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

All the pre trial tests are taken…now just the wait to see if I have passed. If okay then the first Enhertu will be Wednesday. I still have a baseline eyesight check scheduled for Tuesday, that is solely for monitoring and not a prerequisite.

Feeling a lot less stressed now as there is no more I can do to influence the outcome and the chest infection is well and truly clearing up.

Overall not very active though, but am up and about every day, if only to do the washing etc.

@Thinblueglass best of luck to you.

staggering into thread, distributing hugs, cups of tea and doughnuts, (or healthier snacks if you really insist) staggering out again 😁

@mowly77 how are you feeling? Is the palliative care nurse coming today?

Had my bloods done and brief oncologist chat ahead of tomorrow's Oxaliplatin infusion. They are going for 3 hours again this time and a 20% reduction in the dose to hopefully reduce the side effects.

I've been feeling so well this week ( my week off Cape) so not looking forward to getting back on the side effects roller coaster but it's got to be done.

Am also missing DS1 who has now been at uni for a week. I was fine when we dropped him off but the house is too quiet without him and I'm missing his huge hugs.

@mowly77 was the palliative care nurse any help?

@mowly77 Would the oncologist authorise a lower dose of Cape perhaps that you could more easily manage or is that even a possible thing with the tablets? I really hope the nurse can help with pain relief. Thinking about you.

@TwigTheWonderKid How have you managed with the oxaliplatin? I'm in a way thankful to be off it at the moment as the cold sensitivity made everything so very difficult. I was warned it can cause throat spasm and respiratory distress which I found really scary although the worst I experienced was pins and needles but I was careful and was always on a low dose... but found it so hard to prepare food, get drinks of water and so on and on when nothing can be cold. Also, going out in long cold winters. I've been binging on ice cream since they took me off it! Which isn't good for me but ah well.

@LuciaPillson I've had some horrible immediate side effects (double vision and foot spasms) but otherwise it's been ok-ish, so far. I have got gloves stuck to the front of the fridge to remind me to use them, I keep lots of cans of drink at room temperature and mix cold water with water from the kettle. I can usually eat ice cream by week 2. I suspect it will get harder now it's getting colder (I was surprised to get the pins and needles after touching the wooden bannisters the other day) but luckily I have lots of gloves and my best friend is knitting me some arm warmers.

Had a much better day today. Was sat next to someone I used to know when I was a school governor so we had a lovely chat, such a nice distraction.

I asked for a second dose of Lorazepam towards the end of the infusion and I think it helped. No double vision and no foot spasms although I was totally wiped out and walking like a drunken sailor.

Just woken up with a throat full of my dinner so have taken a double for of Lansoprazole and am now sitting up catching up on the Archers.

@mowly77 Well my exciting weekend plan is always to tidy and clean up my flat but even when I put loads of work into this it is never either tidy or clean. Rather dispiriting it is. Why is every dish I own dirty despite me swearing that I will never leave dishes for so long? Why.

Could you ring the oncologist's office and tell a nurse or someone how hard it is for you to take the Cape, and see if they have anything to recommend? I feel you shouldn't be struggling with it all alone, they should be monitoring how you're coping with it surely? Forgive me if this has been tried or won't work. I just hate to think of you wrestling with this with no medical support. And it's causing weight loss too, honestly someone should be paying attention.

@TwigTheWonderKid Glad you got through your infusion ok-ishly and can concentrate on the important things like the Archers!

Slogged through another week, hip doing better and I finally saw the Super Specialist second opinion who confirmed rads but not where I was expecting (but makes sense). Another box ticked, another week down. I even walked 5200 steps yesterday, got lost in Marylebone and achieved the stairs at Baker Street in ok fashion. A few hours in my work chair this afternoon though and Im eyeing the morphine bottle. If only I could sleep more than five hours a night I could deal with this better. Should have the final plan in two weeks and hopefully be radiated in three.

I called Kingston to change my NHS pulmonary consult two month follow up thinking it would be a few months to a new appt (no big deal) but next available appt was in May! They also messed up the CT scan and scheduled it for three weeks after the consult so both would have effectively been useless had I kept the dates. So I dunno, Marsden seem confident they can keep an eye on it through my normal scans but I kinda want to talk to a lung person about things like - the covid vaccine, whats the deal? and does this Eliquis make me fatigued? You got anything better? Hate taking all these drugs.

Goal for the weekend is to get out a bit in the sun and walk/pole to some brunch and be out where there's music and there's people (and they're young and alive... well, maybe not but hey, had to finish the lyric line even though I detest the Smiths!). And finally make this stuffed aubergine dish I found that looks good but we dont really eat those in this house so I've been putting it off.

I really hope you can find a solution with cape soon, @mowly77 - Ive seen some people titrate up on different drugs, I wish the oncologists would be more flexible!

@AGreatUsername how are you doing with everything?

@mowly77 so sorry you are feeling utterly rubbish. Which anti-sickness meds have you got?

Hi @HerbalRefreshmentt

I am meh. Just waiting. Forever waiting. I did have a call with my oncologist yesterday who assured me she is looking at trials not because there are no conventional options, but because targeted therapy may be the best option for my annoyingly rare cancer. She did laughingly say well it’s very unusual for ovarian cancers to progress via lymph only. I told her I was sick and bloody tired of being the odd one out. Very rare cancer with amazingly low odds anyway given my history, “never seen before” behaviour of CA125 and now “very unusual” progression to neck nodes. Although she did say the PET wasn’t 100% it was cancer, as the uptake was mild/moderate. That could be because mine is grade1 so not as hungry as higher grades. Or it could even be caused by something non cancer but she is highly sceptical of that idea.

I am going in Tuesday to have bloods taken for TARGET who will look for any genetic flaws in the cancer DNA and then scour all available U.K. trials. She has also requested a whole raft of mutation testing on my original tumours but that will take months. I have my private consultation at the Marsden on the 10th, I’m worried about the financial implications. I must self fund as I live in Wales. I just hope she recommends something and I can get that locally!

Googled "you don't look sick" memes, a lot aren't very good but got a little smile out of "and you don't look stupid but looks can be deceiving" and "are you accusing me of faking my disability or are you asking what concealer I use?"

Not apropos of anything but I feel I could design a whole course about what not to do to people who depend on mobility devices. Yeesh.

@HerbalRefreshmentt What is the stuffed aubergine dish?

How are we all doing?

I've had a funny old week. I'm on day 9 of my 2 weeks of Cape. Apart from some hip pain and insomnia I'm feeling physically better that I have since July but mentally I'm all over the place.

Hi everyone,
It's been a while. Last week I had an appointment with a nurse at my local hospice and felt reassured that they have my back. They offer lots of stuff some now and some further down the line.
The next day I had a telephone appointment with my oncologist and I got more clarification. Basically my lung tumours aren't suitable for ablation because there are multiple. He agreed to make a referral to an Ocular Melanoma specialist in Liverpool who may have access to new trials. Not heard anything yet.
So at the moment no scans, no treatment and I have to go on how I feel.
I've just been sleeping a lot. No idea what's causing that. Hoping the mets are growing slowly. Hoping the liver mets are still shrinking. Hoping no mets have popped up anywhere else.

Thinking of you all.
Am also an Archers fan

ROB!!!!!!!

Thanks for the meme @mowly77 it's brilliant l.
The amount of times I get told how well I look when I feel like shit. I'm not thin and I've never lost any hair because chemotherapy doesn't work on Ocular Melanoma.

Raining again tonight. We had a weirdly great summer with rain mostly overnight, and sunny days so lots of green grass but bright weather, low humidity most of the time so my breathing was ok and I could get out. Very unusual all of this! So I've been able to do quite a bit of walking with my walker. Now we've been having very warm weather in early October. It can't hold for long but I'm enjoying it while it lasts. I got a new duvet and duvet cover today thanks to a family member who kindly drove me to the shop so I'm all set for when it turns cooler.

@TwigTheWonderKid Glad you are feeling well physically. What if anything do you find helps with the emotional/mental stuff? For me it's I guess getting out when possible, shopping, and keeping busy so my brain doesn't have time to think, but of course nothing works all the time.

@WrenNatsworthy Oh it's good that the hospice has a lot to offer, I hope that feels at least as though there's some comfort/support there. I have a palliative doc and that word always gives me shivers yet I'm glad she's there, a very sweet Irish woman.

@mowly77 Hugs. I hope the breathlessness starts to improve as the cold goes away. I have asthma and I know how shit it is when you can't breathe properly. Take it very easy with what you do if you can. Do you have any mobility device like a cane or wheeled walker you can use in the house? Difficult with stairs though I realise. Sorry about the emotional stuff... it's hard... at least you know you're still kicking when you can say (or shout?) NO to things.

I always cut my own hair and it's due for a cut now... I have devised a cunning yet ridiculous way of doing it where I cover myself in a bin liner with holes for head and arms and sit on my bedroom floor in front of the mirrored closet door and slice away with my best scissors! That way I won't feel faint whilst standing, I may look insane but there's no-one around to laugh.... female pattern baldness plus chemo have made me pretty thin on top but I still have hair, horrid though it tends to look. But I don't go to many places, wear a hat for shopping and otherwise am at the cancer hospital, one place where surely it's acceptable to have shit hair!