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

All set for round four tomorrow. They are going to drop the dose slightly to see if that helps with the oral thrush.

Annoyingly they've had to reschedule my CT scan which was originally booked for the 17th to this Thursday as that date didn't fit in with the trial criteria. I refuse to travel all the way home only to come straight back again the following morning. I've booked a hotel instead. Unfortunately this means that my husband won't be with me for the infusion as he is on an early shift on the Thursday.

Had a lovely mooch around Covent Garden yesterday. Picked up a birthday gift for DS1 and chose a lovely Tatty Devine necklace for my own birthday which will be in a few weeks. Enjoyed coffee and cake in our regular pre-consultation coffee shop and had a lovely conversation with the waitress. She very kindly and compassionately asked how the chemo was going and how many rounds I had left. Most people just look the other way as it's obvious I'm having chemo. Most people that is apart from Cancer Research chuggers who seem to make a beeline for me. Really not appropriate.

Saw a Mistle Thrush in Regent's Park. First time I've ever seen one. Still smiling about that!

Mistle thrushes are so beautiful. I used to see loads of them in the garden when I was a kid, but seeing one now is like spotting (!) a snow leopard.

I'm so sorry about the Cancer Research chuggers. I'd be getting a fake AK47 for dealing with them. Or maybe a real one!!!

Love Tatty Devine jewellery! I have their cowboy boot earrings as I love country music. Hope all goes well tomorrow for you and enjoy a peaceful night in your hotel.

I think you'd be quite right to tell the chuggers to fuck off.

Have you been to the new garden in Regent's Park? They've mostly used young plants so you should see quite a lot of change over time as it grows.
https://www.royalparks.org.uk/visit/parks/regents-park-primrose-hill/queen-elizabeth-ii-garden

I am so totally and utterly fed up with oral thrush. It really is the pits. Oncologist was adamant that I wouldn't get it again this cycle due to the drop in dose. This meant I didn't have anything to start attacking it over the weekend and had to wait until I could contact the GP first thing on Monday. Back on the Nystatin but will talk to the GP again tomorrow to see if I can start fluconozale again if there is no improvement soon.

DH took me out today to Langford Lakes Nature Reserve in Wiltshire. Mostly it rained and we hid in a hide watching the rain fall on the water. Very peaceful. Saw swallows darting for insects above the lakes, a sedgewarbler in the reeds, egrets in the margins and grebes and geese bobbing up and down. Just a shame that I've had naseau throughout the whole of the day. Next round I think I'll have to take the metoclopramide for an extra couple of days.

I've also got horrid swelling and deep bruising to my right wrist. They struggled to find a decent vein for last weeks CT scan and ended up with one on the wrist. The radiologist thought it would bruise due to the pressure the contrast dye was administered at.

Hoping to get to see my MIL in Canterbury early next week. We were meant to go last cycle but I ended up in hospital. It will be nice to see her and get a much needed change of scenery.

That sounds hideous @Earlandmrsgrey . Are you sterilising your toothbrush? If you're not, you could consider getting some Milton Fluid and putting your toothbrush in it between uses so that is doesn't reinfect you each time you clean your teeth.

Just urgh. Hand hold.

@Lougle I am changing my toothbrush every two weeks but I'll start with the Milton and see if that makes a difference.

I've just worked out that my DH can do all the remaining GCSF injections! Due to his shifts he's only managed to do 2 so far. I'm not particularly bothered by needles but find injecting myself really hard. This has made me stupidly happy today...small wins!!!

Self-injection is a bizarre thing, isn't it? I used to have migraine meds that had auto-injectors. After a while my brain just associated the loud click with pain and I couldn't get my thumb to press the button.

Wins are wins OP 💜

Oral thrush - try using olive oil or coconut oil to keep your mouth moist. Especially at night. It should soothe the glassy sticky sensation. You can use on top of whatever meds they've given you.(Nystatin? )

Sorry you're still suffering with the oral thrush. It really is the pits. Hope you find some treatment that helps. It's so uncomfortable!

I've never really been one for celebrating my birthday since I was knocked down by a van on my 13th. This one however has been by far the worst and may well be my last.

Pre-chemo consultation today and instead of seeing further shrinkage or stability the mets in my lungs and liver have tripled in size. No more doxorubicin. I'll need further PET and MRI scans to determine what the next line of treatment will be. Follow up in about 3 more weeks. They aren't hopeful but they will offer something.

Then due to the heat my feet swelled up so much that my normally comfy trainers began to rub so much I ended up with massive blisters. Hobbled my way with my eldest son to Covent Garden and ended up purchasing a pricey pair of Birkenstocks.

Then the train journey home was fraught with problems due to issues with the tracks also swelling and blistering . Eventually got rescued by DH.

Family and friends informed. Birthday over.

Simply sending you a big hug @Earlandmrsgrey .
It’s shite all round isn’t it?
I don’t have the right words but just wanted to say I hear you 🙏

May there be a glass of something cold in the fridge and two cool pillows in your bed. Today is only day one of your birthday ... You are more than allowed a redo. With love

So sad and sorry to hear this update OP. Sending hugs 💐

Sorry your birthday has been so shit.
i hope you can enjoy a bit of cake or a small glass of something tonight xx

So sorry to hear this, @Earlandmrsgrey - thinking of you, and, yes, 're-do' your birthday, if that appeals.

I don't know what to say @Earlandmrsgrey I just want you to know that I'm thinking of you. For what it's worth, happy birthday 😘 I wish you gentleness and positivity 💐

Just urgh. I hope being able to tell strangers what’s going on helps a bit, and that (very practically) your feet go down overnight and are more comfortable tomorrow.

I can't think of anything worth saying. I wish you were my friend. I wish this wasn't happening to you. 💗

That's so shit. I'm sorry.

@Earlandmrsgrey that is a hard birthday. I'm sorry that the treatment isn't doing its job. It might be me, but I don't think it's very helpful to let you go to a pre-chemo consultation, expecting to get chemo signed off, to then be told of findings that result in significant change of treatment.

I hope they get those scans done pronto.

I’m so sorry. You are in my thoughts.

@Earlandmrsgrey what can I say? We are in a similar boat I think ( in one way or another) The whole thing sucks and is absolute crap. Sending a gentle birthday hug.