Friday, September 22, 2017

"What to say or do with Cancer Patients"101

So after my last blog where I totally told everything I could about what not to say or do, I left people wondering what they can do.  I can't speak for the cancer community as a whole, but for me, these are some things I enjoy below.  I don't always have days where I can get out of bed for one reason or another.  It's not that I'm lazy, it could be any number of side effects for my meds.  In fact, today is one of those days.

Well, I hope you find these useful.  They are for me.

1.  "Hey Sam, want to go out?"  Me: "I'm kinda tired"......A good response would be, "you want to rent a movie and just stay in or I'll just come over and watch TV with you."  Tired doesn't always mean tired in our world.  A lot of times it means depressed and being with your friend, even if they don't want to talk, just being there, means more than you'll ever know.  Couldn't have survived my first year without my friends and family.

2.  Tell others appropriately.....respect my wishes.  In the beginning I didn't want anyone to know.  My friends didn't tell anyone until I said it was okay.

3.  Come cook me some dinner or even better, bring some yummy take-out on bad days.

4.  I have a very active daughter, offer to have her come over and hang out so I can rest.  She's always on the go and loves to be that way.  I always feel like I'm such a bore to her.

5.  Ask me if there is anything you can do to help, be specific as to what you would be willing to do and FOLLOW THROUGH.   A lot of times when people say "What can I do?", they totally mean well, I get it.  But there are a lot patients like me that HATE to put people out.  So unless your specific, I'll say nothing.  Some good examples are: "Would you like me to come clean your house?" "Can I pick up your prescriptions?"  "Can I bring you lunch" when I'm super tired would be embarrassing but amazing!

6.  Just acknowledge my feelings.  Don't tell me how I should feel.  Try to be empathetic.  I have a daily fight for my life.  I'm gonna be a little crazy sometimes, so please don't stay mad at me if I do something stupid.  Just tell me I hurt you or I'm acting crazy.  A lot of times, that just snaps me out of it.

7.  Listen.  Really listen.  If I'm talking about worries for my future or Karleys future or the cancer, don't just watch tv while I'm talking or play on your phone.  Acknowledge you are trying to understand what I'm going through physically and emotionally every day.  Don't make me feel lazy.

8.  Laugh.  Laugh with me.  Buy me silly stuff that makes absolutely no sense or do stuff that makes no sense.  My friend Brad created a character he turned himself into just to make me laugh, and he's a little crazy.  Laughter is so good for the soul.

9.  Make plans with me but don't get mad if I cancel last minute.  I'm just winging it here.  Please try to be flexible.

10.  Just because I look better or normal doesn't mean I am.  Please don't abandon me when you think I'm ok.  Because with my type of cancer, it will never be ok.

11.  Let me cry.  Sometimes I need this.  I try to be so strong for everyone but I can't.  It builds up until I go full on breakdown.  Just say you're so sorry and this sucks.

12.  Keep in touch.  Don't abandon me.  Call every once in a while to see how things are going.  I won't blog forever.

13. Talk about stuff other than cancer.  I love this because some days, when I'm feeling good, I totally forget I have it.  Those are the best days.  Don't always treat me like I have cancer unless I'm not feeling good.

Things to Say:

14 "I'm so sorry"

15.  "I care about you"

16.  "I'm always here to listen if you need to talk"

17.  "Just wanted to let you know I was thinking about you"

18.  "This sucks, I'm so sorry" - my personal favorite

Now all cancer patients are different, but hopefully some of these will resonate with some and others can learn from it.  I know I sound like a total cancer dictator, but this is the only way to get my point across.  Because for every person that thought Mind over Matter worked in my last blog, there is another thinking that way but we need more than Mind over Matter.

PS  I'm not lazy!  I'm exhausted.

Thank you all for your continuous prayers and encouragement.  You have no idea how much they truly mean.

Also, EGFR patients.  A friend of mine is starting a database where we can learn from each other different treatments and connect.  More to come, but if you are interested, please email me.

God Bless

And say a prayer for these people too.  I couldn't add all my Lung Cancer friends but I did as many as I could.  These are the ones that are living with it.  Including me of course!  And can't believe I forgot this final one.....

Surprise me with some Mexican Food!  #tacos

Monday, September 18, 2017

Scan Results and "What not to say to cancer patients 101"***UPDATED***

Well, other than my RBC count being a little high, my scans were stable this past Friday.  I got back to our poor island yesterday but am so happy to be home.  My next scans are in January.  I just feel so blessed that they keep turning out good.  I thank God for that.  But, I've written something similar to this before, and now I'm at my breaking point with it.   Remember, my blogs are not always rainbows and butterflies.

Those of you reading this that don't have cancer, I pray to God you never do.  I have an incurable disease that threatens to take my life daily.  Emotionally, that will take it's toll on you.  If you don't have cancer, please be respectful as you don't know what is going on in our lives.  We may not know what is going on in yours, but I do my best to be respectful.

I've had some things said that are sometimes meant well, but did make me want to punch the person in the throat.   Man I sound violent.   Well, here they are...just a few things you SHOULDN'T say to a cancer patient because we hear it all the time and a lot of them are BS.

1.  "You're going to be fine".....ummm, when did you become God?  Are you a psychic now?  This is not comforting.  This is aggravating.  

2.  "That's a good cancer to have"......ummmm, in what world do you live in that any cancer is good?   Mine is incurable.  I have not endured some of the treatments others have, but no cancer is good.

3.  "You're so brave"......no, I'm not brave.  You may mean well, but to me, bravery is when someone chooses to take on something scary.  I did not choose this.

4.  "Mind over Matter".....one of my biggest pet peeves.  I can't count on my hand the number of friends I've lost to cancer who had a much better outlook on it than me.   Yes, having a positive attitude helps, but it won't save you.  It's insulting to the family and friends of loved ones who were lost, like their loved one didn't fight hard enough.  

5.  "Have you tried....."......no.   I don't plan on it either.   I quit researching these long ago because it was a complete waste of time.  I'll go with the medical community, especially since I have Stage 4 Lung Cancer.

6.  "If anyone can beat this, you can"....really?  are we psychic again?  Telling me this makes me feel like a failure if it starts to spread.  Don't make me feel like a failure.

7.  "You brought this on yourself"....that one just gets a throat punch.

8.  "My grandma had your cancer.  She died"....ummmm ok.  Thanks

9.  "God doesn't give you more than you can handle"......where is that in the bible?  He wants you to lean on Him but you CAN get more than you can handle.  

Like I've said, I think most people mean well.  Most mean well.  Just wanted to emphasize that "most".  Some just think they know everything.  So, unless you have cancer, or another terminal disease, or are a caretaker, please refrain from the above.  You cannot relate.  Having cancer is a full time job.  It is physically and mentally exhausting.  You lose friends more than you can handle.   But I don't have to tell this to the people on this "Journey".  Which is another one that bothers me.  Journeys should be fun and full of travel.   Not sleeping the day away or getting overwhelmed with a few house hold chores.   

In the meantime, I'm going to keep my positive, but realistic attitude.  I feel that if you can't handle the nature of the situation, it's better if you move on, but don't insult me.

Thank you for your ongoing prayers and support.  I just know so many who are fighting for their lives and the last thing they need to hear are the above.  Emotionally, it takes it's toll, a toll that is so great, some days you can barely go on with it.


So, after receiving so many comments, here were a few that were requested.

10.  "God has a bigger plan"....ok.  Just because I believe this, doesn't mean you do.  This is where you don't want to shove religion down someone's throat.  Also, I don't want my daughter thinking it was God's plan to take me out.  I'm sure I'll learn everything on the other side, but saying this to people who are dying or just lost loved ones can have an adverse effect on their feelings towards God.  Because, what God would allow this to happen?  This takes a lot of time to get right in your head even if you are a religious person.  So, just consider who you're talking to when saying this.

11.  "You look great or You don't even look sick"....I don't mind this so much either because I'm a weirdo that loves the shock value.  I mean, a bit morbid, but I have to have a little fun in my head.  However, some people get offended by this.  Also, just because we don't look sick doesn't mean we aren't desperately fighting for our lives.  It's almost like they're saying "you must be doing well because you look so good".  Not always true.  Some days I can't even get out of bed, but when I do, I go around shocking people.

12.  "Never Ever Give Up"....ok.  Jimmy V's speech was one of the most inspirational speeches I have ever heard and makes me cry every time.   But, I think people take it the wrong way.  Some come away with it implying that if you stop the torture of treatment you are giving up.  One must consider quality of life over quantity of life.  This probably gets to the more religious of us, because we know, as Joan Fong said, "see you on the other side" is better than the torment we go through.  I think he meant it in a more mental sense.  Because sometimes, there are no more options for treatment or you want to LIVE the rest of your life.  That is what I took from his speech.  So, just consider who you're talking too when saying this.

All this being said, I'm sure you're like, "Well, what the hell do I say?"  I've linked a website to a designer of cards for cancer patients.   Stuff similar to this is good.    "I'm sorry, that really sucks" is good.  So here is a link to some cards....and I think most of them are spot on, and they are kinda funny.  Google is also a good place to look. Here is that link:  What we want to hear  Peace!

                                Just a few examples of when "Mind over Matter" didn't work.

Monday, September 11, 2017

Faith, Hope, and Love

There are many things that happen in our lives, beyond our control.  I remember 16 years ago, working in a doctors office and going to GA State.  I heard the commotion from the waiting room when the first plane hit.  I arrived in time to see the second hit.  That's the day I think I lost my sense of security and innocence as to what was going on in this world.  I was only 21.

I can't think about that day and not cry for all of those people we lost and the families they left behind.  I think a lot of us have forgotten our way.  Days like today help bring that back.  I was blessed to be able to visit the site Christmas Eve.  It was hard to look into the pits without crying.

You see, I woke up this morning, stressed about my house, stressed about scans Thursday, stressed about another hurricane coming.  Yet, these are material things.  What was lost on this day 16 years ago doesn't compare.

We all have hurricanes going on in our lives, but we have to remember that Love is greater and we will overcome.  Thank you Lord for sparing our lives, our material things, and everything you've given us.

Thank you all for your continuous prayers, please pray for scans Thursday and my friend who is not doing well still and all the people affected by Harvey and Irma.  I know it may seem like you've lost everything, but I still believe that people are inherently good.  I believe the country will come together to help those that lost all of their possessions.  I've added a few pics from St. Simons Website of the island.  We aren't able to go home until further notice, we had some damage to a vehicle, but not nearly what others had.  Schools are closed through at least next Monday.

Giving it to God.   God Bless.