There is a persistent sub-text in most interactions with my oncologist and radiotherapist in the UK: whatever happens, don’t get your hopes up because you’re going to die. Don’t get me wrong. They are very kind, professional, decent people who are doing all they can for me. They want to be completely straight with me about the gravity of my condition and they are confined to strict guidelines about what treatments they can recommend. They’ve never even said the ‘d’ word, but time and again the message I get is: Sophie, you’re going to die.
For example, when I was first told I had ‘incurable’ Stage 4 cancer the oncologist’s exact words were, “My main aim now is to give you a good quality of life.” Subtext: you’re going to die. Similarly, the drug I’ve been given to inhibit my tumours has a “magical effect on some patients for a certain amount of time” (a year in most cases). Subtext: and then you’ll die.
It is extremely difficult to muster a smidgeon of optimism in this depressing dialogue of fatalistic inevitability. There is a strange cultural fear of ‘false hope’ that seems to walk the corridors of terminal cancer, as if daring to defy the statistics (even in your imagination) will do you more harm than the rapidly growing cells which are eroding your organs and sapping your life force away. Even when you get good news, as I did recently, oncological caution knocks out hope the moment it steps in the ring, leaving it comatose in the corner before you even leave the consulting room.
I got my latest scan results a few days ago and they were good news. Really. All my tumours have shrunk, some significantly and even the radiologist wrote in his report that the effect of my treatment was “particularly impressive” in my lymph nodes. Get that? “Particularly impressive”!!! Yay for the treatment, yay for my lymph nodes and yay for me! Even my radiotherapist, a lovely man who serves as my primary practitioner, was surprised by the extent of shrinkage after a short period on a low dose of treatment. My husband’s and my relief and joy were about to floweth over on his carpet when he reminded us of this drug’s limited shelf life by saying, “I’ve never seen it make tumours disappear though or put a patient in remission.” Subtext: you are making progress Sophie, but you’re still going to die!
Honestly, you have to laugh. I get it ok? I AM GOING TO DIE. So now that moose is firmly on the table let’s review the facts about my latest scans:
No further spread to other organs. Liver, kidneys, colon and pancreas clear. YAY!
All other tumours have shrunk, some slightly, others significantly. DOUBLE-YAY!
Effect on lymph nodes are “particularly impressive”. MEGA-YAY!
Even as I write this I can hear their caution in my head. “It’s only temporary. You won’t go into remission. Enjoy it while it lasts, but always remember…you are going to die”. But the reality remains that three months after diagnosis I am still here. It is further than some thought I would get, including me for a while. The first chapter is written. I feel proud of myself. I keep doing little jigs down the street and saying out loud, “particularly impressive…particularly impressive…”. I am daring to get carried away on a wee ripple of excitement. I am daring to claim some real progress. Shhh. I am daring to hope.
I flew to Mexico two days after these scan results and showed them to Dr. Contreras during my first appointment at the Oasis of Hope. As the name of his hospital suggests his attitude is very different to what I have encountered at home. So when he told me he was also “very impressed” by my latest scans I immediately reminded him that no one has ever gone into remission on the drug I am taking. Subtext: I am still going to die.
“Sophie,” he replied, his eyes twinkling with possibility, “That may be so, but just remember one thing… they didn’t test this drug on you.”