Kidney cancer

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

I'm terrified

Boogie Bay Cale
Posted by

In the space of just over a month I have been diagnosed from nowhere with a stage 2 tumour left kidney which they will remove the kidney just before the bank holiday weekend.  I am both terrified and wondering if it's all real.  I've read some of the other posts, and I too am being incredibly cheerful for the sake of others, because I don't know what else to do.  But when it's just me I want to scream.  That's probably normal I guess. I've got a lot from reading other peoples experience; I just wanted to say this out loud, because everyone tells me I'm being really brave, but I'm not.  I'm just pretending it's not happening really.  I'm lying to myself because I think I will shatter if I don't.  I just wanted to say that really. 

BoogieBC
Ethelmay
Posted by

Hi Boogie Bay Cale. Im pretty new to the group too and Im sure someone will be along soon to help allay your fears a little. I can totally understand how you are feeling at the moment, I am just the same although things seem to be taking so much time to get sorted here. I have to lose my kidney too and have been referred to another hospital for an appointment with a consultant there. Thats not till the 2nd Sept so have been sitting it out for what will have been 7 weeks of anxiousness. It is an unreal feeling and like you I am putting on a brave face for family and friends when inside I want to scream. Ive been trying my best to distract myself xx Everyone here has been so friendly and helpful and are good listeners. Youve found the right place for help even though non of us really want to be here . Love and hugs xx

Ethelmay
Boogie Bay Cale
Posted by

Thank you Ethelmay. I'm so sorry it's taking too much time for you, but weirdly I'd like just a little more time to get used to the idea before they whip me in and whip it out.  And that in itself sounds daft, because I don't want this thing inside of me (which I have named Melvyn, because I once knew a Melvyn who was really nice, so I thought if I gave it a name it wouldn't be so scary). My consultant seems a nice reasonable sort, so I don't think they are acting in haste. It's just the past few years for me and my family haven't exactly been a picnic, and now this... Daylight hours are relatively ok. Like you I distract myself, and for the most part that works. It's those hours when you have to face 'you' that are hard, and that's when I start to think and the terror takes over. Sleep is a really difficult thing to do, as my brain just doesn't stop. But you're right, though no one wants to be here, there are a lot of inspirational people to listen to, and it helps to talk here, because I can't bother my family with how I feel, how it feels, not fair on them. Thank you for listening, much love to you x   

BoogieBC
sueCC
Posted by

Hi Boogie BC, it’s my husband who has KC not me but I just wanted to say I felt just the same as you’re  feeling while we were waiting just over 3 months for his operation, once the kidney was out it seemed a great weight was lifted. His was also stage 2 and doing very well, doesn’t need any treatment and CT scan in a years time. Get it out and you’re on the road to recovery. Good luck xx

Sue Xx
buttercup01
Posted by

Hi Boogie BC, I had my right kidney out 14 years ago next month. Had to wait from being told end  June to mid-Sept. (Don't ask!) Like suecc says, once it's out it "seemed like a great weight was lifted"

Have a look at the thread Ethelmay started called Anxiety buster for some ideas as to distracting yourself

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

Liking the name change Buttercup x

Sue Xx
Ethelmay
Posted by

Hi Boogie BC..love that you've called it Melvyn and it's a friendly name lol x. Mine's called John Henry. My Dad used to call every guy John Henry when refering to them whether he knew their correct name or not they were always John Henry ( the plumber, electrician, barber, my brother and even my son when he was little ) so it's sort of endearing lol. Yes, the whirlwind you're in...well, I was in that whirlwind at the beginning and part of me wishes it could've continued while I was in a sort of shock unreality to the point of having the op so it would all be over by now. The other part of me, at first, sort of welcomed the 'reprieve ' if you could call it that. It gave me chance to calm my nerves a bit at the beginning but they are starting to build up again now. But ...( oooo my old school English teacher would go mad at starting a sentence with 'But' or 'And' lol ) so in defiance I shall start it with ...And but I have felt a bit less apprehensive today for some reason, had a good day. Love and hugs xx

Ethelmay
carol19
Posted by

Hi I'm new here it's been inspiring reading the posts just a quick question i had my right kidney removed on the 4th of July nearly 7 weeks ago now I have not yet had a date to go for a check up and have not had pathology results x

Joncol
Posted by

Hi I would chase the appointment, perhaps phone your nurse specialist that you should have been allocated. I saw my surgeon for histology results two weeks after my operation. Seven weeks is far too long to wait 

Jane
carol19
Posted by

Hi booked 

I've just had my right kidney removed 7 weeks ago now I had all the fears you have now I'm back to normal now doing all the activities i did before I was relieved to have it out. As I'm 66 now my kidney function was only 60% after my op they said my left kidney had taken a dip in function but will recover i have yet to have my post op check up and pathology on the tumour x

carol19
Posted by

Hi Jane thank you for your reply reply i expected to get a letter but none ha s come i will ring them on Monday morning were your histology results the same as they told you pre op ?

Joncol
Posted by

Hi Boogie Bay cale

like you my diagnosis was unexpected! I was being scanned for something else. I have to admit I was a wreck, not sleeping, eating or functioning properly, just going through the motions. Once I had an operation date I worked on being as fit and healthy as I could possibly be. I’m 65 but walked miles to prepare myself. This also helped me mentally as I felt more in control. I could do something! The operation is tough, but doable and six months on I’m fit and well and apart from a few scars that periodically remind me of what I went through I can put it all in the past. 

Jane
Joncol
Posted by

Hi Caza 123 the histology results were better than I had been told pre op. The tumour was much smaller and totally confined to the kidney whereas I had been told that it was in the fatty outer part as well. Do a t1b instead of a t3a

Jane
carol19
Posted by

Hi Jane 

that must have been a tremendous relief for you. After the operation i was told there was no evidence of spread but does it go to a lab to determine that ?

buttercup01
Posted by

Hi Caza123, you might want to add a bit to your profile, so ppl know where you're at, once this thread's been n gone. Also maybe join the kidney cancer group?

It's more likely they'll monitor you by CT scans to check there's no evidence of it spreading, probably 6 to 12 monthly to start off with. 

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