CancerCompass message board discussion started by wrachelle on 4/29/2008 http://www.cancercompass.com/message-board/message/all,23549,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm 17 years old and I found out a month ago that I had Stage 2 kidney cancer. I can't really talk to my friends about it because its so hard for them. And I was looking for someone else who went through it and understands what I'm going through. Just to make friends basically. Email me if anyone wants to talk. --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- wrachelle Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 wrachelle wrote:I'm 17 years old and I found out a month ago that I had Stage 2 kidney cancer. I can't really talk to my friends about it because its so hard for them. And I was looking for someone else who went through it and understands what I'm going through. Just to make friends basically. Email me if anyone wants to talk. w.rachelle@yahoo.comMy heart goes out to you - so young and without the support system of friends around you to help you deal with this.  Parents and family are one thing, friends another thing entirely for someone your age.  I know, I have a 14 year old daughter; friends can be everything.I'm new to the board - my mother-in-law has kidney cancer that has matastasized to the lungs and she is getting ready to start on Sutent.  I am amazed at the support the people on this board give to each other, both patients and caregivers.  I, too, came to the board looking for some emotional support as well as info - there's nothing like talking with someone who's been there, done that, bought the t-shirt.  (Sorry, just had to try to make you smile a little) I'm fotunate to have plenty of caring friends and family around who would do anything needed to help out or just give a shoulder to cry on but sometimes it helps to have the person who is listening REALLY know what you are talking about, REALLY know what you are feeling and going through.  Sometimes, it's just a REALLY good thing to be able to pour out what you are feeling, to start to put your chaotic thoughts into some kind of order as you type them out.  It can be a really good stress reliever because sometimes its hard to say those things in person to a person.And information - oh my gosh, the information these people have talked through: chemo drugs, side effects, alternative therapy, etc.  It is nothing short of amazing.  I've had a real eye opening experience reading through the posts - I've started taking notes when ever I see a hint for how to deal with some of the side effects, making notes of things to ask her oncologist, noting the chemo drugs people mention that they have been on or getting ready to be on so I can google it.  Sometimes it's overwhelming but I am so glad I found this board.Know that you are in my prayers.  Please, let me know how you are doing.  I feel sure in saying this: there are lots of people who will read your post and care and want to know, as well.Beverly beverlyw Tue, 29 Apr 2008 00:00:00 GMT My friends are really allI got right now. My family wants nothing to do with it, basically disowned me when they found out. Said I was joking about it. So the way I see it I have my friends. It's just they treat me like im going to die like today. Like i cant do anything, when a lot of the time i feel ok enough to go out and do stuff.  So when i fight with my friends, i have no one. this board is offering me like a sense of escape ya know? lol to talk to people who deal with this too.Thanks for your respone =] wrachelle Tue, 29 Apr 2008 00:00:00 GMT Im so sorry to hear your going through this terrible ordeal feeling alone.Know that you are not alone .I will be hear for you.I was stage three breast cancer went through chemo and radiation.I m doing ok right know. You must be very scared and confused.    there are many support groups out there. Ask you dr to recommend one for you,also maybe he can speak with your family.You need them now. You are young and strong and you can beat this. as for your friends let them know that you will not let cancer define who you are. Remind them how things were before your cancer and let them know you are the same person you've always been but that life has thrown you a curve ball .I wish you the best sweetheart. laborerlady Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 wrachelle wrote:My friends are really allI got right now. My family wants nothing to do with it, basically disowned me when they found out. Said I was joking about it. So the way I see it I have my friends. It's just they treat me like im going to die like today. Like i cant do anything, when a lot of the time i feel ok enough to go out and do stuff.  So when i fight with my friends, i have no one. this board is offering me like a sense of escape ya know? lol to talk to people who deal with this too.Thanks for your respone =]I'm not sure where to start......  Didn't your parents go to any doctor's visits with you?  Didn't they see scan/test results?  What do they propose you do?  What does your doctor propose as the course of action at this time?  Are you looking at surgery or chemo or radiation as an option?  As a parent, I am outraged that a parent would treat a child like this.   I know, there are plenty of folks who cannot wait until the kid turns 18 so they don't have to support them any more.  I'm fortunate to come from a family that doesn't have that kind of mentality.  We have always been there for each other and always will be.  I may not like my sisters or brother all the time, but when the chips are down, I'll be there and they know it.  My family is the strongest emotional support in my life even when it involves my husband's family.  My mother treats my mother-in-law like family.  So this where I come from, my way of thinking.  So if I get on my soapbox, you'll understand why....With that said, if you are not getting the emotional support from your family, you need to get it from somewhere else.  Yes, this board will be a good source but, please, do not let it be your only source.  Talk with your doctor to see if there is a support group in your town.  Talk with a counselor at school.  Talk to the preacher/pastor/priest at your church/synogue.  Get on line and find a local support group.  People need personal contact in times of crisis, and believe me, this is a crisis in your life.  You have never before faced the decisions that you will need to make.  Not to make you feel like a child, but you are so young; you may not have the emotional maturity to make the treatment decisions that will need to be made.  Depending upon your treatment, there may be times when you don't want to move out of your bed and you just need someone to hold you hand - and that requires a living, breathing person in the room with you.  Maybe you need a shoulder to cry on - and that shoulder needs to be attached to a human being who cares about you.Talk with your closest friends.  Explain your need for emotional support.  Tell them exactly what you told me:  you aren't dying today.  You aren't this fragile person that needs to be treated with kid gloves.  You are the same person they have always known, just now you have a disease that needs to be treated.  Explain to them you need them to help you LIVE with cancer, not die from cancer.  Are they going to get it?  Not always.  But if even one gets its, that's a big step for you and them.It's not going to be easy.  It's very hard to bare your emotional soul and ask for help.  We always fear rejection.  But you never know who will step up and help out, if that person only knew what you needed.  And how can they know if you don't tell them?I can't say don't fight with your friends - that's hard.  There are not 2 people on Earth that will always agree on everything all the time.  And I can only imagine the heartache you have between your diagnosis and the emotional abandonment of your family.  That's got to be the makings for a lot of anger.  Channel that anger at the disease, fight this cancer with that anger, let it be the fire that drives you to find out all you can on how you can beat this.  And share that fire with your friends; they may surprise you.  And you may surprise yourself.If it's OK with you, I'd like to know your first name so I can add you to the prayer chain at my church.  I will be praying that someone will be there for you.Please let me know how you are.Beverly .    beverlyw Tue, 29 Apr 2008 00:00:00 GMT Join the Kidney-Onc email list (see http://cancerguide.org/kofaq/  ) and tell your story.  Although most kidney cancer patients are older, not all are, and KIDNEY-ONC is the place you'll get the most support. Trishpm Thu, 01 May 2008 00:00:00 GMT Planet Cancer (see http://www.planetcancer.org/html/index.php  ) ia a support froup for young adults with cancer. Trishpm Thu, 01 May 2008 00:00:00 GMT Another support site:  http://www.imtooyoungforthis.org/ Trishpm Thu, 01 May 2008 00:00:00 GMT My name is Rishelle. But everyone calles me Shell. My parents know whats going on, they just don't want to be apart of it. My boyfriends family pays for everything. I'm in chemo right now, and I am okay. For 2 days in a row I've actually felt really good. I've become a lot closer with one of my friends. He treats me completely normal , but he knows when something is wrong. It's nice having him. there is also another girl at my school, and she has cervical cancer, so shes been a help. But its just a day to day thing ya know? I did join a support group, and I've been a lot more positive about beating this. I mean I am young, and strong and I know I can do it. Its just hard sometimes. I have my chosen few friends that I know I can count on to be there, because I HAVE had those days where I don't want to get out of bed, and they come see me after school and eat dinner with me. So I do have people. And I'm in the youth group at church. But only certain people know.Thanks to everyone who responded though =] It means a lot. wrachelle Thu, 01 May 2008 00:00:00 GMT  On 5/1/2008 wrachelle wrote:My name is Rishelle. But everyone calles me Shell. My parents know whats going on, they just don't want to be apart of it. My boyfriends family pays for everything. I'm in chemo right now, and I am okay. For 2 days in a row I've actually felt really good. I've become a lot closer with one of my friends. He treats me completely normal , but he knows when something is wrong. It's nice having him. there is also another girl at my school, and she has cervical cancer, so shes been a help. But its just a day to day thing ya know? I did join a support group, and I've been a lot more positive about beating this. I mean I am young, and strong and I know I can do it. Its just hard sometimes. I have my chosen few friends that I know I can count on to be there, because I HAVE had those days where I don't want to get out of bed, and they come see me after school and eat dinner with me. So I do have people. And I'm in the youth group at church. But only certain people know.Thanks to everyone who responded though =] It means a lot. Hey, Shell.  It's nice to meet you.  I've been worried about you since your last post; I've been watching for your next post.  TrishPM gave some great online resources for you to check into and it sounds like you might actually have some great people around you.  I am glad to know you belong to a church and their youth group; your pastor or youth leader can be a great source of support.  I am pleased, as well, to learn you do have some close, trusted friends for sopport. Being a caregiver for someone with cancer certainly doesn't put me in your shoes, so I can't voice an opinion on whether its's better for you to only have certain people know or if it's more important to have everyone know (you know, that old adage about strength in numbers....).  Only you know what is best for you.  I will say this: build your support network so that it works for you.  The support group you joined will have other resources for you, as well.  It actually sounds like you have the foundation for building a good support system, even if you don't completely know it yet.  Sometimes we feel so overwhelmed, that we get lost and we miss or don't appreciate the things or people right in front of us.I am so glad to hear you are in treatment.  I wasn't sure after your first post.  How long and what medication?  Your boyfriend's family is helping you through?  They must be some pretty amazing people.  Sometimes our true families aren't the ones we are born into.......And you sound so much more positive today  :-) It makes me smile to read what you wrote: you are young and strong and can beat this!  I can hear the fire behind the words you typed!  Keep that fire and spirit and let it help you through if ever you start feeling down.  I will keep you in my prayers, Shell, and add you to the prayer chain at church.  Keep me posted on your progress, please.Beverly beverlyw Thu, 01 May 2008 00:00:00 GMT Actually its my ex boyfriends family, which makes it even MORE amazing lol that they would be there for me. But they are much welloff on money then I am,so its good having them. And yes I actually am a LOT more positive. I dont know why. I've felt really good for a few days. Not sick or anything and I've been able to go through a whole day of school and play baseball, so its been nice.And everyone who needs to know knows. Since my parents have been ridiculous about the whole thing I found a friend in a teacher at my school. He is really understanding and listens toeverything and gives me advice. And he never says anything unless need be. I never thought teachers really cared about students, but he's really been getting me through a lot without my family. Him, and my friends are my life right now.lol But i am doing better and I'll definetly keep u posted on how I am. Thanks for adding me to the prayer chain =] it means a lot wrachelle Fri, 02 May 2008 00:00:00 GMT Hi there. So you have the big C in the Kidney.. Well so did I... A year ago.. and I am doing FINE. My name is Joe, I am in Ireland, I am 42 years of age.. Fit as a fiddle and last June ( 07 ) I passed blood and within hours was in the emergency ward in horrible pain. For a week, I was treated for kidney stones but a scan showed something different. A CT scan showed an 8.5mm tumor on my left kidney and within a week of that, I had an operation to remove it - the kidney that is. I was in shock. I remember saying to my wife, when will the shaking stop! It was a rough time. I was so removed from what was going on, I was more worried about the scare from the operation than the cancer. Anyhow, on the Friday morning I had the operation. On that evening I was told that everything was good, and they had the tumor intact. I was sore as hell on the Saturday and Sunday but was in good form.. I asked a male nurse to lift me and put me on my feet on the Saturday.. ( Best to just relax completely - don't try to help him ) When I was on my feet I was determined to get the caterah out because I could walk to the toilet. They took it out on the Sunday. It doesn't hurt in the slightest. On the Sunday, I was walking the lenght of the corridor and eating full meals. I was still on the pain killers but never really took the morphine - didn't like the effects of it. I was left with a scare, 27 staple stitches following my rib cage from about half way across the middle of my front to around the side. Nearly a year on, the scare looks great, pink but nothing mad looking like it did after the operation. I am a 4th dan black belt and and back teaching once a week and was back at work within weeks of the operation. I was told something very useful for me to understand what and how the kidney cancer worked.. The kidney is like a car tyre with an inner tube. The cancer grows like a bubble on the tube and once the tyre stays intact, the prospects are very good. Its when the tyre burst that other organs can get infected and more treatment is needed.. I have NEVER received kemo I have NEVER lost my hair ( except from age ). Not sure if you are a guy or gal but THINK POSITIVE, you can beat this,, you WILL Survive, This is NOT a car crash! You are HERE Now, Life Gets easier, you will get to a stage when you wont think about your cancer every moment of every day.. Life is too short to be worried about when you wont be here. As I said, I am 42 now. I dont plan on going anywhere until I am 94. Have a nice life kid.. Chin up! and wear nice cloths,, dont think you are sick.. you have a sickness,,, it doesn't have you. Best of luck my little friend.. !! JOE Jojo1968 Tue, 06 May 2008 00:00:00 GMT lol thanks joe. that made me smile and feel a LOT better. =]and im a girl by the way lol. but thank you. =] wrachelle Tue, 06 May 2008 00:00:00 GMT  On 5/6/2008 Jojo1968 wrote:Hi there. So you have the big C in the Kidney.. Well so did I... A year ago.. and I am doing FINE. My name is Joe, I am in Ireland, I am 42 years of age.. Fit as a fiddle and last June ( 07 ) I passed blood and within hours was in the emergency ward in horrible pain. For a week, I was treated for kidney stones but a scan showed something different. A CT scan showed an 8.5mm tumor on my left kidney and within a week of that, I had an operation to remove it - the kidney that is. I was in shock. I remember saying to my wife, when will the shaking stop! It was a rough time. I was so removed from what was going on, I was more worried about the scare from the operation than the cancer. Anyhow, on the Friday morning I had the operation. On that evening I was told that everything was good, and they had the tumor intact. I was sore as hell on the Saturday and Sunday but was in good form.. I asked a male nurse to lift me and put me on my feet on the Saturday.. ( Best to just relax completely - don't try to help him ) When I was on my feet I was determined to get the caterah out because I could walk to the toilet. They took it out on the Sunday. It doesn't hurt in the slightest. On the Sunday, I was walking the lenght of the corridor and eating full meals. I was still on the pain killers but never really took the morphine - didn't like the effects of it. I was left with a scare, 27 staple stitches following my rib cage from about half way across the middle of my front to around the side. Nearly a year on, the scare looks great, pink but nothing mad looking like it did after the operation. I am a 4th dan black belt and and back teaching once a week and was back at work within weeks of the operation. I was told something very useful for me to understand what and how the kidney cancer worked.. The kidney is like a car tyre with an inner tube. The cancer grows like a bubble on the tube and once the tyre stays intact, the prospects are very good. Its when the tyre burst that other organs can get infected and more treatment is needed.. I have NEVER received kemo I have NEVER lost my hair ( except from age ). Not sure if you are a guy or gal but THINK POSITIVE, you can beat this,, you WILL Survive, This is NOT a car crash! You are HERE Now, Life Gets easier, you will get to a stage when you wont think about your cancer every moment of every day.. Life is too short to be worried about when you wont be here. As I said, I am 42 now. I dont plan on going anywhere until I am 94. Have a nice life kid.. Chin up! and wear nice cloths,, dont think you are sick.. you have a sickness,,, it doesn't have you. Best of luck my little friend.. !! JOEMy husband Mick, also went threw,what you have gone threw.Since nov.06.A year ago it came back,these time to his lung, so they remove a part of that.Now he is on Nexavar.Today we went for his 3 months results.Thanks To God everything is Great.No sign of C.....{I HATE THAT WORD!!} He is 50.So prayers help alot.after all those scares, he is still my handsome man.My prayers to all that are battleing these awful beast.                                                            Rally53 rally53 Tue, 06 May 2008 00:00:00 GMT