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

[Tilllly]

New thread
All welcome, reluctantly

Oh and I had the ultrasound on Sunday morning so had to go back to the hospital on the Saturday for another blood thinning injection. They apologised, said they should have sent me gome with some. Had ultrasound, no dvt. Which is a bonus.

It has not been FUN.

Hope those who haven't posted are all ok, hugs all round ❤

@RedRosesPinkLilies Thank you! Pain greatly helped at beginning of cycle it seems then comes roaring back on a motorbike near the end. It's not too bad really but I may need to have another talk with the palliative doc so I have more options for the worse days.

@ShalommJackie No tumours sounds pretty good, but the other things aren't so easy, good luck with it all.

@WrenNatsworthy How awful for you not to be able to get pain relief, it's not good at all if pharmacies advertise longer opening hours than they have, I suppose they have to have a pharmacist on duty to dispense though. And then a badly written script too, wish docs would take more care sometimes. Hope you can see someone to get the dosage of the neuro one right and the morphine fills in the cracks but so sorry you are dealing with this, pain just takes up all available space and makes normal living so difficult.

Er, it seems very wrong but your message to @TwigTheWonderKid has made the following phrase lodge itself in my brain 'It takes someone with a vagina to find her an un-haddocky flannel' Clearly I need more sleep.

Oh @TwigTheWonderKid I'm always being told off about my veins. I always suggest they get someone from paediatrics in who can cannulate babies, or a phlebotomist. It shuts them up. It's about the skill of the practitioner. I refuse to be guilt tripped any more.

🤣🤣🤣

It's true! A line that would fit beautifully into The Vagina monolgues.

When I go for C.T scans they have the picc team on hand with a ultrasound to map your veins it is so much better.I guess there is not enough machines or people trained to use them for them to be a regular feature on wards. It is a simple thing which takes away so much discomfort they should be on every ward.

So many people having an awful time on here it's difficult to know what to say apart from you are in my thoughts💕 (I could bake you a virtual cake what would you like?)

Cheesecake please!

Ok!x

I got cellulitis in my feet and legs and had to go to the hospital every day last week and this Monday/Thursday for bloods and other random tests under the sun (ultrasound, CT, etc), mostly because my inflammation marker was really high and risk of needing to be admitted. My oncologist dropped the ball AGAIN with me flagging something early (like three weeks ago) and it was a rather tenacious locum who chased all this down. I was exhausted by the end and am on antibiotics until next Monday at least. A little worried I still get elevated temperatures (but nothing way outside high normal) but my feet and legs look and feel better at least. Currently shopping for a pair of Crocs - they have a student discount, they need a Stage IV discount.

Fed up at this point, but it sounds like we are ALL fed up with one thing or another happening. Definitely time for cheesecake and non-haddocky flannels!

I could go a slice of cheesecake please.

So I'm still enjoying my mini break on the gastro ward at Kingston. Was supposed to go home today but I had a temperature spike and my infection markers have gone up so I need to stay in for more IV antibiotics. Yay!

Saw my oncologist today (weirdly as an outpatient whilst an inpatient which at least meant I got to put on actual clothes). Was dreading it as I'd been told by A&E doctors the scans I'd had there had showed progression but actually it wasn't as bad as I was expecting. A tumour has grown but it's one of the Krukenberg tumours on my ovary. So she is going to send the new scan to Imperial in the hope that they either decide to still consider me for the cytoreductive surgery or, if that's not possible, to operate to remove my ovaries at least as those tumours respond much less well to chemo. If Imperial won't do the ovarian surgery, it's possible it can be done at The Marsden in Sutton.

When I got back my bloody cannula came out again and I think the nurses were playing rock, paper, scissors for who had to redo it! Two nurses and one ANP tried but failed but eventually a lovely doctor managed to get one in, which was a relief as they were talking about putting it in my foot...

I want Taco Bell. And a Campari and soda. And my cat.

@WrenNatsworthy thank you. I'm very lucky that my melanoma is Braf + and has responded to the targeted therapy I'm on. I've now got adrenal insufficiency, no thyroid and colitis. I really am feeling very fortunate though.

My oncologist has said it will stop working at some point and the tumours that have gone will likely return but I've got 2 more lines of treatment left. Im beyond exhausted with all the cancer admin!

They keep asking me to 'pop into clinic' which is 45 mins away!

Ooh @HerbalRefreshmentt I got DH some footwear that you might benefit from. He is a massive lover of Crocs. Google Bjorgk. He said they are the comfiest he has ever had.

@TwigTheWonderKid i sympathise muchly. When I got given my prescription on leaving SDEC, I got put on another course of antibiotics for a really spurious reason after just finishing a course only 5 days before. I had to ask why because nobody had told me. I was told that it was in case a canula had caused an infection. The one that became misplaced and put lots of blood into my tissue making it look like a massive bruise.

This was 3 weeks ago and I'd had antibiotics at the time. I said as much but was just told 'you need to take the antibiotics'. Oh, ok then.

Hospitals. Gah. May you escape ASAP

@ShalommJackie it was Lucia Pillson who had 'atted you' not me. Not that I'm not pleased for you!

I had immunotherapy in 2020/ 21 (one ipi/nivo then 3 ipis alone as I couldn't tolerate both). I got cholitis which turned into pancreatic insufficiency later on, type 2 diabetes which is now in remission, and arthritis. It's a strange one. Unfortunately has less chance of working on ocular melanoma metastases than it does on melanoma, but it did keep it at bay for a while.

Mmmm cheesecake

@WrenNatsworthy so sorry! Fat fingers!!

A little brag, have survived first MRI
<immediately gets hit by bus>
Now it will show what I've been suspecting, that I'm at this point just a mass of tumours held together by an unconvincing human skin. I'm in no real hurry to learn this.
But, it's ok because I have a little stone previously bought at the hospital with a picture of an oddly purple tree on it and the word 'relax' in gold typescript which is slightly askew to show sincerity. It sits on my keyboard but keeps falling over.
Result is, I'm a very very relaxed writhing mass of tumours held together by spaghetti, medical tape and tattered hospital bracelets (so many, and while I was typing this, 'relax' fell over again).
They also had evil eye beads at the hospital today so I got one, smart of them to have covered all the angles in case medical science fails. 🧿

@LuciaPillson I am sorry, but that did also make me laugh! Does describe us all! This nonsense about ‘you look so well’.
Pity they can’t see the writhing mass of tumours underneath.
I absolutely hope the result is better than expected. When will you get it?
x

@RedRosesPinkLilies

Funny thing is I don't look well, forehead a mass of stress wrinkles, hair of grease and thinness (it's the new installment of the Game of Thrones series).

I'm very ostrich/sand about test results, I don't ever want to hear them really, weak I know. It was fine during the year I was stable, I mean the screaming internally with panic beforehand kind of fine, but the news was goodish, now not so welcome. I had a Bad Time when my new and improved mets were announced unexpectedly in onc office.

I am however in negotiations with my palliative care doc about hitting me over the head with a frying pan when the time comes, I think she's considering it. Make, model and price yet to be discussed.

@LuciaPillson You definitely have a good sense of humour, but I know this is not easy.

It’s not remotely weak not to want to hear bad news, because we probably know ourselves anyway, and why on earth would anyone want to actually hear their demise being slowly charted?

I am sorry and it’s hard to know what to say. I think I will be in the same position before the end of this year.

I'm not sure how I’m going to cope, but this thread does help because we are all at different stages on the one path. I think this thread lets us be who we really are as actual people and doesn’t focus on us as cancer people.

I am fed up with the people who don’t seem to see ‘me’ anymore, and seem to just focus on the cancer. Sorry, think I’ve drifted a little.

I am sorry @LuciaPillson - but we are all with you in spirit. X

Day 9 in the gastro ward. If they don't discharge me soon they'll be transferring me to the psychiatric ward. Infection still refuses to go.

@LuciaPillson I'm super jealous that you can shop for amulets in your hospital. There's only a teeny Boots here for toiletries and an oddly stocked trolley pushed round by volunteers ONCE A WEEK !

@TwigTheWonderKid Well that's no good, need to light a fire under those volunteers... literally, and some demon guards to crack whips at them, you'd soon be seeing the trolley every day though possibly redolent of brimstone?

Our shop is very wee but does stock some useful stuff and has the only imodium I can swallow easily. Just wish they would not do lottery as it makes the tiniest queue take ages and you have to listen to the machine going 'Winner!!!! Gagnant!!!!' and then the person starts dithering as to what else they might get with their winnings and all the time you are standing there WITH CANCER just wanting to pay for your stuff and trying to remember who called lotteries the 'moron tax'. 😋 (My Dad did the lottery and he was very bright, it seemed to keep him entertained and he made enough to support the hobby so all good I guess)

@LuciaPillson you are on fire today, girl, what wit! Had a good laugh at all your posts. I guess at some point the black humor takes over cause rationality went out the door weeks ago..

Currently awaiting husband to show up with clothes and tech as I got admitted due to this infection that won't go. I was starting to feel ratty again last night/this morning and my leg hurt a ton, inflammation markers went back up even though I'm still on antibiotics. Ah well, I figure its a few days away from demanding cats and my boring room and maybe someone will finally fix this shit (Hint: the infection is coming from inside the hip!) Watch some TV, read a book, eat gross hospital food, mini vacation! This time im in my own room but connected to my neighbour through some door that is always locked so I'm sure there is a chance for laffs yet.
@WrenNatsworthy no chance to shop for Crocs yet, though duly noted!

Oh @HerbalRefreshmentt we are IV antibiotic twins!

I've had a lovely day. Had a lie in, then a long soak in a perfumed bath. Had freshly brewed coffee and flaky croissants for breakfast. Did a little light shopping for shoes and handbags and had a delicious long lunch by the river with a massive glass of wine, followed by a little snooze.

Oh no wait, I am misremembering! Having been woken several times in the night for obs I was then shaken awake at 5.50am for my antibiotics for which I have to sit up and still.

At about 7am someone started using a pneumatic drill outside the window.

At 8am my breakfast of cornflakes and soggy toast arrived but my enjoyment of this was interrupted by the need to get to the toilet to deal with the lovely antibiotic-induced diarrhoea. But workmen were smashing up our (admittedly rubbish) toilet with a hammer so I had to charge down the corridor to find another loo.

Back for my breakfast, which had not improved whilst I was away, and then a nurse and I played a game involving her stabbing me with needles in a seemingly futile attempt to steal yet more blood from me.

Doctor came round and said I'd probably need to stay another day.

Then the lady in the next bed had her daily and very lengthy visit from HER SHOUTY FRIEND.

Lunch was unremarkable.

Then I tried to read my book but no amount of passive- aggressive sighing on my part would shut up SHOUTY FRIEND.

Doctor came back and said something was down and something was still up. Said her daily " hope to get you home tomorrow" bit then added that if I couldn't be discharged tomorrow I could go home on a "day pass" at the weekend. Wondering if I'll get an ankle tag.

Dinner came at 5.30, swiftly followed by DH and the DSs, who left as soon as was considered decent.

I can now look forward to another thrilling evening here iny penthouse.

Oh dear @TwigTheWonderKid I am nodding in solidarity, I am with you in spirit.

Have you had the cheese and biscuits with the cheese you can't open yet? I started saying no to toast as I just couldn't deal with the bendiness.

SHOUTY FRIEND might be deaf, hence oblivious to your sighs. I suggest you accidentally throw your book at her during a drug side effect arm spasm. Might do the trick.

I think the NHS firmly believe that cold soggy toast cures all ills. It's the same as teachers who always recommend a wet paper towel to cure all playground mishaps! X