Well, Thanks for Trying…I Think.

I have cancer.

This is a fact, one I cannot deny nor never will.  For the rest of my life, I will have cancer.  Even when they tell me my cancer is “in remission” –which I truly believe will happen because I have to believe it– I will still have cancer.  It might not be visible, but it will be hanging over me like a dark cloud.  I will always have to monitor for signs of it.  Cancer doesn’t really go away for patients who do not have the surgical option to cut it all out (and even then not always).  It is what finally kills a cancer patient.

Maybe because of this, maybe because I just have found myself reading more in general, I’ve noticed a lot of articles about cancer and forums to discuss cancer in.  Did you know there is an entire website to people dealing with and surviving cholangiocarcinoma?  Neither did I…and I’m still working on finding a lot of survivors.  Most posts are by family members.  There are also a ton of articles about people faking cancer for money.  That appalls me.  Sure, I’d love a bunch of money coming my way, but I still have only asked for people to donate to my cancer charity I’m Too Young For This!  I want them to continue to provide support, education and research for cancer survivors (because even if you are fighting it the group believes you are surviving) my age.  Hit the link on the side if you can support them this season.  I’m in third place among team members raising money for them!

The articles and blogs that attract me the most, though, are the ones that discuss responding to cancer patients.  In nursing school, we are required to learn how to talk to patients.  Don’t give too much personal detail, but be friendly.  When they are diagnosed, don’t use the “I know how you feel” or other such comments that trivialize their pain.  Let them talk, just listen.  Things that make sense, but most people don’t do because we feel like we need to say or do something to make them feel better.  For the record, as someone who is now going through being “the patient”, many things that are said are less than helpful.  I thought I might point out some of the things I have heard and how they affected me and then link you to further articles about the subject and some things that might be more supportive.

“God never gives you more than you can handle.”
God is awesome, I’ll admit it.  Somehow, some powerful being created some of the most amazing things.  Even taken into account my belief that evolution and God’s hand both created man as we are today, I am still amazed at the result.  Seriously, our body works so perfectly and everything in it is dependent upon something else.

That said, I heard this particular comment often and sometimes too much.  I never found it to be even slightly helpful.  For the first few days, heck even now occasionally, I found myself really angry with God.  What kind of “loving father” does this to anyone?  If He gave it to me to handle, how about He go ahead and take it away now?  I’ve learned my less.  I’m sorry.  I’ll do whatever He wants me to do if I don’t have to deal with cancer anymore.  I, also, never really felt like I was handling anything.  I was a person with cancer, but I never really handled it.  I ran through stages of grief, remained comfortably in denial and have no plans of moving elsewhere thank you very much. 

Suggestions on what to say: I’d settle for an “I’m sorry you’re going through that” or even “If you need to talk, I’m here.”  I accept prayers and I pray more now that I probably have in years, but telling me that I’m like Job being tested…well that just makes me mad.  I’m done handling this now.

“Everything happens for a reason.”
As lovely as it is to know that there is some reason I have been blessed (sarcasm intended) with cancer, it really doesn’t help to have that pointed out to me.  I don’t know what I am supposed to learn from cancer, except the joy of the side effects and multiple neoplastic drugs that can torture my body, but whatever it is I much rather would have learned it through a text-book or something.  Much like the above, all this does it make me go “What reason?” and get angry that I had to learn anything in such a way. 

Suggestions on what to say: Like above, I’m sorry goes a long way.

“We could all die tomorrow.” or “I could be hit by a bus tomorrow.”
This comment always bothered me a little as it made me feel like I was making a big deal over nothing.  Then I realized, cancer isn’t nothing.  I can and will die from it; perhaps not this time, but at some point I will end up fighting this disease again…and again…and again.  Cancer goes into remission; a few lucky people have surgery and are rid of it for good.  My type, unfortunately, was caught too late for that pleasant option.  I will fight this for the rest of my life, however long that may be.
It wasn’t until my husband uttered these very words to me, however, and an article written by another cancer survivor gave me voice that I finally had enough.  The woman writing the article pointed something out: the actual odds of my dying from the disease in my body are significantly higher than those of anyone being killed because they were hit by a bus.  Yes, many people die in accidents everyday, but the number of people who die from cancer every year surpass that.  As I also mentioned, it also belittles what I am going through.  We all could die tomorrow, but it isn’t something that is following you everywhere you go.  Everything is tainted by the thought that this might be the final whatever…
Suggestions on what to say: Same as above or nothing at all.  Sometimes, especially when I get into the depressed “I could die” mood, listening is best.
“I know exactly how you feel.”
No, you don’t.  Unless you’ve had cancer, you have no idea how this feels.  I’ll even extend that to any other fatal disease, but because you had family that went through it or some treatable ailment, you have no freaking idea what this feels like.  Until someone dumps toxins into your blood to treat you, you have no comprehension.  The side effects are terrible.  I wanted to die the first week I had the cisplatin and Gemzar.  You don’t know what it is like and I pray you never do, so please spare me the time you broke your leg or had your gallbladder removed.  So not the same thing.
Suggestions on what to say: Ditto above.
What can I do to help?” or “Let me know if you need anything.”
I will confess I originally thought these were harmless, but I never knew how to respond.  How do you say “Could you please clean my house?  My husband is super busy with work and school and some days my energy is just enough to crawl out of bed.”  Oh…I guess just like that.  Still, for me and Milo who are very independent, it is really difficult to ask for help, especially with things like shopping or cleaning.  We want to do it ourselves and we don’t want to depend on others.  Plus, you already hate to clean your own house, why would you want to do mine too?
I’ve seen in several places that other cancer survivors also have this problem.  They know that at some point they may need money, cleaning and meals.  They don’t, however, know how to ask for these things without sounding rude.  Instead, they shrug and say they’ll let you know (I am totally guilty of that!)
Suggestion on what to say: Either make a direct offer (“Hey, I’ll come vacuum on Tuesdays and Thursdays!”) or just go ahead and do it.  It saves us both the awkward moment of not knowing what to say.
“You are so brave/strong.” or “I don’t know how you are handling this so well.” or any phrase like it.
I am not brave, I promise you that.  I scream at the sight of spiders and roaches.  I hate snakes.  I do love my horror movies, but sometimes I watch those from behind my fingers.  I am not strong; I cry for no reason and can be quite miserable about this situation.  I promise, I am not handling this well.  I have completely disassociated myself from my disease and am quite clinical about it most of the time.  I’m coping and I’m doing the best I can but if I could choose not to have cancer, I promise I would.  I’d give it up in a heartbeat.  I’d take people up on their offer to struggle through this for me.
Suggestions on what to say: See all of the above (because really, those things are the best things to say to most of us going through this.)
“So and so in my family died from cancer.”
Thanks.  I’m so glad that you are giving me a detailed list of people who have died from cancer.  I needed the reminder, really.  The only time talking about people who had cancer is when they survived.  For instance, Malika’s boyfriend survived cancer.  My friend Geoff survived cancer.  Cancers that doctors weren’t sure they’d survive.  These are good stories, positive tales that remind me miracles happen.  I need those; I need the hope they provide.
But for the love of God, I don’t need reminding that I could die.  I’ve got that one, thanks.
I’m not going to remind you what to say instead 😉
“Just stay positive.”
This one makes me sigh.  I try to stay positive; I try to go about what little of my life I have control over with a good outlook.  It’s not easy and I slip sometimes.  I am allowed to slip!  I am allowed to be jealous and bitter, angry and depressed.  I’m allowed emotions other than happy and positive.  Negativity didn’t give me cancer.  Sarcasm didn’t give me cancer.  DNA did and positive will help, it gives me the urge to keep fighting, but I really need people to understand it’s exhausting to go through this and to stay positive all the time.  Please let me mope, be supportive and silent during that time if you don’t know what to say.  Let me cry.  I’ll bounce back if you give me time.
“You are going to survive this/I know everything will be fine.”
No you don’t and I might not.  I’ve pointed that out enough and have said it in response to both of these.  I may die.  I’m sorry if that scares you or upsets you, trust me I’m not really throwing a party over that thought either.  But please, please, understand that as much as I want to comfort you, I can’t.  I can’t smile and nod politely at this one because we all need to be ready for all possibilities.  I’m sorry.  I don’t want to have cancer either.
Now, I’m sure some of this sounds snippy, and I’m sorry.  I also will admit that some cancer patients hated hearing things that I loved hearing.  I loved when people said “You lost so much weight and look great.”  I’m overweight and a tumor proved, in the beginning, to be a rather interesting diet plan.  I joked as much with people.  Others, I have read, took offense.  Some even took offense to hearing people say they were praying and sending positive energy.  I never did; every little bit helps you know!  I’m hoping for a miracle; the more asking for it the better.  While I also love research and will accept info on alternative treatments, I am not going to read a book that says I need to boil potatoes in water and drink that water afterwards.  In fact, I’ve heard too much starch increases inflammation and possibly feeds cancer.  Your input is great, but please understand I get a lot of suggestions…too many sometimes.
For those interested in more information about what to say to friends and family with cancer (and probably other terminal illnesses), I found some of the best things via my cancer support group and on Google.  The Salon just posted an excellent article (http://www.salon.com/2011/12/13/how_to_talk_to_someone_with_cancer/) and Care2 had another very helpful one (http://www.care2.com/greenliving/what-not-to-say-to-someone-with-cancer.html).  Some of my fellow bloggers have some funny (and sometimes inappropriate) posts about the subject as well.  My favorite can be found here: http://www.kevinmd.com/blog/2011/12/person-cancer.html)  The author of that had breast cancer and keeps a blog called “But Doctor, I hate Pink!”  And, not that I want gifts, if you do know someone you haven’t shopped for this Christmas season and they happen to be a cancer patient, Huffington Post had a great article about gifts for patients (http://www.huffingtonpost.com/red-room/best-gifts-people-with-cancer_b_1116827.html)
Now, fellow survivors, we’re not innocent either.  Sometimes we don’t know what to say to people about our cancer.  How do we ask for help and what can we do to broach the subject with family.  I’m sure I was horrible when I blurted out “I have cancer!” to my poor husband.  If you need some advice, Salon strikes again with a great article on it found here: http://www.salon.com/2011/12/14/how_to_talk_about_your_cancer/singleton/  No more excuses!
So there you go, now everyone can try to communicate more efficiently and without hurt feelings.  Aren’t you glad I found all of this for you?

2 thoughts on “Well, Thanks for Trying…I Think.

  1. jdp64 says:

    Well THAT, my beloved daughter, sounded EXACTLY like you! It was so refreshing to finally hear what gets you going. However, I will pray for you, and I will wait for you to ask me for help. I am your Mom, and as such, you should be able to ask me for anything you may need. I am here for you, for as long as, and whenever you need me (and Dad). I know you are proud and independent, as is Milo. I know you care about everyone around you, sometimes to a fault.

    One more thing, we are HERE anytime you need us, we will not “barge in” and clean your house without you telling us you want us to. Don’t be shy, Sweetie, not with us. Whatever you need, ask for it.

    Know we love you so much it hurts.
    Mom and Dad

  2. Christine K says:

    I really appreciate your clarity and comments about this. Thank you so much for this reminder on how to connect with people on a human and empathetic level. There is a wonderful book by Marshall Rosenberg about Non-Violent Communication that deals with this, but you put it so succinctly.

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