Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Yup! Had I known, I would have made it very clear that I'm not sitting around waiting on them & that not every randomly assigned appointment suits 🙄 Fucking arseholes.

The nurse was very apologetic & did go and look at the available dates herself...consultant just sat there like "not my problem".

Well no, but I need enough advance warning to stop the Abemaciclib.

Fucking fucking shitty bollocks. I am really pissed!

The restorative 🍷 did not help!

@lucysmam
Have another until it does

Ah @lucysmam that is so aggravating. No doubt you had wound yourself up to be brave over the tooth extraction too. Not all of us are as brave as @Tilllly

I’m a bit up and down with pain. After a good night I’ve been sore this afternoon but I’ve saved up the painkillers so I can take lots before bed. It’s a bit of a rollercoaster. I’d quite like to fast forward a week or two.

I'm not being funny @TopOfTheCliff but you've just had surgery, @lucysmam was just at the dentist. I had bloods taken

You really need to put these things into perspective. I mean, I was in a minor amnt of discomfort for a second or two.

Have a heart

Top tip...
when you can't sleep, don't look at your blood results then research the red-out-of-range ones you don't understand

I now have 84 medical conditions
Maybe 85

@Tilllly Is that 85 in addition to the ones you already know about? If any of us can handle this number, it is you though. You are the bravest of us all.
I do this too. I go to bed, lay down, and then look up the latest research on radiotherapy for skull base cancers, and then I go down a rabbit hole of brain necrosis, and temporal lobe damage, and from there to "how long does it take to give power of attorney to a spouse" and "is euthanasia legal in the UK". I call it the bedtime spiral, and I don't recommend it.

I know better @KentishMama
I don't know what I was thinking

I think it's cos I'm more uncomfortable and awaiting results from CT scan
Am thinking it's spread into R lung and liver. Have no basis for this beyond every test or process, has the worst outcome every time!

My son is a doctor and goes mad with me for looking at my bloods

Neighbour gave me a lift into town so I'm having a coffee in spoons, waiting for hairdressers
At last, cancelled 3 appts - and she's opening early to squish me in cos it was at 1 but seeing brain man at 1230 now

@Tilllly I think we all do this to some extent. I was freaking out badly over the weekend and before the appointment yesterday, expecting to be told that there's lots of tumour remaining in my skull, and that they have to go back in, or something like that... I also have a history of getting bad news at almost every appointment! But it was all really good news. So maybe our luck is turning? I'm sending good vibes.
Wishing you a very relaxing hair appointment.

Yep, guilty of this too. I've had a fun morning of contacting all my pension providers and asking them to send details of how I can access my money early because I'M DYING, GODDAMMIT, I DON'T KNOW WHEN BUT IT COULD BE SOON, BUT ACTUALLY IT MIGHT BE A WHILE YET, NO-ONE SEEMS TO KNOW, AND I DON'T WANT TO SPEND THE REST OF MY DAYS WORKING I'D QUITE LIKE TO GO ON A NICE HOLIDAY FOR THE FIRST TIME IN 20 YEARS.

Also doing benefits calculations to see how best to fudge the system as I'm never going to see my old age pension and I resent all those National Insurance contributions now.

At the same time I'm hoping the drugs are a miracle cure and I get another twenty years whilst also worrying that I'll have spent all my money and fifteen of those years will be spent in poverty.

Aaarrgh!

Oh @SewingBees , have a calming hug! And then tell me about the holiday you'll go on. That's a nice positive topic. We all need all the holidays!

We're going to Majorca before Easter, for a week. Hope it'll be warm and sunny. Bit risky in March!

And I really want to go to South Tyrol/ Dolomites in the summer. Mainly for the views. And some nice walks. Not hikes. WALKS. Easy ones.

@KentishMama Sorry, that sounded like a right rant didn't it. I'm actually quite calm, just finding myself spiralling with too many options to consider.

Your holiday plans are similar to mine. We're planning Scotland at Easter (Edinburgh to see oldest friend, Applecross, the far north, and the Cairngorms) which should be lovely and midge free and over a fortnight we should get some good weather. Majorca would be nice, I've never stayed in the north so that would be good and my daughter would love it. Perhaps back to the French Alps, though like you I wouldn't be able to hike. Perhaps ski resorts are the answer so we can take chair lifts everywhere.

I'd really like to go back to Sydney. I lived there for 6 years and haven't been since 2005 and another very close friend lives there. I have Aus citizenship, as does my daughter, and she'd love to go. I just suffer dreadful guilt for flying any distance at all and the cost is extortionate but if I do cash in my pensions I can imagine a massive Fuck It moment hitting me.

Gamma knife is on 8th

He wanted to do it this Thursday and I said no, I really couldn't. I explained that I have booked us a few days away, and we had had to cancel everything in the last four months, and we really needed a break.

He agreed it, but I don't think he was pleased
He said they only have three slots every Thursday and they won't be able to fill the third slot

I feel a bit weepy about it

@SewingBees
Have you asked MacMillan to help with the finances, they're pretty good

@KentishMama
Who is your holiday insurance with?

I went to the Tirol and saw the passion play too in 2022. Best holiday of my life

@Tilllly I have travel insurance through work that's on a "medical history disregard" basis as it's a very large employer, so I am covered by that. Not sure who the provider is, I'd need to look it up!

I adore mountain holidays generally. My happy place.

Gamma knife on 8th! That's quick, and I understand that you will go away a bit first. You need to catch your breath. How does it work, is the first appointment more like a scan or mask fitting, or do they do the treatment right away?

@Tilllly Well done for standing your ground on the timing. What is it that's making your feel weepy? The procedure or being pushed into it sooner than you're ready for?

I'm getting help from the benefits advisor at Maggie's. I met him yesterday and he was brilliant.

I just feel he was pissed off

I just had a call to tell me one of our colleagues died unexpectedly this afternoon

I spoke with him and his wife on Saturday because he's just been diagnosed with lung and bone cancer, he had scans on Thursday that said there were also mets in his brain and liver. But they were all really really tiny

They had chemo and radio scheduled for him, I don't understand why he's died

@Tilllly I'm so sorry to read that sending love x

@Tilllly So sorry, that must have come as a shock. A similar thing happened to my colleague's mum - she died within days of a breast cancer diagnosis for no apparent reason. So cruel for those left behind who've had no time to prepare.

Oh @Tilllly I am so sorry for your loss. It is all a bit close for comfort. Sending hugs.

So sorry to see your news @Tilllly . What a shock that must have been. Sending much love x

I spoke with the cardiac nurse earlier - sounded like she was in the middle of cooking tea, like me.

They don't do heart MRI at my local hospital so needs to be the other one - why couldn't they be straight & say that to start with? They did get my message...why did no-one at least acknowledge it or ring back to say it needs to be other hosp? They'll re-book & let you know when - so that'll be a date and time that suits and makes it easy to get to & not a chore that means I'll be out until bed time ish after a 7:30ish start at work...?

Easter hols was my request - we'll see what they come back with 🙄

No call back from dental hospital after yesterday's rediculous, could have been a 5 min phone call, appt. Shall ring them myself tomorrow.