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!

Turns out it wasn't mucositis but oral thrush, a yucky week and a half of feeling like I had lumpy sour milk permanently stored in my mouth. All cleared up now thanks to some Nystatin from the GP. Wouldn't recommend.

I'm getting harder and harder to bleed. Four attempts on Wednesday before they decided to call it a day. Those were extra trial bloods so not required for anything important.

Yesterday was back up to London for a CT. Two attempts to get a cannula in and my left hand is now horribly bruised. Results will be on the 11th. Had intended to come straight home afterwards but I think the sunshine activated the impulse shopping demon in me.

Off to Cerne Abbas tomorrow to take a wander around the chalk giant and celebrate a friend's 50th. I apologise in advance to any locals as I'm sure there will be some very silly and childish behaviour going on!!

Next week is my own personal Great Pottery Throwdown. I have a session at a wheel on Tuesday with a colleague and then Sunday is lampshade making.

In other news, my DH spent a great deal of time last week lying to me about an extra shift he was doing. Instead he spent the day getting a memorial tattoo done in my honour! I mean, it's really touching and is a lovely design of objects, colours and things that are all very me...but I'm not f**king dead yet!!! I might have accidentally on purpose bumped into the tattooed arm a couple of times to remind him that I'm still here.

I confess I laughed when I saw that your husband had got a tattoo of you, in advance of your death.
Honestly, it's dark humour, but it gets you through.

Pottery eh? I really hope you enjoy it. I'd be absolutely useless at it but I'm always fascinated by people who can create things like this.

Oral thrush is horrible and I'm glad to see it's cleared up.

Is it a tattoo of your face?? Does it have a date of birth with empty space for your date of death?! 😂 Maybe get one yourself to memorialise him...or yourself. Or your relationship.

Enjoy the massive priapic giant.

Also laughing at the tattoo 😳

Love Cerne Abbas - I'm a big Dorset and Dorchester fan so I'm hoping you have a fantastic day out. Never apologise for enjoying yourself! Hope you have the best time 😍

Oh my, that’s pretty distasteful from your DH. Glad you can see the funny side though @Earlandmrsgrey

Some of your adventures and trying new things sound great. have you got a lamp in mind to make a shade for?

sorry that the blood tests are getting so hard. Is there any way that they could make access easier - I don’t know anything about these things so sorry if that’s a daft question. xx

@Agapornis Definitely not a picture of my face...that would be terrifying!! It's just a lot of objects that are meaningful to us, surrounded by our wedding colours. It's very well done by a talented artist. I was just notexpecting that, when he said he had a surprise up his sleeve!

@Muchtoomuchtodo I have absolutely no idea what I'm going to do. I don't think I've done any clay modelling since I was a child. I think I'll just make it up as I go along.

You make me laugh, OP! What a gift to give us in the midst of what you are going through. Wish I knew you IRL - you are fab!

That's funny about the tattoo. I guess if he'd left it, you'd never know he'd done it -- better to do get memorials sorted out while people are alive so they know you appreciate them I guess.

Have fun with the pottery. We did some in Stoke at the museum.

We have shrinkage!!! Whoopee!!!

The two small lung mets appear stable and the two larger target liver mets are much reduced with one being barely visible (there is a chance that it is just obscured by the larger one). I was quietly hopeful as I had suffered from occasional pain in the general area of the liver since starting the chemo. Also, my metabolism seems to have changed, previously I was struggling to maintain my weight but now I'm putting it on by merely looking at a cake crumb. I'm going to have to lay off the chocolate buttons aren't I! BIL has also delivered about 50 slightly out of date crunchie bars. Then youngest son randomly purchased me some caramel buttons...poor lad was a bit taken back by the look of horror on my face!!

Excited to discover that I've gone nearly 51 years without knowing that I have a large birthmark on the back of my head. Neither my eldest or my husband asked about it as they assumed I already knew?! How?! I've been without hair for over a month!!!

This last week has been a bit of a Pottery Throwdown. Attempted the wheel last Tuesday and hand sculpted a lampshade base yesterday. So much fun, thoroughly recommend.

Living room is finally finished and is looking fabulously quirky.

Feeling happy 😁

Oh my! What a wonderful update! I’m so pleased to hear your good news and see the results of your pottery and decorating exploits!

who knows, we may all have as yet undiscovered birthmarks on our heads! Funny that your family thought you would know about it!!

keep enjoying the chocolate- your BIL sounds like a legend, as does your ds
xx

That is such good news to read, I am so pleased for you.
Love your owl and your room looks amazing

@Earlandmrsgrey That is such wonderful news. It’s a great start to the week. It was Mother’s Day here yesterday so Happy Mother’s Day too. Have many more (Not sure when your MD is).

Brilliant news about the shrinkage! And lovely to hear that your bil has widened your chocolate choices 😋

Love the owl.

Fabulous news; and best of all you have the lampshade that I chose for my exuberant bedroom in your living room. I hope it brings you as much joy as it brings me :)

@Earlandmrsgrey I'm thoroughly delighted for you. What fantastic news. Whoopee indeed!!