In 2001, after my brother-in-law was diagnosed with a rare brain cancer, I had found a lump beside my breast. After a few weeks and the lump did not get any better, I was sent to a female surgeon to have a biopsy of the lump. When I got to her office, she asked me how long I had the big hands and big lips and wanted to know my shoe size. I was very taken back by these questions and asked why she would be asking about them. She told me she thought I had a rare condition known as acromegaly and that she was sending me for a blood test. It took approximately six to eight weeks to get the blood work back. I was then sent to a local endocrinologist and so began the change in my life.
As I sat in the doctor’s office, she explained to me that the tumour in my head needed to be removed the following week. I felt very distressed about what would happen to me. The next few weeks would certainly prove to be even more stressful and confusing than it was that day in the first doctor’s office.
I prepared and travelled to Halifax to have the tumour removed. Once in Halifax, I went through the pre-op clinic testing, which took two days. It was the night before my operation when I received some news that would devastate me the most; the surgeon explained to me that the tumour was inoperable because of its location. I felt this fear come over me that I would surely die from this condition.
I spent months, which seemed like years, trying to understand this condition. I felt so alone and trapped in the feelings about what was happening to me and certainly the fear of what was going to happen. I received radiation treatment in 2003 and have been on medication since 2005. My hormone levels are now at a manageable rate but I certainly have my challenges with acromegaly.
Several times at the clinic, I would stress to the nurse (one of our clinic “angels”) that we needed some sort of support in place for people with this condition. I felt so alone and confused about the tumour and I believed that I was the only one who could understand what was happening to me. My understanding and outlook would certainly change the day I met another person with acromegaly. As the clinic nurse, my husband and I talked and joked about some of the side effects of this condition, I did not feel alone any more. Not that I did not have my family’s support around me, because I did, especially from my husband, Kenny, but it would be more reassuring talking to someone else who also had this condition. Then I would be alright. I was determined more than ever to gather some people with acromegaly so we could support each other—together.
It was June 2005 when we held the first acromegaly support meeting in the conference room of the Endocrinology Clinic in Halifax, Nova Scotia. We had a very successful meeting. We had twelve acromegaly patients, along with two clinic nurses and the endocrinologist. The feeling in the meeting was one of relief; to finally see other people and hear their stories of being diagnosed and the way it affects their lives. It was awesome. We met again in the fall of 2005 and agreed to meet at least twice per year. We set up a phone list for each of us to phone when we needed support. On April 20, 2006, we successfully formed The Atlantic Acromegaly Support Group. To the clinic nurses, thank you for helping me reach my goal of putting a face on acromegaly. To the patients who have been at the meetings thus far and for those who will take the time to come in the future—thank you. Thank you for helping me understand this condition and teaching me how to cope with it. I will be eternally grateful.