In the Air!

In the Air!
400 feet above the ground in Orlando.

Florida

Florida
Taking my first step towards a new life.

Virginia

Virginia
Spending an afternoon at Marymount during my internship!

My rocks!

My rocks!
Wouldn't be where I am without my parents!

Graduation

Graduation
Walking for my Masters. An interesting book end as this all started when I graduated from undergrad!

Awesome Nurses!

Awesome Nurses!
After my port removal and saying goodbye to my chemo nurses before moving away from Michigan. Wouldn't be doing that without them!

Hair again!

Hair again!
Growing longer each day

Last Chemo

Last Chemo

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Silliness

Silliness
Something to remember and return to. A good day!

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Sunday, March 23, 2014

Some Do's and Don'ts Around Cancer Patients

I have seen several blogs written about what people going through cancer are really going through and also what their family and friends can do to help and things that don't help.  So I thought I would put my own two cents in and maybe it will help someone else.

1.  When a person first finds out they have cancer, the entire world just disappears.  In that moment all you feel is shock, fear and like you are standing in the middle of an empty football field.  You kinda hear voices but they are far away.  I remember I had to ask the doctor to repeat what he had told me at least three times…I might have even asked more.  At that moment, the best thing you can do for that person is hold them.  Don't tell them they can cry (trust me, that IS coming).  Don't say anything at first because chances are, they won't hear you.  Just be there.  The physical contact is what they need at that moment.

2.  Let them be scared!  It's pretty terrifying!  Wether the diagnosis comes with a surgery or not, they realize that life as they know it is going to be completely different.  Again, just be there for them.

3.  Every chemo is different and every reaction is different.  Just because they may not throw up all the time doesn't mean that they are having an easier time of it!  I never threw up…but that wasn't because I didn't want to!  That was A LOT of anti nausea meds and sheer force of will!  There would be days (not hours, days) where all I did was lay in bed and lay perfectly still because if I moved at all, I would have to make it to the bathroom before the very little amount of liquid in my stomach came back up.  I say liquid because eventually, any solid food for a week after chemo was taboo!  Just check on them and for heavens sake, don't ask them if they need anything!!  They can't think of anything but not getting sick.  Make them drink water every half hour and if you can handle the flavor, a protein mix in water will help a great deal!

4.  The question "How are you feeling" is going to be answered the same way…crappy.  So don't ask.  After a while they will just answer "fine" to stop the sympathetic looks come over your face.  It isn't that we don't appreciate the concern but the healthy person looks so upset that you find yourself comforting them!

5.  BE SILLY!!  For goodness sakes, tell jokes, try to make them laugh!  Depending on how they are feeling, a small smile could be the equivalent of you rolling on the floor laughing, they just can't get the energy to do more than smile.  That smile is what makes them think "Ok, I can keep going."

6.  Stay in contact.  I highly discourage calling a person during chemo.  The hardest thing in the world for me was talking on the phone.  A one minute conversation was like winning an olympic medal for me!  But thanks to modern things like texting and social media there are so many ways you can stay in touch!!  I had one friend who would text me every day.  All day.  I couldn't always respond but his texts of his day and what was going on with him were quite literally a life line for me!  Text them, email them, Facebook them and don't expect a response.  No response doesn't mean they aren't getting the messages.  Chances are they are reading them over and over again and will respond when they can!  And lets not forget that old fashioned thing called the Post Office.  Letters, little packages, notes…these are things that quite literally can make the difference between bursting into tears and wanting to give up and feeling like you can keep going on.  I remember I got a box from a friend of a friend and in it were hand made hats, nail polish, mints and other fun little things. I got that box shortly after chemo and on a day that I would normally have only been out of bed for five minute stretches here and there…I was standing up going through the box and trying on the hats for over a half an hour!!!  I was so excited and touched that when my body started to shake (my signal that I better lay down fast or I was going to fall down) I couldn't believe I had been standing up so long!
I think I can understand why some people fall out of contact when someone they know gets cancer.  It is pretty frightening and most people don't know what to do.  Even family members sometimes.  Just, fight against that feeling if you can and keep that person in your life!

7.  Come to visit but make sure the person is able to visit and don't come sick!  Although, the occasional surprise visit can be helpful too!  My brother-in-law and two nieces came for an afternoon about five days after chemo.  Again, normally I time I was still spending more in bed than out.  I found myself walking around outside and talking.  Only laid down once while they were here!  Just having family come visit gives you a burst of adrenaline that gets your endorphins going!
Normally when you visit, expect to be sitting next to the person as they lay in bed or on the couch.  Don't ever ask should I go or do you want to sleep.  They will tell you if they need to rest.

8.  Remember that once chemo is over, they aren't automatically better.  It takes months, some longer than others, to regain their strength and energy.  And that is a very slow process.  I thought my nurses were giving me a worse case scenario when they said to look for improvements month to month and at first, they won't be very big.  They weren't!  You don't "bounce" back from chemo.  Depending on the drugs used and your body's reaction to them…you find yourself crawling back from chemo.  I was told the chemicals they put in me would take 6 months to flush out of my system.  For 6 months after chemo, you are still being poisoned…just not as intensely.  Recovery is a process and they still need you during that process.  Maybe, in a way, more than during chemo.  Because now they aren't being systematically smacked down.  They ARE getting better.  But they still can't do so much of what they use to.  However, they aren't drugged up anymore.  Having people around them to talk to or do little projects with as they get stronger is very important.  But again, don't act sympathetic or empathetic.  Just be their friend.

9.  Take their words for what they mean.  There are no hidden meanings and at this point, they are going to be totally honest with you.  Don't argue with them.  If they say they need to lay down, don't disappear.  Give them ten minutes to relax then come back in and continue the visit.  If they say their hair growing back in is ugly, don't tell them they are silly and they look great.  Maybe the short "buzzed" look does look good on them but if they don't like it, then they don't like it!  I know, personally, my hair growing back in can't grow fast enough!  I HATE the way it looks growing in!  Every time I look in the mirror with my hair this short it makes me think of when it was falling out and then being bald.  Those thoughts twist my stomach because they lead to remembering the chemo in great detail!  Let them say they hate their hair and move on!  They need to be cathartic now and then about their feelings without someone telling them they are wrong!

10.  Educate yourself.  I thought everyone in the world was educated at least a little about cancer in general.  But I have run into friends who have never been touched by cancer and really know nothing about it or chemo.  I couldn't understand why one friend could say the most insensitive and thoughtless things sometimes!!  He finally admitted he didn't know anything about cancer or chemo.   Do your friend going through that a HUGE favor and educate yourself.  You can read up on it or you can simply ask!  For some people it is hard to talk about their cancer and for others, it relieves them that their family and friends want to know what is going on.  They have no problem talking about it.  They sometimes WANT to talk about it.  If you aren't sure, ask your friend if they are comfortable explaining what is going on with them.  They will be honest if they want to talk about it or not.

11.  I think most people are gentle with hugs during treatment but be a little careful after treatment too!  Most people have ports in their chests for years after chemo.  A shoulder pressed into your port is rather painful and will result in a quick reaction of pushing away and sometimes a little yelp of pain!  Don't stop hugging, just be aware of where the port is and where your shoulder or head is!

12.  Meld your worlds.  I had a unique situation with my treatment.  Most of my family and friends live out of state.  In fact, other than my parents, the only people who visited me on a chemo day were my oldest brother and sister-in-law.  They came to sit with me during my last chemo.  Which, btw, meant everything to me!!  Those two were with me from literally day one!  If you can't visit your family member or friend during chemo, understand something.  That cancer center where they get treatment has become a huge part of their lives and will always be a huge part of it.  The nurses and doctors and staff have become family.  They are the ones who give you your chemo, hold the trash can under your mouth, lay cool, wet clothes on your forehead, snuggle you under heated blankets or just hold your hand when you feel miserable.  They go out of your way to get you any food that actually sounds good!  They rejoice with every small improvement and sympathize with every difficulty.  Let them bring you into that world…even if it is after your treatments are done.  I got a chance the other day to introduce a close friend to some of my nurses when we brought cupcakes to the cancer center.  It felt good to be able to show someone I was close with the place and people that have been a part of my life through all of this.  People I couldn't do without.  Lately, I have found myself a part of two worlds.  I am still a part of the cancer world…I always will be.  And I am trying to rejoin the world of my family, friends and jobs!  They are so different!  I think it makes it easier if you can introduce the two worlds to each other.  Maybe it will help the fusion of the two easier.


Ok, so this whole thing turned out longer then I had anticipated.  And chances are there are things I have forgotten.  But, maybe it can somehow help someone:)

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