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

[Tilllly]

New thread
All welcome, reluctantly

@ShalommJackie Wow, amazing results!!! I am so pleased for you. 🎉

Well this fucking pain is escalating day by day. (brain whisper: this can't be good) This morning maybe 5.60 to 6ish got to the loo, then hit with pain on way back, got back in bed and took 30mg codeine. It then took till 8.15 before I could even sit right up on the edge of the bed. Managed to stand at 8.30 and felt miraculous. Go me.

Problem is pain is in my core so any time my core muscles try to tighten to get up it's a hell no situation. So if even my back twitches or I cough it engages the abdo muscles and I'm yelling in pain (my reflux makes me cough and I sound like this: coughOW! coughOW! coughOW!). 😅

Now up and contemplating second dose.

I see palliative doc tomorrow IF I can get there (!) and we'll have to have an urgent conversation about this.

@WrenNatsworthy Thinking about you, hoping that they can do the procedure thing and it works.. if that is still on the table. Wishing the best possible scenario for you

@Tilllly Daisy IS my pain medication, I hope you realise... I swear I looked at that upside down blissful floof and felt better

@LuciaPillson So sorry to hear that the pain is still there. Keeping everything crossed for you for tomorrow’s meeting with the palliative team.

I merrily trotted to get my bloods done earlier this morning and the nurse says see you tomorrow at 14:00. Errr, my appt. is at 11:00, here is my appt. card. So she went to check at her computer and sure enough, the appt. tomorrow IS for 14:00. Bloody hell, not good as DS finishes school at 16:15. There is no way I can be done, dusted and make it back on time. So whoever wrote my time on the card 3 weeks ago made the error. And that’s despite me repeatedly saying that anything after 13:30 is not feasible due to me being a single parent. Last time I ended up in the ward for almost 3 hours due to the pharmacy messing up chemo mixture - my appt. was at 12:00 and I didn’t get out of the ward before 15:30 because of the pharmacy fuck up. They did phone me 30 mins. ago saying they have a slot at 12:00 tomorrow, phew. I must make sure I double check the time on the card for the April treatment matches the time on their system.

@balkanscot How very frustrating and you're right, you're going to have to monitor it. I often tetchily wonder why it's my job to chase everybody up and make sure they're doing their jobs. Just another layer of purely unnecessary admin when we are so ill.

@ShalommJackie Delighted to hear your good news.

@LuciaPillson Pain sucks, I have everything crossed that it isn't something new, though we all know that luck doesn't really come into it.

@WrenNatsworthy Any news on the potential procedure. I'm hoping they go ahead and it's successful.

I'm at the hospital waiting to collect my mum and take her home. She's having a biopsy on a tumour on a lymph node at the top of her lung. It was first discovered in 2019 and has just started growing. So we'll find out if it's secondary to her breast cancer, or a completely separate thing.

Sorry, posted too soon. Mum made me book a holiday to Australia on the weekend. She's paying, she says if she can't go on nice holidays she wants me to while I can. I'm so excited to take my daughter and show her where I used to live and work. I just need to stay well enough to go, it's in August.

@SewingBees Best wishes to your mum. How incredibly sweet of her to book Australia for you and I hope so much you'll get to go. I could possibly whack your cancer with my umbrella so it won't do anything before autumn?

I know at least part of what the pain is, it's the new fun shiny aggressive mets to ovaries/pelvis, which have been giving me symptoms since they decided to appear suddenly. Total attention seekers. I guess other things may be involved too as other organs may have decided to join the party (I'm not much for parties but can state this is the worst one I've ever been to).

This photo made me smile 🥰

@LuciaPillson I'm sorry you are in pain. I hope you are able to get on top of it & hopefully you have a positive appointment with the doc tomorrow.

@balkanscot it's bloody frustrating when even simple admin is wrong.
I seem to spend my life chasing appointments or correcting things these days.

@SewingBees best wishes to your mum.
How lovely of your mum to book you a holiday to Australia and will really give you something positive to look forward to.
I'll keep everything crossed you stay well and get to really enjoy your holiday.

@WrenNatsworthy I've been thinking about you today and really hope you are ok.

Not much going on with me.
I've felt quite well today which is a bonus.
I'm going away for a few days next week and I can't wait to just get away from here with no hospital appointments.
Fingers crossed this week's chemo doesn't hit me too hard and I can just relax and enjoy my few nights away.

I hope you get some relief @LuciaPillson

My cocktail seems to be dealing with the main bone mets, but not the rib fracture or whatever is wrong with my knee
Pain is so wearing

I shall deliver floof images to assist!

Nobody but nobody need live with pain. It's the one thing that can be got right. I'm urging the gods to whip crack away on that for you @LuciaPillson

Glad you got the appointment time changed @balkanscot , it's the little frustrations that send you mental.

I'm still in hospital. I found my inner Goddess and refused the medication change re my citalopram. I did some googling and the bleeding risk is negligible, in some cases disputed, and doesn't affect kidneys. My body, my choice! That consultant isn't working this ward again this week.

An interventional radiologist reviewed my scan results and said he felt confident he could do the procedure. I was put on the list for yesterday but it ran over, so I'm having it today.

It was DH 50th birthday yesterday and they let my family and 2 other families use the staff team room last night for cake and presents. My mates organised a great cake and a quiz and I managed half an hour out of bed. DH was happy and we laughed a lot even though it hurts to laugh because of where my pain is.

@WrenNatsworthy
Hope it goes smoothly

Will check in on you later

Tell that surgeon the MN army are watching!

@WrenNatsworthy I really hope it goes well. Glad you got to celebrate with DH
Good for you taking charge!

@Tilllly That really made me laugh! We can all go to appointments now - saying - the wrath of mumsnet will come down on you, if you don’t do your best!

Hope you all have the best day you can.

Think I have a UTI (tmi?), don’t know if that’s GP or MacMillan nurse. Neither are easy to get hold of.

xx

@WrenNatsworthy hope all goes well today.
I'm happy you got to enjoy some time for your DH 50th.
Sounds like it was good fun x

Oh @WrenNatsworthy this all sounds so hopeful, yay for inner goddess. Not fair that it hurts to laugh. Best of British luck for the procedure. Shall tell palliative doc that @WrenNatsworthy says I must not live with pain, she will I hope take it with the gravitas it deserves.

Daisy dislikes the postcard from Royal Mail saying I owe them £1.50 before they deliver something....

@Tilllly we give our dogs the letters from the TV licence people, there's something satisfying about seeing them ripped to shreds!

@Tilllly Daisy may gladly have our council tax bill too! What a joke!

Ooh useful pup

Haha good for Daisy lol

Well done, Daisy!

@WrenNatsworthy what a great compromise and it sounds like it was as fab as it could be under the circumstances. best of luck for tomorrow and recovery after!

Procedure was done by 12pm - the good news.
Less positive is that I was in pain straight away and there is still horrendous pain.
Regular morphine injectiond into my belly aren't touching it.

Lighting mental candles for us all, and setting fire to pain

@WrenNatsworthy

You shouldn't be in pain. Get some additional drugs

Amitriptyline and paracetamol work well with morphine

@WrenNatsworthy I’m sorry. Can’t say anything else helpful - that’s truly crap.
I hope they look after you tonight. X

Oh no @WrenNatsworthy that's awful, I'm so sorry and don't like to think of you in such pain. I hope it's just post procedure and will go away. As @Tilllly says is there anything else you can beg for to help with pain relief? Or something to make you sleep maybe? Many hugs.