Just want to "talk"

 

On 3/29/2007 Turtlebugs3 wrote:

Hi All, I don't have ovarian cancer, I haveI fallopian tube cancer. It's so rare that there is never anyone to speak to about it and it is treated like ovarian because it seems that that is all they know to do right now.

I am 56 years old and was diagnosed in Dec. '01 at the age of 51 with fallopian tube cancer. I have had surgery 3 times and just found out that once again it's back. This time it doesn't require surgery as it was not a tumor but a lesion somewhere on the vaginal wall. It was biopsied and proved to be the same cancer. I have had carbo and taxol once, (8 rounds of carbo, 11 of taxol),  just carbo without taxol (6 rounds),  and radiation once. I am very, very allergic to the carbo and had to be in intensive care to receive it. I was given tons of steroids which made me gain a lot of weight but I did get through the chemo. I completed that in September, only 6 months ago. Now I am going on Doxil. Apparently it is a chemo for people who have a recurrence within 6 months of completing the carbo. I have to take it once a month for 12 months.

My problem is that I am always sad and scared. I read things where people say cancer was a blessing, made them appreciate life, take on new adventures, blah, blah, blah. Is that the norm? I dread every doctor visit for fear of what I'll be told. I dread every phone call from any doctor's office. Don't get me wrong, I know I'm lucky to be here and still "healthy." But I think what bothers me is that because I look healthy and am able to function that everyone, including friends and family, tell me "I don't know why you are so upset, they caught it, you're fine, etc. It's just "old hat" to everyone so they don't understand that it is crushing to me every time I'm told it's back. This is the 4th time in just over 5 years. Is there any hope? I don't want pity, I want someone to understand how I feel. That it's very scary not to know from day to day. That's why I was thrilled to find this board. Not for sympathy, just understanding. 

 People say "well any one of us could walk across the street and get hit by a car and get killed."  I understand that but my thought is even though that is true I have that and cancer to worry about.  I guess I'm just being silly but I'm am soooo sad and don't want to always be in the dumps.

Sorry to go on and on. I just had to vent a little as I've had a very hard week.

 

Hi, Just want to talk,

I saw your message and wanted to let you know that you are not alone and people who have not been through it absolutley do not understand.

I would just like to share a few things that have helped me - I have late stage ovarian cancer - I found a Gilda's club and they have all kinds of cancer patients and cancer support group - there is always someone around who understands and a place to vent where everyone understands the fear and the other thing I would suggest is finding and ovarian cancer support group - they aren't fussy where your cancer is - they know the fear and understand the need to talk, without judgement

Call the Lance Armstrong Foundation - they are very knowledgeable and well connected

All the best to you

 

On 3/29/2007 Turtlebugs3 wrote:

Hi All, I don't have ovarian cancer, I haveI fallopian tube cancer. It's so rare that there is never anyone to speak to about it and it is treated like ovarian because it seems that that is all they know to do right now.

I am 56 years old and was diagnosed in Dec. '01 at the age of 51 with fallopian tube cancer. I have had surgery 3 times and just found out that once again it's back. This time it doesn't require surgery as it was not a tumor but a lesion somewhere on the vaginal wall. It was biopsied and proved to be the same cancer. I have had carbo and taxol once, (8 rounds of carbo, 11 of taxol),  just carbo without taxol (6 rounds),  and radiation once. I am very, very allergic to the carbo and had to be in intensive care to receive it. I was given tons of steroids which made me gain a lot of weight but I did get through the chemo. I completed that in September, only 6 months ago. Now I am going on Doxil. Apparently it is a chemo for people who have a recurrence within 6 months of completing the carbo. I have to take it once a month for 12 months.

My problem is that I am always sad and scared. I read things where people say cancer was a blessing, made them appreciate life, take on new adventures, blah, blah, blah. Is that the norm? I dread every doctor visit for fear of what I'll be told. I dread every phone call from any doctor's office. Don't get me wrong, I know I'm lucky to be here and still "healthy." But I think what bothers me is that because I look healthy and am able to function that everyone, including friends and family, tell me "I don't know why you are so upset, they caught it, you're fine, etc. It's just "old hat" to everyone so they don't understand that it is crushing to me every time I'm told it's back. This is the 4th time in just over 5 years. Is there any hope? I don't want pity, I want someone to understand how I feel. That it's very scary not to know from day to day. That's why I was thrilled to find this board. Not for sympathy, just understanding. 

 People say "well any one of us could walk across the street and get hit by a car and get killed."  I understand that but my thought is even though that is true I have that and cancer to worry about.  I guess I'm just being silly but I'm am soooo sad and don't want to always be in the dumps.

Sorry to go on and on. I just had to vent a little as I've had a very hard week.

 

There is all the reason to be thankful that you are living in an era where they can at least diagnose,& treat such a treacherous diease.Your "spirited" outlook on things can help you get a 'lil better.Even if you "fake",that you're havin' fun a lot,you can become to even start to have fun.

 

On 3/29/2007 Turtlebugs3 wrote:

Hi All, I don't have ovarian cancer, I haveI fallopian tube cancer. It's so rare that there is never anyone to speak to about it and it is treated like ovarian because it seems that that is all they know to do right now.

I am 56 years old and was diagnosed in Dec. '01 at the age of 51 with fallopian tube cancer. I have had surgery 3 times and just found out that once again it's back. This time it doesn't require surgery as it was not a tumor but a lesion somewhere on the vaginal wall. It was biopsied and proved to be the same cancer. I have had carbo and taxol once, (8 rounds of carbo, 11 of taxol),  just carbo without taxol (6 rounds),  and radiation once. I am very, very allergic to the carbo and had to be in intensive care to receive it. I was given tons of steroids which made me gain a lot of weight but I did get through the chemo. I completed that in September, only 6 months ago. Now I am going on Doxil. Apparently it is a chemo for people who have a recurrence within 6 months of completing the carbo. I have to take it once a month for 12 months.

My problem is that I am always sad and scared. I read things where people say cancer was a blessing, made them appreciate life, take on new adventures, blah, blah, blah. Is that the norm? I dread every doctor visit for fear of what I'll be told. I dread every phone call from any doctor's office. Don't get me wrong, I know I'm lucky to be here and still "healthy." But I think what bothers me is that because I look healthy and am able to function that everyone, including friends and family, tell me "I don't know why you are so upset, they caught it, you're fine, etc. It's just "old hat" to everyone so they don't understand that it is crushing to me every time I'm told it's back. This is the 4th time in just over 5 years. Is there any hope? I don't want pity, I want someone to understand how I feel. That it's very scary not to know from day to day. That's why I was thrilled to find this board. Not for sympathy, just understanding. 

 People say "well any one of us could walk across the street and get hit by a car and get killed."  I understand that but my thought is even though that is true I have that and cancer to worry about.  I guess I'm just being silly but I'm am soooo sad and don't want to always be in the dumps.

Sorry to go on and on. I just had to vent a little as I've had a very hard week.

 

Hi Turtlebugs3: I just read your message and wanted to reply.  I know what you mean about dreading every call from a doctor's office and every test.  I feel exactly the same way.  We sound very similar.  As far as people saying cancer is a blessing, I think that if you survive it, it is a blessing because it teaches you to treasure every day you have instead of just taking life for granted like most people do.   Of course, if you don't survive it, it's really not much of a blessing.  I think if you have a loving family, it brings you closer because it makes you realize you may not have forever to live and be together.  Cancer teaches you not to waste time and get upset about little things that don't really matter in the long run.  It's easy for others to tell you, don't worry, they caught it in time, etc.  Of course, they would be singing a different tune if it happened to them.  You don't know what it feels like until you go through it yourself.  Sounds like you are trying to do all you can to stay healthy and that's all that you can do.  I know it's difficult not to be scared and sad and upset.  But those emotions do cause stress and stress is not good for cancer patients.  So, all the worrying in the world won't stop the cancer from coming back so it doesn't do any good to worry.  Since worrying can't help and may hurt, I try as hard as I can to try not to worry.  I know that's not easy, but it is healthier for us.           

 

4 difficult calls from the doctor is enough to scare anyone. Every call interrupts your life, treatments are tough! Anyone that doesn't understand why you would be upset does not know what you have been through. Instead of diminishing what you are going through and telling you to be thankful for the cancer I would instead count my other blessings and look at the things you CAN be thankful for. What you are going through is valid and people don't always know how to relate to the pain. Your friends and family are doing the best they can but its not always helpful. There is something to be said about a joyful heart, but that does not mean you have to be fake about the pain of life. 

Thank you so much for your reply.  It's very helpful to have a little "pep" talk and understanding.