Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

@Enigma54 it’s almost as if the powers that be think up all the indignities you can visit upon a human body and spew them out on us at random intervals.
”oh hey it’s been 5 months since radiotherapy, let’s visit crippling pain & a cracked rib upon her”
”yo, excellent idea. What about constipation, we done that one yet?”
”no, just UTIs but let’s add no poop, mix it up a bit”

@Sausagesforever I had to chuckle because you are SO right!
“ you will ONLY poop if you down a bottle of lactulose and eat a pound of figs”

” If you want to wee, you must drink 10000 litres of fluid a day, so you are chained to a loo”

I mean what the hell is this charade??!!??

Bad day today. Looks like nephrostomy is on the cards now. Sarcoma is causing absolute mayhem. Quality of life, precisely zero! ☹️

I have suddenly hit a wall of exhaustion & generally feeling like crap. But can’t put a finger on it feeling like crap if you know what I mean. Part of me is thinking why bother with chemo if it’s just going to prolong this shitty quality of life.

@Sausagesforever I hear you. I was thinking the exact same thing as my chemo appointment card landed on the door mat today. I told DP, I’m not doing it because I can’t. I’ve had enough. It’s terrifying having to do it all again with the scans in-between. Solidarity.

Aaaaand the fuck-wittery continues.

Next appt booked for April. Fine & dandy. Convenient time. Get out the fucking banners 🥳.

Get home from collecting meds, check calendar & realise appt is for AFTER I'll need the next prescription.

Fuck.

Me.

Fucking.

Sideways.

It's not fucking hard to look at dates & go "this appt needs to be BEFORE this date".

I'm on the fucking wine. Not the most sensible solution but fuck me. How hard is it!? I know...we made it extra hard this time...lets make it harder next time. She's not likely to be already stressed.

Fuck sake. There are not enough eye rolls in the world.

I will join you with the wine @lucysmam to end an utterly shit week! 🍾🍷🍾🍷🍷🍾🍷🍾

@EachandEveryone how are you getting on?

I’m sorry I’ve gone quiet and I have bottles of wine and champagne untouched since this started. I can’t trust myself as wine leads to cigs.

I went to the west end to watch a matinee and it exhausted me simply because there’s stairs every where on the underground.

physically I stink I’m like am old lady having to change my pads two hourly. I cant see a way for it to close up it’s so wet.

anyway they dragged me back in this week as my potassium was 6 I felt it as well my hands were jerking and I was exhausted. It must be ok. So we had a discussion and the immunotherapy that caused the colitis he’s reintroducing it. He says I need everything inside me now. I just pray I don’t get it again. I wonder what the chances are?

how is everyone? I’m in the oncology assessment unit, think I might be staying in for a while. I’ve got absolutely violent 💩 and it went dark green so I freaked out and rang them they told me to come in so I did. Then I remembered that I’d had a slushie for tea and it was blue so it was probably the colouring going through me so so fast, however I’ve also got a temp of 39.5 and I feel really really unwell.

Hope you’re all doing ok xx sending you all so much love

@sellotapechicken it sounds as though you're in the right place, let yourself be looked after (but get someone to bring you decent food). I am smiling at the slushie coloured 💩 though 😁

I’ve got DH and my lovely mil coming in with food for me when they decide I can eat again. They thought I had c.diff (I don’t think so as it doesn’t smell like that- it’s unmistakable) but when I got to the blue slushie he just started laughing 🤣

What’s happening @sellotapechicken any developments? Are you still in hospital?

@EachandEveryonehow are you? Have you started back on immunotherapy yet? Did you break open the wine? If not, do it 😊

@balkanscot I think of you and DS everyday and hope so much, chemo is working and giving you less of those shitty side effects?

Hello to everyone else, I hope you are all okay ( ish?)

I started round one of “forever Trabectedin until it stops working” on Wednesday. It’s an infusion administered over 24 hours, via my port. I get to come home with a plastic bottle containing a balloon filled with the drug. Then the district nurse disconnects me, after 24 hours. I’ve to hope and hope some more that it works because there are no more treatment available. 🙈

Im still in and will be until they get on top of my symptoms

trabectedin is what got me to NED

The diarrhoea has been something else.

I deactivated my facebook after I got a friend request from a patient, but I really miss the group, so I guess I’m going to re download it. I love you all. I’m hoping you’re all doing ok xx

I’m going to re download Facebook And add you all as friends again as I unfriended people as I deactivated fb.
it was all a bit much

How is everyone getting on?

@Walkingnotrunning1's husband has posted on her Facebook page that she passed away on Saturday morning. As she updated on here, she had moved to hospice care a few weeks ago.

Well I went to see my consultant about this leaking tumor that’s popped through he looked at the photos of it and said this is all for the TVN’s to deal worth amd that there was no point him physically seeing it no nurses on today to help me and he saw the photos yesterday. He’s written me up
For metronidazole to give to the nurses. I’m also starting oromorph to get on top of the pain. I need to ask the nurses about putting some sort of drain on it. I’m ringing the palliative team this afternoon he can’t believe it’s been 21/2 years. He said we need another scan. And I’ve been restarted on the immuno that gave me colitis please pray it doesn’t again! He said we are planning on living with it and I’m nowhere near to dying yet but honestly this leaking feels like the end of the world

I’m sorry to hear about @Walkingnotrunning1💐 I hope the hospice care was good for her and she had a quiet, comfortable end of life.

I’m sorry @EachandEveryonethat sounds like a total bastard. Your oncologist doesn’t sound great either. 2.5 years without a scan and more immuno that gave you colitis? That’s rubbish. Has s/he referred to the TVNs? I’m on oromorph and it can be helpful, particularly for the shortness of breath. My prescription says every 4 hours but gp says anything over 2 hours is fine at minimum dosage. I hope it’s helpful for you.

It’s incredibly sad to hear about @Walkingnotrunning1Things did deteriorate quite rapidly for her, but I’m relieved to know that she received good hospice care.

@EachandEveryonethat leaking tumour sounds horrid. Fingers crossed no colitis with the immunotherapy. What are they aiming to do? Shrink the tumour right down? Sounds like you are well overdue a scan?

@balkanscot how are you getting on?

Omg I’m having scans every ten weeks minimum😀 it’s 2 1/2 years with cancer of unknown primary. My consultant wanted me to have immunotherapy straight off but no one would pay so here I am having it on compassionate grounds. Of course hrs got to add it back in we have no alternatives ☹️

Still feeling sad about the death of @Walkingnotrunning1 It happened so fast and it’s just so unfair..

@Enigma54 me too. I keep track of people's usernames and cancer type, treatment etc, have done since the start of the thread, and there are a lot of people no longer with us now.

I've discovered a big lump on my neck just above my collarbone. Probably a lymph node, probably cancer.

I'm waiting for an emergency ultrasound appointment to get it checked and biopsied.

Fuck.

@SewingBees I’ve got everything crossed that the enlarged node isn’t cancer. How long will you have to wait for u/s and biopsy?

I too keep track of peoples cancer types and treatments. I know losing people is a given reality of being part of a stage 4 group, but that doesn’t stop it stinging.

I was thinking of all those we have lost and how some deteriorated so quickly.

Hoping for ultrasound early next week at the latest. The fabulous oncology nurses will do all they can to get me an appointment asap.

Yes, it's often a very fast decline when the treatment options run out and the last one stops working.

They told me not to worry but they might as well have told me to run a marathon.