If you’d told me in March 2019 that I wouldn’t write another blog on “arthritis and me” until 2020, I would have laughed and said you didn’t know me!
I had started two new drafts. They will be finished one day, but first I have to write about breast cancer and get that off my chest – excuse the intended pun.
“Breast cancer and me”? I mean…. that happens to others. People who are already managing chronic disorders don’t get cancer as well. Or do they?
Well yes, it seems that they do. In that sense people with chronic disorders aren’t different from anybody else. Nevertheless, most of my friends were very shocked and found it rather unfair and that I had already had my share of health issues in the last few years.
Today, looking back from these first days of 2020, I feel that apart from the fact of not being able to write any blogs or do much beyond managing the daily essentials for several months, 2019 was not such a bad year.
The year didn’t start so well and that already blocked my ability to write. In July I went for a regular Mammography as is recommended every 2-3 years for women of my age. A couple of days later the phone rang and to my surprise I was asked to come into hospital for a check. “It’s probably just a shadow,” the woman on the phone said. “It’s usually nothing. But to make sure, you should come in.” Another couple of days later I was under the ultrasound and then it seemed like endless samples were taken for biopsy using a sort of pressure gun that was held against my breast and took tiny bits of tissue. Very uncomfortable
I was asked whether I wanted the results by letter or phone. It seemed logical to get the information as soon as possible, so I opted for a phone call. This came in the early evening two days later. The doctor who had taken the samples rang me. “Good evening, Ms Safford”, she said. “Unfortunately….“ and after that I understood almost nothing. My reptilian brain, the Amygdala took over. Flight or Fight. My cognitive abilities were gone. I have since learnt from others that this is normal. It’s the shock.
A week or two later the exact diagnosis was explained to me. Luckily, I took a friend to the hospital with me, because despite my efforts to listen, I was still unable to take the information in. My friend took notes and then explained to me, I understood that the cancer had not spread. Treatment would be surgery and radiology over several weeks, but no chemotherapy. Most importantly, I would not die and could fully expect to be cured.
Surgery and radiotherapy went as planned. It was a strange experience having a disease that is considered so serious and generates so much fear, yet my own diagnosis was positive. That meant that my own feelings were that this breast cancer was much less important than the arthritis and intestinal problems that I had experienced daily for years, and for which there are no cures.
The hardest part of the story came after surgery. My doctors recommended that I should stop the medication for the arthritis and bowel disease, which has completely transformed my life in the last 4 years by enormously reducing the pain, inflammation and tiredness. See my post How it all started for the story of my amazing improvement . The drugs are called TNF-alpha blockers, because they block messengers in my immune system called TNF-alpha, which are thought to be malfunctioning, and are causing my illnesses.
However, it is believed that TNF-alpha normally plays an important role in the immune system by fending off cancer and destroying potential tumours. TNF stands for Tumour Necrosis Factor. So obviously, someone already diagnosed with cancer, will be recommended not to take this medication. That advice initially really devastated me, but then it sent me on an important journey to pursue my needs as a patient and not just to follow doctor’s orders. I write about that journey in the next blog… coming soon.