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

965 replies

LemonDrizzle10 · 24/12/2023 11:59

Old thread nearly full!

OP posts:
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42
KentishMama · 28/01/2024 21:43

@TwigTheWonderKid It's only IV contrast! Woo-hoo, l will book myself a massage for tomorrow instead, and then go shoe shopping. Tell me where to send the pizza 🍕!

lucysmam · 28/01/2024 21:55

<sad face> no takers for the dentist <sigh>

Tilllly · 28/01/2024 22:05

lucysmam · 28/01/2024 21:09

@KentishMama I get the feeling no-one fancies our appointments 🤔 no idea why!

I went to put back my belly button jewellery tonight...misplaced all my jewellery 🤷‍♀️ Must be somewhere very safe, it's not in with any other jewellery which is odd, I have loads of costume stuff.

At least she's offering pizza and ice cream
You offered nada

Tilllly · 28/01/2024 22:07

TwigTheWonderKid · 28/01/2024 21:38

I'll do your MRI scan if it's just IV contrast @KentishMama If it's the drink, you are on your own; I'm not taking that diarrhea again for anyone.

I've often thought that we should all swap chasing up appointments and results for each other. I'm sure doing someone else's would be less arduous.

That'd be hilarious

We'd not be worried about offending if it was for someone else

From "I'm sorry to ring you about this again but..." to "FFS, how many calls does it take?"

TwigTheWonderKid · 28/01/2024 22:10

KentishMama · 28/01/2024 21:43

@TwigTheWonderKid It's only IV contrast! Woo-hoo, l will book myself a massage for tomorrow instead, and then go shoe shopping. Tell me where to send the pizza 🍕!

No probs @KentishMama I've got a GP appointment at 9.40am and a PICC line flush at 4,pm so please can I have my pizza about 1ish so I don't have to share it with DH? Thin crust, spicy beef and gherkins please. Delivery to Wimbledon, or I can grab it after the scan.

@lucysmam as long as it's not a scale and polish, am happy to take the dental appointment too, as long as it doesn't interfere with my pizza.

TwigTheWonderKid · 28/01/2024 22:11

Tilllly · 28/01/2024 22:07

That'd be hilarious

We'd not be worried about offending if it was for someone else

From "I'm sorry to ring you about this again but..." to "FFS, how many calls does it take?"

Exactly, we could say all the things we want to say but don't normally dare!

lucysmam · 28/01/2024 22:15

That's where I went wrong @Tilllly !

@TwigTheWonderKid wisdom tooth out - you don't mind do you? I'll make you soup for after!

Tilllly · 28/01/2024 22:17

@TwigTheWonderKid @lucysmam
You're both being pathetic

I've got my bloods tomorrow... far more onerous. And I'll probably be in there 5, maybe even 10 minutes.

Can we just focus on my suffering

TwigTheWonderKid · 28/01/2024 22:40

Oh god so sorry @Tilllly . How utterly insensitive of us...

@lucysmam I can do it as long as it's after the pizza is delivered. I'm not missing out on that. I once had a wisdom tooth out which involved the dentist kneeling on my lap to pull it out. It was so bizarre it took my mind off the extraction.

SewingBees · 29/01/2024 09:24

We're all at appointments today. I'm just at the Hexham oncology unit to get my Ribociclib, then I'm off to the Freeman hospital for a bone scan. Have to hang around for 3 hours after they give me the contrast dye so I'm going to see if I can get some benefits advice at the Maggie's centre. Tomorrow I'm back at Hexham for a CT scan. Then nothing for the rest of the week. I may do some sewing for the first time in 3 months.

SewingBees · 29/01/2024 09:25

Oh yes, forgot I've got a dental check up on Thursday. Really hoping I don't need any work done - can't afford it!

TwigTheWonderKid · 29/01/2024 11:00

@SewingBees are you claiming PIP?

TopOfTheCliff · 29/01/2024 11:13

It’s a busy week in Cancerland.
I have been instructed to get a nurse appointment for Feb 7th to remove my dressing. No stitches to come out. I said I would do it myself and the nurse had a fit. “ They need sterile gloves you know”. I shall make the call pretending to be my sister I think, just for fun.

Would they even know if I disobeyed and did it myself?
I slept really well last night, on my side, and didn’t need any extra painkillers. The bruising is coming out but there isnt any swelling which is a bonus.
I look different in the mirror, less strained. I wonder if I had been in chronic pain and suppressed the knowledge as it feels wonderful now the nagging ache in my bum and back has gone. I am very good at denial!
Here’s hoping you all have a good day without too much frustration.

SewingBees · 29/01/2024 11:50

TwigTheWonderKid · 29/01/2024 11:00

@SewingBees are you claiming PIP?

I'm not claiming anything, no idea if I'm entitled to anything! I guess I'll find out this afternoon.

nappybrained · 29/01/2024 13:01

@SewingBees ring and get the claim form and have a go. Not income related, has come in very handy for me. Paying for cabs etc

nappybrained · 29/01/2024 13:06

@TopOfTheCliff chronic pain is very wearing... And I bet your mantra has been "I'm fine" delighted to hear all going to well.
I'm back in that bloody tunnel again, with a bit of radioactivity
I've just told them cannot put my arms above my head 😂 .. And it is what it is!

ajandjjmum · 29/01/2024 13:07

Glad the op is over for you Top, and that you're already feeling the benefits.

SewingBees · 29/01/2024 13:09

@nappybrained That's exactly what the benefits advisor at Maggie's has said. He thinks I should get something because I can't stand long enough to prepare meals. He also suggested getting an SR1 (?) form from my oncologist which apparently says you might die within a year. He said it makes PIP payments automatic and will fast track any future benefits claims. Apparently you just get another form if you survive the year.

TwigTheWonderKid · 29/01/2024 13:27

@SewingBees mine was really straightforward: a lovely social with sorted it for me when I had a hospital admission in August. My oncologist did the SR1 form which seems to speed things up and override much of the crap other claimants have to go through.
You do have to change your thinking a bit and remember how poorly you are and the restrictions this puts upon you, especially when talking about mobility, rather than the brave face we normally adopt. Also it means you can get a Blue Badge ( though I suspect I may actually be dead by the time I get mine) and in certain areas entitled you to free bus travel and discounts on taxis.

KentishMama · 29/01/2024 18:15

@TopOfTheCliff Your update was wonderful to read, so glad that you are already feeling and seeing the benefits from the surgery! Really fantastic!

@TwigTheWonderKid How was the pizza? Thank you for your assistance today. Your skull looked really good on the images and my surgeon was very happy with you.
Okay this is confusing now. I'll give a proper update!

MRI looked good. Still some disagreement between radiology and my surgeon. The radiologists say they're seeing a hyper intense area that suggests there's still tumour. However, when you cross reference that to my recent CT, you can see that there's no bone remaining in that specific area at all (all removed!), so there can't be a bone tumour there. Apparently it's a false flare from the fat that they packed the empty space with. But surgeon will rescan in April just to prove that he's right.

Advice on radiotherapy: Wait and see. Probably not needed if the surgeon is right and got all of the tumour!

My next MRI will be done privately with better scheduling, and I've also got a private referral to an eye specialist because hot shot surgeon seems to have damaged the nerve that makes the tear gland produce tears. So I've got a dry eye. Hope that's fixable!

@Tilllly how was the horrible five minute appointment? I was worried about you all day!

Tilllly · 29/01/2024 18:17

nappybrained · 29/01/2024 13:01

@SewingBees ring and get the claim form and have a go. Not income related, has come in very handy for me. Paying for cabs etc

MacMillan will do it for you

Tilllly · 29/01/2024 18:19

It was horrific @KentishMama but I was brave and bore the pain of the needle heroically

But on the results my neutrophils are even lower now. Only just over 1

lucysmam · 29/01/2024 18:21

Yes @SewingBees get Macmillan to do it for you! I never set eyes on my PIP form - just a phone call asking if they could have bank info & send it on my behalf.

Dentist was a shitshow. Have to go back end of Feb for them to actually take the tooth. Denosumab delayed again 🙄 & cover needed at work again. They really really need to tell folks proper info. I stopped the Abemaciclib after being told it was coming out today & will now miss 3 weeks of it instead of the expected 2.

Receptionist sort of said "oh" and tried to keep my letter with the wrong info on it - they just don't get it 🙄🙄🙄🙄

Feeling very eye rolley & pissed off right now!

nappybrained · 29/01/2024 18:24

Good plan

Tilllly · 29/01/2024 18:28

Thing is @lucysmam , they still have this mentality that patients have knack all to do
It's infuriating

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