Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

I'm terrified

carol19
Posted by

Hi buttercup01 yes I will add to my profile when I figure out how I'm not very thecno I'm afraid I also thought this was the kidney cancer group ?

Joncol
Posted by

I believe the surgeon did it visually but also removed some nodes which were tested. Straight after the operation I was told that it hadn’t spread as it was contained in the kidney. I have just had a six month follow up ct scan which came back all clear. I was given a Leibovitz score of 2 which means low chance of spread. Ask for yours when you have your follow up

Jane
buttercup01
Posted by

Yes, it is but you've been able to post in it without being a member of the group. Strange old site in some ways!

Re adding to your profile, click on your user name, on any post you've done, that'll then go to your profile, click on " edit profile" n that'll allow you to add to it.

Come back to me if that doesn't work as I'm telling u from memory lol

Here's a link instead -

https://community.macmillan.org.uk/help_section/w/using-the-community/413/how-do-i-update-my-profile

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
carol19
Posted by

Hi Jane

thank you i will ask. Im glad you've had the all clear it's what we all hope for 

I'll have to chase up my follow up 

carol19
Posted by

Hi buttercup01 

thank you i will give it a go x

buttercup01
Posted by

Glad it worked!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
carol19
Posted by

Sorry joncol

i made a mistake and called you Jane my apologies x

Jo300
Posted by

Hi 

You're pretty much where I was five years ago - totally out the blue. I didn't get a pre op idea of staging and mine was further on - ended up being pt3a - so a little spread. Stage 2 is a great result if it's confirmed post op. My friend who was actually also pt3a has been clear for 7 years now, so at stage 2 you have lots of reasons to feel positive if you can. My surgeon described a nephrectomy as being a potential cure, I'd hold on to that given what you've already been told.

You'll be monitored after surgery with follow up bloods and scans and that's very reassuring.

I know what you mean about the op being too soon. I got offered a cancellation and turned it down as I wasn't ready. It was only a week before my due date, but I felt I needed to be more prepared with practical things - I work for myself and needed a few jobs finishing so I didn't have to worry about them etc. The day before my op I was jet washing the trampoline lol.

I think once you've had the op you'll start to feel more in control again. Everything seems to be taken out of your hands at this stage.

Wishing you lots of luck

Jo
x
buttercup01
Posted by

God luck for your op. You say before the BH weekend, so must be pretty soon. You'll be on the ward watching the rain I expect, being BH  weekend lol.

Why is it we feel we've got to be cheerful for others' sake when we feel Ike  crxxp? Daft ain't it?!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Good luck for your op,Youll be on the ward  watching the rain I expect, being BH  weekend lol.

Why is it we feel we've got to be cheerful for others' sake when we feel Iike  crxxp? Daft ain't it?!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Boogie Bay Cale
Posted by

Hi Buttercup, thank you. Got my dates wrong, I thought the bank holiday was next weekend not this, but I'm still in on 28th, whenever the ruddy thing is! So thank you for the thoughts, it really means a lot. Actually, because of the people here and their words of wisdom and support, I've done quite well the last couple of days.  I've been cheerful, and actually meant it, most of the time! I've tried out some of Ethelmay's anxiety busting ideas, and they have really helped. But I've cracked a bit today.  I have a teenage daughter, and am a single mum, and she has been brilliant; but as it's getting closer she's wobbling a little. It also doesn't help when people trot out their near death hospital experiences! As I had from a well meaning friend yesterday. But you're right, if we feel crap, we should be able to say it, and those who love us accept it. But, weirdly, you/we end up being the strong ones, in public anyway. It's almost an apology, as if we have to say sorry for bringing in the dark to the light of people's lives. I was reading one of those weekend magazines you get with the paper, and everything in it seemed written to be pastel, inoffensive, unthreatening, even the article about still born infants. But if we want to cry, then we should cry, and shout, and scream. I know it doesn't take it away, but for me it feels a bit more real than polite acceptance. Or maybe that's just how it goes for today. A huge hug to you. xxxx 

BoogieBC
Boogie Bay Cale
Posted by

Thank you Jo300. I am trying to focus on the positive now, because I know there are people who are at later stages than me, and I'm lucky they found it now. The waiting is the scary part, because you cling to all the positive sounding stuff they tell you, but there's always  that niggle at the back of your brain, whilst you wait. It is the feeling of not being in control.  And I am a bit of a control freak, a fixer, but I can't easily fix this, and it does make me panic. Am trying to put into practice all the advice I'm getting, it does help. I hope you're ok? X

BoogieBC
buttercup01
Posted by

Hi Boogie Bay Cale,

I'm a lot of a control freak !!

Waiting is the pits. I was told in June n had to wait for my op till mid-Sept, 14 years ago next month.

I also told ppl  at work that I didn't want to get any tales of '" bad" experiences -'rather like  folk insisting  on regaling u with  child birth experiences. ( My home birth went  well thanks lol)

Sorry to hear your daughter's having a bit of a wobble.

Perhaps she's picking up on your  feelings?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Ethelmay
Posted by

Hi Boogie BC, I'm not a control freak but do like to do things my way lol. Like you, I'm a fixer, a 'go to ' friend...fix my family if Im needed and always there for friends . Make things ok, someone to go to..to sort stuff. " Mum will know what to do" "Ask mum she will sort it". Like you I can't fix this and feel totally out of my depth mainly through anxiety which is the pits. The waiting is just dreadful but we all muddle through somehow. Onwards and slightly sideways I guess lol 

Love and hugs x

Love and hugs

Ethelmay x
Spin
Posted by

I had my surgery 10 days ago now and like you it all happened very fast . I still cannot believe it has actually  happened. 

However it is done and I have started my recovery at home which is all going well. I know what you mean about feeling like you have to be braver than everyone else around you but I have now decided to 'do me'.I have told my friends and family that they need to respect this too.

Whilst it hasn't changed how I feel ,it has changed how I show it. In some strange way,deciding to 'do me' has actually made me stronger. My advice to you is ... 'to do you' what ever that looks like . Stay strong