Monthly Archives: June 2008

What not to say to a cancer patient

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Cancer survivors have all dealt with all sorts of comments made by well-meaning (and not so well-meaning) people. We recognize that often these comments come from the speaker’s discomfort because she does not know what to say. With the help and input from my friends on a breast cancer survivors’ support forum (which I’ve been an active member of since my diagnosis), we’ve put together some ideas and thoughts on what you should not say to a cancer patient /survivor.

What Not to Say

Some things seem like they may be the right thing, and sometimes things are blurted out and once spoken, are obviously all wrong. You can usually tell by the wounded or angry look you get, but by then it’s too late and you’re wishing you could take the words back. The worst offenders are those statements that are dismissive of the cancer survivor’s feelings, pain and experience.

People should steer clear of anything that might be construed as telling someone how they should feel or that suggests the speaker has psychic powers (e.g., “I’m sure everything will be fine/the cancer is ‘cured’/the lump is benign/the test will come back okay”).

Here are some more things that have been said to cancer patients and survivors, that are insensitive or even offensive.

At least they caught it early.

Why is this the wrong thing to say? Early detection is a good thing, isn’t it? Again, this comment is dismissive of the absolute living hell cancer patients are going through, both during and long after chemo and radiation are finished.

This comment dismisses the fact that I’ve been dealing with cancer for several months…tests, scans, appointments, procedures, surgery, missing work, more tests, scans, procedures…next 24 weeks of chemo (maybe 54) then 6 weeks of radiation…then follow up. Then there is always my wondering if there will be recurrence. At least they caught it early. End of story, pass the salt and pepper.”

Do not go there…the…”at least you caught it early” stuff. I will smack anyone who says that to me again. I’m close to 3 years out since diagnosis but the experience of chemo is still with me…there are long term side effects. I now have the sad experience of my close girlfriend dying from breast cancer after having caught it early..her tumor was smaller than mine and no node involvement. I tell that story (which is fresh..she died 2 months ago and I am still mourning) and people shut up.

I also I’m surprised when people say “At least they caught it early” mainly because, in my case, they didn’t!!! Five years ago my ovarian cancer was Stage III and this time my breast cancer is late Stage III so why are you assuming they caught it early???? Plus it certainly does discount what you’ve gone through even it is caught early.

The “at least they caught it early thing..” UGHHHHHH! People say that to me before they even know when it was caught. That one particularly pisses me off because THEY didn’t catch it. I found a lump 2 years ago and when it didn’t show up on the mammogram and ultrasound (EVEN THOUGH EVERYONE COULD FEEL IT) I was told it’s nothing to worry about, you’re young it’s nothing. Two years later excruciating pain/ divine intervention made me go back. Alas…the “nothing to worry about” is cancer. They caught it early my a##!

I especially like this one

At church one Sunday one of the men said to me “well at least they caught it early” (yes, we’ve all heard that before) and I stupidly said “well, actually, it’s unfortunately done some spreading” and he said “well, you know, if you don’t make it, at least you know you’ll be in heaven.” I swear to God the man said this. I think he might have mistakenly thought I would not commit an act of violence in a church.

But this is what we are really thinking:

….they may have caught it early, but we have no guarantees.

Keep (variation: at least you have) a positive attitude.

Attitude, schmatitude. Cancer patients and survivors will tell you that, while a positive attitude is a nice platitude, do not ask us to keep one. We go through the same stages of grief and mourning that people go through when a loved one has died: denial, anger, bargaining, depression, and eventually, acceptance. We get very, very depressed. Depression can alternate with anxiety and panic.

My favorite is when they tell me I have a positive attitude. Me? How long have you know me & how many major depressions have you seen me go through? What part of “positive” don’t you understand?

Any comments, well-meaning or not, having to do with hair loss or regrowth.

This is a very sensitive area, especially for women. Some women are equally unhappy about their bald heads as they are about their mastectomies. This includes comments on what she is (or isn’t) currently wearing on her head, or the idea that she might “look good bald.”

Got a good one today from one of my neighbors “is that hair I see?” No. It’s not hair – I decided to raise mushrooms. Shitake anyone?

“I LOVE your short hair, you should keep it that way.” My response to that is “Want me to go with you to your salon so they can copy it on you?”

“I’ve always wanted to shave my head” This from one of my best friends. Hello? What is stopping you???

Now that my hair is coming back, laughing at me when I take my hat off. Sorry, it’s hot in the office & I’m not going to sweat because it makes you uncomfortable to look at me.

Any comments, well-meaning or not, about the “benefits” of a mastectomy.

Believe it or not, people have tried to point out the benefits of a mastectomy. Can you imagine any real benefits to having your breasts cut off, and being left with one or two long, hideous scars? Not all women opt for reconstruction, and even after reconstruction, there are scars across the new breast that never fade. Rarely is there much, if any, tactile sensitivity in the reconstructed breast. In other words, you can’t feel it when your partner or lover touches you — if he (or she) is willing to touch you at all.

The only benefit to a mastectomy is that it removes the tumor. There are no other benefits.

I had a cousin, who is 30 with two children, say that she wished she could get what I have (a double mastectomy) so she could get new breasts without feeling guilty about it. Yes, I have to say that when we are diagnosed with this God awful disease that the first thing that comes to mind is ” Yeah I get to get new breasts and not feel guilty about it.”

Went and saw my oncologist yesterday and she said “Well, you will have perky boobs at 85.” (At least she thinks I am going to live to 85.) Well at 49, I had beautiful perky boobs that I could FEEL. And nipples that I could FEEL.

Survivor stories (or worse: fatalities) about people (and other species) that you’ve known who had cancer, and what their experience was like.

Honest, we get really, really tired of hearing it. Seriously. Everyone’s cancer, chemo and radiation experience is different, even people with similar diagnoses and treatment. For example, I was allergic to all of my chemo and suffered additional allergy-related side effects because of it, such as a swollen face, throat and tongue, a hideous rash on my arms, face, chest and legs (you can still see red patches and small scars from the blisters) from the taxol. Not everyone gets a rash, or gets one bad enough to leave scars.

My best friend, when I told her of the impending surgery (prior to diagnosis) said she had a friend who was diagnosed with breast cancer and 6 months later she was dead! She has since apologized and said she did not know what she was thinking. Yes, she is still my best friend, but I don’t discuss my cancer with her anymore except in the vaguest terms.

I ran into a friend of my wife’s, somebody my wife has not seen in several years. This woman asked me how my wife was doing, not having heard she had recently been diagnosed with invasive breast cancer. I told her about the diagnosis and her response was that her DOG was recently diagnosed with cancer and was told that he only had a few weeks to live. I looked at her incredulously and said I didn’t think it was the same thing. Her response was that her dog was very important to her. I do business with this woman, or I did at one time. Not anymore.

You look good.”

We do not look good and we know it. We look and feel like crap. Chemo causes bloating, blotchy skin, rashes, watery eyes, swelling of the face — not to mention the inevitable hair loss, and not just on our head. We know you are lying: we know we look like walking bloody hell. This comment is patronizing, and dismisses our feelings and our pain.

I could not stand the “Well, you LOOK good!”….during chemo when I felt like crap.

I hate when people I know come up to me and say how are you doing. “Well you look good.” I feel like saying, compared to what?

“You look so healthy, in spite of everything.” Ok, maybe because my face is rounder, and my body is bloated, my wig is thicker than my real hair??? Holy smokes.

“Well u look great” NO I DON’T!!!

You are so brave!” or “You are so strong!

This one has been greeted with ambivalence. Some find it offensive, others see it as a compliment. I would suggest avoiding it, unless you know the person well enough that you are certain they would take it as a compliment. I heard it myself many times and chose to take it as a compliment, and was scolded on several occasions for dismissing my own apparent strength as simply doing what I had to do (teach a college class during chemo.) But I advise caution here: as they say, your mileage may vary.

I wish people would not say how strong I am and how brave I am. I am not strong or brave I am just dealing with the cards I have been dealt and many days I just cry! It actually puts pressure on me to be upbeat and my “old” self when I am feeling far from my “old” self.

And last but not least:

You should forget about it, you’re fine, you beat it, move on.”

This one I think comes from people (some might say more candidly, “insensitive jerks”) who are uncomfortable with the idea that we live with cancer and the threat of cancer for the rest of our lives, even after treatment is finished and our hair (eventually) grows back. They seem want to dismiss the whole thing and pretend it never happened. Or maybe they just want to talk about themselves for a while.

We have never fully beaten cancer, even with remission; there is always the threat of recurrence. We will never forget about it, because it was a horrible experience that we have to live with for the rest of our lives. When you spend four months or six months or longer in the Tenth Circle of Hell, you don’t just “forget about it.” You can’t just “move on.” Don’t ask us to “move on” or “get over it.” We are more likely to “move on” from or “get over” you.

I hated….”You will be Fine!”. Basically they would say that when I expressed my fears. So they just negated my feelings. I never expected them to “fix it”, I just wanted a hug.

“But at least you can see the end coming and then it will be all over!”
Yeah right. The end of this stage of chemo, then radiation , then 5 years of an AI that will affect my mobility, appearance and overall quality of life. All those things interspersed with constant appts for scans, consultations, and further decisions as I watch vigilantly for more hints that my ILC is back! IT WILL NEVER BE OVER!

Another one: “your treatment will be over soon.” So what? I’m not suffering during the interim?

‘Well that’s all over now you are cured and you can get on with life’!!! I usually reply that cancer is not like a cold which can be cured. Or ‘you wouldn’t even know you had cancer’ Some days I would like to show the scars and the great hollow in my chest where they took all the muscle but I smile sweetly.

Look on the bright side

Remember, there is nothing good about cancer. Don’t try to point out any “bright sides.” There aren’t any.

“So what r u going to do during your time off” do they think i am going on vacation or something??? I AM GETTING CHEMO STUPID!

“I am kind of jealous that you get to take a few months off of work.”

“Oh, good! I have a chance at some new breasts, a new hairstyle, and some time off from work! I get to meet a raft of new doctors and expose my breasts to dozens of strangers on hundreds of occasions! What are the odds of that happening again when I’m stone cold sober?! Breast cancer lets me find out just exactly what my health insurance does and not cover. It pushes me to learn more about human anatomy and biology than I ever thought I’d wanna know. Before breast cancer, I didn’t have a clue how to treat bleeding hemorrhoids; heck, I didn’t even know how to spell hemorrhoid! I couldn’t have told you which parts of the body had ‘mucosal linings’ but now I can! For that matter, I’d never really given much thought to questions like: Why do my eyes stick together in the morning? How long should I keep the icepacks on my ulcerated, blistered feet? What are the most likely causes of the spasms I have developed in my neck and shoulder? What is the impact of skipping an infusion due to genital sores, a wonky infection, or low RBCs?”

My story

I wrote the following as a vent while I was still feeling the sting of a comment made by someone who has been a friend for a long, long time. This friend was with me when I went for my initial biopsy, which took hours longer than it should have –there had been a car accident and the radiologist was called to the ER just before my biopsy. But she stayed with me the whole time. Her comment really stung because it was so uncharacteristic.

***

Sometimes people don’t realize how insensitive their comments are. Sometimes, they just haven’t thought about what they are saying, and just blurt it out. Sometimes, well, sometimes I just don’t understand why they say the things they say.

Now I know that there have been people who were envious of my long hair. Well, be jealous no more: all I have is some razor stubble and some shiny patches. Revel in the that thought, ye envious types! It will be years before I have long hair again!

My friend just came back from spending the spring at her vacation home in Hawaii. She left here (the cold, snowy pacific northwest) in January, before my mastectomy. She has not been here through any of my surgeries or through my chemo.

The last time she saw me, I had long, brown hair, long enough to sit on.

When she came to visit, she saw me with the scarf on my head. She takes a look at my head scarf, then takes off her hat, revealing a somewhat thinning top — exactly as it has been for the past 5 or 6 years, by the way — but otherwise a full head of hair.

“Now you know how I feel!” she says.

I pulled off my scarf, revealing a bit of razor stubble but otherwise a mostly shiny pate.

“I think I have you beat,” I said.

At that point, I also wanted to pull off my shirt and show her my scar where I once had a breast (she has two very large breasts). I wanted to show her the scar under my arm, where the doctor took out my lymph nodes.

While she was enjoying the sun and surf in Hawaii for the past six months, I have been going through HELL. I have been trying to teach college while undergoing a mastectomy and dose dense chemotherapy. I have spend 10 days out of every 14 feeling sick, nauseous, weak, wobbly, and with the Weekend Of Pain in which I spent three days in bed, doped up on hydrocodone and crying because of the pain.

I will not have any significant hair for at least another year.

I will not have two breasts for at least six to eight more months, when I can get reconstruction.

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Becoming the Crazy Cat Lady

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The Crazy Cat Lady Trophy

The Discovery Channel offered this trophy a while back for those of us who are likely to end up with a houseful of cats instead of human companionship.

Given the terrible time I’ve had with housemates and room mates (most recently, a housemate raided my cabinet for cooking oil, knowing full well it was my stuff. He said that because I didn’t initial it, he didn’t know it was mine. Liar.)

If this is what it’s like to live with other humans, I think I will just get a houseful of cats.

That might be easier, anyway.

Where I once had a breast, I have a 5 inch scar. I have a smaller scar under my arm where my lymph nodes came out, and a scar under my collarbone on my right side where the surgeon put in my porta-cath (that’s coming out next week, by the way). I’m pretty scarred up.

My hair is only now beginning to grow back, but basically I have only razor stubble in a kind of tonsure (still not growing as fast on top). I was once very pretty, and didn’t look my age, but now my skin is very pale and dotted with red spots and an occasional red rash that looks really awful. I have dark circles around my eyes, especially when I have insomnia. I wear makeup to cover it a bit.

I’m not saying that all men are superficial, but I can’t imagine a man meeting me for the first time and saying, “Oh, I don’t care if you only have one breast and you’re scarred and bald!” I seriously can’t imagine that.

The one man who has sincerely said he didn’t care also wants to move to Nome, Alaska and live alone as a hermit.

I’ve read posts by women on the BCS forum who are dating after chemo, and it seems to be going well for them. But most of them have had reconstruction if they’ve had a mastectomy. If I get reconstruction, it won’t be until next spring (2009) when my new insurance will cover it. Let’s get real here, men want TWO boobs.

You might be able to fake the hair thing with a good wig taped on really well, but they will notice the missing boob. They will also notice that I’m 49 (I will be at the end of July) and that doesn’t help, either, when most men my age want younger women (read: Trophy Brides) with thin, hard, hot bodies and humongous silicone breasts.

Someone who looks like Angelina Jolie

I won’t ever look like this. Does it mean I’m doomed to be the Crazy Cat Lady?

Is this a good thing or a sad thing?

Will I focus on my work and my cats, and forsake human companionship?

I guess time will tell.

Last Chemo Treatment (taxotere) 6/24

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Let’s have a virtual block party!

It’s pot luck, bring your favorite food, and also share what you are celebrating, and/or just celebrate with me!

I’ll bring the cake.

I just had my LAST chemo treatment. Forever and ever. The cancer is officially GONE. They gave me a shot to boost my RBCs; the nurse told me it was a $3,000 shot (Good Grief!) but the insurance will cover it. My CBCs were in the pits last week (the 16th) but apparently were up enough for me to do some cleaning last weekend. I cleaned out my faculty office except for a few things I couldn’t carry and will need to go back for.

I feel great! (so far, but we’ll see what happens by Friday). I slept fairly well last night, the insomnia wasn’t so bad. I just took a couple of atavans and I fell back asleep. I don’t know what I’d do without that Atavan. I should get it refilled while I’m out today.

The porta-cath comes out on July 8. (Don’t click if you have a weak stomach). I think it will come out in the doctor’s office.

My last visit with my oncologist is on July 15, at which time she will release me.

On the weekend of July 20 (or thereabouts) I will leave for The Midwest, then on the first weekend of August or thereabouts I will leave for Jellyville, to begin my new job as a Visiting Professor.

We’re having a RL potluck for me here at the house –a combo Cancer Free, Birthday, and Good Luck at the New Job — and y’all are invited.

Yaaaaay!

Block party! Everyone’s invited!