Gaining the Knowledge Needed.
Among the people who became aware of my lymphedema are those who tried to help. I thank them for their concern and efforts but I was very wary. A well-meaning untrained individual does not always have the knowledge base to be truly helpful, and unfortunately an ineffective or harmful suggestion can lead to a worsened situation. I had learnt from my reading that any downturn in my condition might then become the new standard. Lymphedema is progressive. Unfortunately, I did not have the knowledge base that I needed to discern if an idea was good or not.
As an example, massage therapists were one direction that I was pointed to. I didn’t know how to assess their qualifications, so I never sought their help. Other tips and recommendations came my way but again, I had questions and concerns.
The answer was to become more educated and one of the finest resources I have discovered is Canada’s Lymphedema Magazine ‘Pathways’ (Empowering patients and professionals). Eventually I found a copy of the magazine at one of my physiotherapist appointments. Pathways is published four times a year on behalf of the Canadian Lymphedema Framework and its provincial affiliates. I joined the Alberta Lymphedema Association and began reading my own Pathways magazine. It was one of the smartest things I have done. Within the pages, I found practical tips, solid information and more than enough facts to figure out the help from the hype.
Notes from Pathways Fall 2012 – ‘the majority of massage therapy graduates across Canada do not receive enough education to be qualified to treat lymphedema patients.’ Having said that, the same article outlines what training is required and how massage therapists have been pioneers in lymphedema care. It’s good to know.
Massage therapists who have been trained with the original Dr. Vodder method of Manual Lymph Drainage and Combined Decongestive Therapy for Edema management have a lymphedema specific knowledge that other massage therapists may not.
Surviving isn’t the only thing.
While I was busy dealing with my new diagnosis of lymphedema I found that many around me were still hung up with my cancer story. Wasn’t I glad to have survived? It’s a prevailing train of thought around cancer survival. As though the mere fact of being alive is the only thing that matters. This is true. I’m glad to be alive and I am a cancer survivor. But this is also false. I am alive, but I am also altered by cancer. I can no longer assume that cancer will happen to someone else. I cannot assume that I will live as long as the average person. But for many people I now bear the label of cancer patient. People treat me different when and if they know I’ve had cancer. So let me set the record straight.
I’m not a cancer information resource. I do not need to know of every new diagnosis of cancer in the community. I don’t have all the answers about cancer, I cannot even tell you with absolute certainty why I became a cancer patient.
In a perfect world I would put cancer behind me, and just get on with it. I would walk anonymously as I went about my day. I could do that, but lymphedema changed that.
I have chosen to manage my lymphedema by being compliant and wearing the compression garments. My garments attract attention and questions. People stare. People poke at my arm. People go out of their way to make jokes, expecting me to respond with a funny story.
I would love to have the words that turn this aside. The best I option I have found is to say ‘This is not an injury. I am dealing with a condition.’ Sometimes I will add a condition of the lymphatic system.
Sometimes I turn the joke back on them, and while that often is the best way to deal with this, I am left to undo the damage that has done to my day. None of this is easy or pleasant to do. I do not want to be a curiosity. I do not want to be reminded of my problems. I certainly don’t want to be explaining lymphedema to everyone who knows nothing of it. I don’t want to be teaching manners. I don’t want to be rude myself.
It takes the Wisdom of Solomon to figure out what answer is appropriate to the situation. I could refuse to talk about it entirely. However there are golden moments as well. I’ve been approached by a lymphedema patient (who wasn’t wearing the tell-tale garments) and I was able to share my pain management successes including weight lifting exercises. Another patient was thrilled to hear about the silicone grip band that kept my sleeve in place. I responded one time by calling my lymphedema and the trademark garments ‘a souvenir of my cancer treatments’. I quickly found that I touched a troubled heart that had just received a diagnosis of cancer.
“It’ll be your job for a while, but you’ll be fine.” I said, just as someone else had said to me about my cancer.
“Let me say this to you about your lymphedema. You’ll learn to manage what you can and to accept the rest. It’ll be okay.”