Hello, new here.
Then last April my mom was diagnosed with polycystic kidney disease. Since it's hereditary there was concern that if I had it I needed to be diagnosed quickly since my anti-seizure meds can affect kidney and liver function as can PCKD. I went to the Dr and she did some bloodwork to find something for the insurance co. to hang their hat on. I was anemic so she ran with that and I got my ultrasound in May. They found a 4.3 cm mass on my right kidney and referred me to a nephrologist, but I was still thinking PCKD. I saw him in June (three days before my 32nd birthday) and he did a CT and called me an hour after I got home. It was 6.3 cm and had to come out. He referred me to a urologist. I had a robotic assited radical right nephrectomy on July 30th. The surgery was nothing like I had feared. With my c-section I had so many problems and was sick and in pain for so long I couldn't believe people did them electively. I was sure this would be worse. It was so much easier. I was walking that night. Could stand up straight the next day. It was RCC but was fully encapsulated with no other involvement. I had my first follow up scans in November and they were all clear. I am elated and I feel blessed but also a little lost. I feel 6 kinds of wrong saying this, and desperately hope I'm not offending anyone, but I don't feel like I've done anything - been through anything. Of course I have a little fear before my scans and such, but I don't feel that I've survived anything. I don't feel like anything has happened. I have all of these new scars and I still tire easily, but I don't feel any differently. When people mention that I've survived cancer it's embarrassing to me. I didn't fight for this. I didn't do anything except get lucky that it was found and then show up for the surgery. My Uncle just passed of lung cancer and fought long and hard. My grandfather passed from prostate cancer after fighting for 3 long, agonizing years. My step-grandfather on the other side has fought and beat prostate cancer 3 times in the last 20 years and is now battling blood cancer of some type (I'm unsure what kind, he doesn't want to dwell on it by discussing it). They were/are survivors. They fought, and one of them still is. I don't see how I can possibly place myself in the same category. There has been no chemo, no radiation, no hair loss, no nausea so bad I can't stand the smell of food from the neighbors house. I have, quite literally, been fine. The minor discomfort and pain post surgery doesn't feel adequate to gain admittance to the club. Is this some form of survivor's guilt? Am I being a fool? I am aware of the gift I've been given. I am more grateful than words can say that I am here to celebrate Christmas with my family this year and the tumor isn't. I just don't feel that I've actually survived anything. And then feel guilty for feeling that way. I can't talk to my mom, dad, sister, husband about this because they're so adamant that I'm so tough, so amazing. That I got through it all without hardly batting an eye. That I'm such a rock. I'm not though, sometimes commercials make me cry (and always have), it's just that this didn't seem hard enough, and maybe that means it'll come back because I didn't earn it.... didn't work for it, didn't fight. Does anyone else feel this way or am I just crazy?
(Edit) I need to add, I think you all are amazing. You're compassionate and tough and you've all been through so much. I hope that I haven't offended anyone as I consider all of you to be survivors. It's me I'm having a hard time with. I hope that makes sense and you can see through this bumbling attempt to what I'm trying to say. What I'm trying to seek help for. Thank you so much for your time.
Comments
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Whew!
First, let me congratulate you on surviving LIFE! You've already battled through (and continue to battle) epilepsy plus all the other challenges that life has thrown your way.
Second, as far as I'm concerned, you're not crazy - and I seriously doubt whether anyone here will be offended by your remarks. Truthfully, I have always felt the same way you do. I've never felt like I was/am a survivor. I always felt it 'just happened' and through dumb luck it was found - and through the skill of excellent surgeons and followup of an excellent oncologist - I'm still kicking. I was never afraid when I got the diagnosis - it was just something else to handle and get over (I'd had half a dozen major surgeries before and had total faith that I'd get through this one too). After surgery and recovery I went back to work - and had no time to spend fretting over myself - as 9/11 hit just days later! Talk about a reality check! Since then I've had a couple more rounds with RCC - but again, I still don't feel like a 'survivor'. I've always thought of myself as the odd duck but never verbalized my feelings - unlike you - and until now. I applaud your honesty and candor.
I think the reason you have handled this so well is that you've already been through so much - and that's just the way you are - you handle things and move on with life. You are strong and resilient with, I believe, an amazing love of life. There should be no guilt involved here! I have no doubt your family is oh so happy to have you with them this Christmas - and I for one am happy to welcome you here - to 'another family'.
LizB
still NDY0 -
Are you CRAZY?lbinmsp said:Whew!
First, let me congratulate you on surviving LIFE! You've already battled through (and continue to battle) epilepsy plus all the other challenges that life has thrown your way.
Second, as far as I'm concerned, you're not crazy - and I seriously doubt whether anyone here will be offended by your remarks. Truthfully, I have always felt the same way you do. I've never felt like I was/am a survivor. I always felt it 'just happened' and through dumb luck it was found - and through the skill of excellent surgeons and followup of an excellent oncologist - I'm still kicking. I was never afraid when I got the diagnosis - it was just something else to handle and get over (I'd had half a dozen major surgeries before and had total faith that I'd get through this one too). After surgery and recovery I went back to work - and had no time to spend fretting over myself - as 9/11 hit just days later! Talk about a reality check! Since then I've had a couple more rounds with RCC - but again, I still don't feel like a 'survivor'. I've always thought of myself as the odd duck but never verbalized my feelings - unlike you - and until now. I applaud your honesty and candor.
I think the reason you have handled this so well is that you've already been through so much - and that's just the way you are - you handle things and move on with life. You are strong and resilient with, I believe, an amazing love of life. There should be no guilt involved here! I have no doubt your family is oh so happy to have you with them this Christmas - and I for one am happy to welcome you here - to 'another family'.
LizB
still NDY
Probably. It's what has kept you from going insane! You are a tough, brave woman. Nice to meet you. Welcome to your new group of friends. I wonder how many of us think of ourselves as survivors? Most of us have either a current status of "no eveidence of disease" or are dealing with this "chronic" condition. I am impressed with your fortitude. Just add renal cell carcinoma to your laundry list of health issues you effectively manage. Your family must be very proud. Just keep on keeping on. Please maintain your good spirit. You are awesome!0 -
Survivor guiltfoxhd said:Are you CRAZY?
Probably. It's what has kept you from going insane! You are a tough, brave woman. Nice to meet you. Welcome to your new group of friends. I wonder how many of us think of ourselves as survivors? Most of us have either a current status of "no eveidence of disease" or are dealing with this "chronic" condition. I am impressed with your fortitude. Just add renal cell carcinoma to your laundry list of health issues you effectively manage. Your family must be very proud. Just keep on keeping on. Please maintain your good spirit. You are awesome!
Liz, it's always good to see you posting and sounding good, even sandwiched between a Wolflvr and a foxhd!
Wolflvr, that's quite a journey to have made by such a young age. You've just heard from a couple of the real heroes of this forum, both of whom have had experiences as dire as yours (although they're both quite a bit older than you are). They're both survivors and both of them have felt the same guilt and probably still do. Anyone who's managing to cope will be inclined to feel compassion for those who can't and, because this illness is so unfair, to wonder why they are feeling OK when others can't and with that comes a sense of guilt.
It might help you to know just how general this feeling is. We even have a thread on the subject entitled simply "Survivor guilt" and you'll find it here:
http://csn.cancer.org/node/2463320 -
Survivors,Texas_wedge said:Survivor guilt
Liz, it's always good to see you posting and sounding good, even sandwiched between a Wolflvr and a foxhd!
Wolflvr, that's quite a journey to have made by such a young age. You've just heard from a couple of the real heroes of this forum, both of whom have had experiences as dire as yours (although they're both quite a bit older than you are). They're both survivors and both of them have felt the same guilt and probably still do. Anyone who's managing to cope will be inclined to feel compassion for those who can't and, because this illness is so unfair, to wonder why they are feeling OK when others can't and with that comes a sense of guilt.
It might help you to know just how general this feeling is. We even have a thread on the subject entitled simply "Survivor guilt" and you'll find it here:
http://csn.cancer.org/node/246332
All of us are survivors. Each of us as part of our initiation went thru a not so fun surgery to rid ourselves of a disease that if left unchecked would have resulted in each one of us dying.The fact that many of us had an easier time with RCC than others or faced worse heath problems in our past does not change the fact that each of us was dealt a disease that would eventually kill us without major surgery and each of us is here today as a Survivor. As a survivor we embrace each and every other survivor.
Icemantoo0 -
WOW!!!
Hi Wolfie,
I can only echo what the others have said above. For me, if cancer has entered your life as a patient or caregiver and you are still here to talk about it, YOU ARE A SURVIVOR. I think there are different levels though, from a mere survivor like me (caught early, surgery, excellent pathology and prognosis) to hero level like Liz, Fox, Tex, and others here, who continue to battle and remain extremely humble as they do so, much like your relatives. Feeling guilty about having it so "easy" when so many others have not is normal, I felt much like you about 3 years ago and I live a fairly charmed life. Couple what you have already been through (surviving life as Liz aptly puts it) can only magnify the feelings. Finding a group such as this one, or a support group in your area if face to face works better for you, where you can express your feelings, fears, and emotions without worry is a huge step in the right direction. Concerns about offending anyone here can be laid aside, we're here if/when you need us and we'll help any way we can, so hang around, read our stories, and post often, you are among friends.
Welcome to the club,
Gary0 -
Thank you allicemantoo said:Survivors,
All of us are survivors. Each of us as part of our initiation went thru a not so fun surgery to rid ourselves of a disease that if left unchecked would have resulted in each one of us dying.The fact that many of us had an easier time with RCC than others or faced worse heath problems in our past does not change the fact that each of us was dealt a disease that would eventually kill us without major surgery and each of us is here today as a Survivor. As a survivor we embrace each and every other survivor.
Icemantoo
Liz - So good to know I'm not the only one. I can't tell you how much your comments mean to me. Seems you've had a pretty rough road with this and have much the same view as me, it's quite nice to meet you
Fox - Hah, yes, I probably AM crazy. I always said normal was boring so I suppose I'm not boring. May have overshot that goal a bit though, lol. I'm delighted to meet you I've read many of your posts and you're pretty awesome yourself.
Texas - Thanks so much and I'll be sure to check out that link as soon as I can. SO many great people here. I'm so glad to be here (even if not so happy about the fee to get admitted lol)
Icemantoo - You are absolutely correct. That is a perfect way of looking at it and I will try to keep that in the back of my mind. Thank you for responding.
I thank all of you, because with just a few responses I feel significantly less alone. Much less adrift. I am most certainly not alone in my daily living, I have much in the way of love and support and my family would be deeply saddened to know how I feel, but they simply cannot help with this. They would feel inadequate, lacking, not enough... and not for all the chocolate covered pretzels in the world would I ever make them feel that way.
It's like when I was waiting for the surgery and they were all "how are you?" with their somber sad voices waiting for me to break and I would say "I'm fine. Really. Stop worrying." and they'd say something like "Well I don't know where you get your spine, but when you break you can call me." (That was my grandma actually, and she didn't say it to be mean, she really didn't understand). And in the hospital, before the surgery, I was scared a little (I HATE anasthesia!), but had to smile and laugh and joke, because there were tears streaming down all of their faces that they tried in vain to hide. And my dad was having a heart valve replacement 2 weeks later so I couldn't stress him anymore, and my sister was on the verge of a breakdown, and my mom was a mess (always is). So I laughed, and I joked, and I told them to stop crying. This was nothing. Blue babies, micro preemies, seizures, those are serious. This? This is nothing.
But if I'm really, really honest, I felt just a little bit robbed. Who did I get to cry to? I couldn't. And I know, I know, I could have. I could have cried WITH them, but then they would have KNOWN that I wasn't as sure as I said I was. That when I held my mom's chin in my hand and stared into her eyes and said "Repeat after me. Everything - is - going - to - be - fine." And then "I promise" I had lied, because I had no idea. But I'm Downy. You know, the quicker picker upper? That's me. They fall and I pick them up. I pick them up verbally, emotionally, and financially when I can. I was going to be down and then who would? And I know that sounds egotistical, but it's just fact. I'm the person people call for help and brutal in your face honesty. If you don't want those, don't call me, lol. I'm not evil about it, but I won't lie. So when I promised them everything would be fine, that I KNEW everything would be fine, that I wasn't worried at all, they believed me. And I know that technically I robbed I myself, that it's not my responsibility to protect them, but that's what I do. It's what I've always done since I was 7.
So anyway, I hope that any other people reading this who have felt this way, or who are feeling this way will know that they can cry to me, heh. Message box open. Don't hold all that in. It really sucks.0 -
Exactlygarym said:WOW!!!
Hi Wolfie,
I can only echo what the others have said above. For me, if cancer has entered your life as a patient or caregiver and you are still here to talk about it, YOU ARE A SURVIVOR. I think there are different levels though, from a mere survivor like me (caught early, surgery, excellent pathology and prognosis) to hero level like Liz, Fox, Tex, and others here, who continue to battle and remain extremely humble as they do so, much like your relatives. Feeling guilty about having it so "easy" when so many others have not is normal, I felt much like you about 3 years ago and I live a fairly charmed life. Couple what you have already been through (surviving life as Liz aptly puts it) can only magnify the feelings. Finding a group such as this one, or a support group in your area if face to face works better for you, where you can express your feelings, fears, and emotions without worry is a huge step in the right direction. Concerns about offending anyone here can be laid aside, we're here if/when you need us and we'll help any way we can, so hang around, read our stories, and post often, you are among friends.
Welcome to the club,
Gary
Thanks so much Gary. That's it, the different levels. Feels weird to have the same term applied, you know? Yes it's no less true, but it's like the survival should be graded like the cancer was, and people should have to say it when they refer to me so no one would mistake me for a grade three survivor. Then I wouldn't feel so embarrassed. And it's not as though I make light of it, I certainly don't. Just think the gold medals belong elsewhere.0 -
Yea yea yea.,.. Yes I know IWolflvr said:Exactly
Thanks so much Gary. That's it, the different levels. Feels weird to have the same term applied, you know? Yes it's no less true, but it's like the survival should be graded like the cancer was, and people should have to say it when they refer to me so no one would mistake me for a grade three survivor. Then I wouldn't feel so embarrassed. And it's not as though I make light of it, I certainly don't. Just think the gold medals belong elsewhere.Yea yea yea.,.. Yes I know I am responding to an olde thread.. but I did a search for polycystic and this is the only posting here.... So, I just reconnected with a long lost cousing.. her son has polycystic kidney cancer.. But this guy has lived with it and is now 22 years old... Wonder if there are any others with this type of cancer..??
Ron
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Gsoh.. and now a second..GSRon said:Yea yea yea.,.. Yes I know I
Yea yea yea.,.. Yes I know I am responding to an olde thread.. but I did a search for polycystic and this is the only posting here.... So, I just reconnected with a long lost cousing.. her son has polycystic kidney cancer.. But this guy has lived with it and is now 22 years old... Wonder if there are any others with this type of cancer..??
Ron
Gsoh.. and now a second.. Just heard from a pal that has PkD as well.. his one Kidney is down to about 20% function...
I hope all are well...
Ron
0
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