Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

@balkanscot I have so much sympathy! I have had a pain under my ribs for 2 days which I've convinced myself is my liver lesions gone mad. Never mind that I have no other symptoms.

I have a lump under my left arm and another lesion has appeared on my head.

Never mind next Christmas, I'd just like to make it as far as seeing Taylor Swift in August at this point!

Going to call the GP tomorrow and ignore it all today.

Am in hospital today with suspected gallstones.
Had to call paramedics at 5am.

The pain is horrific.

Waaaaaaaaaa!

Oh no @WrenNatsworthy . When will they know if it is gallstones and if so, will they operate?

Bloody hell @WrenNatsworthy

Any update?

Oh no @WrenNatsworthy, poor you. I've heard the pain is worse than labour pain. Hope you're more comfortable now.

@WrenNatsworthy what a bummer! I hope they are giving you enough painkillers on a plate. What happens next? Do they tend to operate? Keeping my Cape-battered fingers crossed for August/Taylor Swift. 🎤

I made it to my in laws this afternoon. Apparently my DS wants to go glice skating ⛸️ at Loch Insh (near Kingussie) tomorrow, synthetic surface rather than traditional ice. Lord help me, I don’t want any injuries on top of the heap of shit that is stage 4.Nothing will come between Cape & me! Well, assuming it’s working. My feet have become quite red & tender today (I am 24 hours in of my week-long Cape break), have been slapping on Udderly Smooth and staining my socks with white residue. 😳

Hello my darlings! It wasn't gallstones. They think it was a very heavy reflux! Honestly it was debilitating. I hadn't overeaten at all but my body clearly can't cope with Christmas food.

They were brilliant, lots of drugs, two scans, sent me home with drugs and have ordered an urgent mri.

Pain finally stopped at 4am Saturday morning and I've been eating steamed carrots, melon, that kind of thing. No parties for me tonight.

Happy New Year everyone - we made it. I'll raise my one glass of Baileys to absent friends including our @mowly77 at midnight xxx

🎉😅🥰 am so glad to hear that @WrenNatsworthy
That's worth another mojito I think
I lifted one earlier to Mowly and to all of us on the DFSC threads

Some good news at last 🙂

PS @WrenNatsworthy
What's the MRI for?

Happy New Year you amazing, lovely women! 🍾

@WrenNatsworthy that's brilliant news. I sometimes get appalling reflux but it seems totally random and unrelated to what/how much I eat.

I haven't had an mri since May. It's a weird one because I'm now off treatment.

They want to check on the liver / lungs situation and also check that I don't have mets elsewhere that are affecting my digestion. I'm pleased actually because my main Oncologist is a bit weird about doing more scans, even though the other Oncologist up at Clatterbridge can see that knowing what's going on inside my body is good for my mental health. Main onc is very logical- his thinking is 'well she's dying anyway so what's the point', so if I want something from him I have my Aunts with me on speakerphone to help me to communicate with him.

Rare cancers are a bastard.

Still waiting to hear from dermatology about the subcutaneous lesions on my scalp. I'm riddled with it!

Hello everyone and Happy New Year!

Took a little internet break. Currently in the middle of antibiotics saga as have chest infection and been given antibiotic tablets the size of the first joint of my index finger and have refused to even attempt them as body has weird small openings that things have to pass through and these tablets are more suited to Hagrid than to me - in my opinion. Pharmacist at my chemists was quite dismissive so have rung hospital chemists and they say I can smash up the tablets (you can't do this with a lot of drugs but apparently this is ok). However I can't imagine how nauseatingly grotesque they are going to taste.... about to find out as first dose is in an hour. Will put in a couple of plastic bags and bash with hammer I guess, much to the delight, I assume, of neighbours.

All my doctors are suddenly Irish, well not all but enough to form a statistical blip.

@WrenNatsworthy Oh I'm so glad it wasn't gallstones. But the pain sounds as if it was awful, poor you. I get reflux which oddly doesn't hurt but I get spluttery heaving coughing fits and it's as if my entire insides have turned to liquid. Happens especially if I am silly enough to bend over for any purpose. Once some liquid including bits of minced chicken actually fountained out of my nose much to my surprise. I don't usually reverse snort chicken.

@balkanscot It must be beautiful up there. I am rather envious. But why skate if you can sit wrapped in a tartan blanket sipping Drambuie in front of a roaring fire perusing the novels of Sir Walter Scott?

@TwigTheWonderKid Happy New Year! Hope all is going well or wellish (wellishly?).

@Tilllly Am vicariously enjoying your mojito. I've actually never had one and it sounds like something I would have enjoyed at one time in my life (don't drink now and should avoid mint too).

@AGreatUsername Sounds like a really lovely Christmas!

@HerbalRefreshmentt The French Alps sounds wonderful. Sorry about the leg, though when you spoke of getting it ironed out it made a strange picture in my head!

@Silkiebunny Lovely floof you have!

@balkanscot ah, sounds like cape is working. I bought a bunch of cheap cotton spa socks from Amazon while I was on it so I wouldn't ruin my good normal socks.

Thanking all the stars ans gods tonight the tube strike has been cancelled as I have monthly hospital visit tomorrow. I have a strike route but thats at least 2 hours plus back in my day, less hassle, and hopefully quiet trains.

Happy new year everyone. I commented a bit on this thread when Mowly started it but I tend to have internet breaks & have been having a full on time with DD who is autistic & now home ed. I was so sad to hear about Mowly 😔. Hope everyone is ok?
I went back on treatment early Dec & reacted badly to part of the treatment- I felt so weak & depressed. I’m asking my oncologist if I can stay on the targeted part of the treatment & lose the chemo (had it before & had progression with it anyway). Also have a met in my clavicle that is causing me a lot of pain despite radiotherapy. If it wasn’t for the bone met I could be more active & I’m finding it really frustrating. Hope your hospital appointment goes ok tomorrow @HerbalRefreshmentt. I have one tomorrow too! Thank goodness the strikes have been called off.

@LuciaPillson you can have a virgin mojito

Repeat MRI tomorrow to see if the lung cancer has spread to my brain. The oncologist thought the dot they saw was an artefact of the scan.
But am a bit stressed by it - bloody hate MRIs anyway

I'm usually quite upbeat and positive but am on a downer. Prob wasn't helpful to google survival times for stage 3c lung cancer... and signs of a brain tumour... 🤦‍♀️ I tell other people not to google

Best of luck to all of you with appointments/scans Monday.

@Tilllly Here's to it being an artefact! Tell Google if it frightens you again I shall hit it over the head with my umbrella. 🌂I think my mojito would end up being tap water, fresh lime juice and honey but still could be nice? If not quite a mojito and if I had limes....

🌂 thank you @LuciaPillson 🌂
That will stop Google in its tracks!

I shall give my head a wobble. All will be well. And stressing about it won't change anything

Voila

Looks like a lot of lime

Hello everyone.

How are your feet @balkanscot ? Sending you massage vibes.

@Tilllly all my everything's crossed for good brain results. I'm adding my umbrella to @LuciaPillson 's to smack Google with. How satisfying!

@Bluekangaroo123 just pop up anytime. Hope you have some good drugs for the pain.

I had a CT scan of my head and torso yesterday. Bit confusing as it's now through the GP rather than my Oncologist, as I'm off treatment. I had someone from the GP call me today, as they'd asked me to make an appointment. She then asked me how she could help me. This was mightily confusing as I was under the impression they wanted to give me some information.

I ended up having to explain my whole situation, the fact that the Ocular Melanoma mets in my lungs can't be treated and why. She was nice but I just could have cried.

I'm seeing a dermatologist on Saturday, hopefully he'll agree to remove the lesions from my scalp, but who knows.

I feel like I'm at sea a bit.
I had an X Ray on 'reflux' day and she told me vaguely what it said. Lots of pulmonary lesions. I don't know how many compared to my scan in May.

Be nice to know vaguely when I'm likely to drop dead I guess, my will isn't complete yet.

@WrenNatsworthy that sounds disjointed 😡

Yeah it is.
I have my regular appointment with my nurse at the hospice in 2 weeks, I'll talk to her about it.

Hey everybody, sounds like we're all in various crappy places, right now.

I'm on my 8th and last round of CAPOX. Brilliant timing with the weather so blooming freezing, can't go downstairs to it's too cold and setting off the neuropathy big time. Will be having a CT scan (with two types of contrast, is that normal?) which will then be sent to Basingstoke who get to decide my fate about whether I would now be a candidate for Cytoreductive surgery and HIPEC. If that's a "no" again I have no idea what's next.

Also have a pre op assessment on Friday to look at changing my kidney stent and a long overdue cardiology appointment next week. Yay!

As ever my head is all over the place. I suspect I can't keep the lid screwed down on my "denial jar" and think it might be time to organise some counselling that the hospice offered me.

Am lying in bed watching Saltburn and waiting for poor DH to bring me a warmed Coke (yum...)

Feckblasted fecking feckly chest infection is ignoring the antibiotics and I only have 3 doses to go, it should really be gone by now as I've had 6 days of treatment, so I'll have to phone in I guess... I just want to stay home, rest and enjoy my break especially as there's blizzards and whatnot forecast... we'll see I guess. I got mad at the stupid phone thing they gave me for my clinical trial and hit it and now have a very mildly injured hand. Because clearly it was harder than my hand, I should have attacked it with some sort of weaponry obviously. Temper, temper.

@TwigTheWonderKid My recent CTs have all been with contrast I drink plus injected contrast so normal in my experience. Usually the techs say I don't have to drink a lot as I'm underweight but last tech kept making me drink more and more, till I felt like Violet Beauregarde, was worried it'd all come out in the pouch but in fact just peed it out when home.

Yea Ox is a bitch and a half, back when I was on it, I cried when I could not peel veg as they were cold from the fridge and my hands were clawing up. I do sympathise. I had no-one to bring me warm Coke either! Drank lots of lovely warm tap water, heated briefly in microwave.

My head has been struggling a bit too. I hope the hospice can be of help. I have a palliative doc and a social worker and they are understanding, though it has to be said that the lovely ladies of this thread are even more understanding. But yes get any help with it you can. I have been self medicating with Downton Abbey but that's just run out!

Hope they have some more treatment that they can give you, fingers and toes crossed.

@WrenNatsworthy That's so horribly frustrating with the GP, I'm sorry. If they're getting your scans they should be prepared to discuss results, but also it would presumably be better if it were an oncologist not the GP. You mentioned in a previous post having another onc who understood that you wanted scans, "my main Oncologist is a bit weird about doing more scans, even though the other Oncologist up at Clatterbridge can see that knowing what's going on inside my body is good for my mental health" would that onc interpret them for you? Or failing that can you ask the hospice nurse if they provide access to palliative doctors at all, or ask the hospital if there is any way to get one through them? I know it's so hard to have to micromanage every bloody thing.

@Tilllly I forgot to purchase limes and it's stormy out so I'm stuck home, it will have to be still water and no mint sadly so it'll just be homemade still limeade with honey but even that sounds really nice. All summer a friend was getting me the best limes I've ever had, huge and juicy and wonderful, from a certain shop and I revelled in limes.

@LuciaPillson The lovely lovely man at Clatterbridge isn't my main Oncologist, however I wish he had been the one I was referred to in 2020. He is an actual OM specialist, there aren't many. If I asked QE oncologist to send him the scans, or asked him to request them, he would. I've got telephone appointments with both of them coming up.

I'm wanting to ask about a trial called Prame.

I had a telephone call today from Dermatology putting off my appointment to Saturday 20th, as the scan results won't be back, so I now know that the reason I had my head done during the CT scan was to check out those scalp lesions. I assumed that was the case but nobody actually told me! I'm like the Miss Marple of my own Cancer lately.

I'm in much better spirits, I picked up some new glasses today. Weird lump under my arm has gone down. Happy days!

@LuciaPillson I'm revelling in virtual limes with you. A whole pool full of them.

@TwigTheWonderKid have only ever had one type of contrast with a ct, the one that makes you feel like you've wet yourself. You must report back on this 2 contrasts phenomena.

I have been binge watching all of the Harlan Coben stuff on Netflix of late. Ooh and Slow Horses on Apple TV.

Ooh, I do love the smell of lime.
Key lime pie...

Look what you started 🤣