Tuesday, December 11, 2007

Seen on Craigslist: opinions, please

Here's an item I found on "The Best Of Craigslist":

Cancer Rant
Date: 2007-10-31, 9:31AM PDT

In February of this year I was diagnosed with advanced Hodgkins Lymphoma. I went through eight months of chemotherapy, everything looks really good, and now I am just waiting my post-chemo scans to indicate remission. I am finally done with chemo. Woop woop. This is very good news for me. I’m real happy about it and I am excited to get on with my life.

I was a good cancer patient…no, a great cancer patient. I was tough. I didn’t curl up in a ball and hide, I faced it, I sucked it up, and got through it. I’m not looking for a medal, I just want to preface what I am going to say with the fact that I am not whiney or self-pitying, and that I realize that I am not the only one who’s had to deal with this crap, and that there’s worse things that could have happened to me. I have a wonderful family and caring friends that have formed a very lovely support system for me. I cannot thank them enough for all their help and love.

That said, here’s my rant…This goes out to everyone I know – friends, family, co-workers, doctors, nurses, radiologists, technicians, friends of friends, exes, and others…

1. There is no “good” kind of cancer. Yes, this kind of cancer at my stage has an 80-85% survival rate. That’s great, I am happy about that – really, I am, but that doesn’t make it “good” or any “better” than any other kind of cancer. Cancer is a scary thing, the treatment is excruciating, and at the end of the day, if you happen to get “lucky” and be one of the 15-20% that don’t survive, that statistic turns from a “good” one to a not-so-great one. Really. That’s like one out of five. Can you think of five friends? Picture them. If one of them up and died would you consider it a “good” number of them? I didn’t think so. So please, don’t tell me I got the “good” kind of cancer – don’t even suggest it. Don’t even say, “Well, at least you didn’t get _________ cancer, that would really suck.” Uh, hello, this pretty much REALLY sucks. Next time you get cancer I’ll ask you if you think the kind you got is “good”.

2. Don’t tell me things I don’t want to hear. For some reason, it occurred several times that when I told someone what I was going through (which is kinda awkward anyway), they would say something to the effect of “OH, my (mother, sister, aunt, grandmother, insert any other relative or even remote acquaintance here) just died last year of cancer.” Or “Right, my (insert distant relative here) died of Hodgkin’s.” What the hell?? I have been diagnosed with a terrible disease and am undergoing intensive and debilitating treatment, and you’re going to tell me about someone dying? What? Seriously? It’s better just to not chime in here. Again, next time you get cancer, I’ll try this line out on you and you can let me know what you think.

3. DO NOT ask me about my hair. With the kind of chemo I had, my hair started falling out around treatment #3, slowly at first, then lots at a time until I finally, and very sadly, shaved my head. THAT WAS REALLY HARD TO DO. It’s about a lot of things…it’s about vanity and feeling ugly, it’s about the stigma of being sick and that being obvious to the world, it’s about knowing or not who you are without your hair/eyelashes/eyebrows, it’s complicated. And, I take ownership of the fact that some of that is really superficial shit – but it’s very real and it’s emotional. So, comments like “How’s your hair doing?” “Wow, it’s really thinning out!” “So is your hair just coming out in handfuls?” and “Is that a wig?” are not helpful and WILL make me cry. If you think this is stupid or oversensitive, let me say it again: next time you get cancer let me know how this goes.

4. Don’t tell me it’s going to be ok. Bottom line is this – I know I want everything to be ok, and I know you want everything to be ok – you wouldn’t be my friend/involved family member if that weren’t the case. Unfortunately, we BOTH know that it just might not be ok. We BOTH know that there exists the possibility that it’s not going to be ok and that the disease isn’t going to respond, or is going to come back, and that even if I am tough and brave, it could kill me. I have had to deal with that idea since the word “cancer” came out of the doctor’s mouth. In that moment, and in the hours and days to come, I knew that it could happen that everything was not going to be ok. If I didn’t know that, cancer wouldn’t be such a big deal. If that weren’t a possibility, we wouldn’t have shed tears when we heard the news. So, for my sake, don’t say that line. I know it’s the first thing that comes to mind, and I know you mean it well, but try something else that actually means something, like: “Whenever you need anything I’ll be there” or “This is going to be rough but I’m here for you” or “I’m on my way over with a last season’s Top Model” or even just “Give ‘em hell, sista”. I know you may not get it, but next time you get cancer we’ll share profound understanding when I tell you that I know it may not be ok and that I know that’s real scary.

5. Don’t comment about my weight. Ok, here’s something that I didn’t know before I started this. Chemotherapy is NOT a weight loss plan – YES, they have indeed discontinued all the fringe benefits from the cancer card membership. Turns out, they give you steroids that make you hungry all the damned time. And, you feel like complete shit and don’t even have enough energy to walk up the stairs, much less to exercise. In the beginning when I was still trying to figure out how to deal with shitty side effects like constant vomiting, painful mouth sores, etc, I lost weight because I just literally couldn’t eat. But once I got that under control, the hunger would come on, and man, I can eat a lot. I was in pretty good shape (at the gym five days a week, healthy foods, etc) when all this started and now I have gained weight and am up a pants size. The once-muscle has turned into mushy fat and I’m not happy about it, but during treatment there was just no fix. So, the “wow, you’ve put a couple on, haven’t you?” or “I thought you lose weight on chemo” comments are not helpful and again, will make me cry. Next time you get cancer, see how you feel when I tell you to “hit the gym.”

6. Chemotherapy sucks. I think everyone knows that – I don’t know what the first thing is that pops into your head when you read that word, but I would venture to guess that it’s not something warm and smiley. It sucks, it really sucks. You vomit, are nauseated (which is so much worse than vomiting) all the time, you get terrible headaches, you can’t sleep, you get sores in your mouth and chronic yeast infections, you get seriously seriously constipated, your brain malfunctions and you can’t remember how to get to the bus stop or where you normally leave the toothpaste, your whole body hurts, your toenails fall off (wtf? Yeah) and now they give you shots to stimulate white blood cell production (at least in my case) that cause relentless, incapacitating pain that made you simply want to give up on living just to make it stop. Ok, I said it, chemotherapy sucks – and I am really good at being tough and not letting everyone know all the shitty stuff that’s happening to me at once, but you know it sucks. So, no, I am not interested in hearing you whine about a cold you think you’re getting, your scratchy throat, your eye/ear/sinus infection, your sleepiness, your headache, etc. I know you really don’t feel good, but c’mon man, suck it up – or at least go tell someone else who doesn’t have cancer. Next time you get it, you’ll drop kick the asshole that spends ten minutes talking about how bad their hangover is.

7. It’s a REALLY long road. Eight months is a long time to be sick. It just is, and I KNOW (I really know) that it gets old. In the beginning everyone called all the time, offered to go to chemo with me, sent lots of e-mails, came over to visit when I was sick….but after the months drag on it’s like people get sick of it. I understand that – ‘cause I got pretty sick of it too. I got sick of calling in to work, not doing anything fun, not seeing anyone….even just answering the damned “How are you feeling?” question….I felt like it was better to lie and say “fine” than to say how I really felt because people kind of don’t know how to react or don’t want to hear it. I have a wonderful husband and mother who took exceptional care of me, even when they needed a break, even when it got old, even when they got sick of hearing me say I felt like shit. They did that because they knew I needed them. I needed other people too, I needed girlfriends to just come over with a movie or a dvd of a funny tv show, or to call me on the days they knew I had treatment, or to just call when they hadn’t heard from me in days. Some did and some didn’t. You know who you are and why you didn’t. Maybe you didn’t feel comfortable or maybe you were too “busy.” Regardless, I love you, and I will do it for you the next time you get cancer.

I really, really hope you never get cancer. I mean that for everyone – even if you’re a jerk, even if you write to me and rant meaningless bullshit about my rant, even if you really deserve to have something nasty happen to you – I hope you don’t get cancer. It’s awful. I’m not one of those “I’m a survivor!” types, I’m not one of those in-your-face super tough post-cancer freaks, I’m really normal and I will get over this. That said, if you do get cancer or if your friend or (insert any relative here) gets cancer, you can bet your bottom dollar that if/when I hear about it I’ll be on your/their doorstep with a big teary welcome to the cancer club hug and a mop and bucket to clean the floors, or popcorn and a dvd for the kids, or dinner so you/they don’t have to make it, or whatever it takes, for as long as it takes – and you won’t have to ask for it, and you won’t have to say thanks, because we’ll both just know. It’s a special club and we take care of our own.

Now then, you who have had cancer, or have had a close family member with cancer, I'd like your thoughts:  Do you agree with this person?  I'm sure not everybody thinks alike under the same circumstances.  But I certainly want to know the right thing to say to people who have cancer; I wouldn't want to compound their problems!

By the way, I found several other people on the Internet address this question.  You'll find one person's views HERE.  If you go there and read it, be sure to look at some of the comments, which are as helpful as the blog entry itself.


magran42 said...

I really wish she had given more of "the things that should be said".  When people send in their suggestions to you......Please make them available to us!  A lot of the things she hated, I would have said and I really don't want to inflict more pain on someone already hurting.

breakaway1968 said...

WOW and again I say WOW!  Ya it IS so hard to know what to say to someone who has cancer and I know it's hard..my MIL has/is suffering from it right now.  She has had it three times now and was on Cemo all three times.  Her new cancer now is brain cancer!  Yes, it's hard and NOOOO us who have not had cancer don't know how it feels BUT we try our best to comfort and be there for the people who are suffering from it.    I'm sure that if the people she is talking about in this rant reads this they  will be hurt and think OH my I didn't realize...because honestly we DON'T know what to say.  I can certainly see how and why this person is upset...yes, some of the things in here ARE things that... if you have any common sense...you should not be saying to a cancer patient.  However, some of the things like telling them they will be ok for instance...I would think that they would only be trying to help make her feel hopeful with that statement not mean any disrespect at all!.  These rants are what makes those who don't have cancer afraid to confront those who do because what if we make them feel bad??  I know I would not want someone to get sad who is already fighting a terrible deadly disease to feel even worse!  SO, what DO we say to them?  They are right when they says just bring that movie over and lets have a  movie night...I'm sure that would be a great thing to do when someone is down.  That is a great idea!  It is nice that they also add what we CAN do to help.  
Boy, I sure hope THIS comment doesn't get anyone angry or make anyone feel hurt by it because I sure don't mean anything hurtful by it at all.  Just my opinion on the rant is all!  And my heart does goes out to those suffering from this horrible disease!  It is so hard watching someone suffer EVERY single day for so long!  I sure wish I could take My MILs pains away if only for a day!  I would s

riverdaughter196 said...

Yeah I would have to agree with some of it.  Chemo sucks.  But at least that person has the option of chemo.  My father didn't.  He also didn't have the option of radiation.  Doctors sent him home stating there was nothing to be done.  At least that person gets to fight it.  He/she had that option.  Some cancer patients don't.  

helmswondermom said...

I think this person expressed her feelings very well and she gave us quite an insight into what she'd gone through.  A lot of what she was saying to NOT say I'd have thought would have been obvious, but maybe not to some people.  I know from my own end I often worry excessively over what to say to someone fighting cancer.  We could all, probably, inadvertantly say something unthinkingly "stupid", and we're going to have to be able to forgive ourselves if we do that.  But I think when someone going through chemo or other treatments can let us know what this lady is letting us know it helps us to be more caring and considerate in what we say.  I can remember a woman once saying that when she had a death in the family her neighbors came over and without asking or explaining or waiting to be told, they cleaned the lady's entire house, and they stocked the refrigerator and pantry.  When the family got home from the trip to the funeral they had a well-stocked and clean home.  Sometimes, like this woman says, just being there is important.

mutualaide said...

Hmmm.  I think just jumping in and doing what needs doing without a word is pretty effective and helpful.  I applaud this woman's willingness to put her feelings out there because the reminder to me is 'think before you speak'.  But I also remember we are all only human and we are all imperfect.  Maybe some credit should be given for 'the trying'.

csandhollow said...

I have not gone thru it. I do know people that have. I heard them same thing from some of them also.
I know that when I broke my back,people would say to me at least you can walk and you are not in much pain. What did they know? Could they feel my pain? ARGGGG

cvgflydis said...

I think that the post is appropriate! My Mom had cancer~and it took her from us. She felt like shit most days, but never let on........always said, "I feel alright". I knew she felt horrible, but knew she worried more about us than herself.

The most astounding thing to see, for me, while she was ill, was the amount of food that came into her home. I thought it was a lost art, honestly! And I cannot tell you how much it helped myself and my Dad! We were able to concentrate on her care, and not dinner. No need for grand menu's..........homemade soups, store brought deli sandwiches........bottom line, we didn't HAVE to cook.

I miss her everyday. Every Single day. I think this post would summarize everything she felt and more.


sugerb6 said...

I respect each individuals thoughts on what to say and what not to say to someone who is dealing with cancer. We all cope differently with what life throws in our path. That being said, I feel this person carries the burden of much anger within their heart. It seems to be directed more towards the persons who have tried to reach out to them than it does the cancer itself.
As a caregiver to my youngest sister throught her cancer journey, there were times it took quite a toll on me. Holding back tears as I walked out her door, crying all the way home, it may sound selfish, I needed a few hours away from it. Gasping for breath before I could start my car to once again return and allow her to gracefully lead us through her illness and death. Amazing!..the outpouring of love from the community which we grew up, visits from those who's lives she had touched, the daily cards she would receive in the mail put a smile on her face, the abundance of meals prepared and brought to her home for our family.
My sister's cancer touched my life in such a way, I feel the need to reach out to others. Though some may view it as common sense not to speak of lost loved ones who have passed to someone who has been diagnosed with cancer, I have not found that to be the case. I have been embraced with warmth and kindness. If I can help one person on their journey with cancer, my sisters death may give another the inspiration they seek on their journey.