August 8, 2011

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?


23 comments:

katherine schizkoske said...

Doug, this piece is exceptionally well expressed. Even the closest of your friends and family are confronted with their "own" mortality every day they are with you and during every conversation.

There will be those who have faced their own mortality and will be comfortable - whether you are having a screaming mad day or a "good (whatever good is to you at the moment) day. You will be comfortable in their presence and they in your space. They may be willing to be with you in "silence" which could be welcome since the effort to talk is often burdensome.

Thank you for speaking your truth as often reality becomes shrouded - as if secretive. I can appreciate also, your efforts to "normalize" this process as in making the days count - this may change and your "Maddening" may change to another form of intense emotion.

Wondering if you could/would write a bit about fear - at this stage.

Sincerely,

Katherine Schizkoske
@calico_kate on Twitter

Anonymous said...

You're right - talk is the only kind thing for all, however terrifying it can seem. Thank you so much for modeling how to do it! This Comment is going to be long & therefore submitted in parts. I hope that’s okay: I’m about to tell a story about the opposite of talking. This is Part One.

I recently had the traumatic experience of losing a beloved sister-in-law to cancer without a single word being shared. WE DIDN'T EVEN KNOW SHE HAD CANCER, OR EVEN THAT SHE WAS ILL. They lived far enough away that her final personal visit came & went & the phone just seemed natural, even when we didn't know we'd HAD our final visit. This suddenly-seen-for-what-it-is last visit is the experience suffered by those who lose loved-ones to abrupt accidents. To have to suffer it when there were alternatives, is awful.

The phone is an easy way to avoid & conceal. Just as painful was that her spouse also concealed - feeling he had to back her up though he didn't agree with her choice. However much I know it was his place to choose & he had to be there with her, his choice to back up her silence also hurt a lot.

Anonymous said...

This is Part 2....

They lived in the U.S., where there is no public healthcare. While she ran through all available money (much like your Group) on alternative healing, she never once darkened a physician's door. No chemo, no radiation, no MRI's, no official diagnoses, NO PAIN MEDS. This reflected sad personal history we'd never heard & didn't learn about until after her death. As a child, we learned, she’d been molested by her pediatrician. All her life she had been fighting that trauma, we realized - without ever admitting to it directly. That, too, as key as it was to her existence, we had to learn from her husband, after her death.... How we ached for her, and for the person we only would have understood better & supported had we known! Her husband too, like us, was left a sad, angry person. What is life for, if not to talk about the hard stuff sometimes? That's not ALL life is, or will be. So please - talk. "A burdened shared is a burden lifted". It’s actually mysteriously true.

We found out my sister-in-law had terminal cancer 30 hours before she died. The pain & shock of this experience is still fresh when I write it. We’re a large family & there isn't one of us who didn't feel betrayed. At the same time, with time, we had to accept her choice. For us, it seemed a terrible choice. She died essentially alone except for her husband, at home until those last hours, without anything for pain. He had to wear earplugs against her moaning so he could sleep & still get to work, as they badly needed the money. Then he came home from work one day to find her collapsed. He called the ambulance. The hospital said she would die shortly. Now she was unconscious, he finally let us in on the ‘secret’. She was sent to hospice. He reported he had never encountered such blessed comfort & kindness during this whole experience as he did there. That poor man.

The toxic silence didn't end there though. She died without having made a will. He has been saddled with a dizzying array of problems - can he alone sell their too-large house now, or not? Is he responsible in perpetuity for her elderly mother, or can he find a nursing home & then move away from a place of memories he now admits he detests? Did his wife misappropriate her mother's funds, seeking expensive alternative treatments with them, and if so is he legally culpable somehow? He is bleeding lawyer's fees over all this. And then - what should he do with all her things? His head is spinning every day. Even as he also has to work – he has no paid bereavement leave. People, take care of the wills, the arrangements; listen to how caringly Doug considers all his responsibilities to those he loves!

Anonymous said...

This is Part 3...

We still can't fathom the secret pain or terror that would cause anyone to put themselves through such loneliness & agony, nor to leave one's large loving family feeling both bereft & betrayed. Some of us have shared how we now second-guess every remembered interaction. Perhaps nothing said was meant. Perhaps everything was just a front. In those last phone conversations - 2 years of them, almost - I noticed my sister-in-law busily trying to heal ME of things she imagined I suffered from; this hurt - I just wanted to be real together. At the same time, I felt her becoming less & less intimate, more & more remote. For 2 years I thought this was my fault - something I'd inadvertently said or done. Only when I received news she was comatose & dying of metastatic cancer was I able to retroactively understand what had REALLY been going on. She had been hiding; and trying to project healing onto someone else. At the same time, she wanted to be the healer. Sometimes, as you say Doug, we can't be the strong one. We can't be the healer. We can only be the sick person. As you also say, admitting this can be a huge step forward - NOT back.

I feel terrible writing this. Not for myself, but because even now, I feel as if I am 'betraying' her. Isn't that ironic? Yet it's true! Strange how, as family members, our first instinct, however wrong it feels, is to prop up the sicker person's disorientation.... Learn from this, please: DON’T enable the silence!

So I write this anyway, in case it may help even one other reluctant person open up those 'hard' talks and 'face the fears'. It ISN'T easy. But here's Doug, showing us how to do it. He's proof it can be done. Please listen. The pain caused by not talking is truly shocking, and it resonates for the rest of the lives of those left behind.

Anonymous said...

This is Part 4 (I think you'll have to skip down to get to Part 1 - 3!)

My greatest grief is that by dying in this way, my sister-in-law seemed to be showing that she had always ultimately believed herself to be alone. Even as we were right there, and would have been discreet, supportive, and not bossy or denying (as a family we come from medical & pastoral backgrounds, & know better), she was so convinced of being alone that she shut us out completely. Perhaps she thought it was brave, or kind. Perhaps she was embarrassed that she couldn’t ‘heal herself’. Such painful nonsense.

If you're thinking this way, please know that it is understandable perhaps, but you are wrong. You are not alone. Silence is neither brave nor kind. You’ not somehow guilty because you are ill or have a loved-one who is. And even the stranger beside you can turn out to be a best friend you haven't risked getting to know yet. As long as we're here, there's still time to talk, to make the choice to connect with others, as Doug & Dianne are doing. It may not go perfectly. If you haven't practiced much, talking might, yes, take some scary false starts perhaps. But do it anyway! Unless you never start, you can’t succeed, & even attempts that feel as if they’ve failed can feel strangely better than never having tried at all.
The one thing I take comfort from is that during my sister-in-law’s final visit, having begun to experience even then her subtle withdrawal during phone calls, I apologized calmly & directly to her for anything I may have said or done which might have caused her hurt or distress. I said that I loved her & would never knowingly hurt her. She accepted my apology without much comment, but I felt better for having made it, & I now know that while she might have replied with the deep important stuff on her mind, she didn’t. I guess it's because she couldn't trust somehow. Please notice however, that if she had spoken, she would not actually have been in any danger. I would have held her confidence as sacred.

This is the story of an epic tragedy of sorts. I would wish for others the opportunity NOT to have to live their own version of it. So once again, please - listen to Doug & talk, & plan. The alternatives are just too sad & painful - and, yes, even cruel - to all involved.

Shalom.

katherine schizkoske said...

Just wondering why it is....that we seem to have the compulsion to reveal our own stories at a time when Doug needs us to "listen" - only.

Katherine
aka @calico_kate on Twitter

Lori Hope said...

Thank you for a beautifully written and enlightening piece. You are so gifted, and I love that you share your gifts so freely. I hope I didn't seem to be denying what you are going through by taking issue with your prognosis. It's not that I think you should deny it, but I guess I've heard too many stories of people outliving their prognoses to believe docs. That doesn't mean death won't come - it's just hard to predict a due date.
Sending much love and gratitude to you,
Lor

Doug said...

Hi Lori. Thanks again for your kind words. I hope you don't think that this post was directed at you. There are those who understand doctors and prognosis estimates and those who don't. I take issue with those who don't make an effort to understand and use these comments to minimize my situation (mine and others) in order to avoid all the unpleasantness. Personally, I take into account how I feel and how well I know my own body and my own disease. I am very optimistic that I will outlive my doctor's estimate but there are days when I'm just not so sure. Regardless, I am dealing with it in advance while making the most of every day I have. If I outlive my prognosis, I will have that much more time to spend with my family, to enjoy life and to write.
That is my hope and much of that hope comes from people like you who I know understand.
Lots of love.
Doug

Anonymous said...

Apologies to you Doug & others for in any way 'co-opting' your blog with that long story. I intended support for your POV & the blog's larger audience(where experiences will vary) but it's utterly true that most of all, the story is yours.... you're very brave & generous with it. As Oprah likes to say, 'Your story will touch so many people out there who have felt alone - Thank you for sharing!'

Anonymous said...

Thank you Anonymus for shearing your story.

Doug said...
This comment has been removed by the author.
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