I am of the opinion that my life belongs to the whole community. -- George Bernard Shaw

Loved Ones (and others)

This is about the circle of people just outside the person right beside you, the caregiver. The caregiver has a whole different role, which is addressed here. Beyond the walls of our home was the whole rest of the world. It is your right to manage how public your news does or doesn't become. When people find out you have cancer, most very much want to know what to do or say but they often don’t. There are no answers that fit for everyone. I’m going to list the good things people did for me and the things that weren’t so good. This is just my list. Some other cancer patient may disagree. But I present my list in case it helps. None of us knows the “right” thing to do. But, I think most of us want to do the best possible thing. We have to forgive each other constantly.

You may notice here that I never mention any kind of cancer support group. I didn’t want to join one, so I didn’t. If you like groups and find one that helps, that’s good. I have never liked formalized groups and have had more than one bad experience with them. When I lived abroad I belonged to a so-called support group for “foreign wives,” and I still can’t talk about it without ending in tears. So, I wasn’t about to compound a bad situation when I got cancer. I did find a site online that I suppose functioned as a kind of group, called
Daily Strength, and it helped me immensely to read the journal of another endometrial stage 4. Perhaps the internet version of a support group was easier than the face-to-face kind because I could lurk rather than join. But that’s just me. You have to decide what’s you.


Love Thy Neighbors
We had only been living in our house for two years when I got my diagnosis, yet the neighbors on all sides rushed in to help. They brought food, flowers and support. One of them came over and sat with me when my husband’s orchestra had an evening rehearsal and I was still newly home from surgery. Later, during my chemo, he inconveniently had a colonoscopy scheduled and I couldn’t drive him, so a neighbor took him to it and brought him home after she’d, as she put it, “signed for him”.

The neighbor across the street is a mad hot crocheter. She’s always working on a project. What I didn’t know about was the project she got to work on as soon as I told her about my diagnosis. The night before my surgery, she rang the doorbell and presented me with a beautiful crocheted shawl for sitting up in bed. She’d brought it to what she cals her Woo-Woo Group (a bunch of girlfriends who meet regularly for dinner and liked to talk about such things) and they all sat around it in a circle and put their energies into it to help me heal. I couldn’t have been more moved. I took it to the hospital with me and used it in the bed there. And what do you know, I
am healed. Looks like it worked. Later, another lovely hand crocheted shawl showed up from a friend on the east coast.  Now I have two, one red and one blue.

This same neighbor made a hat for me to wear when the chemo would take my hair. I began chemo in the month of February, and a month later she had made me second, fuzzier and softer hat. I thought she’d miscalculated, that spring was coming soon and that such a warm hat wouldn’t be needed. But it was a chilly, late spring that year and I wore that second hat every morning when I first got up because my by-then-completely-bald head was cold in the mornings! Though I have since given away most of the scarves and other hats that I lived in that year, I kept that second one the neighbor had made me with her right on instinct.

Rock Your Specialty
Three months before I got my diagnosis, I was laid off. Yep, it was a banner year! My erstwhile employer had paid for an outplacement package with a company that does that sort of thing, and the woman assigned to me helped me brush up my resume and started me on some interviews with people she knew, until we were so rudely interrupted. When I told her about my diagnosis, she stopped the clock and told me I could pick up whenever I was ready again after treatment. Once I finished treatment, job hunting seemed long ago and far away, and I needed some time to slowly regain my health both physically and mentally. She took me out for coffee, told me how wonderfully arty my very short, post-chemo hairdo looked, and said that even when the package my former employer had paid for eventually did run out, she was going to help me look for a job in any way she could. I was really moved and very grateful. Sometimes someone is in a position to offer something very specific that really will help you, and they do.

The Gift of Normal
One of the most welcome things you can do is just act normal around the patient. Normal is a precious commodity that feels like it will never come again when you’ve been diagnosed with cancer. Little tastes of it wherever you can get it are delicious, indeed. We have friends who invite us over every New Year’s for crab. (It’s a Pacific Northwest thing.) My diagnosis came in December, but weeks later they had us over for the usual crab fest. Talks in the kitchen while the water boiled, the dog swirling around our legs, an evening of normal. It can be the best gift ever.

Chow Duty
It’s an oldie but a goodie: covered dishes of food are always welcome. A cancer diagnosis is an emergency, and all your plans and schedules get thrown up in the air. It helps a great deal to have food ready when you can’t always cook. One friend made a stack of quiches and put them in the freezer. Soups, casseroles and platters arrived all the time. My sister on the opposite coast also gave us a monthly fruit subscription to Harry & David for Christmas, so that we’d have fresh fruit regularly. All of it was appreciated.

Can you help with driving? There is plenty of driving with a cancer diagnosis. A million doctor visits, stuff to pick up from the pharmacy, people to pick up from the airport, take-out food because the shopping and meal schedules are blown to smithereens…add your own examples here.

Now More Than Ever
I knew about reiki but the first time I had it was when someone thought to buy me a treatment while I was in chemo. Likewise, it was the most luxurious, loving and appropriate gift when a friend paid for a reflexology treatment for me. I had always meant to try it and I really appreciated the pampering. She made the arrangements and told me all I had to do was call a number and schedule it. It was WONDERFUL. If you know someone with cancer and you know of some kind of soothing treatment or massage or day at the spa that will not conflict with their particular situation or treatment, buy them a session.

Maybe buy their caretaker a session, too. During my very first chemo treatment, a group of students from a nearby massage school showed up and fanned out across the room offering massages while you sat in the chair. They were careful to ask about ports and other delicate areas, they would just do your feet or hands alone if that was all you could manage. When the big, burly guy who gave me a great shoulder massage was finished with me, he stepped over to my husband and began on him. This still makes me tear up when I think about it. My husband had spread out on a table near me with his laptop and was carrying on with work while I got infused. But here was someone acknowledging that this was also very much happening to him.

Forgive Silence
When I got my diagnosis, I could only contact so many people by phone or in person. Everybody else I wanted to tell then got a group email from me with the news and an outline of the treatment that would be coming up. I apologized up front for the fact that while I loved hearing from them, I might not always be in condition – or frankly in the mood – to respond. It’s not as reciprocal as I’d like to be in my relationships. But I hoped folks would understand. There were times when living through it took everything, and I just didn’t want to have to talk about it as well. There were times when I was fine talking about it. I really appreciated those who understood this.

Pass the Torch
Barbara Hammer is an award winning independent filmmaker, an author, and an ovarian cancer "thriver rather than survivor." She's had retrospectives at the Museum of Modern Art in New York and the Tate Modern in London, among other places. Through the auspicious fruiting of karma, she is also the aunt of the husband of the first friend I made after moving to Portland. So when she came through town for a showing of
her film about her cancer treatment and recovery, she took an afternoon to sit on a couch with me and give me a pep talk. I was right in the baldest part of my journey, desperate to hear any advice from someone who was years out, and she leaned over and mimed placing a torch in my hand -- the torch of getting through this to the other side. Do you have access to someone with torch credentials? Loan them out.


With so many people being wonderful like this, it sounds ungrateful to go on to list the Don’ts. But a person with a cancer diagnosis has enough to deal with without having to cut people slack when they say or do hurtful things. So, here’s what to think about.

Thank You for Not Sharing
Don’t share your horror stories of other people who had cancer, especially if they died of it. Don’t even share current stories of people you know (but I don’t) who are currently going through it. When outcomes are unknown, there is no comfort in hearing about other cases. The person dealing with their own case has quite enough to occupy their thoughts. People thought I wanted to hear about others, in all the gory details, and I did not. I really did not. I did not care if the other friend you know is showing great courage and a positive attitude. I found it all tremendously threatening. I walked through the halls of the cancer center every week and saw and got to know plenty of other people who had cancer. I cruised the internet and lurked (and sometimes participated) on web sites and various patient boards. Believe me, I am well aware of everybody else out there. But I do these things when I can find the zone to deal with it. I don’t want to get an email from you detailing an acquaintance’s experiences. UNLESS. Unless they have survived it some time back and come through the other side. Then you can share away.

Don’t Ask What Stage
What if it’s stage 4? Are you ready for the answer? Do you care how it makes the patient feel to have to tell you it? Because I can tell you: I was a stage 4. And I was terrified. I just hated it when people asked me what stage I was. Surprised, too, since in all my life I’d never asked someone else that. And I had a couple of close friends who had cancer well before I did. Although I eventually realized I didn’t have to answer the question, it was very unpleasant to get to that place via the experience of being asked by people bluntly and to my face. (By the way, if you are stage 4 and are reading this, here is what I learned about how to face down your staging.) If it’s a low stage, then the patient will probably share that with you. We love to give out any details that support our case. But if the patient doesn’t offer, don’t pry. Even some stage 1 people feel positively and completely freaked out to just have any cancer at all, and can you blame them? Don’t ask. Because, unless you are a partner or close family member, it’s actually none of your business.

Never Say Die
Don’t refer to death, either jokingly or sincerely. The newly diagnosed cancer patient is out on the edge of their own terror about this. I myself couldn’t even stand the word when I saw it in writing, no matter the context. Amazingly, someone wrote me an email saying her workplace wanted to make some plans for the following year and she had told them she didn’t even know if she was going to be alive next year. Now, she had no disease or other specific reason to think this, and I thought it was gosh darned insensitive to write such a thing to me. Did she think it was humorous? To me?! Did she think it made us comrades? Not unless or until she gets cancer, too.

You Think You’ve Got Problems
Don’t detail your own health problems. Believe it or not, people did this to me all the time. They went on and on about some doctor’s visit or procedure they had to endure…as if we were in the same boat? Whatever you have, it isn’t cancer. Right? And detailing your own problems not only annoyed me plenty, it often scared me. I had to go through unpleasant procedures of my own; it jacked up my anxiety to hear about anyone else’s.

Ask if It’s a Good Time
Always preface an offer to visit with a sincere question of whether or not this is a good time. My first chemo entailed a very severe intestinal reaction that not only had me physically challenged, it made it impossible for me to keep from running to the bathroom. The cancer experience will strip you of plenty of dignity, but you should get to keep some of it. You don’t want to be dealing with an intestinal thing with guests present. Some days you don’t want to go out with your bald head and no eyebrows, even if you are OK with it every other day. Sometimes you just don’t feel like putting on your personality along with your head scarf. Then again, sometimes you do. If it’s hard for you to know how and when to do what, imagine how it is for the patient. Harder, I’m guessing.

I Hope You’re Sitting Down
I hate cell phones, so there’s my bias right there and here comes my rant about them. I understand what they’re good for, quick updates, emergencies, etc., and I use one for those things myself. But what they’re not good for is talking. The quality is so shockingly bad (and why is that?), that any conversation has to stop and start around the constant “What?” and “I didn’t hear you”. If a person is lying in bed feeling whipped by chemo, you are not doing them a favor by calling to show your concern for them while you walk around the garden or in and out of the kitchen, crackling and fading and dropping off the connection altogether. Don’t get me started on those who talk on the phone while driving a car. How flattering that you frankly and openly multi-task while talking to me, so that the call isn’t a complete waste of your valuable time. If you want to show real concern for the cancer patient you are calling, sit the hell down and stay put in a place with good reception for the duration of the call to raise the quality just that smidge, please. Are you really so busy and important that you can’t do that? Attention is the rarest and purest form of generosity (Simone Weil).

To cancer patients themselves, here was the advantage of having a land line in our house. Some days I could deal with people, some days I couldn’t. So, my husband picked it up most of the time and effectively screened calls by telling people he thought I was asleep but he’d check to make sure. Then he’d come and ask me if I wanted to talk and if I did I would take it, and if I was not feeling strong enough he’d go back and tell the caller that I was indeed asleep. Maybe I’m old fashioned (well, when it comes to phones I certainly am!), but I think this was more polite and gracious all around than having my own private cell that I didn’t answer when I didn’t feel like it. The reason is that my husband knew all the people calling me, and he could then go on to chat with them about the situation, giving them some kind of feedback to show how much their call was appreciated and to answer their concerns while protecting me when I needed it. Heck, they could even ask him how
he was doing in all this, something that made me so happy whenever anyone thought of it. Plus, nobody calling our “family phone” land line had to put up (from our end, anyway) with the ordeal of a so-called conversation over equipment that sounded like two tin cans and a string.

I’m So Happy for You (Not)
It should go without saying the following, but a few people didn’t seem to know it. If you are lucky enough to be in hale and hearty good health, do not offer your opinion that it is because you exercise, eat right and/or go to church every Sunday. Whether you think you have earned your good luck, or whether you think God just likes you best, it is astonishing that you would say so to someone who has gotten a diagnosis. It would be nice to think that “you can do things” to “prevent cancer”. Magazines love to put this kind of thing on their covers (I’m looking at you, AARP). Whatever the risk factors for all the very different cancers out there, no one really knows why half of the population gets it. It may rivet you to know I was something of a health nut myself when it came to diet and exercise, never did drugs, didn’t smoke and was if anything far too straight and narrow, looking back. "You see, cancer doesn’t discriminate," said Kareem Abdul-Jabar after leukemia. "It doesn’t care how many NBA titles you’ve won or how much yoga you do."

If you are lucky, be grateful. But don’t compound another person’s pain by bragging about it. I always wondered if the people I heard doing this (either directly to me or within my earshot) were tempting fate, enjoyed kicking someone who was already down, or were just plain stupid. I usually settled on the latter.

Do you know that “One-tenth of men and one-fifth of women with lung cancer have never been smokers, and in some parts of the country — Northern California, for example — as many as 35 percent of women with lung cancer never smoked or lived with smokers,”
according to the New York Times? And anyway, as the same article goes on to say, “Regardless of how patients get lung cancer, it’s not deserved.” If you were honest with yourself about your own conduct, you wouldn’t think your better luck was all that deserved, either. Here, read up about luck:
Bad Luck of Random Mutations Plays Predominant Role in Cancer
Johns Hopkins Kimmel Cancer Center

Now read up about someone who cured her cancer through noble eating:
Blogger Who Claimed Diet Healed Her Admits She Never Had Cancer

Comfort In, Dump Out
I guess these last few complaints of mine fall under the same heading, something about how, as a cancer patient, you feel that you need to be protected from words that you cannot tolerate given your situation. There is so much hard truth you are already facing. You should get to choose who you face it with and how. Christopher Hitchens, with whom I don’t agree on a lot else, wrote in his book,
Mortality, that as a cancer patient he had “the unreasonable urge to have a kind of monopoly on, or a sort of veto over, what was actually sayable.” Preach. If you’re looking for a formula, here is an article about the “Ring Theory” detailing what you get to say and what you don’t. It goes comfort in, dump out:

How Not to Say the Wrong Thing


Illustration by Barbara Post.