Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

⛅

@SewingBees
Well played...!

Ooooh @TwigTheWonderKidthedingbat, that is very cautiously good news
When will imperial make decision?

I felt a bit sick with nerves/excitement reading that

@Tilllly definitely ask for a second opinion.
I'm going to go down that route but I'm going to wait until after my CT scan so whoever I get referred to will have a fresh scan to look at.

@LuciaPillson I hope you can get some relief from your pain.

@TwigTheWonderKid a glimmer of positive news is such a wonderful thing in our positions. Wishing you all the best.

@WrenNatsworthy I will be thinking of you on Friday.
My scan is also booked for Friday and although the scan is easy I'm hard to cannulate so it usually takes them at least 6-7 tries. Ah well I'm used to being a pin cushion now.

I went out yesterday for a meal with my family (we couldn't get a table for today).
The meal was lovely but my stomach was telling me to stop.
I however really wanted a dessert so I had a dessert and bloody lovely it was too.
I suffered for it last night and still suffering this morning. After having a feeding tube in for 4 months when I couldn't eat or drink anything it was worth it though 😀 (I think).

I am a bit concerned about my stomach symptoms lately but hopefully the scan will just show it is scar tissue or something from my surgery.

I hope you all manage to have a lovely pain free peaceful mother's day. Xxx

@Tilllly id certainly at the very least challenge with rads to the bone growth (is it one spot? Several?) To maintain the systemic chemo control. It's common in breast cancer to take that approach. Then go for that second opinion, for peace of mind. Clinical trials...I think cancer research maintain a database of what is available but not entirely sure. Could also turn into a huge faff when perhaps you would rather enjoy the time.

@TwigTheWonderKid well, the game isnt over until its really over so it sounds like you at least have some more avenues to push again.

I'll admit to chanting the its another day mantra lately as I'm waiting yet another week to find out the plan. From there ill have to get a second opinion and scan read myself. It was that or spend the next 8 days in a heap on thr floor. Sometimes it works, but I look down at my atrophied leg or get pissed off waking yet again after an hours sleep in pain and I'm just so fed up with this shit now.

@GoldenDog1 I tell them not to say 'sharp scratch' and just get on with it. For some weird reason it hurts less! I'll think of you too.

Happy Mothers Day. 16 year old DS wrote lovely things in my card which made me a bit weepy. I only wanted daffs and a card but he went to Lush and got me a bathbomb too. He also made me the most amazing pancake.

I feel like I've had a wee bit more energy today, very slight, but noticeable. See what the blood test results are tomorrow.

Whatever gets you through @HerbalRefreshmentt - I do meditate, Yoga nidra meditations are my favourite, and I also found one for pain which works for some pain, especially when combined with Oramorph. Waving my magic wand like Granny Weatherwax and wishing you a good night's rest.

Oooh @WrenNatsworthy can you share any of the meditations? Interested in the pain one or any really.

I use the Insight Timer app. It's free.
My favourite Yoga Nidra meditations are from Jennifer Piercey.

The pain one is 'Pain relief meditation' by Gail Weissert.

There are quite a few so you can do searches and find the voices you prefer.

@WrenNatsworthy Thank you so much, I'm just now listening to Gail Weissert on YouTube.

Had an email from hospital

They're going to review my case and treatment plan at the MDT tomorrow

@Tilllly That sounds tentatively good? I think? See what comes of it anyhow.

Have been loving Daisy thread

All my everythings crossed.

I feel crap today. Had blood test from district nurses but no results. No phone call re transfusion this time. We shall see.

@LuciaPillson

@Tilllly Driving Miss Daisy

Ohhh! Why didn't I think of that?!

@WrenNatsworthy oh yes the "sharp scratch" mantra.
I'll tell them not to say it to me on Friday.

@Tilllly fingers crossed for the MDT meeting.

For meditation I've been using an app called balance.
It's currently all free for a year.
It's a simple app but they have all different categories including pain, fear, anxiety and sleep among others.

She is SO ridiculously adorable.

I've spent the past two days planning a trip to Australia in the summer. I should be at work but a combination of incompetence and people being too busy to read emails means I still haven't had my occ health assessment.

So now I'm ridiculously excited about the planned trip and having to temper that excitement with the knowledge that I may not be well enough to go. Which is shit.

Ho hum.

I am @WrenNatsworthy

😂😂😂

@SewingBees yeah, we were cautiously considering a Western Australia road trip for April this year and.... thats not gonna happen. Along with open water swim camp in Spain in May, or just getting to some sun anywhere. We've cancelled so many trips at this point I just feel gun shy about even planning anything. Im really, really irritated this crap still isn't sorted with my leg, but I guess we all know the risks with planning anything with this disease. Hey, keep the faith and keep planning but with some good insurance and travel when you can - a lesson I really learned because work crap is never not going to be there/stupid.

Waiting until I get the PET scan results next week to figure out how long the rehab on this leg is gonna be, but next goal is my parents 50th wedding anniversary celebrations in the US this summer and a swim holiday to Palawan, Philippines next March. Or hell, Palawan in general even if I may not quite have the swim fitness.

Ah - yoga nidra! Thank you for the reminder ladies, I had started that back in November and found it really helpful. I found some free versions on Spotify but maybe Ill try that other one suggested above.

@Tilllly when do you find out what the great consortium of oncological brains has agreed?

Feeling totally old before my time tonight - ordered a foam chair pillow with bony parts cut outs 'good for muscle wasting and sitz bone swelling'. sigh thanks Everolimus, you not only didn't sort the cancer on my sitz bone, you also made my butt go away. Hoping this makes sitting a LOT more comfortable as Im tired of looking like the Leaning Tower of Pisa and its messing with my posture.

Tomorrow @HerbalRefreshmentt

It probably won't make any difference, but at least it's been reviewed by more than one person

Yes, you bloody are!

@HerbalRefreshmentt Loving 'great consortium of oncological brains' - G-COB for short?

Hey everyone I hope you're all doing ok. @TwigTheWonderKid definitely try and get a second opinion. I know the Christie take private patients for hipec but they also get funding from
NHS England.

@Tilllly I hope you get some good results from
The mdt. Keep advocating for yourself!

I've got a pet scan on Friday to see if my trial meds are working. The pain is less so I'm hopeful it might be working!!

Fingers crossed 🤞 @ShalommJacki. When will you get the results?

In a week I think. I'm hoping it has worked, the pain in my liver is gone so it must be doing something or I'm just used to the pain!! 🤣