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:)

I Think I'm Getting There!

As I write this I am randomly knocking on my desk in hopes of not jinxing anything!  I am actually starting to feel a little like my old self again!!!  I don't know if it just from time or the ballistic doses of Vitamin D I have been taking but I am able to walk more and work out at the gym almost consistently!  Granted, the workouts are short and my walks are up and down my road (and not all the way up and down it yet) but I actually feel like I can o this now!

The fear of completely wiping myself out and ending up in bed sick again is still there but it is slowly receding:)  One thing I have learned from this treatment and recovery is you can't live up to other people's expectations but you have to set reasonable expectations yourself.  I have also learned when people tell me "you're fine" they aren't dismissing everything you have gone through (which is what it really feels like BTW) but rather reassuring themselves.

My expectations, until recently, were always simply too high for me!  I came out of this chemo slower then expected but I am coming out of it.  I just had to realize the speed I was recovering at and work with it instead of working against it and getting frustrated.  But I think I am getting into a good groove here and hopefully it will be a faster recovery from here on out!

Evening Gown In The Infusion Room!

One of the many things I love about the nurses and people at the Cancer Center is their ability to make you laugh and not take life so seriously all the time!  One of those moments was today!  I also discovered that when you say you are going to do something…they hold you to it!  Such as wearing a new dress into the Infusion Room to show the Infusion nurses…even when that dress is an evening gown!

Today I had to go get my monthly port flush and actually was running late.  I had told myself that I could get a pass for not wearing the dress (again) because of the 8 inches of snow we got yesterday. Last minute though I changed my mind and as my car was warming up I threw on the dress, shoes and did my make-up:)  I found myself laughing almost the entire time I was in the building!  And the dress was a big hit!

I love that the girls remind me to just laugh and be silly.  I forget pretty easily!

Lots of love to everyone in the Cancer Center and special love and hugs to my Infusion Nurses!!

Port Flush Time…Ports Are…Something.

Once a month (or so) I head into the cancer center to get my port flushed.  Pretty much they inject stuff into the port to clean it.  The term Port Flush always makes me think of car issues!  Engine Flush, transmit ion flush…port flush somehow sound alike it should fit in!

I don't mind port flushes.  Just one poke into the port…and I have my topical numbing juice over the port right now doing it's thing.  Yet I am still terrified of needles!  I can hold it in better but that doesn't mean it is anywhere close to gone.  One would think with all the needles I have had to deal with I would not even think about it.  That logic never made sense to me.  If you have an irrational fear (which is what a phobia is) just because you are facing that irrational fear a lot more doesn't make it lessen.  You get better at accepting that there isn't much you can do about it but you don't loose the fear.

I remember last year I was trying to find ways to not have the port put in because all I could focus on was the fact that I would have to have another surgery…and this time I would be awake!  They call it a procedure but if they have to cut you open, put something in and then sew you back up…I call that surgery!  I was so focused about that process I wasn't thinking of what it would be like if I hadn't gotten the port.  I shudder to think the number of times veins would have to be dug for…a task that would get harder as chemo proceeded.  In hind sight, I am glad I was guided back around to the port.

I won't say I am use to having the port in me but I have come to accept it.  With the accept ion of CT scans…it is handy to have around for doctor visits…especially when they want my blood…which has decreased in number but still come!  It still bugs me when I lay on it in a certain way.  Or when I am in a lower cut shirt around people I don't know that well.  At that point I am VERY aware that my really pale skin makes my scar and the port stand out quite a bit.  I have developed a twisted sense of humor in situations like that sometimes.  I'll explain what the gray bump is and then point out how you can feel the catheter near where it goes into the vein.  It's so weird that I feel like one of the ways I deal with is addressing the thing that some people either keep looking at or avoid looking at.  I could just wear higher cut shirts…and sometimes I do…but they make my skin itch over the port.  So I have to make a choice sometimes.  Physical comfort or emotional comfort.  My own personal, constant reminder of everything thats happened and still happening.

Starting To Look Back

A year ago right now, cancer was the last thing on my mind.  But looking back, the symptoms were there.  Around this time I was getting back from Spring Break and getting ready for graduation.  I was looking forward to a Celtic Women concert at Miller Auditorium.  It was such a wonderful show too!!!  I had tickets to see Wicked (FINALLY!!) for me and my friends Jennifer the night before graduation.

But already, I was constantly tired.  I would get home from class and the library and would just collapse in my chair.  Making dinner was becoming a chore and I had to be completely out of food to force me to go to the store for groceries.  I figured I was just getting worn out from the stress of finishing school (it did take 15 years!) and job hunting.

Here is what is funny between now and this time last year.  This year is kinda mirroring last year.  I am job hunting once more for teaching positions and the funny thing is, the two schools I was applying at are both hiring again this year!  They both have my resume and we will see what happens.  It is a little strange.  And a little scary!  Everything seems to be repeating itself with these two job possibilities!  And I'm ok with that.  They were both great opportunities and possibilities last year.  I just want to make it through June.  June is my next exam and CT Scan and once I get a clean bill of health then…I'll stop feeling like I am just repeating last year.  I really don't want to repeat last year.

Better By Inches…But Getting Better

So after two up and down but ultimately wonderful weeks in Virginia I came home fully expecting to be in bed for days recovering.  The day I got home my mom showed me an add in the local paper about an Expo where I could sell the crafts I make two weeks from then.  I decided to go for it and purchased a space…then went into sewing overdrive!

The next two weeks were spent making aprons, tote bags and getting ready for the expo day.  I was out of bed much more than I was in it and able to just keep going!  I really surprised myself!  I did manage to knock myself out the weekend of the expo but it was a good weekend!  I spent the day of the expo on three hours of very bad sleep (because the insomnia pops up it's ugly head now and then still!) but still made a few small sails and then kicked back and napped all the way home!  I honestly expected to wake up the next morning so tired I would be sick.  That is the normal response I have when I over do it as much as I did.  Surprisingly though…I woke up still very tired but…NOT SICK!  I spent a couple days resting and went back to sewing today:)  Working on a blanket for my sister-in-law.

I discovered that having close goals helps me keep going.  If I have things to do to work towards a goal then it makes my energy bounce just a little higher:)  So I am focussing on sewing as much as I can:)  Also looking forward to a possible craft fair in April as well as a Relay for Life event I'm invited to at WMU in Kalamazoo.  ANd I am really looking forward to the snow melting and staying away!  We had a day in the 40's and it was so nice to just go outside and walk up and down the road to the property line and back:)  I REALLY need to get more exorcise in but the weather has not been cooperating!  My goal…if the weather gets better…to be able to walk down to Garrison road and back by the end of March / beginning of April.  That is just over a half mile walk.  For someone who spent the majority of the past year in bed…thats a pretty good goal to reach:)

Little by little, inch by inch, I am getting better.  I am still in utter amazement in how long it takes!  I know everyone is different but it would be nice to know that there are other people who have this constant feeling of tired for so long.  I am hoping the ballistic daily doses of Vitamin D and B my doctor has me on will help boost my energy in another month or so.  Yes, I am still looking at life month to month.  When I start trying to look for quicker improvement I generally end up disappointed!  But I will get there.