Post by Deanne Jenkyns on Jun 18, 2007 13:18:18 GMT 1
Dear all,
I have added this section for persons who have recently being diagnosed. My views are that their is very little support for patients and their family once they have been dealt the devastating blow of finding out they have lung cancer. Their are so many unanswered questions and emotions that no Dr could understand unless they have been their themselves. While they can try to be sympathetic the impact is devastating and you can feel so very alone and in the dark. Here patients can ask advice from people who know what it feels like. When Jimmy was 1st diagnosed I thought I would die from a broken heart. I had a complete breakdown. I felt so alone, even though I had the support of my family and friends it was hard to talk to them openly about my fears and my feelings. Lung cancer patients are often painted a very black picture as was Jimmy, but he is so well. It is unfortunate that we have to fight for the right kind of care and that patients are often not told about drugs like tarceva. Tarceva is used as a second line treatment for patients with non small cell lung cancer. In other words a patient has to have gone through at least one chemotherapy regime. Tarceva is one of many drugs approved for use but unavailable to patients because of NICE guidelines. Most people know about the drug herceptin and breast cancer, lets just say that many cancer patients are finding themselves having to fight for approved second line treatments and most do not know whats out their because they are not told. Often patients just take on board what their Dr tells them and a lot of the time are afraid to ask questions. Their is Life after diagnosis. My husband Jimmy was diagnosed with stage IV disease 14 months ago and is doing so well, leading a normal life. Had I not done my own research...well I dread to think where we would be. I know that if you are reading this and have just recently been diagnosed you will be very afraid of an uncertain future and the unknown, I know this because I have been their. Never in a million years would I have thought that I would have found the strength to set up a website offering support to others. But here I am. I am no medical expert but have found that a lot of the time you cannot take what your Dr says as gospel. Thank god we asked questions and refused to accept what they told us. Through my own experience I hope to be able to offer support and advice to others. Don't accept what they tell you ask questions do your own research and challenge everything they tell you. You are a person, not a statistic or a number on a computer!
This link will take you to a different section on these boards containing valuble information deannejenkyns.proboards46.com/index.cgi?board=charter
Goodluck!
Deanne
x
I have added this section for persons who have recently being diagnosed. My views are that their is very little support for patients and their family once they have been dealt the devastating blow of finding out they have lung cancer. Their are so many unanswered questions and emotions that no Dr could understand unless they have been their themselves. While they can try to be sympathetic the impact is devastating and you can feel so very alone and in the dark. Here patients can ask advice from people who know what it feels like. When Jimmy was 1st diagnosed I thought I would die from a broken heart. I had a complete breakdown. I felt so alone, even though I had the support of my family and friends it was hard to talk to them openly about my fears and my feelings. Lung cancer patients are often painted a very black picture as was Jimmy, but he is so well. It is unfortunate that we have to fight for the right kind of care and that patients are often not told about drugs like tarceva. Tarceva is used as a second line treatment for patients with non small cell lung cancer. In other words a patient has to have gone through at least one chemotherapy regime. Tarceva is one of many drugs approved for use but unavailable to patients because of NICE guidelines. Most people know about the drug herceptin and breast cancer, lets just say that many cancer patients are finding themselves having to fight for approved second line treatments and most do not know whats out their because they are not told. Often patients just take on board what their Dr tells them and a lot of the time are afraid to ask questions. Their is Life after diagnosis. My husband Jimmy was diagnosed with stage IV disease 14 months ago and is doing so well, leading a normal life. Had I not done my own research...well I dread to think where we would be. I know that if you are reading this and have just recently been diagnosed you will be very afraid of an uncertain future and the unknown, I know this because I have been their. Never in a million years would I have thought that I would have found the strength to set up a website offering support to others. But here I am. I am no medical expert but have found that a lot of the time you cannot take what your Dr says as gospel. Thank god we asked questions and refused to accept what they told us. Through my own experience I hope to be able to offer support and advice to others. Don't accept what they tell you ask questions do your own research and challenge everything they tell you. You are a person, not a statistic or a number on a computer!
This link will take you to a different section on these boards containing valuble information deannejenkyns.proboards46.com/index.cgi?board=charter
Goodluck!
Deanne
x