I have just read Lorikeet's diary, in which she talks about the trauma of recurrent cancer and asks for someone to tell her what it's like on the other side. What she's really asking is whether or not it's worth all the pain, the side-effects and the fear of going through all the chemo, radiation and illness again. It is worth it. Whatever your outcome, it's worth it.
The funny thing about cancer is that it rarely makes you sick. In fact, after fifteen years of treatment, all of it talking to other cancer survivors, I've learned that most of the time you feel like you're the picture of health. That is, until chemo. Chemo is what makes you miserable. So does radiation. My oncologist says the experience of having treatment "cancerizes" the patient, invades every aspect of that person's life.
Since cancer is just about everyone's worst fear, I want to make this diary do double-duty. I believe it would be useful to every well-meaning person who deals with a cancer patient (which, these days, is just about everyone) to be offered a brief handbook about how to deal with someone who has cancer. And I want to offer perspective about what life is like on the other side of recurrence, when you know you will never be cured, never be free of the fear of cancer, never be done with it, and you will know what shape your final end will most likely take.
Etiquette Tips for Dealing with Cancer Patients and Survivors
- Be genuine. It's okay to say, "I'm sorry. It sucks." It is not okay to run away in fear, or withdraw your friendship because subconsciously you think you might catch it.
- Don't say, "Let me know if I can do anything." It's a meaningless statement, not that you don't mean it, but your friend will never call on you. It's better to ask, "What can I do?" or to propose something specific, like "I'm making you dinner. What can you not eat?" or "How about if I vacuum for you?"
Bear in mind that some people, like me, prefer to try to keep a normal schedule and want to keep doing everything for themselves. It's a coping strategy; by controlling what they can control, the madness around them is less frightening. If they say, "Nothing, thanks," accept it, and ask again in a few weeks. Things change.
Whatever you do, don't rush in and take over. Don't swaddle the patient in sympathy and overdo it. You'll burn yourself out, and you'll be taking over control that properly belongs to the patient. You'll be making an invalid of someone who is going to have to recover and be stronger than he/she was before. That person needs to take control of both the disease and the treatment in order to make it over the long haul.
- Don't "blame the victim." In no way is it okay to ask what behaviors the person engaged in that gave them cancer. This includes smokers. It's just bad manners. And don't think it doesn't happen. I knew one person who even asked me, "What was missing in your life that you needed to have cancer to make you complete?" If I'd had the strength at that moment, I'd have decked her.
- Stay off the internet. Don't troll for miracle cures. Don't phone at 11:30 and breathlessly warn the patient away from deodorant, just because you read that underarm anti-perspirant causes breast cancer. Yes, that too happened to me.
- This is not the time to encourage a strict healthy diet of dark green vegetables and macrobiotic foods. While in chemo, keeping up the calories is important, and doing so when most foods taste like burned metal and appetite has gone off to Rio for the duration makes keeping up the calories a "by any means necessary" exercise.
Those are the major don'ts. Here are the do's:
- Do remember your friend is the same person she was before she was diagnosed. She's traumatized, yes, but essentially she has not undergone a personality transplant and does not need to be handled like a block of C-4. Stay engaged with her. You can't carry this for her, but being available, just being around, does her more good than you know. If she can't eat chocolate (and she probably can't) bring her a plant.
- Encourage your friend to do whatever he wants, as long as it's healthy behavior. Exercise is about the best thing he could do. Walking, even if he has to bundle up and toddle around the block like an old man, is a great thing. He'll get tired easily, so encourage, but don't push.
- Accept baldness, and don't show your shock. It's fine to say, "You look strangely hot," to a bald chemo patient. It's not okay to ask, "What have you done with your wig?"
- If you're religious, you can say, "I'll pray for you," as long as you don't follow it up with an exhortation to accept Jesus Christ as your personal lord and savior. Say it only once. And then do it.
- Be prepared for anger and irrationality. Also be prepared for depression. Encourage your friend to ask for help dealing with the side-effects. There are medications for nausea and depression, meditation and biofeedback help with neuropathy, etc. etc.
- Your friend may very likely become forgetful. It's called "chemo brain," and it's a real condition. Short term memory goes out the window. Sometimes it never comes back. Gentle reminders are okay. Note pads help.
- Bread pudding with heavy cream is good. Ice pops are worth their weight in gold.
- Remember: it's harder to love a cancer patient than it is to be a cancer patient. If you have cancer, you know what you have to do. It's a lot tougher to figure out how to be supportive and helpful and loving, all the while seeing in your friend the very image of your own worst fear.
So, if you happen to be the patient, practice forbearance. Your friends will need it. They will say dumb things. They will make outlandish suggestions, like "Hey, have you heard that if you eat nothing but sharkfin soup for six months, your tumors will shrink?" But they love you. Let it go.
Thoughts from the Other Side
It's back. After all the trauma of treatment and the slow recovery when, outwardly you look fine but, inside, you feel like a burned field, after all the adjustments and finally getting out from under the shadow of death, it's back. It sucks.
You're terrified, disheartened and damn tired of it. But there's no option but to deal with it.
I have lived with recurrent cancer for twelve years now. My son, my only child, was two when I was diagnosed, five when my first recurrence happened. One of my doctors told me I had a few months at best, and wanted to give me radiation to make me as comfortable as possible. I asked for chemo. He doubted it would do any good. The other doctor, the one who had treated my cancer from the beginning, agreed and started treatment that night, after I had surgery to insert an internal catheter in my chest, because my first rounds of chemo had burned up my veins.
It happened to work. In short, I had intensive chemo and a stem cell transplant, and stayed clean for 15 months. It came back again. But in those 15 months, a new treatment for breast cancer, one that happened to be targeted just for my type of breast cancer, came out. Herceptin. Usually it works for about 18 months. I've been on it for ten years, and it's still working.
Understand, though, my case is unusual. I get chemo once a week. It's extremely expensive and we're not wealthy, especially since there's nothing like cancer to destroy a career. But my husband has good insurance and, so far, they've paid a lot to keep me alive. In that time, my son, who likely would not have remembered me, has grown up and is ready to start college, and I've been there the whole time. That's the good part of the story.
The bad part is that I'm unusual. And I'm always, even as I write this, even on the sunniest day, under the shadow. Almost everyone who's been through treatment with me is already gone. I wonder why I've lived so long, why I've been so lucky. It certainly isn't justice; I've seen so many good good people die before they should have. Most of the time, I see my survival as a commission to bear witness, not in a religious sense, but a spiritual one. I have learned a few things from living with cancer. Here they are: (and, at last, Lorikeet, these are for you)
You need a good doctor, one you trust, someone who will be on call, someone who doesn't delay treatment weeks out waiting for tests. My gold standard is this: I can both hug my oncologist (and I do, every visit) and grab him by his coat lapels to make sure he's listening. Try to find somebody who sees you, you the person, not you the patient.
It's worth living every day. Every day you wake up is a victory. It doesn't matter if you feel like bronze-plated crap; when you look back, you won't remember how bad you felt, but you will remember that you were there, and you'll remember what you did. You will never have a bad day again.
Time is the only thing we really have. Possessions mean nothing, people are everything. Since we recognize that time is a finite resource, you'll never waste it on stupid mediocrities, and you'll find that impositions on your time are about the only things you won't allow.
Treatment is worth it. Keeping the cancer at bay is worth every bit of the pain, discomfort, trouble, nausea, forgetfulness, and everything else thrown in. People who stick with chemo live longer and better lives and, when we do succumb, we don't hang around long, we don't suffer endlessly, and we don't drag our loved ones to the point where our deaths are their reliefs.
There will come a point, (and, for you, Lorikeet, it will be soon), where you will dispense with fear. There is so much that is not in our control, and fear keeps us from taking control of the things we can manage. Fear kills thought. It's a waste we can't afford.
You will never go to bed with regrets. Your relationships will be clean and genuine. There are some good things that come of having cancer, even though cancer itself is an awful thing. You will take the good you can.
If you turn to God, good. If you don't, that's good, too. It's whatever works.
My plan, from the moment I was diagnosed, was this: I have tried to stay well enough long enough to take advantage of the next breakthrough. The next breakthrough is coming. Every day we're getting closer.
Finally: don't look back with regrets. Bury the past. We are no different from everybody else walking around in this world--no one knows their expiration date. The difference is that we're aware of it. We know tomorrow might not be there. It makes today sweet. Enjoy what you can. Let go of the rest.
