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

In fact @LuciaPillson I think you should order to your door a key lime pie. That's my prescription.

@WrenNatsworthy 'The Miss Marple of my own cancer,' I'm dying... at least.... well you know what I mean! The English language has become untenable 😂 As for Key Lime pie I think your prescription is the best one.

I phoned onc office since chest infection isn't better, they said go to GP!! I mean, it's really hard to get through on the phone, I did ring and the GP office was shut for something or other till 1pm (not the time zone of most on here). I haven't bothered ringing back yet as everybody and his hound will be ringing since they didn't get through in the morning. And am I expecting them to come up with an appt. in the next couple of days? And they won't have seen my chest x-ray while onc has. I am VERY PEEVED. I mean obviously the best way to rest and take it easy as a cancer patient is to make endless phone calls and wait on hold.... I am the Miss Moneypenny of my own cancer, perhaps?? 😁 📞

Miss Moneypenny is much sexier too, go for it.

I'm dying at you saying I'm dying.

We sound like the teenagers I am still just about managing to teach at my beloved youth theatre. They are all 'I'm obsessed' about anything they like at the moment, and 'I'm dying' if it's funny.

They make me roar!

A bit of joined up thinking would be lovely, wouldn't it?

I've been very naughty and not taken myself off for the repeat of all the blooming tests the GP ordered in December that they had already gone the day before when I went to A&E for my high blood pressure. How hard would it be to request the results from the hospital rather than sending me hither and thither?

Had a call today to book in scan. Could I go tomorrow? Well, no, not really, I had Oxaliplatin yesterday, I can't even go downstairs as it's too cold, I'm definitely not leaving the blooming house! Apparently oncologist says I have to have it within 4 days. Does he not know what cold-induced neuropathy is like?!

In better news, I've been watching lots of Miss Marple and am just enjoying a glass of sherry before my dinner (in bed). Happy days!

@TwigTheWonderKid I've had to go out in a Canadian winter on Oxaliplatin.... had to wrap up like the Mummy! Was so terrified of the possibility of respiratory distress with the throat or lung spasms though it never happened.

Thither is a sadly underused word. But I suspect saying it too often would result in that odd thickening of the tongue that occurs when you try to say 'thousandths'. Some things should never be uttered!

I must admit I used thither just for you @LuciaPillson. I knew you'd appreciate it.

@TwigTheWonderKid I do indeed apprethiate it. 😁

😹

@LuciaPillson
Didn't they give you steroids with the antibiotics?

No, just the antibiotics.

@TwigTheWonderKid I love that you've been watching actual Miss Marple.

I hope you're wrapped in the softest of blankets.

I've been given steroids and antibiotics with chest infections- and I've had 4 since October!- to help fight it off. Maybe you need that, cos you should be feeling a bit better by now

@Tilllly If you don't mind my asking, what kind of steroids were you given? I could ask the doctor about it.

I've checked my medical notes, says 30 milligrams prednisolone for 7 days
It does say on the dispensing info " for exacerbation of COPD" which rather alarmed me at first, because I didn't know I had that!!! 🤣
But I don't, it's just what is a standard message for this dispensing

Apparently they can give it for five days as well, but for a persistent chest infection, a seven day course, kicks it into touch better. Obviously I get a lot of chest infections and they clear better with steroids and antibiotics.

My CT scan was crap yet again - small progression in the liver again, off Cape, onto Paxlitacel. Port fitting in 2 weeks. Bloody hell, can I get some fucking respite from all this shit? I feel absolutely fine, so was expecting stable at least. But no. The consultant was honest and said she is concerned by the speed the fucker is moving but said that it’s good news I feel well as that will be most important in future treatments. Apparently there is a whole list of treatments that can be had. She mentioned Enhertu, too, if Paxlicatel is not working. I was hoping to eke out 5 years but who knows? I am not ready to leave my son an orphan yet.

Oh @balkanscot
Absolute shit 😡 I'm sorry

I very much get the impression from Oncology, that if you are coping with the treatment and you are not coming in with a load of side effects and feeling ill, they are happier to go more aggressive with the treatment

Oh @balkanscot , that's rubbish and definitely not what you would have wanted to hear although at least there are still alternative treatments available which may provide a little light in your tunnel of shit.

I've was supposed to have my big important CT scan on Sunday which then gets sent off to Basingstoke for them to decide my fate but they've just called to cancel that but hopefully I'll get another appointment for next week. Although worried that even if tumours have shrunk enough for them to now consider me for the cytoreductive surgery and HIPEC I've now developed these heart issues and wonder if that would prevent them from going ahead. It's at least 12 hours of surgery...and if I am turned down I think it's probably the end of the road as far as any treatment is concerned. And on top of that I had to go fir a bloody appointment today to discuss changing my kidney stent. I cried all my over the lovely nurse. Isn't funny how it's the littler things that set you off, or is that just me,?

It's all shit. I don't want to leave my boys either. Apart from their dad they have literally no other family and as my dad dropped down dead 2 years after my mum when I was still young I worry that could happen to them too and they'd be all alone too.

Sorry @balkanscot I was meant to be making you feel better and I've just rambled on and made it all about me.

@TwigTheWonderKid have they told you you wouldn’t be considered for surgery with heart issues? I hope they do decide to go ahead based on the CT scan. I had a 12-hour surgery when I went in for my double mastectomy (allegedly preventative but look where THAT got me) and DIEP reconstruction - so keeping my fingers crossed that you get the surgery despite the marathon 12 hours. 🤞

@Tilllly I have no idea how awful Paxclitacel is, I hate the idea of having a port inserted, I want to continue with my reformer Pilates (vain, I know). I was told it is not a given that I will lose my hair. Another vanity moment.

I just want some good news at some point, for a change. My oncologist wants to see me again on 1st March, way before the next CT scan is, to make sure I am OK which is nice of her. I trust her implicitly as she is a top notch honcho with regards to breast cancer. Just a pity mine is a tough bastard. For now. 👹

@balkanscot
I've not lost my hair yet - it's thinned but I don't need a wig
Stay hopeful

I try not to be judgemental, but I was most bemused my second round to see a man in his 60s, with the cold cap on

@TwigTheWonderKid
It's about us ALL. Ramble away if it helps

This is what I don't understand. If they turn you down cos of the heart issue, then there's nowhere to go. What is there to lose by operating?

@Tilllly I asked about steroids but it seems it's for people whose lungs are more congested or whatever than mine currently are. To open up the lungs, or something. Anyhow am off the antibiotics and on a new puffer so we shall see.

Puffer is a corticosteroid puffer tho, just a bit different from the one I've been using for asthma so I am getting inhaled steroids of a sort :)

I suppose it's a steroid of sorts - and at least you have an answer
Frustrating to have an infection that's not shifting tho

@Tilllly Yeah the GP thought maybe viral not bacterial as the antibiotics didn't do much

I never understand how they can't tell if it's viral or bacterial