Sharing Information and Support Can Bring Peace and Preparedness

When I reached the end of treatment for inflammatory breast cancer I was overjoyed. Yet that excitement soon turned to frustration. You see, in my mind, the end of treatment meant life would go back to normal. And in some ways it did. I was no longer keeping weekly appointments at the cancer center. I had hair again — that was nice. But in many ways, it felt like I was floundering.

You see, for over a year I had gone to the cancer center. I saw the same nurses and other patients that I had gotten to know over a long time. Then, as quickly as they all became a part of my life, they were gone. What had become familiar wasn't there anymore. Along with this, I had physical changes that started to appear. I had pain that was hard to explain or predict. My blood pressure would spike to unsafe levels, I had bouts of intense jaw and neck pain. This pain was on my mastectomy side. I passed out a few times. These incidents left me bouncing from appointment to appointment looking for relief and seeking answers.

I tried prescriptions for muscle relaxers and antidepressants with no relief. I had not done well with any of the medications they wanted me to try, one resulted in a hospital visit to wait on my blood pressure to go down. One day I handed a new medicine side effect list to one of my teenage daughters. I asked her to read it for me so she could notice if I had any of the side effects after I started taking it. I didn't want to read it myself in case the knowledge of what might happen would plant a seed in my mind. It seemed to me the doctors were thinking it was mostly in my mind. Her response was priceless. "Mom, if you see Bigfoot while driving down the road, please pull over and let me drive!" That medicine didn't work for me either.

About five years after my diagnosis I met a nurse supervisor for a large health system. I shared with her my story of diagnosis and treatment and my frustration with this unexplained post-treatment pain. She told me she had heard my story before. She had a patient with the same type of pain as me. All of a sudden, I felt a sense of relief. I felt an immense feeling of finally being understood. That it wasn't all in my head, because someone else experienced it too. I asked her what they found that helped and she said nothing really. But I was still relieved and excited that it wasn't just me.

Since then I have done a lot of reading about breast cancer survivors and pain. I realize that many survivors struggle with chronic pain. I also realize that had I been more prepared for what could happen, I could have handled it better when it did. Instead, I was taken by surprise and that created fear and anxiety.

Since then I have joined an online group of women who had or have the same kind of cancer I had. I have found great benefit in this. One of the biggest values I see is the sharing of information survivor to survivor.

While I don't comment often, I have benefited greatly from reading the posts. For example, I often get deep muscle spasms when I turn a certain way, like to back out of my driveway. They can be severe and painful. They appeared a couple of years after my mastectomy. When they strike in public, like in the grocery store when you reach for an item, it is hard not to wince out loud in pain. Recently a member of the group posted asking questions about a similar pain. By the end of the day women who were from one to 15 years out from a mastectomy had replied. Some of the group members had these spasms still, others had them before, but they eventually went away. Information was shared and advice given. The most important thing I saw was the person realized it was not uncommon and she didn't need to fear it. She was also given some things to ask her doctor about trying like physical therapy and massage.

While an online support group doesn't replace your doctor when you have questions, it can be a medium to share information that puts your mind at ease and may help you on your path to coping or healing.