Granted, the average length of time for successful afatinib use is well over two years. In my case it’s become ineffective in less than nine months. But any average is made up of the good and the bad.
Last year I didn’t know I had lung cancer. Chest pain that I thought was a badminton injury. Upper back pain that I thought was a twist. Lower back pain that I thought was a slipped disc. So did the medics by the way!
It was my back surgeon who first muttered the words cancer, although lung cancer wasn’t anywhere near his thoughts. The reality was that the pain I was in then was significantly worse than I’ve felt in recent weeks. Indeed, I have since speculated how close to death I was around the time of my back surgery, prior to diagnosis.
The back surgery was a major relief, but was soon followed by the lung cancer diagnosis. For a few weeks I suffered my now infamous buttock pain. Then, after biopsy, Oncobabe prescribed afatinib. USA retail price $250 a day. One pill a day.
It has been a revelation. Zapping the buttock pain for months. Freeing me to travel and giving he the chance to get the most out of what remains of my life. Iceland, Slovenia and numerous other wonderful European trips that wouldn’t have been possible with chemo and decline.
Chile, South West USA and New England have been special too. The last minute decision to return to South West USA one I’m so pleased I made, when my earlier focus had been on seeing new places. Getting back to Grand Canyon and Death Valley and seeing them in different ways particularly memorable.
So while I’m disappointed that my body has got fed up with the drug so soon, I am immensely grateful for its existence and having it prescribed. I’ve had a ball. I have been immensely lucky to benefit from a drug that a couple of years ago simply wouldn’t have been available. I would be dead by now.
I need to adjust to osiminertinib and that starts tomorrow. I need to work through whether flying options are now gone with this treatment. But trips around northern Scotland, south west Wales and the Cornish coast may be alternatives. As well as relaxation in Anglesey. And I will look at a more relaxed schedule.
If any readers find themselves in my situation in future, I strongly recommend that if their finances allow they follow their dreams as far as they can. Death has always been inevitable. Make the most of what you’ve got left.