| Cancer... There's Hope
Chapter 10 |
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Centers Epilogue Authors Glossary Chapter: 1 2 3 4 5 6 7 8 9 10 11 12 13 14 |
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On the flight home from Houston on May 1, 1980, the words that the doctor had used on April 3, 1978, rang loud in my ears. "Dick, you are a very sick boy. We are going to make you a lot sicker, but we are going to cure you. We are going to cure you, so that you can work for cancer." He was as good as his word. Here I was, going home, cured. It was at this moment that I decided to dedicate the rest of my life to helping people with cancer. The big questions were where and how. I went through the important factors. They included early recognition of cancer, eliminating the causes of cancer, discovering new treatments for cancer, creating immunity from cancer, treating and curing cancer. Where could I fit in best? Since at that time the U.S. government donated about $1 billion a year toward the fight against cancer, and the American Cancer Society raised nearly $200 million a year, I knew that any financial contribution I made would not be meaningful. Besides, I really wanted to give of myself. I remembered an old adage that you can write a better story if you write it from personal experience. Therefore, my forte had to lie in the treatment and cure of cancer. The other four factors are best handled by qualified scientists and doctors. I had been through the treatment and cure of cancer, and no one knew more about my thoughts, feelings, emotions and trauma than I did. My mind went back to the day when the surgeon told me I had a malignancy. My wife and I were numb, disbelieving and tormented by questions, with no place to turn to for answers. I realized that I was not unique, that most people must have these same feelings. Furthermore, there must be many other cured or recovering cancer patients who would be eager to help. It would be wonderful to set up a group of lay volunteers who have or have had cancer and would be willing to talk with newly diagnosed victims. If I could only have seen a person who had recovered from lung cancer, it would have meant everything to me. Even if he never said a word, I would know that if he could do it, I could do it, too. These thoughts developed into the Cancer Hot Line. I arranged a luncheon with the executive director of Human Rescue, Inc., a non-profit crisis intervention telephone service. My thought in contacting him was that Human Rescue already had telephone lines with volunteers to answer them. If we could use their facilities, all we would need in order to have the Hot Line in operation would be the cancer volunteers. He listened to the concept of the Hot Line, liked it, and offered the use of his resources. Since we had Human Rescue to answer the phone, all we needed were volunteers and training for them. I had lunch with a psychiatrist, and he, with the help of a social worker, agreed to plan and give the training. Jerry Smith, a retired Kansas City businessman and philanthropist, headed up the Cancer Hot Line and arranged to use Central Methodist Church as headquarters for training. The key to the success of the Cancer Hot Line is publicity, to make people so aware that when a malignancy is diagnosed and their minds are completely disoriented, they will still recall the publicity and call the Cancer Hot Line. Furthermore, this publicity must be directed toward people who have absolutely no interest in it. It must be directed to healthy people who "know" they will never get cancer and do not want to hear about it. I felt confident that once the publicity broke, we would have an abundance of former cancer patients as volunteers. However, we needed a few screened and trained volunteers, so that we could handle the calls that came in from the initial publicity. Through my acquaintances and others in the program, a nucleus of volunteers was gathered and trained in early August. There was extended discussion on the amount of training to be given. Some people wanted all volunteers to attend four sessions, to be taught all terms relating to cancer, descriptions of various types of cancer and so on. I persevered and won out in that volunteers were taught what not to say. Everything else must come from their personal experience. It has since proved to be the right way. The Bloch Cancer Hot Line is a reality. It is a group of over 500 lay volunteers who have or have had cancer and are available to talk on the telephone and possibly visit a newly diagnosed cancer patient or potential cancer patient. The victim calls the Cancer Hot Line toll-free number 800-433-0464 (816-932-8453 in Kansas City) and gives certain relevant information, including name, age, sex, address, phone number and type of cancer. A volunteer who has had the same type of cancer and most nearly matches the sex, age and location, will contact the victim within fifteen minutes, if possible. The purposes of this contact are many. It immediately shows the victim that his type of cancer is not necessarily fatal and can be treated. It gives him a lay friend who can commiserate with him. It allows him to ask all his unanswered questions. The answers are in simple language; they are from personal experience and not from textbooks, and there is no pressure or fear of taking up a professional's time. The volunteer is screened and trained to never give a prognosis or medical advice. He is to serve as a sounding board, tell of personal experiences that imply hope, and do two concrete things: first, see that the patient is getting prompt, proper and thorough medical treatment, and, if there is the slightest doubt about this or about the patient receiving a favorable prognosis, the volunteer will recommend that the patient seek a multidisciplinary second opinion. A list of those institutions is available through the Cancer Hot Line 800-433-0464 or on our web site www.blochcancer.org. Second, the volunteer is to see that the patient reads this book and Fighting Cancer. The volunteer may, if he desires and thinks it wise, be in regular and frequent contact with the patient to be certain that the patient is doing what is best for himself. When I explained the Hot Line concept to a friend, he said that friends of cancer patients also need it. He had a good friend and law partner with a malignancy. The partner called and told him from the doctor's office and never returned to his law office. My friend could never bring himself to visit, because he did not know what to say or how to act. He did not see him again until the funeral. So, the Bloch Cancer Hot Line program has been expanded to include not only families of patients, but also friends. I do not profess to have any medical knowledge or ability. Everything I know about cancer is from personal experience, reading or hearing. Some of the questions I personally have heard on the Hot Line have been shocking to my untrained ears. They show the dire need for this service in every community. Could one of these comments apply to you, your friend, or your relative? "My doctor says I am malignant and to come back in six months to see how the tumor has progressed before planning treatment.'' (He went to an oncologist and is currently being treated, with a favorable prognosis.) "The plastic surgeon who is giving me chemotherapy for my lung cancer, which he says is inoperable,has told me I am dying." (He went to a multidisciplinary second opinion panel. The doctors recommended a series of different therapies. His prognosis was favorable.) The absolute coincidence of a patient telling me that he is going to be given chemotherapy by a doctor who says he won't make it - the same doctor who told me, personally, sixty days before, that he was a hematologist. He would be happy to serve on our panel if we had a case of leukemia, but he knew nothing about other types of cancer. (This patient agreed to see an oncologist.) A woman in Florida who wanted to take her husband to a cancer center, but their general-practice doctor said he would never treat him again if he went elsewhere. (This person did go to a center, has recovered and is not worrying about the doctor not treating him again.) An eighty-two-year-old individual whose surgeon wanted to do immediate lung surgery from a spot seen on an X ray. This patient had no previous X ray to compare or any consultation with an oncologist or any other doctor. (He went to a cancer center, where he was told he did not have cancer and that surgery was totally unnecessary. The spot was a result of childhood tuberculosis.) An individual whose surgeon said immediate lung surgery was necessary because of an X ray spot. There was no second opinion. The surgery was performed and was found to be totally unnecessary. The patient still had to go through the months of recuperation and expense. A well-known celebrity whose lung had been removed. The surgeon said he needed chemotherapy; the family doctor said he knew that the cancer was totally removed and that there was no need to go through the discomfort of chemotherapy. (I visited him eight months later, after he had chosen the easy way. The cancer had metastasized in the other lung with no possible treatment. He died two days later.) I could go on and on from the thousands of phone calls I have received. To me, they proved the obvious need for this type of program in every city in this country. Not only is it a tremendous psychological benefit to the patient and his friends and relatives, but it has been a factor in actually saving many lives. Supposedly, one of the most deadly cancers is that of the pancreas. We have several volunteers who have been cured of pancreas cancer. I was talking to an oncologist who listed three serious types of cancer. I asked him why he left out pancreas. His reply was he wouldn't mind having pancreas cancer today, because he thought he could beat it. A statement like this to a newly diagnosed pancreas-cancer patient cannot only make the difference between life and death but can dramatically improve the quality of life. The Cancer Hot Line is totally free. Any services or products needed must be donated. Everything is done by volunteers. We do not accept contributions, and when offered, we suggest they be made to a church or a hospital. From its inception in 1980, the Cancer Hot Line has received
calls from over 150,000 cancer patients or related parties. This does
not include the many unrecorded calls for information. We have more than
500 wonderful volunteers who are willing and ready to give of their personal
time with the sole reward being the satisfaction of having helped other
human beings. |