A word of wisdom

marleyboo2

“If I were asked to give what I consider the single most useful bit of advice for all humanity it would be this: Expect trouble as an inevitable part of life and when it comes, hold you head high, look it squarely in eye and say, 'I will be bigger than you. You cannot defeat me.'” Ann Landers...defeat is bigger than death I think defeat is when you give up hope, you give in. I think about the cancer that I had many times in the course of a day. Everyday I try to make my body stronger in some way mentally or physically, if I can't I read something about how I could. I believe in healing and health for myself and all of you. Doctors have been wrong, are wrong ,make group judgments, guess a good course of treatment and guess when you will live and guess that you will die. Well I don't listen to that because it does not matter. I will fight and be strong until the day I die. I can tell you that doctors are not like us. They see death and dying everyday of their lives. It is nothing to them to pronounce you on death's doorstep. The next patient is waiting. I DO NOT listen. I choose not to believe. If I am wrong well I lived happily ignorant instead of gloomily right. I have had the best five years of my life. If death comes then I will have LIVED!

nancy591

somewhat harsh
Don't forget it is the doctors that saved your life. Although you have some good thoughts on having a positive outlook I feel you are way to harsh on the doctors. Death is a fact of life. Doctors do get sick and die as well....they do get cancer too. They feel, they care, but yes, the oncology doctors deal with death on a daily basis. My doctor never gave me hard statistics. Like a previous poster mentioned on a different thread, talking with my doctors about statistics is like pulling teeth. The statistics are what they are. When I see my doctor I feel like a person, not just another patient. My doctors ask me about my kids and I truly feel that they care. Some doctors are harsh, blunt, rude. I worked as an RN for many years. The last 12 of which I spent in geriatrics. I've watched many people die of many different causes.

I trust my medical team whole heartedly. I fight and they are helping me along. I was never told you will live x amount of years. I too would rather live in ignorant bliss!! And yes, those will have been the best years of my life. Sometimes knowledge just leads to more worry!

Best of luck to all.

marleyboo2

nancy591 said:

somewhat harsh
Don't forget it is the doctors that saved your life. Although you have some good thoughts on having a positive outlook I feel you are way to harsh on the doctors. Death is a fact of life. Doctors do get sick and die as well....they do get cancer too. They feel, they care, but yes, the oncology doctors deal with death on a daily basis. My doctor never gave me hard statistics. Like a previous poster mentioned on a different thread, talking with my doctors about statistics is like pulling teeth. The statistics are what they are. When I see my doctor I feel like a person, not just another patient. My doctors ask me about my kids and I truly feel that they care. Some doctors are harsh, blunt, rude. I worked as an RN for many years. The last 12 of which I spent in geriatrics. I've watched many people die of many different causes.

I trust my medical team whole heartedly. I fight and they are helping me along. I was never told you will live x amount of years. I too would rather live in ignorant bliss!! And yes, those will have been the best years of my life. Sometimes knowledge just leads to more worry!

Best of luck to all.

Time has helped
There is a small percentage of docs like yours. But everyone has to face this on his or her own terms. For me it is a horrible experience that I would never relive. It is that I never thought about having my own thoughts I just went blindly into what the docs said and many times they were wrong. When I started self advocating things got better. I wish everyone the very best in their journey this was just MY thoughts. Hugs and love to all.

marleyboo2

marleyboo2 said:

Time has helped
There is a small percentage of docs like yours. But everyone has to face this on his or her own terms. For me it is a horrible experience that I would never relive. It is that I never thought about having my own thoughts I just went blindly into what the docs said and many times they were wrong. When I started self advocating things got better. I wish everyone the very best in their journey this was just MY thoughts. Hugs and love to all.

I TOTally respect everyone else's opinion. I was just telling you my own experience. Not great! But the outcome???? Awesome.

Tina Brown

marleyboo2 said:

I TOTally respect everyone else's opinion. I was just telling you my own experience. Not great! But the outcome???? Awesome.

Compromising
Here's me being a compromiser (its what I do best!!!!!)

Marleyboo2 I suspect you have a really bad experience with your medical team in what is the worse possible time in your life. We look at our medical team as 'our life savers' as they appear to have all the answers as they are experts in their field of medicine so you trust them. If they let you down you don't have anywhere else to turn to for comfort or further hope. I really understand what you are trying to say. I think you must have been let down badly when you needed support and reassurance which has left you frightened and scared so you can't trust them again. I am truley sorry this happened to you at a time a when you need the confidence that experts can give you.

However there are some wonderful caring and compassionate oncologists out there. I have experienced both types. My main doctor takes time to talk to me and listens to my fears, bizzare question (and answers them honestly so I can understand medical jargon) he laughs with me at my desire to get back into running (which was totally unrealisic at the beginning) and when I had a procedure in hospital he was there to deal with a complication. I love him and trust him with my life. However, I happened to see his consultant (his boss!!!!) this week and he was the polar opposite of my doctor. In the consultation room I was seated and he stood with his back to the door. I found that not only rude but dismissive. He didn't seem very familar with my notes (he'd left them in another room) I asked him questions and he very very vague with the answers which immediately instilled distrust in me. I just hope he is a good surgeon as he had 0 charisma as a doctor.

I totally agree about the power of the body to heal itself through positive thinking, getting out there and living your life to the full and just being glafor the little things like good friends and supportive families.

Best wishes Tina

marleyboo2

Sick
Part of the problem with me was that I was SO sick. SO So SO sick. I could not even watch TV. The Drs. I felt did not want to deal with me. There were plenty of people who didn't feel good but they were not lying prone everyday. I was what I was a human experiencing the worst possible reaction. So instead of getting creative they got silent. Well I am still here 5 1/2 years later. I am one of the most active women I know that is my age and I BET anything that if I went back to the Drs. offfice he would be shocked that I was still here. But I feel that here in this forum somehow it is wrong to totally feel your feelings and tell it like it is. I don't think Drs. are the total answer. Did they remove my tumors? Yes. But after that it was up to me. I believe in healing and wellness and not being Dr. reliant. Sorry if you don't agree. Am I angry no way I am here! So I am off to ride my horses. I am healed you can call youself whatever you want.

saundra

nancy591 said:

somewhat harsh
Don't forget it is the doctors that saved your life. Although you have some good thoughts on having a positive outlook I feel you are way to harsh on the doctors. Death is a fact of life. Doctors do get sick and die as well....they do get cancer too. They feel, they care, but yes, the oncology doctors deal with death on a daily basis. My doctor never gave me hard statistics. Like a previous poster mentioned on a different thread, talking with my doctors about statistics is like pulling teeth. The statistics are what they are. When I see my doctor I feel like a person, not just another patient. My doctors ask me about my kids and I truly feel that they care. Some doctors are harsh, blunt, rude. I worked as an RN for many years. The last 12 of which I spent in geriatrics. I've watched many people die of many different causes.

I trust my medical team whole heartedly. I fight and they are helping me along. I was never told you will live x amount of years. I too would rather live in ignorant bliss!! And yes, those will have been the best years of my life. Sometimes knowledge just leads to more worry!

Best of luck to all.

Grateful
I am blessed to have really caring gyn/onc and oncologist. They have saved my life. Saundra

Hissy_Fitz

marleyboo2 said:

Sick
Part of the problem with me was that I was SO sick. SO So SO sick. I could not even watch TV. The Drs. I felt did not want to deal with me. There were plenty of people who didn't feel good but they were not lying prone everyday. I was what I was a human experiencing the worst possible reaction. So instead of getting creative they got silent. Well I am still here 5 1/2 years later. I am one of the most active women I know that is my age and I BET anything that if I went back to the Drs. offfice he would be shocked that I was still here. But I feel that here in this forum somehow it is wrong to totally feel your feelings and tell it like it is. I don't think Drs. are the total answer. Did they remove my tumors? Yes. But after that it was up to me. I believe in healing and wellness and not being Dr. reliant. Sorry if you don't agree. Am I angry no way I am here! So I am off to ride my horses. I am healed you can call youself whatever you want.

I hope this isn't too
I hope this isn't too personal, but am I reading your post correctly? You don't have regular contact/check-ups with your doctor? I can certainly understand your frustration and dissatisfaction with the doctor who treated you in the past, but I would also highly recommend that you shop for a new Gyn/Oncologist - one that you have a better rapport with. Even after 5 1/2 years, I don't think I would assume that there was no longer a need for monitoring.

Just my shiny dime's worth......
Carlene

marleyboo2

My decision
I had to make a personal decision that worked for me. I can not tolerate chemo. I would never choose to have the life I had for a year again. The first time on chemo I was very close to death more than once. I had to have blood transfusions, they had to monitor my chemo infusions while I was hospitalized and then I would turn around two days later and be back in the hospital for dehydration or something else. The drs. really were at a loss. I don't really know why they didn't take me off of them but they didn't. I totally looked like a concentration camp victim. I was unable to walk and had neuropathy of the feet and hands. I am a very intelligent person and have studied extensively the stats on people like myself. Not a whole lot that can be done. I also had a pal who had OVCA 111 at the exact same time as me. She did really well with her treatments, she followed her Drs. advice to a T she had scan after scan always knew her CA 125 but she never did anything besides treat with a Dr. she did not do anything but Drs office stuff. But her cancer was not going away. Even the Dr. said that she should stop treating but she wouldn't becasue she held out the hope that this last dose of chemo would save her. It did not I lost my friend 2 years ago. She had no quality to her life at all because she could not stop chasing the cure. I on the other hand am the exact opposite I am chasing life. I asm living the best life I have ever lived, I am happier on a daily basis than I have ever been. I am not going to be a guinea pig. I fight this with natural methods. I don't see that talked about here. But chemo only works for one out of four people. I am not one of them. Soooo should I be a guinea pig or should I live a happy life? I like it the way it is. You all have to do what you have to do becasue you will never forgive yourselves if you dont. I will tell you this. In the end Barbara told me she wished she had just lived her life. For me no scans no Drs. office no bloodtests and no barely keeping me alive. There are LOTS of people like me but you dont meet them becasue they are not on these boards and they are not at the Drs. office. They are out there making the most out of life. My whole family is for me. i have two daughters and 10 grandchildren and of couse my husband. They think I am making the wisest choice given the circumstances. The other thing is that if they ever said yes you have cancer, I would probly just give up the fight. Now, I just live everyday. Remember you have to walk in my shoes to know where I am coming from.

Hissy_Fitz

marleyboo2 said:

My decision
I had to make a personal decision that worked for me. I can not tolerate chemo. I would never choose to have the life I had for a year again. The first time on chemo I was very close to death more than once. I had to have blood transfusions, they had to monitor my chemo infusions while I was hospitalized and then I would turn around two days later and be back in the hospital for dehydration or something else. The drs. really were at a loss. I don't really know why they didn't take me off of them but they didn't. I totally looked like a concentration camp victim. I was unable to walk and had neuropathy of the feet and hands. I am a very intelligent person and have studied extensively the stats on people like myself. Not a whole lot that can be done. I also had a pal who had OVCA 111 at the exact same time as me. She did really well with her treatments, she followed her Drs. advice to a T she had scan after scan always knew her CA 125 but she never did anything besides treat with a Dr. she did not do anything but Drs office stuff. But her cancer was not going away. Even the Dr. said that she should stop treating but she wouldn't becasue she held out the hope that this last dose of chemo would save her. It did not I lost my friend 2 years ago. She had no quality to her life at all because she could not stop chasing the cure. I on the other hand am the exact opposite I am chasing life. I asm living the best life I have ever lived, I am happier on a daily basis than I have ever been. I am not going to be a guinea pig. I fight this with natural methods. I don't see that talked about here. But chemo only works for one out of four people. I am not one of them. Soooo should I be a guinea pig or should I live a happy life? I like it the way it is. You all have to do what you have to do becasue you will never forgive yourselves if you dont. I will tell you this. In the end Barbara told me she wished she had just lived her life. For me no scans no Drs. office no bloodtests and no barely keeping me alive. There are LOTS of people like me but you dont meet them becasue they are not on these boards and they are not at the Drs. office. They are out there making the most out of life. My whole family is for me. i have two daughters and 10 grandchildren and of couse my husband. They think I am making the wisest choice given the circumstances. The other thing is that if they ever said yes you have cancer, I would probly just give up the fight. Now, I just live everyday. Remember you have to walk in my shoes to know where I am coming from.

I understand, Marley
And I respect your decision totally to do what feels "right" for you.

I was very, very sick following my de-bulking surgery - even before starting chemo. I had to be fed TPN (via a chest port) and also received blood transfusions. I was hospitalized for 16 days and even when I came home, I was very fragile. But I could not wait to start chemo, and even begged my doctor to do IP chemo (he refused, based on my poor physical condition).

I was prepared for all the side effects I had heard about: nausea, neuropathy, low red/white counts, low platelets, hair loss, fatigue, etc, etc, etc. At least I thought I was. My first chemo session, I had such a bad reaction, I truly thought I was dying. My blood pressure and pulse went thru the floor. I passed out and had to be revived with an injection (plus those stinky ammonia things). They stopped the infusion for 45 minutes, then re-started it at a much slower rate. I left the building in a wheelchair. I remember thinking that if each infusion got worse, I did not know if I would make it past number two or three.

Since then, I have completed another 6 sessions (5 more active treatments and my first Taxol maintenance). Each time, it has gotten easier. I've had some issues with my CBC tests that required blood transfusions and shots in the abdomen, but all in all, I'm happy to say that the really bad side effects are all just a bad memory.

You are so right........everyone needs to choose their own path, regardless of pressure from friends, family - anyone. Because we are the ones who have to live with the consequences if we make a choice that turns out badly.

I am so glad to hear you are feeling healthy and enjoying life. Quality of life is everything.

Never, ever give up. No matter what happens. We will all live exactly as long as God intends for us to - not one minute more, or less.

Carlene

marleyboo2

Hissy_Fitz said:

I understand, Marley
And I respect your decision totally to do what feels "right" for you.

I was very, very sick following my de-bulking surgery - even before starting chemo. I had to be fed TPN (via a chest port) and also received blood transfusions. I was hospitalized for 16 days and even when I came home, I was very fragile. But I could not wait to start chemo, and even begged my doctor to do IP chemo (he refused, based on my poor physical condition).

I was prepared for all the side effects I had heard about: nausea, neuropathy, low red/white counts, low platelets, hair loss, fatigue, etc, etc, etc. At least I thought I was. My first chemo session, I had such a bad reaction, I truly thought I was dying. My blood pressure and pulse went thru the floor. I passed out and had to be revived with an injection (plus those stinky ammonia things). They stopped the infusion for 45 minutes, then re-started it at a much slower rate. I left the building in a wheelchair. I remember thinking that if each infusion got worse, I did not know if I would make it past number two or three.

Since then, I have completed another 6 sessions (5 more active treatments and my first Taxol maintenance). Each time, it has gotten easier. I've had some issues with my CBC tests that required blood transfusions and shots in the abdomen, but all in all, I'm happy to say that the really bad side effects are all just a bad memory.

You are so right........everyone needs to choose their own path, regardless of pressure from friends, family - anyone. Because we are the ones who have to live with the consequences if we make a choice that turns out badly.

I am so glad to hear you are feeling healthy and enjoying life. Quality of life is everything.

Never, ever give up. No matter what happens. We will all live exactly as long as God intends for us to - not one minute more, or less.

Carlene

8 rounds and two years.
I did eight rounds and two years of healing after that. It was a long haul. I will never give up and I loved your last sentence. Thanks.
Deb