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

@LuciaPillson They surely ought to be able to do a swab or sputum sample to establish viral or bacterial and if bacterial they can get you the right antibiotics??

Re the surgery my cancer is so advanced/aggressive etc that they have to be sure it's likely to make a significant difference because it's such a massive surgery (it's not called The Mother of All Surgeries for nothing).

@Tilllly @TwigTheWonderKid What you say makes sense but I don't really know... all I know is I was so dehydrated and exhausted by the end of the GP visit, x-ray, talking to GP again, getting script, taking script to chemist, finding out it needed a code, taking back to GP, getting code, going back to chemist.... that I wouldn't have been able to tell a virus from a bacterium if it bit me in the arse! 🤪🙃😁

Twig, when I first got my dx, the surgeon was talking about some possible future treatment and now that I think about it, it might have been the surgery/chemo that you are describing.... however no-one's mentioned anything like it in a long time.

@LuciaPillson if it bit you in the arse, it was probably a dog 😁

A code?! Wtf? Why is it never simple?!

How are we all doing?

I've had a super-fun day. It was my big important scan this afternoon, followed by my cardiology appointment. Let's just say the hour wait for cardiology was made so much more interesting by the explosive diarrhea I was suffering from literally every 3 minutes as a result of drinking the litre of disgusting aniseed flavoured contrast. Which they only told me would be a side effect as I lay down for the scan. I hate to moan when they are trying to prolong my life but I really felt like going back to the CT department to give them some "feedback"!

@TwigTheWonderKid that is gross and most unfair. When do you get the results?

I have an update. The latest episode of the 'Who is taking responsibility for me?' shitshow.

I received a letter today. It was sent to my GP, cc'd to me, cc'd to dermatology but not my Oncologist. It was my scan results from the CT scan I had most recently - the one that I had to figure out had been booked by my GP. Anyway, I read it, and had to Google some terms, but in a nutshell, I now have metastases in the parietal lobe of my brain, my kidneys, and various bits of my gut. No idea how big these lesions are, but I guess an MRI would be needed and I'm not sure they will bother as I'm off treatment.

I rang DH who came home from work. In the meantime I rang the secretary of the person the letter had come from - left a message because she doesn't work Weenesdays. I emailed a photo of the letter to Birmingham Oncologist , because as fortune would have it, we are due a telephone consultation tomorrow. Bless him he emailed back saying did I want him to call back this afternoon, but as I hadn't expected him to read it I didn't see it until it was too late. He was kind and it was a comfort to me.
I also rang the GP and explained everything to the receptionist who was horrified at what I told her. She gave me her name, said she works every day, and in future I should ask for her in person.
So good mixed with the bad.

I have cried so very much as my DS turns 16 very soon, and I feel like I am letting him down so badly. And I want to see him grow up. He is such a marvellous person and I couldn't be prouder of him. I want to grow old with DH too.

Despite all this I am still walking around like someone perfectly healthy, and I had tickets booked to go and see Poor Things at the cinema with a friend. So we had a drink first, I cried all over her, then went to see the film, which is a masterpiece. A good distraction.
Now I'm in bed trying to magic away my brain tumour, but DH is snoring so that's interfering. Apparently cats purring is healing. One is asleep on my feet so that will have to do.

Onwards and fucking upwards eh?

Oh @WrenNatsworthy no
That is just the shittiest of updates
I'm sad and angry for you

I wish I had some clever words to make it feel better

Oh Christ on a bike @WrenNatsworthy that is beyond awful and utterly inhuman.

I think regardless of how we are feeling physically, we all know how this is going to end for us. We trust our doctors to know what they are doing with our treatment and care but what I think makes the real difference is the way we are treated as people. Apart from yesterday's minor debacle, so far I have generally come across people who are professional yet also capable of huge amounts of compassion and understanding and that makes a real difference.

What happened to you yesterday was utterly unforgivable and I am so sorry. I hope your meeting with your oncologist is helpful. You've got a lot to process.

@WrenNatsworthy Biggest of big virtual hugs. I'm glad Onc and the receptionist were sympathetic. I wish you didn't have to go through all this. Wishing you much healing purring.

@TwigTheWonderKid Well, now I'm feeling slightly smug as my explosive diarrhea goes into a pouch and is contained... for a while... can't tell you the number of times I wake up with an ominously full pouch and very gingerly get up and, cradling it in one hand as if it were a bag of rare gems (in fact ostomy supplies cost so much, it kind of is), shuffle to the toilet saying quiet prayers... Yes you should definitely give them some poo back feedback.

@WrenNatsworthy
I’m sorry - that it truly awful. My youngest is 18 and I can absolutely empathise.
My Ca125 has risen already, soon after stopping chemo for ovarian cancer.
I’m hoping it’s a blip - but if not my prognosis will be rubbish.
I also look and feel healthy, and I’m fed up being told that.
I really hope you get good care and that helps somehow. X

@WrenNatsworthy Other people just don’t understand how much crap we have to go through, and that’s not just medical, but the type of crap you have had to deal with, chasing things up, etc. And I totally sympathise as well as my DS is almost 12. It floors me every time I think about leaving him, especially as his dad died a year ago.

I got my date for port fitting, next Thursday, followed by my first Pacitaxel session the following day. I am dreading it as much as I can’t wait to start. Do you lose hair while on it? All the literature says yes but my oncologist said not necessarily. But I am trying to source a wig just in case. All the wigs are rubbish hair-style wise - I have a pixie cut but all “pixie cut” wigs online seem to be truly awful - lots of “feathering” and “choppiness” and fringe all over the place. Mine is fairly slicked back and very short. I have a leftover wig from 3 years ago which is abominable, but it was given to me on NHS and during Covid, so couldn’t go to a salon for proper consultation.

I also got a date to hear the results of the next CT scan, 26th April. If cancer doesn’t finish me off, being hysterical about finding out will. I need a stable scan after the last 2 crappy ones.

@LuciaPillson the poo tales!

Thanks everyone.

I saw the dermatologist today (they moved my appointment forward). I didn't sleep last night and walked in crying. When they found out I'd been sent that letter they were appalled. Anyway brain metastases are confirmed and I'm no longer allowed to drive. This is a huge blow. I love driving. I have a campervan.

I had the subcutaneous lesions removed from my scalp there and then. They were so lovely, made me cry with how kind they were. They were really careful to include DH as well. The cns is also a macmillan nurse. She was fabulous and gave me her card. She's going to call me next week.

Still waiting for Main Onc to call. Lovely dermatologist from today knows main Onc.

Secretary who sent me my scan results in error called me apologising profusely..She made no excuses, said she'd been doing the job for years and never made a mistake like that. She said if it had been her family member she'd be furious (as my DH is/was!). I accepted her apology.

We told DS when we got back from hospital. That was tough. Sometimes I feel like none of it is real. Today is definitely one of those 'How can this be happening?' days.

@WrenNatsworthy Oh that is pants about the driving. I'm so sorry.

I get test results sent me by email, and I never, ever look at them. I open them and put them in a folder without reading them, feeling nervous till they're safely away in the folder. Really good that she apologised to you.

I'm glad they've treated your scalp and the CNS sounds nice. I didn't know what a CNS is and I googled, apparently we have them here as well.

Those 'how can this be happening' moments are nasty. It's all very hard to get one's head around.

A family member used to say 'Onwards and upwards' and although I liked it, of course my brain always grumblingly thought 'But what if it's backwards and downwards!'

Thanks @LuciaPillson. Today it's not upwards or downwards it's horizontal!

fuck fuck FUCK
Can I join you @WrenNatsworthy

Oncologist rang with MRI results

The dot is not an artefact of the scan, it's a tumour, it's grown since the last scan and it's brought a friend with it
I now have metastatic brain cancers

They're referring me to the brain team for gamma knife radiation
Which I will google

And I'm not allowed to drive which has absolutely devastated me

Oh my word @Tilllly I'm holding on to you for dear life.

Main Oncologist called, and said that as I'm feeling ok otherwise, cyber knife may also be a possibility for me. He's fast tracking me for an MRI over the next 5 days to see if I'm suitable.

I am so so so sorry. Having our wheels taken away is brutal.

I am prescribing unlimited key lime pie for the entire thread. It's the only way to get through.

Bastard cancer

Tho is no match for key lime pie

Have you SEEN the gamma knife? Makes MRI look a doddle

Is gamma knife and Cyber knife the same thing? Am googling. Cyber knife is some outer space James Bond looking gear.

Dunno

Gamma looks freaky

@Tilllly what utter shit! I am hoping that either gamma and/or cyber knife will somehow kick both “friends” out of where they are certainly not welcome. This is my biggest fear, mets in the brain and not being able to drive. It would curtail all the trips that I have planned with DS to maximise our time together.

I once made key lime pie (Delia recipe), it was rather delicious.

@balkanscot
Get as many of those trips in as fast as

Both these tumours are tiny and having no impact on me at all. And almost certainly will be 100% cured

Yet DVLA are unlikely to ever give me my licence back

@Tilllly Read your update. That's shit. I'm sorry. I hope somebody can zap them. But it is awful about the driving. Many hugs. Hope you can use this as leverage somehow to obtain puppy/reindeer.

I remember when DH got his driving licence revoked due to glioblastoma. It had made him even more irritable and irrational. He resisted a blue badge for quite some time, too. Then would shout at me for parking too far away for him to walk. I couldn’t win. Fucking brain tumours!