I am a 42-year-old male, and I have glioblastoma multiforme, stage 4. My cancer was diagnosed in late October 2003, after I had a baseball-sized tumour resected from the right parietal lobe of my brain. My prognosis was 18-months to two years. I am now in my fourth year. Three weeks after surgery, I started a six-week regimen of daily radiation treatments. I tolerated the first three weeks of radiation well, but by the fourth week, I definitely began to experience a sigificant amount of fatigue. At the end of the six weeks, I was napping at least two hours a day. I also came down with Thrush, a side effect that would afflict me more than once during my subsequent chemo treatments.
At the end of January 2004, I started monthly chemo treatments, taking Temodar twice daily for five days, with a break of 21 days in between. I initially took Kytril to prevent nausea, but eventually switched to Ativan. Kytril made me so constipated that I went for days without a bowel movement. and when I was able to go, the movements were unbelievably painful. The situation became so dire that I had to have surgery to repair a bleeding fissure caused by the hard stools. I know that these details are indelicate, but I feel I should be honest about my experience.
I continued chemo treatments until October of 2006, at which point, my hematologist agreed to allow me a three month hiatus until my next MRI that December. My scans have consistently shown no significant changes since early 2004. The MRI in December was just the same, so I have been permitted to again forgo chemo until my next scan, which will occur in the next few days.
The tumour I had resected in 2003 damaged the area of my brain which controls the left side of my body. As a result, I have lost the ability to use my left hand with any precision. I used to play the piano, but I can do so no longer. I must also use a cane and walk very carefully, because often my left leg or foot fails me, causing me toI trip or fall. The radiation and chemo have had an effect on my stamina, my memory, and my cognitive abilities.
Despite these impairments and losses, I count myself blessed to still be alive, considering how few with glioblastoma survive as I have.
I hope my story will be of interest to others visiting this site. I have taken no special vitamins or supplements to survive this cancer. I have followed my doctors' directions and have made a habit of getting as much rest as I can. At times I have pushed myself to maintain a normal routine, and at other times, I have let myself spend the day in bed. I am no Lance Armstrong. I didn't run marathons before the cancer, and I don't intend to run one now. I think the essential thing is to keep on living as best as you can. Don't allow the cancer to define who you are. As much as you are able, be the person you were before you were diagnosed with glioblastoma multiforme.