before it instead. Means that I might actually be awake and capable of sculpting more than just a blob. I'm thinking that I may do my missing left kidney!

Side Effects:
Fatigue...life is currently eat, sleep, sleep repeat.
Mucositis...yuk, sore, living off ice chips.

Constipation...had to change my bag 6 times yesterday due to pancaking/blow outs.

In better news:
Our critical illness policy has finally paid up after almost 6 months of wrangling. We can finally upgrade the bathroom after talking about doing it as a matter of priority for the last 20 years!

DH got a slight promotion at work...by slight I mean it will give him about an extra fiver a month but should help him towards a better position with the next round of posts.

Wallpaper goes up tomorrow, so excited!!

FA cup semi final this coming weekend. Come on Saints!

I'm glad you got the money sorted out @Earlandmrsgrey
That'll be a great help. Also your husband's promotion.

Sorry about the side-effects. They sound unpleasant. But I'm always in awe of your positivity.

Side effects sound rubbish - sending every good wish to you OP. A new bathroom and new wallpaper will be amazing so something to look forward to!