Yesterday was my 12th cancerversary. Twelve years have passed since I heard those dreadful words, “It’s cancer and it has already spread.” At the time, that sounded like a death sentence, but two weeks later we learned that I have neuroendocrine cancer (NETS) which, while not curable, can be treated and usually grows more slowly than most other cancers.

One of the things that I learned early on was how important it is for patients to advocate for themselves. Last Friday proved that point. When I saw my oncologist in mid July to discuss the results of my latest CT scan which showed that a small tumour on my liver had started to grow, he referred me back to the interventional radiology specialist who did my radioembolization in March of last year. He expected that I would hear something within a couple of weeks, but when we returned from our recent trip, more than a month had passed and I’d heard nothing. On Friday morning, I called and left a message asking for confirmation that the referral had been received and, if possible, an update on what was happening. In less than half an hour, I had an appointment to see the doctor during her noon hour on Monday! I can’t help wondering how long I would have had to wait if I hadn’t called.

We actually had to wait quite awhile to see the doctor on Monday because she was tied up in a procedure that took much longer than expected. When we finally got in, she did an ultrasound and wasn’t able to find the tumour. Unfortunately, that doesn’t mean that it isn’t there. It simply means that it’s in a location that isn’t easy to see. After discussing the fact that the tumour is quite small and that I don’t have any symptoms, we decided on a tentative treatment plan, but we aren’t actually going to do anything until after my next CT scan on September 26. This battle is really a balancing act. We don’t want to treat too soon because that can limit what we might be able to do in the future, but we also don’t want to wait too long and let the tumour get too large.

After twelve years of living with this, I’ve become much more comfortable with waiting. Rather than worrying about what might or might not be happening inside me or about what the future might hold, I’m simply going to go on living my best life right now!

Image: Surya Ali Zaidan

If you would like to help, I’m still fundraising for neuroendocrine cancer research. Click here to visit my fundraising page. Although I’m nearing my $1200 goal ($100 for each of the 12 years that I’ve been fighting this disease) the campaign is still far short of what we need to fund research grants for the coming year. We could really use your help!