Life's Last Gift by Charles Garfield

Probably one of the things—and there are many—that scare us as cancer caregivers, is asking, “Can I really do this if my partner is dying?” 

Of course, we start that fear early in the process. Maybe at diagnosis, or after chemo, or after the side effects kick in, or when there is another set of tests and the prognosis is worse than we’d hoped. “What if he’s dying?” “What if she’s going to die?” and the deep fear, “What if I can’t do that?” “What if I can’t be the person who can really be present and loving, as we go through this?”

Relationships are all about intimacy: emotional, psychological, and physical, but being with someone who is dying is one of the greatest, but least desired, intimacies of any relationship. So, who is going to teach us or guide us on how to do that?

Now we have a book, a very beautiful book, that can guide us. Charles Garfield, Ph.D. has written “Life’s Last Gift” (published by Central Recovery Press) and Garfield is the honest, kind, by-your-side, kind of coach for how to be--truly be--present with your loved one, your partner, who is dying.

You know by now, here in CancerLand, that we get too much advice, too many platitudes, too much weird sympathy—most of it from folks who don’t really know the inside of this place. Charles Garfield has had lots of our experiences and he has the language and heart skill to speak to us caregivers right where we are—and right at that place we most fear: being fully present when the person we love is dying.

I highly recommend this book to cancer caregivers—everything Garfield offers in this book also applies to the day-to-day communication, self-care, and strategies of care with or without an end-of-life diagnosis. And, this book can be a deeply caring gift for your friend, colleague or parishioner who is caring for someone who is dying.

“Life’s last Gift” comes from the kind of experience most of us don’t want to have, but Charles Garfield has taken his own grief and losses to help the rest of us, as we attempt to do well what no one wants to do.

Fight Fear with Self-care

“Self-care never leads us away from our highest good; it leads us toward it.” 

--Melody Beatty

This is a lesson I have to learn over and over. So I’m sharing Melody Beatty’s quote here for you and maybe to remind me too. 

When cancer’s fear hits my first reaction is Control and then, Get Busy. I understand the dynamic. Fear cannot hit a moving target. So when we get scared we get busy, and when we get busy we get more tired and more stressed. It makes sense and is understandable. But...

in CancerLand there is so much to be afraid of: words we can’t pronounce, side effects that come and go and which can sometimes be terrifying (He stops breathing when he opens the refrigerator door—not even the freezer—just the fridge!). And the lingo of the medical establishment and copays that go up and up and up. Then of course the medical reality: people die of cancer. We know that so even though we experience so many cancers as chronic illnesses now, some are still fast to the finish line.

And for caregivers there is also the secret fear with the more chronic cancers: “Will this be my/our life forever?” “Will quarterly blood tests rule my emotions all year?”

In this Land you will be tempted to do more, move faster, read more and that means less self-care (for both patient and caregiver)—and note: medical appointments are not self-care—they are just business –as-usual in CancerLand.

I know, fighting fear with self-care seems counter-intuitive but believe me, it works.

What’s not easy is learning what true self-care is for you. Start with the standard prescription: manicure, massage, lunch with friends, a new pretty blouse. But then dig deeper. Maybe for you self-care means getting away alone for an overnight. OR maybe it means a movie marathon with someone else who loves Downton Abbey or going for a long run or doing a 5K.

Or –and this is radical—try some volunteering. (But absolutely not cancer related activities) Instead volunteer to hang an art show at a school gallery or tutor young kids or plant bulbs in a city park. Find people who don’t know you as a cancer patient or cancer caregiver (and don’t tell them). Take time to experience yourself apart from cancer.

You will be tempted—very tempted—to say, “I can’t do that, I’m needed, things are not great right now…” But it is life—and living life –that is the best self-care and the best antidote to fear.

Malignant Metaphor by Alanna Mitchell

In CancerLand we talk a lot about fear. And the fear of pain, nausea, chemo, surgery, exhaustion and the one million accompanying losses which are legitimate to a cancer diagnosis or to being a cancer caregiver.

But there is another kind of cancer fear that is widely felt though less spoken about. Alanna Mitchell names that fear and dissects it powerfully in her new book, Malignant Metaphor,

published this week by ECW Press in Toronto.

The subtitle of her book is, “confronting cancer myths”. And there are many. Mitchell was compelled to write about this after two family members had serious cancer diagnoses. She learned, as most readers here know, about the confusion and inconsistency and the struggle to get straight answers. But Mitchell also took on the surrounding trauma and stigma.

Malignant Metaphor covers the implied blame that accrues to cancer patients. The sense that cancer happens because someone didn’t do something right: you didn’t eat right, exercise right, express emotions right. She calls cancer myology an “irreconcilable trifecta of blame and anxiety.” 

She looks at the cultural beliefs that are now mostly unconscious but which, nevertheless, control and shape our thinking: “For as long as humans have written words, we have portrayed disease as an indictment of character, proof of a secret sin, or as punishment by an unseen but powerful force.”

This is a book for cancer caregivers and family, and especially for professional caregivers and students. Examining these myths and deep beliefs will help all of us to change the system of care in CancerLand.

What if Cancer Comes Back?

So much of the cancer caregiver’s role is naturally about caring for their loved one. And so, of course, there is a great deal of worry about that person. But this week a conversation with a friend brought me up short.

I was asking about her husband who has cancer and we talked about the usual—treatments and surgeries and money and family—all the parts of life that are touched by cancer. But then she said, “There’s something else”, and she looked very uncomfortable. So I waited and she said, “I’m worried about me.”

“We’re both worried that his cancer is going to come back”, she went on, “and we can talk about that, but what I can’t tell him is that I’m not sure I can do this again.”

Oh! I thought, “Oh!”

All of this talk about being a caregiver and dealing with cancer and talking about sex, and I was missing what cancer caregivers might most need to talk about: the scary shame of hating cancer, and the painful, often secret truth, that we do not want to do this again.

Part of it is that the caregiver is in a secondary role: The patient is the lead and the caregiver is the supporting actor. But also we get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over ass into the expectation that we will: roll with the punches; go with the flow; do whatever it takes, but then, when after the first round of cancer we might think (most often to ourselves) “I do not think I can do this again.” 

Part of it is the timing and the dynamic. When cancer comes the first time we really don’t know a dam thing. We read pamphlets and go to support groups but we are caught up in the rapid current of cancer and treatment. We mostly just do everything because there isn’t time not to. The pace of care and the newness and the scariness and the constant adrenaline pushes us along. 

But after a period of time, maybe a year off, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now I know, now I have a sense of this nastiness and exhaustion and fear, and in a way it’s harder because the adrenaline of shock isn’t there to help us. And because there is less help around us when cancer goes from crisis to chronic.

So I got to tell my friend that she is not alone and that I have been there and truthfully, can still go there: “Can I do it again?” I would most likely—our culture has no place for people who run out on cancer—but having that secret or that shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. And I want all of us to be able to admit that. Like the motto of the Amy Winehouse House says, “Fuck Cancer.”

What About Anxiety?

“Is pathological anxiety a medical illness, as Hippocrates and Aristotle and many modern psychopharmacologists would have it? Or is it a philosophical problem, as Plato and Spinoza and the cognitive-behavioral therapists would have it? Is it a psychological problem, a product of childhood trauma and sexual inhibition, as Freud and his acolytes once had it? Or is it a spiritual condition, as Soren Kierkegaard and his existentialist descendants claimed? Or, finally, is it—as W.H. Auden and David Riesman and Erich Fromm and Albert Camus and scores of modern commentators have declared—a cultural condition, a function of the times we live in and the structure of our society?”

Those words are from the new book, “My Age of Anxiety” by Scott Stossel, editor of The Atlantic magazine. Stossel’s highly reviewed book is both a memoir of his own crippling anxiety and a history of anxiety itself. This book is beautifully written and powerful in its blending of science, psychology, history and personal memoir.

Caregivers and cancer patients know anxiety. It begins on day one—diagnosis (or even before, when the first symptoms appear) and never ends. Doctor’s offices and infusion centers and emergency rooms and even support groups all have a surround of anxiety. Sometimes that hardest thing for a couple in CancerLand is managing their mutual anxiety. Honest sharing about fear is hard but so is the strategy of keeping one’s own fears and phobia’s to oneself.

Stossel’s book, detailing his own brutal experience with multiple phobias and overwhelming attempts to treat and manage his anxiety, is actually a help to us in CancerLand. No, not just because after reading his book we can say, “Dear God even cancer isn’t that bad”, but because –and this is the power of Stossel’s writing and truth-telling—in reading his book we absolutely know that our struggles and illnesses, of whatever kind, make us human and we are bound to each other by this kind of human suffering.

I Can See Clearly Now

“Our deepest wounds are the lens through which we see the world.”—May 1994

I sing along with the radio: “I can see clearly now, the pain is gone. I can see all obstacles in my way. All of the dark clouds have passed me by. I can see bright, bright sunshiny day.”

That is a song that can bring tears to my eyes. It’s a song about recovery and healing. I am so aware of how my own wounds distort how I see John and how I see myself in this relationship. I know that anyone would be afraid of cancer and that any caregiver fears that the person they love will get sick, sicker, or die. This is not about turning a molehill into a mountain. This is not about turning a stomach ache into cancer. It’s about cancer being cancer and being threatening. But still, but even with that, how much do I lose my --and our --good life to my very old beliefs that I will be abandoned? How much do I assume that will happen because I am not enough? How often do I set myself aside and wait for pain and grief to descend --and when they don’t I go and shake the fear tree to bring some fears so that I can have the familiar terror?

Enough already. It’s about woundedness and beliefs. I am a woman of faith and I believe in God but these beliefs are something else. Maybe this is a kind of blasphemy—I have created Gods of Woundedness that I worship and serve before my God of love. Oh God, I am ready to relinquish this belief in the false Gods and let you love me now.