What's in a Name?

What's in a name? Sometimes a lot. When you're dying, the terminology you use can make a big difference in how people understand your situation, how they treat you and even how they feel inside themselves.
With cancer, it can be even more confusing. Some people automatically think that cancer is a death sentence, particularly if they have had several cancer deaths close to them. In that case whether its "terminal" or not, they figure you are going to die some time. At the very least, they are not surprised when they hear that you are now terminal. With so many people surviving cancer, others figure that you're probably going to live and even if they are told that it has metastasized and can't be cured, they don't really think you're going to die. I recently had a relative say to me, "Ha! They've been saying you're going to die for so long now.... you'll be just fine!". I was so shocked, I didn't know what to say to her.
When my cancer first recurred, I had one chance to stop it with what is called "salvage radiation" (another nice expression). When it was clear that didn't work, I started telling people that my cancer was now "incurable". But with no real time frame to go on, it seemed a long way off and I think that most people thought I would still be okay. And, yes, some people made a point of telling me that. Even when my cancer metasasized, people didn't suddenly look at me like I was going to drop dead. It was just more of the same. I don't know why this is, but perhaps our fear and lack of knowledge of cancer causes us to "park" the idea that the person is going to die until they are on their death bed or they get an invitation to the funeral. It wasn't until my oncologist gave me an actual timeline of 12-18 months that people seemed to understand that this was really happening. It was then that I started to use the term "terminal", which seemed to have a bigger impact. But even then, there were a few who felt it necessary to point out examples of people who lived way past their initial time frame. And while I know that they meant well - trying to give me hope - it seemed that they believed it would be the same with me. So I have to wonder when it is that people finally come to terms with the fact that someone is going to die so that they can both deal with it. For some, calling it "terminal" rather than "incurable" seemed to make a difference. For others, hearing a specific time frame made it real. The point is that knowing and accepting that someone is really going to die allows us to talk about it, come to terms with it, and to begin the important step of beginning to mourn the impending loss of a friend or loved one.
Another term I have some difficulty with is "survivor". Those who study these things tell us that we join the ranks of survivors as soon as we are diagnosed (usually with cancer). Generally, people think of surviving as having "beat" the cancer. While it is good to think that it's gone for good (which it is in many cases), it tends to ignore the fear that all cancer patients have of a recurrence, a fear that can have deep psychological effects on the survivor. In my case, I happily accepted the mantle of survivor after my initial treatment, but once it recurred, and particularly when it metastasized, I never felt comfortable with the word. I was not going to survive this disease and I knew it, so I didn't feel comfortable being introduced as a survivor. Perhaps others take comfort in the term because it represents the hope of a victory over death. For sure, people generally don't want to think about death or the often horrendous things we must endure to become "survivors". I no longer want to be called a survivor. I feel like a fraud walking in the Survivors Lap at the Cancer Society's annual Relay for Life, although I do it to support others who have truly survived.
It's interesting to note that even some metastatic cancer patients with zero chance of cure, still think they had a chance (52% in one study - see link to the right). Is it hope? Denial? Whatever it is, it's important for medical staff and family to know both what the reality is and what the patient is thinking.
My key premise in writing this blog is that it is important to think and talk about death. This goes for everyone, but particularly for those who know they are close to the end. In no way should this be the only topic of conversation with friends and family - it's important to focus on getting the most out of every minute we have left - but IMHO it is essential for anyone in this situation to talk it through and deal with any fears, regrets or unresolved issues so they can go in peace. It is equally important that those close to you know what is happening to you, how you want to be treated now, and any directions you have for end of life arrangements. It is wrong to avoid the subject. If everybody did that, then there would be no one for the dying person to talk to about one of the most important events of their life. You can't hide an elephant of this size in the room. You may think you are protecting them, but you may in fact be robbing them of something very important.
So to summarize, if you know someone who is "dying", or is "going to die", or is "incurable", or is "terminal", you need to make sure you know what's really happening, accept it and be prepared to talk about it, no matter how uncomfortable it is for you. It's always better to be open and honest. Be the friend they need and show them the love and respect they deserve.
Shoot the damn elephant!
Don't we owe them that much?