CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

purple the lack of sleep isn't ideal for your health either. Definitely tell your oncologist how badly they are affecting you. Mine suggested I could reduce mine and I hadn't even complained about the side effects. Is it your oncologist you're seeing tomorrow or GP? Hopefully they can sort something out. What time of day are you taking the steroids? Sorry that's a lot of questions

It's my GP I'm seeing tomorrow, I've seen my oncologist once just before all my treatment started and haven't seen her since I'm taking 2 steroids at 8am and then another 2 at dinner time. I think I'll ask about reducing them as long as it's not going to have any side effects. I'd rather be tired and well. Although right now I'm chop my own arm off for some sleep

Hm that is strange. Hopefully you'll get to see your oncologist again soon! When you say dinner time do you mean the middle of the day or the evening? (Sorry not trying to be rude just different people have dinner at different times of day!) try and take it as early as possible. I take mine at about 7am then 12 noon and I don't sleep too badly. You could try even earlier than that. You can just have a biscuit or something if it doesn't fit with mealtimes.

Sorry dinnertime as in about 12ish. I'm from the north east if you couldn't tell

Phew! I was worried you meant in the evening, which would've definitely kept you awake

So... do you call them rolls, buns, baps, cobs, barms...?

Thanks whatwouldleslieknopedo I think it was not possible to tell if it was cancer until they got it out. Still, positive about treatment, got the pills now so am starting tomorrow.

Hello everyone. Sorry for the radio silence. Christmas prep and tiny people have been getting in the way of my mning of late! Hope everyone is as well as they can be.

I think I'm over the worst now Leslie, thank you. Though have developed a bit of nausea over the last few days. Hoping it's nothing.

Onc meeting went well, thank you TQ and Leslie. Bloods are just inside the CA125 norm (not my personal base number but not bad nonetheless) and he's agreed I can finish the course of chemo unless something extra weird happens between now and NY. Then I get a scan and then we make a new plan. I hope you're both ok and fending off germs in a kick-ass style! Are your kids due back from university soon TQ? I don't know whether the steroids are just making you feel wakeful in general purple but it was the twitchy legs they gave me that kept me awake. I used a kind of frozen sock that seemed to calm them down enough for me to nod off - if that helps! Littlegreycat glad you are over the worst - hope the nausea doesn't stick around. Strength and cake to you all x

I’m feeling a bit more with it today (a large gin in the evening may have aided sleep!)

More bloods taken, but still awaiting results (guessing good news - they call really quickly if not, the ‘normal’ email is the one that takes a while)

Can I ask another question for those who have been living with their diagnoses for over a year?

To recap, I was diagnosed in October and treatment is going according to plan. I have told my nearest and dearest.

I was going to sit down and write Christmas cards the afternoon. Usually I would scribble a few lines about Stuff That Has Been Going On That Year. Is it ever OK to break the news in an Xmas message? Part of me thinks not - but then again, there’s never a good time for it.

Sorry that’s all a bit vague - it’s a reflection of my woolly thinking! Did anyone else have this come up in the run-up to Christmas? Or offer any words (preferably wise, but frivolous would do) about the general art of telling other people.

Also, are there advantages in just not telling? Do people get awfully miffed if they find out later? Or does it just become an awful elephant in the room?

iVampire I was diagnosed at the end of a January so had a lot longer for the 'news' to travel on the grapevine. I didn't mention it in the Xmas cards as I didn't feel like it - but I think if you feel like you want to, you shouldn't worry about it not being a good time - it's your call. I told the people who were important directly, figured most other people would hear about it from someone somewhere or would get in touch and we'd have the chat at some point.I let my friends/family know it was ok for them to tell other people if appropriate and let them do the hard work! One or two probably slipped through the net but you can't win 'em all! I have felt more like talking about it as time has gone on (I'm 3 years in) but I reckon that you should feel entitled to tell or not tell whenever and in whichever way you see fit. xx

iVampire i was diagnosed in may 2016 while pregnant so after a few weeks where I'd told those closest to me (or rather, they'd found out either through family or through me not being at work suddenly as I was diagnosed because of sudden seizures and unable to work for the first 5 weeks) I put a general post on Facebook... maybe it's an age thing but it seemed the most sensible way of letting everyone know, particularly as I'd only announced my pregnancy the 2 hours before my first seizure... .

Thanks whatwould have changed name as been giving lots of quite identifying info recently. Get initial results tomorrow. Obviously unlikely to be definitive either way but feeling weirdly relieved and less anxious. As others have said, it’s the waiting that gets you! Still not expecting good news though as they rang to book a tel consult with gp which I declined as had already booked appointment (just guessing they wait for you to contact them if there’s nothing to worry about).

Sorry haven’t posted much in response to others but have been reading and following. Don’t feel I can presume to know what everyone is going through but sending to you all.

It’s not just the courage, it’s the humour and lack of drama in your posts that’s just so humbling.

ILoveDolly good luck today. I hope the tablets have minimal side effects

LittleGreyCat are the little ones excited about Christmas? Well, maybe not the baby! I bet they're an excellent distraction I hope the nausea wears off soon

nicky yay for being able to continue the chemo! it sound like you have a good relationship with your oncologist

iVampire fingers crossed for your bloods. As they're not close friends/family I think it would be fine to put it in Christmas cards. I think it's better to tell people as otherwise it does sort of become an elephant in the room! No wisdom from me really. It's a tricky thing to tell people. I try and tell people by email/text/Facebook as then they can react however they want and there's not the awkward panic of them wondering what to say or saying something really annoying. I try and keep it lighthearted because sympathy makes me very uncomfortable. But now it's incurable I always make sure I say that straight away and reiterate it because lots of people seem not to take that in and then I get lots of "when you're better..." or "once your treatment is finished..." which is awkward.

Flappyears when is your appointment? I hope it's better news than you are expecting! Don't worry about responding to others. Your mind is probably working overtime just dealing with your own worries at the moment. We have all been there and understand

I hope everyone has a good day today

Thanks Leslie - my oncologist is very nice. He's very calm and dignified and just sticks to the facts he thinks I can handle. My surgeon is very funny, blunt and hands-on - the complete opposite, so I'm lucky to have good choices depending on what I want to talk about and how!

I completely get the 'incurable' thing; no matter how much people know that, the denial is massive. The one that gets me most is 'you're so strong and positive, it will turn out ok for you' - if cancer was cured by being jolly, we'd all be marketing that by now!! xx

Morning all. Love to all having treatment and horrible side effects. Christmas is rapidly approaching and I have only bought one present so far. However this is completely normal for me so can’t blame it on anything else. Recovering well from surgery and follow up appointment is next Thursday . On a brighter note it’s our works Christmas do tonight so I get a night in a lovely hotel and to dress up as a gatsby girl . Thank god for amazon😜 as I would not be up to shopping . Hope everyone is looking forward to Christmas with their loved ones.

Buns Leslie

Have they given you antisickness tablets greycat? I'm on 2 different lots and touch wood have been fine so far, there's lots of different ones to try if yours aren't working.

Oh I don't like the sound of frozen socks Nicky, although with the hot flushes I've been having from the neck up I could probably do with a frozen scarf and hat.

Vampire I've just wrote a couple of cards out and I've included my diagnoses briefly then wrote about usual stuff which I normally do at Xmas, I only really speak to some family through Xmas cards so that's why I've done it.

Ooh that's sounds fab oakthorn! Hope you enjoy it

Hello everyone and apologies for my sporadic posting. I am not really spending much time on mn at the moment.

The appt with the surgeon went really well. He explained everything very clearly.. He wants the remove the lung as soon as poss but it is suspected that I have Hyperparathyroidism (this is what was causing the raised calcium in my bloods). The surgeon says that it is important I see an endocrinologist and have a needle biopsy before my lung op. He says the calcium makes a general anaesthetic more dangerous. Surgeon was ringing endocrine on Tues but I haven't heard anything.

I have had the pre op assessment and I have another CT scan with contrast on Mon.

I hope everyone else is doing as ok as can be expected and that Vampire and purple have managed to get to some sleep.

Oakthorn - you are doing really well if you're up to going to a party tonight! :) My appointment with the surgeon is on Thursday as well so fingers crossed that we have some good news.

Mamia I have visions of bumping into you at the hospital

Hi all. I'm just here for a handhold if that's Ok?
I had a recall from a routine mammogram and was told after a second mammogram and ultrasound that I have calcification in my left breast. I had a biopsy and now have to wait a week for the results.
9-10 year's ago I had 2 benign lumps removed and still have quite a few harmless cysts but this seems different.
I've only just lost my dad to cancer and I'm worried sick!

Have a hand, holding out to you Jools The not-knowing is a dreadful time.

Thanks to all for advice. It’s been really helpful. I’ve pruned my Christmas card list over the years, so the people on it are those who matter but who I’m not regularly in touch with. So I think I should tell them (even if it serves only to avoid elephants) and as there will never be s good time it may as well be now, I’ve written my first ever Round Robin to put in the card (to save me writing it out every time) and done it on the shit sandwich approach - the good news from the year, then the shitty diagnosis, then everything I’m being told about how much more treatable it is these days. I’m hoping a tone of ruthless optimism will be coming across between the lines!

(Though I suspect ‘ruthless optimism’ might just be a synonym for ‘wilful deniaj’)

Handhold for you Jools

purpleunicorns I've not had any so at least I have somewhere to go to if it gets worse. Fingers crossed it passes soon.

Leslie they're very excited, but apparently also terrified if today's visit to a garden centre Santa is anything to go by...

Good luck everyone awaiting appointments

LittleGreyCat oh dear! I hope the sickness has eased today

iVampire that sounds like an excellent approach. I think sometimes cross the line from ruthless optimism to aggressive optimism

Welcome MyGuideJools but I hope you'll only need to stay with us for a short time here's my hand to hold too. I'm really sorry about your dad.

wombat I'm glad your appointment went well. It doesn't rain but it pours! I hope you can see the endocrinologist and get your op ASAP. It's probably worth phoning them on Monday to chase up if you haven't heard anything, though I know it's a hassle! Or you could mention it to the pre op people and they might chase for you. Good luck for your scan and pre op assessment

purple I'm jealous. We just call them rolls here. I've always wanted to live somewhere that has a specific word! Hot flushes don't sound much fun, but I'm glad the antisickness tablets seem to be helping

nicky they sound great. My oncologist is very matter of fact. His interpersonal skills are a bit lacking, though they've improved hugely since we first met! My amazing surgeon retired and then the one I saw instead has discharged me. And yes to annoying comments. I think they just can't cope with the reality, but we have to live with actually happening to us

oakthorn I hope you had a fantastic evening

I'll be thinking of you and Mamia on Thursday. You both need to wear a red rose or something in case you're at the same hospital

OK I think that's about as many Christmas smileys as I can cram into one post... I hope everyone has a great weekend!

I'm having a similar dilemma ivampire