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Things to say (and not to say) to a cancer patient.

December 17, 2009

When people hear that I have cancer they often say, “I don’t know what to say.” Acknowledging you’re at a loss is a fine response. It’s what you say, or don’t say, after that that gets tricky.

For example, some people know instinctively that the best thing after that is to just be quiet and listen. Then, take a clue from the person you’re talking with. If the person is angry, be angry with the person; if the person wants to laugh, laugh along.

As the Bible says, “Rejoice with those who rejoice; mourn with those who mourn.” (Romans 12:15). If the person doesn’t want to talk about it, don’t prod. Wait until the person is ready to talk, and that might be never, especially if you’re not a close friend or family. Prodding for information is like ripping off a bandage to see someone’s surgery scar. Leave it alone until the person is ready to talk.

Others think they have to say something to “fix” the situation. That’s usually a mistake. If the doctors can’t fix it, why do you think you can?

So, what you should say is fairly straightforward and simple and often involves complete silence. Most of the things you shouldn’t say are in the prodding and fixit categories. I have a lot of them I’ve collected on my own and from others.

Disclaimer: I’ve said many of these to people before I got cancer and a clue, so if you see yourself somewhere in here please know that I see myself too and I don’t hold it against you.

Foot in the mouth from the infusion center

You can say stupid things to other cancer patients even if you’re a cancer patient yourself. A few weeks ago the lady next to me in the chemo room (infusion center, torture chamber, or whatever you want to call it) tried to strike up a conversation by saying in a cheerful voice, “What kind do you have?” She asked in the same voice you would ask a child what flavor his ice cream cone happened to be. Snort. Honestly, we all have cancer in here, lady. What does it matter what flavor it is? I bet this lady is annoying on airplanes also; she probably talks about plane crashes when she flies.

“Nobody dies of breast cancer”

When I was first diagnosed with cancer five years ago, someone at work stopped me in the hall and asked me about my diagnosis. “Oh,” she said, “Breast cancer. Nobody dies of that anymore.”

I think the toll of friends I’d lost to breast cancer was up to two at that time. I didn’t like to think of them as nobodies. Further, the truth about breast cancer is that 30 to 40 percent of the time it returns and when it returns it is Stage IV and considered terminal. Also, the five-year mark is meaningless with breast cancer. I know people who’ve had their breast cancer return 25 or 30 years later.

The truth about breast cancer is that you don’t know if you’ll die of it until something else kills you. It’s among the most unpredictable of cancers.

Anything about bravery or heroism

A friend of mine was diagnosed with cancer. When she told a close friend, the friend’s immediate response was “You’re my hero.” My friend said she’ll never forget that or her astonishment at how stupid that statement really was.

Along those lines, my latest pet peeve is the people who keep calling me “brave.” Ha! Brave would be stepping out in front of a car to rescue someone. Brave is when you have a choice. My only choice is to go through crappy treatments or jump off a building. How is that brave?

Anything about appearance, feelings, or bodily functions

I’m going to go Emily Post on you now. USE YOUR MANNERS, for heaven’s sake. Why does a cancer diagnosis open me to personal comments from people I barely know? If you wouldn’t say something to someone you know isn’t sick, then don’t say it to me.

Here are some examples.

“What’s under that hat?” I know you’re asking if I am bald and if I have cancer. If you don’t know me, it’s none of your business. My answer is “I have a head under my hat.”

“At least you don’t have to shave your legs.” How do you know and why would I want to discuss that with anyone? Don’t ask about any other kind of hair anywhere else, even though I know you’re curious and just begging me to give you the scoop.

“I know how you feel. I have this really bad cold…” or whatever. The truth is you don’t know how I feel and I sincerely hope you never do. I don’t mind talking about you and your life, but don’t compare cancer to a common cold.

“Gee, you look good.” If you’re a relative or a close friend who knows my entire situation, you may comment on my looks. If you’re not, just don’t. For example, I’ve run into people from work at various functions. I’m currently on leave. When I hear “Gee, you look good” from one of them, I hear the unspoken “so why aren’t you at work?” The truth is that cancer can be killing you and you can look fine. Also, when I go out to functions I spend a few days preparing by taking extra naps. I take an hour before I leave to put on lots of makeup and a wig. What do you want me to do, put on green makeup and fake a limp so I look appropriately “sick”?

Furthermore, telling me I look good makes me wonder if I looked awful the last time you saw me. And what happens if you stop saying “Gee, you look good.” Does that mean I look awful now and like I’m going to die soon? Or maybe you mean “You look good even though you’re going to die.” Or “You’re not totally bald so your treatment must not be too bad.” Or “You look good for someone who has such a sallow complexion?” What does it mean??? Again, take a tip from Emily Post, it is never a good idea to comment on someone’s appearance.

The other day I saw a reflection in a big window across a parking lot. It was Truman Capote complete with hat, scarf, glasses, and generally fat and hunched up look. I know he’s dead, but I thought I’d ask for an autograph just in case. As soon as I moved forward I realized that Truman moved at the same time. Then I realized I look almost exactly like Truman Capote these days. In other words, thanks for the compliments, but I know what I look like and I don’t believe you.

Don’t ask for drugs

A few years ago after a surgery a nurse I knew at church asked me if I had any leftover pain medicine. I thought maybe she was asking if I got through surgery without pain and didn’t need to drug myself, so I said, “Yes.” Then she asked if she could have the leftover pills. I thought mine was an isolated case, but I’ve heard several cancer patients mention the same thing happening to them. I have enough trouble in my life without being asked to contribute to someone’s addiction on top of the illegality of sharing prescription drugs.

Don’t judge how I’m going about fighting this or talk about conspiracies

Many people send me information like a brochure I received in the mail titled “Magic Mushrooms that Cure Cancer.” I know that some of this is plainly out of concern for me – you’re just presenting ideas. But please don’t get into conspiracies about how Big Pharma, the Federal Government, and oncologists are just using cancer to earn money and blocking information about magic mushrooms. Lots of oncologists and pharmaceutical employees are cancer patients themselves or have family members who are. They, too, are searching for a cure and they often use organic substances. One of the drugs I’m getting now is derived from the Yew tree.

Furthermore, if someone developed a $5 pill that cured cancer, I know oncologists would be all over getting that to as many people as possible and Big Pharma would be glad to make it. How would this be a money losing proposition for them? Everyone and his cousin’s dog would be lining up to take that $5 pill.

Also, if a group of conspirators is trying to hide information about the magic mushrooms then how come you can find all kinds of alternative treatments with a simple web search? Wouldn’t the Evil Conspirators have put a block on the web?

I have researched my kind of cancer and I’m doing “regular” and alternative therapies at the same time. I’m open to weird stuff, but I check it out very very carefully. So, feel free to present ideas, but leave out the conspiracies, and do a little research yourself before you pass things along.

Finally, don’t worry that I’m killing myself by not doing what you think I should. Also, don’t tell me that it’s the Federal government’s fault and they’re part of the conspiracy. I work for the Federal government among a great number of bright and caring people. They’re too kind and too busy for conspiracies.

So, even though you might believe in magic mushrooms, don’t be disappointed if I don’t. In a sense you’re asking me to experiment with my health so you can find out if your alternative treatment is a fraud or not.

Don’t try to find why this is my fault so you can feel safe

Here’s my “favorite” conversation with a nurse in my “regular” doctor’s office five years ago.

(She reads the chart…. but apparently didn’t bother to read the health questionnaire)

“Oh. You have breast cancer?”

“Yes.”

“Have you ever smoked?”

“No.”

“Is there cancer in your family?”

“No.” (This is also on the health questionnaire.)

“But you drink, right?”

“No.” (I’m starting to figure out that she’s trying to find a reason to blame me for having cancer so she can feel safer….)

“You should have been getting mammograms.”

“I get them yearly. My cancer didn’t show up on a mammogram and the doctor never felt a lump.” (This should also be in my chart.)

“Have you ever lived near a toxic waste dump?”

“Uh…. Not that I know of.” (Toxic waste dumps are not on the health questionnaire. She’s really fishing now.)

“Do you have stress in your life?”

“Cancer causes stress.” (And right now my blood pressure is going up….)

“You should have a positive attitude. That can cure cancer.” (More on the positive attitude later…)

“Oh… uh… Okay.” (I’m positive I’m going to throttle you if the doctor doesn’t come in here in a minute.)

And then she came out with the kicker….

“You know, there’s a ‘cancer personality”.”

“Oh….???!!” (This was a popular notion at the time — that certain personalities are susceptible to cancer. Actually it’s a cancerous personality and she had it…. then the doctor came in. I should have complained about the nurse, but I just stopped going to that doctor.)

“All things work together for the good” and “This is a life lesson”

The same people seem to say these two gems one after another.

“All things work together…” is in the Bible. I can read the Bible. I can say this to myself if I want to. I’d rather not have it shoved in my face every five minutes. I dare you to think otherwise in my circumstances. It’s like saying “love is patient, love is kind” to someone who just found out her husband had an affair. Use your manners.

As for this being a life lesson, I didn’t sign up for the School of Difficult Life Lessons. I’d rather go to The School Where Everything Goes Right. If you’re so interested in the School of Difficult Life Lessons feel free to sign up for classes. I’ll pay your tuition.

“Any one of us could walk outside and get hit by a bus”

I discussed this in a previous post. I don’t mind this one at all. As I said before, the quick option appeals to me; it doesn’t to other people. So, strike this one from your vocabulary. As one friend of mine – another cancer patient – said, “Yes, but I’ve already been hit by the bus. Now I’m stuck on the bumper and getting dragged around the street.”

“Keep a positive mental attitude”

Someone actually studied cancer patients who were positive and those who were negative during treatment. The statistics show that optimists and pessimists die at the same rate.

The implication of the “always be positive” approach is that if we dare to let ourselves delve into despair and fear then we are feeding our cancer and shortening our lives. That’s a lot of pressure. I know people mean well, but it makes me grumpy and I do occasionally snap at people who say this to me.

No matter how tempted you are to tell me to be positive, you need to remember that I am grieving. I think people make the mistake of equating grief with “negativity” or “not having a positive attitude.” When you are given a terminal diagnosis you go immediately into grief for your loss. For me, besides losing 30 or 40 years of life, I am grieving the loss of hope for the future, my financial stability, the rewards of watching my child grow to adulthood and have children of his own, and the ability to get out of bed thoughtlessly and waste time without feeling guilty.

Think of it this way, would you say to someone whose family member has died “Keep thinking positively”? Of course you wouldn’t. That would be rude. No amount of positive thinking will get anyone through grief. We simply must travel through every stage, and we each must be allowed to do that in our own time without being pushed to some stage we’re not ready for.

The stages of grief ebb and flow. The stages, as posited by Elizabeth Kubler-Ross, include denial, anger, bargaining, depression, and acceptance. Later psychologists revised the stages to shock and numbness, yearning and searching, disorganization and despair, and reorganization. I think I agree with the latter words. Whatever words you use, I am currently ebbing and flowing through every stage except acceptance and reorganization. They’re last on the lists for a reason. I’m not there.

I also can’t be pushed to some stage I’m not ready for. Again, let’s look at grief from the perspective of how people mourn the loss of a loved one. I think the most striking example is the Jewish tradition of mourning. Ages ago people would rip their clothes and throw ashes on their head after a death. I’m not sure that tradition remains, but I do know that after the death, family members stay in the house of the loss and sit for seven days. Friends then can make a Shiva call. They don’t have to say anything; in fact, it’s just fine to sit and say nothing.

After this initial very public grief, the period of mourning continues for 11 to 12 months, thus allowing the mourner a gradual re-entry into normal life. I think this tradition acknowledges the fact that grief for a great loss takes time. I have been dealing with the loss of what I thought was my life since June. It’s now December. I still need some time to mourn.

Besides exchanging the unrealistic concept of “negative” for the truth of grief, I think that we all need to revise our thinking about the word “positive.” Being positive in the midst of grief is a mere momentary distraction, like sending a clown in to distract a bull from killing a cowboy during a rodeo. It’s momentarily effective, and the cowboy escapes until his next ride, but the bull remains deadly and can still kill both the cowboy and the clown.

The worse thing about the relentless drive to always be positive is that I suspect that positive cancer patients are simply easier for doctors, friends, and relatives to deal with. I’m not sure anyone actually means it that way, but sometimes that’s how it comes across to me. Remember, it’s okay if I cry; I am mourning. It’s all part of learning to deal with my loss. It’s impossible for you to distract or comfort me out of my grief and no mental trick will get me through it faster. It’s just a long, awful slog. Please don’t send in the clowns.

Instead, focus on hope, and comfort those who mourn. Use your manners, and take a hint from the Bible, which never mentions a positive mental attitude. Remember Isaiah 61.

He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, planting of the Lord for the display of his splendor.

28 Comments leave one →
  1. December 17, 2009 8:04 pm

    so inspiring…
    Like it a lot.

  2. December 18, 2009 9:17 am

    I think everyone is minding their manners and keeping their comments to themselves this morning. I do have to say that this is masterful writing. Very moving. Well done.

    When I go anywhere other than home to eat, and I have to say, “no wheat, no dairy, no eggs, no caffeine, and ultra-low fat,” people always say, “I’m sorry,” or “that must be hard,” or “what CAN you eat?!?” I tell them that I eat an amazing diet of really fresh, whole, brightly-colored, and cleverly seasoned foods. I eat meat, fruit, and vegetables, including potatoes, and I can digest one of the grains: rice. (A new addition is goat and sheep cheeses. Somehow, they are digestible for me.) And I tell them that I enjoy the challenge of making gourmet meals with foods I can eat. And then they see the possibilities.

    This has nothing to do with cancer, but if people are afraid to comment because they might say the wrong thing, think of all the possibilities for right things to say! I keep remembering the doctor who said something like, “we’re going to get you through this and you’ll be around another 10 years. By that time, they’ll have something to give you that will work better, and you’ll just keep on going.” Love that guy. I dub him Dr. Hope.

    I’m looking forward to seeing your new Capote look tonight. :)
    xoxo
    Kim

    • Jill permalink*
      December 18, 2009 9:56 am

      Yes, I was afraid I might offend people. It works both ways, ya know? You will notice that I put in a lot of “unless you are a close friend or family member.” Most people who comment here fall into one of those categories. For example, it means something completely different when one of those people say “gee, you look good” versus when a slight acquaintance or a stranger says the same thing. Close friends and family members have context.

      Also, I regularly stick my foot in my mouth, so I’m something of an authority. =)

      • December 18, 2009 11:54 am

        I know: open mouth, insert foot. Right? I’ve done some doozies myself. And had them bestowed upon me as well. People used to ask me if I was pregnant. “No,” I’d say, “I’m just fat.” (I think that was before I had kids, when I gained a bunch of weight after leaving home, cuz all we had money for was store-brand mac & cheese, and hot dogs.) And then there was the time when a little kid looked at me and said, “what’s wrong with your face?!?” My cheeks had gotten discolored from taking menopause hormones. I figured it was time to go to the dermatologist soon after that. :)

      • Deb permalink
        December 21, 2009 11:00 am

        I know you’ve been thinking about writing down your “true feelings” for quite awhile now, and I want to thank you for sharing them with us. This has touched me in a way I know you can understand, and has helped me see more clearly in my own situation. Don’t get me wrong, I’m not saying you’re my hero or anything! :) God bless you Jill!

  3. Lisa permalink
    December 18, 2009 12:04 pm

    I haven’t commented as I’ve lost my mind during finals week. I know petty thing, but as you are aware there are a few other things occurring as well.

    I would have thought I would do better on the list of what not to say, but know I’ve said some of them too at times as well.

    I relate though in a way, but only a small way as Autism doesn’t kill a person. However, if one more time someone mentions vaccines to me – I could potentially spontaneously combust. Especially since, all research including longitudinal studies show it has no link to the disorder.

    I dislike the implied – somehow some things are our fault or not and only some things people feel compassion for. I wished on a few over the years that they could have a child with a disability, but then it happened and I felt awful.

    I have the outmost compassion and empathy for what you are going through on so many levels. If I ever stuck my foot in my mouth, please know I didn’t mean to. What is there to say? I think that becomes the problem with death, health and so on. What is important to say though is…

    Always in my prayers, You have been an amazing friend to me and my son and I think of you and yours at least daily.

    Back to writing about Schizophrenia, which I think is leading to me having Schizophrenia ;-) Maybe at least gave you a laugh!

  4. December 18, 2009 12:21 pm

    I think people say the easy comforting words, because they don’t have to think about what it means to the other person, it is mostly for their own benefit, to make sense of the world.

    Keeping those quips off my tongue takes a moment of reflection, and I hope I haven’t used them, but I reserve the right to have had or have a moment of weakness! :)

    I think people see bad situations in movies and TV and those for the most part always turn out great and wonderful, because nobody likes spending money on sad movies. All about marketing, not reality. People need to get out more.

    Plus most news reports will only tell you about the successes, and when the “brave” person doesn’t make it, they mention it in two words at the end of the broadcast so you weren’t sad at the beginning and turn on another station.

    As far as I can tell we can only keep trying, keep working with the doctors, keep concentrating on whatever may be positive, to keep you more centered, but also know the negatives so you can go find good answers. Ignoring either, I suspect, won’t help you much.

    I think you should make a book of all of these experiences and call it “Jill’s Book-o-Blogs”.

    It could happen.

    -Scott

  5. Marcia permalink
    December 18, 2009 1:22 pm

    To that I can add …… absolutely nothing.

    Amen.

    Blessings.

    ~ Marcia

  6. December 18, 2009 3:10 pm

    I wanted to make a slight modification on my first paragraph, I felt I was a bit too cynical there. Many people don’t know what to say, so they say the easy things, but it doesn’t necessarily mean they don’t care, just have no idea what is appropriate.

    Anyway, just wanted to clarify :)

    -Scott

    • Jill permalink*
      December 18, 2009 3:36 pm

      Yes, that’s exactly right. (This is my brother, who is so much nicer than I am.) I’ve had this post ready for quite some time and hesitated to post it for this reason. Most people mean well, and I know that. Remember, too, that most of the things that bother me come from strangers — like the guy on an elevator who, when I was pregnant, wanted to know if I had hemorrhoids because his wife had trouble with them. If a family member had asked me, it wouldn’t be that big a deal. But some guy on an elevator? Wow.

  7. Cristina permalink
    December 18, 2009 4:11 pm

    The intrusive questions by strangers– those leave an icky feeling at the bottom of my stomach. How did you get it? How severe/bad is it? Can you do this/that? I’ve answered a couple of times and regretted it when I saw that subtle change in their faces…the stereotype falling into place or the inability to find another question or comment to say anything further in the quest for small talk. It’s sometimes hard to find the right words to convey “I’m sorry, but I don’t know you well enough.” The wrong words seem to goad some on further, and seems a bit too cold to those who might turn out to be good friends eventually. It’s tiresome to continually educate, but it’s rewarding when there are those who realize they did place their foot in their mouth and try to apologize (or at the very least blush in embarassment). It’s the strangers who don’t bother apologizing who make the experience more of a burden than it has to be.
    I confess…at times I am the one who talks about airplane crashes when at the airport…and I’m curious about bald heads because guys can shave it all off in the name of style or covering up the true hair loss, but its socially unacceptable for women to do the same unless it’s because of chemo. Remember the fuss about Demi Moore ‘really’ shaving off all her hair for that G.I. Jane movie?
    And now for something odd (or perhaps my sterotypes need breaking..)…I’m watching Martha Stewart making brownies with Snoop Dogg and talking about working at McDonalds.

  8. Mame permalink
    December 18, 2009 9:01 pm

    Very well put.

    Maybe strangers ask strange questions because they wouldn’t dare ask a family member.

    Thank you letting us in on your most personal inner thoughts, Jill. I feel that the more informed we are the better the support we can give you.

    I also love the the fact that you came right out and told people how they could help you. Everyone wants to do something – but some of us are like the 3 Stooges all rolled into one, tripping over our own feet and falling on our faces. So, it was a relief to know right up front what you wanted.

    Continued prayers for you and Dr. Hope!

  9. mom permalink
    December 19, 2009 8:26 am

    My dear daughter, I am identifying with your blog. When I had my “giant” brain aneurysm break and survived, I get these comments: “Boy are you lucky! Not too many people survive THAT.” Even doctors have said that to me. Well, my dear, we are survivors, aren’t we?

    Mom with love and prayers

    • Jill permalink*
      December 19, 2009 11:15 am

      Oh no! Yes, even doctors can be complete clods. And, yes, we are survivors.

  10. December 20, 2009 11:25 am

    I think sometimes people say those things because they don’t know what to say. Me? I just keep my mouth shut.

  11. December 21, 2009 11:29 am

    Just stumbled on this, seems appropriate if you didn’t mention it before! :)
    -Scott

    http://www.amazon.com/Bright-sided-Relentless-Promotion-Positive-Undermined/dp/0805087494/ref=sr_1_2?ie=UTF8&s=books&qid=1261420088&sr=1-2

    • Jill permalink*
      December 21, 2009 11:49 am

      Yes, we heard her on the radio and went out to buy the book. She’s a bit over the top sometimes, but has some very valid points.

      • Debbie permalink
        December 22, 2009 9:48 am

        I haven’t read the book, but I agree with the title. Do you know that teachers can’t even tell a kid they’re wrong anymore? If a student says the answer to 1+1=4, the teacher has to say, “That’s one possible answer.” How do you learn if you don’t make mistakes? Personally, I’ve learned and grown the most when I really screw up.
        As far as the rest of your post – good insights. It’s unfortunate that “foot in mouth” disease doesn’t yet have a cure (maybe sewing the lips shut). I am a frequent sufferer and occasional victim. I guess I prefer to give folks the benefit of the doubt. Most of us are uncomfortable with silence – we have to fill the space with something – and usually that something has very little thought behind it.
        You’re also right about the presence of God through all these tough times. He doesn’t every promise it will be easy, but He does promise to be there through it all. I still believe God has great things planned for your future, Jill. Hang in there!

  12. Sarah permalink
    December 21, 2009 9:04 pm

    Thank you, Jill, for such insight.

    Sarahtee

  13. Lisa permalink
    December 22, 2009 5:04 pm

    I wanted to wish you, Jill and yours a special holiday. God bless.

  14. February 23, 2010 9:03 pm

    I stumbled across your blog from the “freshly pressed”. I am so glad I came across this one. Often when I find out that someone has cancer or another serious illness, I have responded with the “oh, I didn’t know” and then quiet. I am relieved to know that I don’t need to say anything else.
    Thank you…..hope it’s okay to say that I am sending up a prayer for you and your family as I send this.

    • Jill permalink*
      February 23, 2010 9:13 pm

      Of course! Please pray. I covet prayer.

  15. March 26, 2010 11:08 am

    Jill,

    I was directed here from your post on Inspire.com and I am so glad I took the time to come and read!

    Excellent blog, excellent points and excellently written! I love your style, and your, dare I use the ‘a’ work, attitude! As one with Stage IV METS, I find this point of view very validating and comforting. VALIDATING! That word has strength and freedom in it for me!

    Thanks for sharing. I will try to follow!

    Shelli

    • March 26, 2010 11:43 am

      Nice to meet you, Shelli. I’ll look forward to seeing you more often.

  16. October 21, 2010 12:01 pm

    Hi Jill :) I’m writing a post about how to educate my awkward self on the way to behave around someone who’s been diagnosed with breast cancer (or anything else, really), and my search led me here. Your advice is wonderful and SO helpful for me — a self-proclaimed idiot when it comes to knowing what to say. I am social-awkwardness at its finest. Er…at its awkwardest… (See what I mean?) Anyway, I’m going to link to you if you don’t mind because this post is both wonderfully written and incredibly helpful. Thanks so much!

    (And now I’m off to see what you’re up to these days!)

    • October 21, 2010 12:17 pm

      Please feel free to link away. I’m not exactly a pink October fan, though. I’m sure you’ll find that out. =)

  17. October 21, 2010 1:50 pm

    I have been beating myself up for a year for not having a response, not asking questions, falling into silence when an acquaintance told me she had cancer. I still do not know the type. I still do not know any details. But I offered to help and did drive her daughter home a few times.
    You just took that guilty feeling away. Thank you. Truly.

    • October 21, 2010 2:24 pm

      I always appreciate those who understand the art of silence.

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