For a review of Sylvia’s book of illustrated poetry, Pulse Points of a Woman’s World, see below
Visit Sylvia’s site, including a blog and email group for women with bladder cancer, BC Sisterhood
| A Tired Vagabond
When my feet grow too weary of walking
|Armor for Survival
Let me love
Let me laugh,
Sylvia L. Ramsey © 2004
I had always been very prompt about getting check-ups and visiting my gynecologist. Over the years, I had found seven lumps in my breast that were removed and were pre-cancerous tissue, so I made sure I got all the suggested tests. One summer about 10 years ago, I went for my yearly check-up and tests at my gynecologist. This time she performed a cervical smear. It came back positive so she did another test that came back negative. Shortly after that I began to have discomfort urinating and discomfort in my pelvic area. I returned to the gynecologist for another visit to find out what was wrong. Her diagnosis was a bladder infection and gave me medication for it.
I was treated for a bladder infection for a year (I had never had one in my life) when it was actually bladder cancer. Luckily, my gynecologist went out of town and the partner looked at my test results, referred me to an excellent urologist and even scheduled the appointment. My cancer was already invasive and involved the entire left side of my bladder. Once I was diagnosed, I began to do research for knowledge about this type of cancer and treatments. I found nothing that was positive and little information for women. I called the National Cancer Institute at their 800 number and they sent me a packet. It had lots of information but it was all very negative as well. I am not a negative person and I was not about to let myself be brainwashed into being one. My urologist scheduled surgery when he could get the team he wanted to work with together. He told me it would involve a radical hysterectomy, removal of the bladder and depending on if the cancer had spread anywhere else, they would decide what to do at that point.
I searched the web and found information on an Indiana Pouch that I took to him. We discussed the possibilities. He said that if the cancer had not spread to other parts of the body we could take that route. Because of my attitude and my determination to get on with my life, he came up with an idea for the "stoma" that was not in the usual location. He said I was a very positive and active person and if he could, he wanted me to have as much of a normal life style as possible. He used a short section of my small intestine with two sphincter valves and ran it up to the natural opening in my navel. That is where I use the catheter.
While I waited for surgery and after, I listened only to music that was uplifting, I watched only positive things on television and I wrote. My surgery was a success. My doctor created a temporary opening for the catheter tube while my new "bladder" healed. I wore a bag for a few months before I began "training" it. That has been almost eight years ago and I have never had an infection like many people I have interacted with online. I feel my recovery was due to my doctor’s care and his wisdom to make sure my "new equipment" was healed before it had to take over its new job. Even though I had a great doctor and he did wonders, there was no support for the emotional or the after-surgery issues that had to be faced.
When I had post-surgery tests, my doctor would go with me at first to oversee the tests because the lab personnel were unfamiliar with what to do with me and he wanted to be sure the accurate information was obtained. Later, (and still today) I have to tell lab people when I have certain tests run what to scan.
I am still amazed that today so little is known by even people in the medical field about women and bladder cancer. As I talk with women, very few are even aware of bladder cancer in women. They have no idea about the risk, the treatment or what someone who has survived bladder cancer must experience.
The emotional issues are enormous. Just like someone who has had breast cancer, self-concept is attacked. We, too, grieve for our loss and search for identity as a female. We need support from the medical field and those around us. Women need to know they can get this type of cancer, what it is, what can or cannot be done if they do and most of all, women who get this cancer need the right kind of support groups to help them through the ordeal. That was something I didn’t have but wish to change.
Over the years, I have written poetry. I wrote a lot during my recovery. My writing served as a catharsis to help me cope with the issues I faced. Now that I have a book that is due to be released November 12, 2004, I would like very much for twenty per cent to go toward education, support and research for women with bladder cancer. Because the Bladder Cancer Web Café offers the most comprehensive information source available, I want 10% of my royalties to go toward supporting it and keeping it alive and well for others who need a such a place. I am booking speaking engagements anywhere I can to get the information that is so lacking out to the public. It is time that the public and women be made aware of what is at risk and what this disease is about. I want them to know that identifying this disease is vital to their very survival. What I may do may only be a small pebble that being thrown into a large lake, but, maybe the ripples it makes will transform into waves that helps to get a program started that has been needed for a long time. I am very fortunate, I am alive and I work everyday. I feel that I have a responsibility to do my part to help others who walk the same road and inform the rest so they are knowledgeable. I can only hope that others will join my quest to get this message out and help to save lives.
Life, like a lace doily is carefully wrought with dainty touch. It is as frail as thread and as strong as rope. Author, Sylvia Ramsey reminds us of this in her book titled, Pulse Points of a Woman’s World, by doing so; the author causes us to stop for a few moments to reflect, in a world that grows increasingly crazy. The reader is forced to look at the things that really matter.
The four sections of the book are a walk through life. It includes all of life’s possible joys and fears. It is the author’s belief that living takes courage and she should know.
The author is a cancer survivor and she believes because of what she has experienced, that life is about facing your fears, considering alternatives and choosing to persevere in spite of the risk. Pulse Points permits the reader to see life through the eyes of a survivor so as to allow the reader to catch a glimpse of herself.
This book will bring readers down to earth by reminding them that it is the living of life that truly counts, not the weighty things, we sometimes deem to be important.
Sylvia’s Ramsey’s "Pulse Points of a Woman’s World" will soon be available by barnesandnoble.com, amazon.com, gohastings.com, bookcrossings.com. and other sites.
Sylvia’s poem, Armor for Survival, "…was my mantra while I coped with diagnosis, treatment and recovery." Over A Tired Vagabond, Sylvia said, "…this pretty much describes me, my misson and purpose in life."
See also: Sylvia L. Ramsey Poetry for Bladder Cancer www.sylvialramsey.com