Thursday, February 28, 2013

Cancer and the questions people ask

What is the dumbest thing someone has said to you about Cancer?

You're so lucky.  You're going to get a free boob job!  (Yippee)

My friend is recently diagnosed with breast cancer, and they said her chemo will make her lose her hair.  How do I respond to that?  What should I say?

First let me tell you what not to do.  Don't ignore her.  Don't look at her like she is transparent.  Hair is not as important as we first think, but it is an extremely emotional point of your treatment.  Up to this point, you have felt okay and you look okay.  But when the hair comes out, you suddenly LOOK ill and it seems that everyone looks at you with pity.

DO comment on her scarves, hats, and wigs if she wears one.  When you are going through chemo, the loss of hair and all the aches and pains that assault you, it's easy to lose self confidence.  I was always fidgeting with my accessories.  Did they help me look better or did they draw attention to my lack of hair.

One great thing is to let your friend know she looks great.  I don't mean to be falsely positive.  But when you see them step out in public particularly those first weeks after the hair is gone...well it's scary.  You feel like everyone is paying attention but not in a good way.  Even your loved ones are concentrating on your head, like they are trying to see under your scarves and wigs.  So having someone tell me that my hat was spiffy, or my wig was realistic, or my scarf was made me feel less self conscious.  No one wants to feel like the elephant in the room.  So my hair is gone.  I may not plan to whip off my hat and show you, but to ignore my head, to avoid my eyes makes me feel more defective than I already think I am.

Did you learn anything from having cancer?

I finally learned that God loved me.  When I could do nothing to "serve" Him, He was still at my side.  I learned who my friends were.  I learned how I never want to be treated.  

Why do you refuse to call yourself a "survivor"?

To me, a survivor is someone who has won a war, who has completed a task.  It's like the battle is over and I can hang up my weapons.  But I feel like I'm still in battle.  I call myself a warrior, because I'm still fighting.  It's not enough to just be aware or alive...but I have to fight cancer and it's effects on me daily.  I take my meds and I'm diligent in paying attention to updates and advances in treatment.  I also have reached out to help other women going through listen to their fears and share what I experienced.  It helps to have someone else tell you what will be happening next or if it's as bad as we imagine.

My sister is going through chemo treatments.  I have called and asked to take her out to dinner.  I've invited her to go shopping with me.  I offered to bring her some crafts to do.  She won't let me DO anything for her.  Why won't she let me help?

Because she's exhausted.  You wanted to take her OUT to dinner.  She has to gather the energy to dress, to get out of the house, to deal with her head, to be pleasant AND to chew.  TAKE dinner to your sister and sit to chat while she eats.  She can do that.  She will be willing to have a visitor.

She's not likely going to go shopping.  Even on a good day, her ability to handle a day of shopping is going to be very unlikely.  Having experienced all this, I know how quickly you can go from "feeling okay" to "take me home right now."  We HATE being a inconvenience to other people.  So someone going through chemo is going to be acutely aware that if she gets miserable it's going to force you to change your plans.  She's not likely to go out even on a good day, unless you have a specific plan. If your sister has breast cancer, don't invite her to go bra shopping.  It's kind of a slap in the face.  Don't take someone with lung cancer to a smoke shop, or with ovarian cancer to a baby store.  EVEN if she's done having babies it's an in your face reminder of what she's losing.

I wrote elsewhere on things you can do for people when you want to reach out. 

Personally I enjoyed the occasional visit with my own sisters, or when they dropped off a dinner, or movies and books.  But you mention crafts.  Frankly, a craft sitting in front of us screams FINISH me!  And when we are too tired, it screams "Look at your lazy self, can't even glue Popsicle stick!  You are a wienie and a loser!"  Books and movies are okay because they don't scream UNFINISHED to everyone who walks into the home.

What is the worst thing you can say to a person with cancer?

Hmmm.  There was the lady who told me I was so lucky to have breast cancer.   She told me I'll get great boobs from it.  I'd like to show her my great boobs now.  The honest ugly truth is most people hear breast reconstruction and they mentally picture Pamela Anderson and other implant wonders.  But reconstructed breasts are "breast LIKE" but you don't really get a boob job in the traditional sense. They happen to sit on your chest wall but other than fitting in a bra and filling out the darts on your clothing - they don't look or feel like breasts.  They have no more sensation than the inside of your arm, and they have flat fronts.  Many women go into breast reconstruction believing they will look normal afterward.  Which usually means "what we used to look like".  The reality is...that doesn't happen.

Another bad...don't ask "How much time did they give ya?"

And if you HAVE fought cancer yourself, don't encroach on their experience by focusing on your treatment and response.  Giving advice on something that worked for you is great.  But I've had a few experiences where it felt like that other person was intent on telling me how much worse they were, that they experienced more than you did, and I wound up feeling like a wimp, and not encouraged at all.  A person in battle needs encouragement.  No criticism of any kind...keep your CONSTRUCTIVE criticism.  And Christians resist the urge to spiritualize every darned experience.  You do not have to defend God...this is a fallen world and bad things happen to wonderful people.  We don't need to hear about how God has a plan in this.  We don't need to hear about how He will be in this with us.  These are all true, but in your attempt to defend WHY this is happening, you are simply reminding us that for some reason WE are going through this and you are not.

What was the hardest thing you went through in your treatment regiment?

Radiation.  It was getting up 5 days a week and going into town to lie on a table that shot beams at you that burned, blistered and eventually split my skin.  It was excruciating pain and I went in daily to do it all over again.  The worst sunburn of your life over and over.  The fatigue it creates greatly overshadowed what chemo did.  Chemo was bad and would get better.  Radiation is easy to start with and gets harder every day.  The good thing was my skin recovered quickly afterward, even though I peeled like a snake for about 2 months.

A coworker shared that she has cancer.  Is it rude to ask what kind?

I don't think so.  But don't make extra comments like "Oh girl that's the bad kind."  OR "that's the good kind", or your aunt Silvia's "best friend's daughter had the same kind and she's dead now."  There's no good cancer, and we are desperate to hear about those who successful gettng through it.

How can I encourage a friend who recently found out she has cancer?

Anything you want.  A small gift, an invitation for lunch, offering yourself as a driver to the numerous appointments you have at the beginning.  But one important thing.  Let your friend set the pace.  If she doesn't want to talk about cancer then talk about something else.  I remember in those first weeks, everything was about cancer and telling people about your cancer.  One afternoon, I had to do something that had nothing to do with me.  It was a joy not to talk about cancer for once.

My brother's girlfriend is going through chemo.  We're meeting for lunch and I'm really scared I will say the wrong thing.
I would tell you to treat her just like you always have.  Don't avoid the "C" word.  Ask her how she is doing.  Compliment her appearance, focus on something...when we go out, we are a little insecure and we spent a LOT of time preparing.  We want to know that the effort was worth it.  Don't be afraid to compliment a wig, scarf, hat or bald head just because it's part of her treatment.  WE know we have cancer.  Your compliment or question isn't likely to cause us to run screaming from the room.  It's worse to be treated like the giant elephant that everyone knows is there, but no one will address.

What is one word you would use to describe your cancer treatment?

Pain.  Wretched.  Torture.  Torment.  How many one words do you want?

So you had breast cancer.  Did you opt to get the boob job?

I have reconstructed breasts, but it would be wrong to call it a boob job.  People equate boob jobs with the buxom image of strippers and playboy models.  Reconstructed breasts do NOT look that.  They can have weird shapes, they are flat and round...think "fluffy pancake".  They do not project like a normal breast, as they are NOT normal breasts.  Whether they are saline or silicone filled, whether they are sculpted from body fat - they do not contain the structure of a breast.  Don't get me wrong, plastic surgeons are creating masterpieces for some women.  It takes a LOT of surgery to do so.  There are years of surgery and recovery.  I have an acquaintance who has reached her "finished product" after 3 years of surgery.

What was the most annoying thing about having cancer?

I struggled with everyone's expectations.  Some told me I had to stay positive.  Others told me I HAD TO BEAT THIS.  Other's told me it was some kind of spiritual battle and I would receive some kind of extra blessing in accepting everything that happened.  It felt like everyone was telling me how I had to "do" cancer.  The wise word from my Dr. Joe Muscato was that there was no wrong way to "do" cancer.  There was no right way either.  You just get through however you can.  Everyone was projecting THEIR fears and perceptions upon me and I somehow had to find my way through them to "do" cancer the way that I felt I would survive.

What was the most HURTFUL thing about having cancer?

It was something that took me by surprise.  I had someone I considered to be as close as a sister, suddenly drop all communication with me.  No calls, no cards, no text messages.  She simply dropped out of my life.  At first I didn't even realize it when I found each day was so hard to face. Then one day I felt her absence acutely.  I sent her a message and still heard nothing.  I was extremely hurt.  Then I read this was not that unusual.  People who can't handle your cancer and they distance themselves from the reality of what you are going through.

So what happens then?  Well it damaged our relationship.  I think I got a Christmas card from her, and a text message about a surgery.  I answered her question kindly, but left it at that.  I didn't trust enough to share my struggle with her now.  Forgive her, I can do.  Trust her again and believe she will be there?  Not likely to happen without seeing some major commitment on her part.

Does anything good ever come from having cancer?
Perhaps that I learned I can do a lot more pain and fear than I ever knew.  I learned I was stronger than I ever knew.  I learned that the man I married was faithful, strong, gentle and dependable in ways I never thought to consider. During radiation, my future daughter in law stayed with me.  She cooked, cleaned, made me eat and helped me dress when things got bad.  During that time, she opened up to me and we bonded.  She was born in my heart.  That was something good and wonderful.   I learned that a great many people loved me.  But something good??  Not sure I can show you something GOOD.

How did you cope?

My sisters were very supportive.  My church was there with meals.  I would say that I had the most loving care from my husband.  Without him, I'm not sure I could have coped.  When the pain was so great, he held me in his arms, he sang to me and gave me strength.

Another factor was my faith.  Not that God delivered me from fact I spent a great deal of time quite angry with him for letting this happen.  My mother was dying from liver failure and I had planned to be there caring for her.  But I woke up each day, telling God I needed HIM to get me through that day.  And then on March 6, 2011 it was over.  I had gotten through the most difficult part of active treatment.  Now I had to redirect my focus on getting my life back, on finding out what I was capable of.

One dear friend gave me a framed print of the "Footprints" devotion.  I had people coming at me from all directions telling me how I had to "do" cancer.  They were interjecting their spiritual views upon me, spiritualizing the battle, telling me how I needed to write a Bible study while going through all of this.  Then this wonderful friend gave me this message that it was perfectly fine, and perfectly spiritual enough to rest upon God's shoulder and let him carry me through this.  THAT was how I coped, by doing nothing but let myself be carried through it by God's grace.

Do you love your new boobs?

 If your house burned down and you got a new one would you be SO excited?  No. You would be grateful to have a new home but something was lost along the way and that's what I finally realized about my implants.  I'm grateful that there is something that fills out a bra and makes me feel feminine where mastectomy bras and prosthesis did not.  Do I love them?  No.  Do I accept them and appreciate this chance?  Yes. 

What advice would you give a woman newly diagnosed?

That encompasses a lot a different information.  Assuming we are not talking about steps to take concerning her diagnosis, and looking at more general advice. I would say

1.  There is no right or wrong way to do cancer.

2.  Accept that you cannot control cancer, and then accept help from anyone who offers.

3.  You will be stunned by some of the acts of kindness from some people, and you will be hurt by the callousness of others.  Accept those acts of kindness, and then accept that some other people just can't handle cancer.  It's not you in this case, it's your disease and their lack of character.  Be prepared to be knocked to your knees by the thoughtfulness and generosity of different individuals.

4.  This is one of those unique opportunities to step outside the restrictions of your personality, upbringing or expectations.  Everyone will overlook and forgive any faux pas you commit against the fashion police, or standards of public conduct.  Skip down the mall, singing Show tunes will be forgiven because "you have cancer, poor thing".  Wear red and purple together, and they will forgive you because "you have cancer, poor thing" and whatever makes you feel better is fine.  Wear gaudy scarves and ugly pins and they will forgive you because, "you have cancer, poor thing."

5.  Try to find something in your battle that makes you feel, Scripture, prayer, even continuing to work if you can.

6.  Don't be afraid to admit that you need rest.  You can't do everything, but if you want to do something specific make a contingency plan and try it.

7.  You have to give up control of nearly everything.  You eat what stays down, not what is on your diet.  You can exercise, but you might not be running your 5k runs.  Your kids are going to need a lot of assistance, and you are going to accept that you can't be everything to everybody.  Some things are going to slide.  You will be thankful when someone reaches out to your kids.

8.  Love your oncologist.  If you don't trust him, then he is not your oncologist regardless of what everyone else says about him.  I was told that my oncologist AND my plastic surgeon were "solemn" and humorless.  I found that with ME, they were both funny, easy to laugh and serious cutups.  If you have a recommendation for a doctor who is skilled but has a questionable bedside manner, give the doctor a chance.  I found that doctors relate to patients, just like we relate to friends.  We laugh a riot with one friend, but we're a little reserved with another.  Doctors are people too.

9.  Don't under estimate what is happening to you.  Cancer changes everything and you might as well accept this.  Cancer treatment, chemo, the surgery, radiation if you must do it...all these things have lasting effects that will change your life.  Educate on those changes and learn to adapt.

10.  Find a support system...not just a care taker.  Find other people who have had cancer and they have survived the treatments.  Find out what helped them, what messed them up.  Find out what they did to cope.  What side effects were harder to deal with and how did they address it.  Find out how they came to make the decisions they made.  And girl, don't be unwilling to accept any offer they can give you.

No comments:

Post a Comment