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

[LemonDrizzle10]

Old thread nearly full!

@tothelefttotheleft Cancer 1 was breast. Cancer 2 in the skull base, i.e. in the bone of my skull. Ultra, ultra rare - a chondrosarcoma. Grows about 1-2 mm a year and eats through the bone. Luckily mine was still confined to the bone and had not broken through into the brain or brain stem yet.
Maybe I need to think through the numbering since the chondrosarcoma had probably been there for 10-15 years or so, just undetected.

"are two small 4 mm enhancing foci left superior frontal gyrus. There are also two indeterminate areas in the temperol lobe"

@Tilllly The superior frontal gyrus is at the top of your head. If you've ever had long hair with a middle parting, then imagine the area to the front and side of that parting.
The temporal lobes are the area from your temple to just behind the ear. They are responsible for a lot of memory type functions. (The radiotherapy I might have to had impacts them, so that's an area I researched a bit.)

How are you holding up?

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@KentishMama
I'm in a very bad mood still and taking it out on everybody!

@KentishMama so would affect memory first maybe?
Perhaps I can forget about the bastard cancer?

Oncology on Thursday and shld know more as the brain team meet Wednesday
Then CT on 26th, see how the rest of me is going

Does anyone get that weird breathing thing were you getting on with your day and all of a sundden your body takes a deep breath randomly? Im getting it more often. My abdo has swollen again but i did eat half a loaf of bread yesterday and craved salt.

work is ok. Although yesterday I couldnt get into a teams meeting and I need to fix that issue, is it because I have a new phone? Im no good with stuff like that. The link took me through but wouldnt let me sign in or do anything else.

ive asked for partial retirement but now Im worrying about the year Ive just had off sick. I know it is based on the last three years but I hope its not going to bring the numbers down.

@EachandEveryone I get that breathing thing. It's like an involuntary sigh. No idea what it is. I had a pleural effusion and wondered if it was something to do with that but my October scan showed the PE resolved but I was and still am getting the weird breath thing.

Yes then I wondered if it was post covid it used to be mainly on a night but it’s any time now!

Are you holding your breath a lot @EachandEveryone - I find I do - it's a stress / anxiety / trauma thing I think, maybe your body is reminding you to breathe!

I get that @EachandEveryone
I don't think it's anything to worry about

Smear test done

I've been "number 1 in the queue" with the neuroradiology appointments line for 30 minutes, and I'm beginning to think they lie when they say I'm number 1. Just a hunch.

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@Tilllly The line died. I called again and I'm now number 3 in the queue. Maybe it's a game. 3, 2, 1, then they hang up on you.

I'm supposed to have an MRI on Monday morning, before meeting my surgeon and oncologist in the afternoon. They just sent me an appointment for Thursday instead. And you can't cancel or change it online, you have to call this specific number...

Oh FFS

I'm fortunate to have the email for the lung nurses and they're really good at sorting crap like this

The neuro CNS is utterly horrible - she creates all this chaos. I'm only on the phone ("You're currently number 3 in the queue") because she messed this up, I flagged the scheduling complexity to her ten days ago! I really can't deal with this shit.

It is so very frustrating. I have a mere 6 medical appointments this week, all with different departments/hospitals. Next Monday I have a bone scan for which I need to be around the hospital for 4 hours minimum. The date/time clashed with an oncology appointment to get my first set of meds, luckily I was able to change oncology to the morning but it took some doing. I feel like I need a PA, thank goodness I'm able to be off work at the moment and give my diary the attention it needs!

In other news my team at work is being moved to another department for no good reason. I attended a briefing yesterday by the new department head. It was utter nonsense and my team's morale is at rock bottom. I don't have the energy to fight it at the moment and I'm having to let it slide which is annoying me beyond reason. I feel utterly useless and starting to also feel worthless, which I know I'm not but it's how I feel. Wondering if I'll ever feel physically and emotionally up to work again. The utterly shit weather isn't helping. I'm sure if I could sit outside in some sunshine I'd feel a lot better.

Going to seated yoga tomorrow. No idea how much of it I'll be able to do! But the teacher is fabulous so with a bit of luck it will lift my mood.

@SewingBees its frustrating to have to accept you can’t help your team due to health issues. I left my colleagues in the lurch in the first lockdown and never went back. They are still floundering without a leader. I don’t feel guilty because it was outside my control but it makes me sad. My brain doesn’t work well enough for me to go back now, and I have other priorities.
Seated yoga sounds great. I might try that once I can drive again.

@SewingBees
Completely understand the work issues, I do
But you can't do a thing about it and you need to conserve your energy

Park it - let it unfold and see where you are if and when you go b

I know it's hard tho

@KentishMama
Any luck with the twatwaffles?

@Tilllly After two hours, I got through and they've given me an appointment on Monday. However, the CNS said that the scan needs to be finished no later than 11:30 so that they can review it in their MDT meeting at 12:00.
The only appointment I could get is at 12:00. So... They'll have to review it in real time when I meet them at 3 pm, without their precious MDT. Let's hope they are pragmatic about that.

I won't have time to spend two hours on the phone during the day once I'm back at work, so something's really got to give on this chaos.

That is bloody ridiculous

@Tilllly I am going for ill health retirement- we can survive on my pension, adp and partners carers allowance - just! Daisy is simply gorgeous 😍

@Whatevershallidowithmylife Do you mind if I ask how old you are? I'm wondering whether I will have earned enough pension to take ill health retirement.

@SewingBees not at all. I am 51 and my pension will work out roughly £1100 a month plus £380 pip. Im LGPS pension with employer paying in 22%. There will also be hulk payment of about £20k. Thanks to an inheritance our house is paid for and we don't have a lot of outgoings really. Main expense is food tbh. Happy to cut my losses and not have day to day job stress - would rather be skint!

@Whatevershallidowithmylife Thank you. I'm the same age as you and have a range of pensions due to moving jobs quite a lot. I'm planning to move this year and could potentially be mortgage free (if my husband and I decide to stay living together, which depends on how my cancer responds to treatment and therefore my prognosis), in which case we may be able to live on pension plus his earnings. I need to do some research. However, I get a year of decent salary while off sick (6 months full, 6 months half) so I won't be looking to do this until much later this year.