Giving Advice to Someone with Cancer

After my second diagnosis, I got a letter from a dear friend who was concerned about me. The way he framed the letter was so touching, compassionate and endearing. He wanted to pass along some information that he’d found helpful. He started by telling me how much he cared about me. He admitted he was not a doctor and was not giving me medical advice. He gave me permission to take what he was sharing or to dismiss it. He finished by once again affirming his love and support.
(It was as if he'd already read what I'm about to share!)

TRUST ME, that's a very different approach than many of the messages I get from those who have advice for me about my disease, my treatments, my faith, my activities, my attitude, my food...any host of subjects.

"Just eat..."
"Stay away from..."
"Trust God."
"Don't say that!"
"If you will do this..."
"Pray more."
"Drink this concoction."
"Go see this person."

I offer this entry with mixed feelings. I definitely don’t want to stifle people who "only want to help," and are genuinely concerned for my health and well being. That said, allow me to talk about giving advice to a cancer patient. (Yes, I’m giving advice about giving advice!)
This comes from my own experiences, as well as others and based on my research.

There’s a difference in giving advice and giving encouragement.
There’s a difference is giving directives and giving support.

I remember during John Edwards' 2008 Presidential campaign, when his wife Elizabeth announced the return of her cancer. (R.I.P., dear lady. You touched my heart!) She and husband (What a horn dog!) said they were staying in the race. Everyone seemed to have an opinion. And most of those offering their “two cents” were not medical professionals.

As I’ve written in the past, cancer patients often feel completely out of control; the disease and the doctors are running the show, and crucial decisions are being forced on us. The medical team is telling us what to do, where to do, or what needs to be done. It can be overwhelming. And exhausting.

We rarely go to our friends to ask them what we should DO about out cancer; we go to them for support and encouragement because we have cancer. Even though we love and respect our friends, what they think we must do or ought to be doing or should have done is less important to us that knowing they are there for us.
Shoulds, Oughts and Musts are to be expected from our doctors, but can be grueling when coming from our friends.
We don’t need…we don’t want…more obligations.

I remember one dear friend who insisted that I try a “new” treatment which would totally cure my cancer. This “technology” was being suppressed by the medical community, but was completely safe and proven. "You are just a pawn in the hands of the doctors who are using you to make money for the pharmaceutical industry."
While this friend was very earnest and his concern was genuine, I actually felt guilty that I would NOT stop seeing my doctor, and I was NOT interested in this therapy.
But I was concerned my decision to ignore the adamant advice would impact our long friendship, and that created anxiety for me.

Consider this: when you tell us what we should do (e.g., perform this exercise, eat this power food, visualize this, take these pills, try this revolutionary new machine, pray these words) you’ve put pressure on us. Trust me, that is not what we need!

How should we respond?
What if you're telling us something contrary to our doctors?
What if it just doesn’t “ring true” to us?
Do we tell you that we don’t want to do that?
What if we offend you?
If we don’t do it, will you still support us?

Talk about stress!

Now, let me hasten to add: if we ask for your advice, that’s a different issue altogether. But even then, we want your advice…not your demands. When all is said and done, we still have to make the decision. And part of that decision might be not to take your advice/suggestions. Please respect the choices we make, and know that it’s not made lightly…or in spite of your recommendation.

Also, I’m also not talking about those in our lives who will help us make those crucial medical decisions. (e.g., spouse, partner, parent) Of course we want them involved, and we want their counsel. That’s part of our relationship. But in the end, it’s still our body and we have to make the decision.

At this point, I usually get a "What if?" about those occasions when it seems clear the person with cancer is not making good decisions, or not making any decisions. Or worse, has made a decision which you see as wrong. (e.g., discontinuing treatment) For this, there's no easy or universal answer. But here are a couple of things to keep in mind:

• Affirm your love and support.
• Ask permission to share your concerns, or what you're thinking.
• Learn why they've making this choice. (i.e., Who did they consult? What is the prognosis?)
• Be honest about your feelings. (e.g., If you are afraid or sad, say it.)
• Whether you agree or not, the person with cancer makes the decision.
• Re-affirm your unwavering love and support.

Side Note: That decision may/can change, which is why I recommend your interaction with them be surrounded in love and support. That way, they know you are there for them, and will feel more comfortable discussing new thoughts, re-evaluation, questions or even doubts.

So I close with a simple word of caution if you are thinking of giving advice to your loved one with cancer: think again! Giving advice…particularly when the patient/person is not asking for it…is probably not a good idea, in spite of your genuine concern and best intentions.

Personal P.S. Let me say Thank you! to those who’ve offered me suggestions and recommendations during both of my battles with cancer. I want you to know that I value you for caring enough to come to me with it. I may not agree with the counsel, and I may not implement it, but I can’t think of a single case where I doubted that the advice came from a place of compassion and genuine concern for me. If you read this and think I’m being critical or harsh about your specific suggestion, please know that is not the case; I want this to be about the idea of giving advice in general. No one person’s actions/advice prompted this message.

What to Do When Someone You Love Has Cancer

Someone you love just told you they have cancer.

How do you respond?
What do you say?

I’ve had many tell me they don’t know what to do in such situations. And they don’t want to say the “wrong” thing. For that reason, I’ve put together eight suggestions to help you respond to your loved one, the Person With Cancer (PWC).

1. Say Something. Just after my first diagnosis, I received an email from an out-of-state friend. Because he asked how I was doing, I wrote back and told him about the cancer. He never responded. It felt like a slap in the face.

Silence could send a clear, powerful (and unintended) message. It could give them the impression that their sickness is unimportant to you. Or that you are shunning them. It could feel like you are afraid of them, see them as tainted, contagious…or worse, already dead. The opposite of not knowing what to say shouldn’t be saying nothing! That hurts! And isn’t your loved one in enough pain already?

Tell them how what they mean to you, or how you are feeling. "I hate that you are going through this." You could just say “I’m so sorry.”  If you don’t know what to say, then that’s what you say. I will never forget when I told a dear friend who lives in the NYC area. In his typical, blunt fashion, he said “Well, that f@%&ing sucks!” I loved it. (Plus, it’s true!)

Ask them if they’re comfortable talking more about the disease. Don’t be afraid. They’ve chosen to share with you, so they probably won’t mind if you ask them questions.

2. It’s also okay to show emotion. This is tough news, so express your concern, your love, your compassion, even your sorrow and grief. Hug and touch them; they aren't contagious. Cry with them. (Weeping, wailing, gnashing of teeth might be a bit much. You want to support them, not force them to comfort you.)

Just after my second diagnosis, we were at church talking with friends who were asking the usual questions of concern (“How are you doing?” and “What have you heard from the doctor?”) when a woman walked up. After listening for a while, she asked me what we were talking about and I explained that we’d recently learned of my cancer. She nodded, then turned to talk with others. No response. No emotion.

On the flip side, it’s best to keep negative, toxic emotions to yourself—fear, panic, anger, rage, dread, guilt, pity, etc. Please be assured that the PWC is already struggling with these same negative feelings, so they certainly don’t need you to feed, reinforce or confirm them.

3. Affirm what they are feeling. It’s unrealistic to think your loved one won’t have a full range of emotions, including some that wouldn’t make it into the song “These are a few of my favorite things…” If you ask “How are you feeling?” it's important they be allowed the freedom to express whatever they’re feeling at that moment—without judgment, without being corrected and without shock. Sometimes they may feel hopeful; other times, they may be afraid. I remember remarking to a friend about apprehension related to upcoming treatments, and that person scolded me, saying I was being pessimistic. “The doctors don’t know everything. You need to spend more time talking to God than your doctors.” (Guess who I won’t be talking to about my feelings in the future?)

4. Be appropriate. Cancer is cruel; our friends should not be. Jokes about losing hair or breasts or erections might not be welcomed. Your loved one may not always have the capacity to laugh at their disease, their treatments, their side effects. Use caution when employing humor to cheer them up. Take your cues from the PWC, not from that witty, brave patient on that made-for-TV movie.

Just prior to beginning my hormone suppression treatments, I was explaining to a friend the effects I could expect—similar to those of a woman going through menopause. A man standing near us (a friend of my friend) kept interrupting to make “female” jokes (e.g., asking if I would suddenly have the urge to buy stilettos, if I’d grow boobs, would I be needing make up, etc.). There was no way to communicate, so I just smiled and ended the conversation.

Another aspect of being appropriate has to do with your loved one's condition. For example, how you treat them when they first learn of the diagnosis and how you treat them during chemotherapy will differ. If they’re weak and sick from treatments, it wouldn’t be appropriate to invite them to lunch or to go bowling.

5. See Beyond the Disease. Having cancer can be a full-time job—doctor doctor visits, tests, treatments, symptoms, etc. Sometimes, they may want to forget it, and talk about anything else. Help take their minds off the disease; engage them in “normal” conversation and topics. It may seem trivial to talk about the book you're reading when your loved one is going through chemo, but that might be just what they want.

6. Offer to help. Depending on the situation and health, there are any number of tasks that might need to be done: run errands, shop for groceries, household chores, cook/deliver meals, babysit (or pet sit), yard work, bring magazines or books. (If they are very sick, offer to read to them). If you do volunteer to help, consider being specific. ("Can I bring you dinner on Tuesday night?") Another important task involves transportation, particularly to the many, many (MANY!) doctor or treatment visits. And of course, do what you promise. (i.e., Don’t agree to take the cat to the vet, and then not show up.)

7. Stay connected. When a person first learns of their diagnosis, friends and family will usually check on them regularly. But as time goes on, people get busy…and the calls/visits become less frequent. If the PWC had to leave their job or can’t participate in regular events, it’s easy for their circle of friends to dwindle. Don’t stop inviting them to social events and don’t stop checking on them.

8. Listen! I put this last, but it should also be first. And middle. During this time, your loved one can feel completely out of control; the disease and the doctors are running the show. Their medical team is telling them what to do, what to eat, where to go, etc. Unfortunately, there are often loved one who are quick to share what they would do in the same circumstances or giving their advice on any number of details...including medical guidance. Sometimes, the best way to show your support is to just listen to them.

No, it’s not easy responding to a loved one's cancer diagnosis. But this is not about you; your loved one has cancer. You may be uncomfortable, but they could be terrified. If they’ve chosen to share this with you, it’s a sign they value you. It’s a gift…of trust. How you react…and what you say…tells them what you think of the gift.

Can you think of others things to do that would be helpful?
I welcome your insights, suggestions and comments.
 

Of course, there's also some things we should NOT do.
We'll look at those in our next article.

What NOT to Do When Someone You Love Has Cancer

In a previous article, I shared thoughts on what to say and do that might help when you learn a loved one has cancer. As a Pastor, a Chaplain (in a cancer hospital), and someone who’s living with cancer, I can also attest there are things said and done which are definitely not helpful. I’m sure it’s not deliberate, but that doesn’t always soften the blow to the Person With Cancer (PWC).

I’ve compiled eight suggestions about things to avoid, drawing from my own experience as well as conversations with other cancer survivors.

When Someone you love has cancer, DON’T…

1. Focus on Appearance. Cancer takes a physical toll; the person might look pale, or thinner or tired…or bald. They could be missing an arm, a leg, or their breasts. Calling attention to any of those elements only makes them feel self-conscious or fearful. (And it’s not like they don’t already know!)

2. Pound the Clichés. It can sometimes be overwhelming to hear sugar-coated statements like “Keep up a positive attitude.” It’s even worse to be hit with a cliché as a form of a reprimand for expressing any kind of negative emotion: “Stop saying that. You are going to beat this!”

And not to offend, but this includes the well-meaning spiritual axioms as well. (“God won’t put more on us than we can handle.” or “God will heal you.”) It’s not about the truth of these statements, but what if they feel that God has put more on them than they can handle. Perhaps after losing their breasts, they don’t think it’s all going to turn out good. We can’t demand how they perceive what’s happening to them.

Clarification: I admit, this one is a bit difficult to balance. We don’t want our loved one to lose faith or give up. (Which is not the same as being realistic when it comes to prolonging treatments that aren’t working.) And yes, a positive attitude is important for their recovery, so it’s good to encourage them. But that can’t be imposed or required.
If you truly think your loved one with cancer is in despair and/or in danger of giving up, share your concern with them. Ask if they’d like to talk. That way, you are respecting their feelings, but you’re showing genuine concern.
The two suggestions I can offer: Listen to them, and if they aren’t open to talk, then pray for them.

3. Assign Blame.

For the record, assigning “blame” also applies to those who need to attach “religious” significance (“God just wanted to get your attention.”) or assign some spiritual lesson to be learned. (“There’s a purpose for everything.”) It includes those who see sickness as the result of some “sinful” behavior, which is merely a different kind of cause and effect. (“You sinned, you got cancer!”) It is particularly and especially directed at those who assign a supernatural, malevolent origin (Satan or demons) to all sickness. (“You have a demon of cancer which needs to be expelled.”) If you believe this, (1) seriously?, and (2) you will not be helpful sharing it, so please…for heaven’s sake…keep it to yourself!

Example: Melissa Ethridge’s breast cancer was used by Michelle Bachmann, who said she hoped the cancer would be an “opportunity” for Melissa to repent and stop being a lesbian. When I first learned of my cancer, I had a “friend” write and tell me it was caused by my homosexuality. (Not sure how he explains straight people with this cancer?)

4. Compare. I imagine that most everyone with cancer has heard the stories of those who’ve had “the same kind of cancer,” and are now doing fine. We’ve also heard of those who had chemo or radiation or whatever, and had no side effects or no reactions. (“My uncle didn’t miss a day of work…”) When someone shares that they have cancer, we shouldn’t try and move the conversation to anything or anyone else. (“I know what you’re going through, my uncle was so sick…” or “That’s nothing compared to what my uncle went through…”)

Surprisingly, I had to have this conversation with one of my doctors, who could not understand why I was having such a difficult time with the treatments. “Most people don’t have these reactions,” he said. “Well, I am…so what can we do about it?”

You definitely don’t want to make it about you, which includes talking about what you would do. (“Well, I certainly wouldn’t let them shoot me full of chemicals.”) Even if you’ve had cancer, your experience is not THE defining one; each person’s cancer is different, even with the “same” cancer. Everyone’s treatment is different…and their body will respond in a different way…even with the identical treatment.

Clearly, it’s meant to be inspiring, or empathetic, but it can also send the subtle message that the PWC isn’t allowed to have their own journey. Or they are in some kind of competition with the maladies of others.  What if they aren’t doing fine? What if the treatments make them too sick to work? They could worry about disappointing you if they don’t measure up to the folks in your stories.

5. Tell Horror Stories. It’s not helpful to relate all the gory details of those you know who’ve had “this same cancer.” (“My grandmother lost her leg…” or “My uncle died of that.” ) You are there to comfort, love, support and encourage your loved one, not be Wes Craven!

6. Give Unsolicited Advice. If you talk to most cancer patients, you’ll learn they have folks in their life who like to tell them what to do. Some of it may be good advice, often it’s not. Generally it’s well-meaning, with the best of intentions. But almost always, it’s unsolicited.

Giving advice is not the same as giving encouragement. There’s a difference is giving directives and showing support. Your loved one probably doesn’t want…don’t need…more obligations. If you are asked, give your opinion. Otherwise, love them and most importantly, listen to them.
More on this one in a future article

7. Second-guess the Doctor(s). You are probably not a doctor, must less an expert in oncology. So if you tell a PWC to ignore the advice of their doctor, or challenge the instructions of medical professionals, you are potentially confusing them at a time when many life and decisions are being made. I know that I don’t go to my loved ones for medical advice; I need them for support, comfort and encouragement.

Clarification: Obviously with these last two I’m not talking about those who will help make those crucial medical decisions. (e.g., spouse, partner, parent) That’s part of the relationship and of course they will be involved in the decision, through counsel, prayer, talking with doctors, weighing options, etc. But in the end, it’s still the decision of the one with cancer.

Your loved one is probably afraid, confused, anxious, and possibly dealing with pain. You don’t want to add to it. The best thing you can do is to love them. To support and encourage them. To listen to them. They will know that you have their best interests at heart.