Posted By Teeni on March 23, 2011

This may be another long one, but I promise it will be insightful, so pull up a chair when you have a few minutes and please do read to find out what a survivor has to say on the subject.  This is serious subject matter but I will try to keep it light when I can with a little humor.  My purpose is not to depress anyone but hopefully, readers will come away with something that will help them aid their surviving friends or relatives to live as long and as normal an existence as possible.

Nobody Knows When Their Number is Up

It’s true that nobody knows when they will be passing on.  Even doctors can be wrong with their prognosis.  It’s possible that you could be hit by a bus and perish before your cancer-stricken friend or relative passes away.  However true that may be, there is no feeling like facing a cancer diagnosis, where the possibility of perishing is always in the back of the survivor’s mind when it is not glaring them right in the face.  Even when in “remission” or when there is no evidence of recurrent disease, the possibility of cancer returning to finish them off is always weighing somewhere on a survivor’s mind, which is something the person getting hit by the bus doesn’t deal with on a daily basis.  Note:  I do not mean to sound harsh here and I like to remain positive and hopeful for anyone diagnosed with a chronic disease but I think it is safe to say that anyone diagnosed with cancer most likely always has it on their mind in some way or another, whereas someone who has an accident befall them probably did not spend much time worrying about it.  Also,  I do NOT wish anyone to get hit by a bus. 

Do Not Discount the Severity of the Situation

I recently read a magazine article about a child who had an attention deficit disorder.  The mother likened it to a cancer diagnosis.  It really incensed me because there truly is no comparison.  There is nothing like a cancer diagnosis except a cancer diagnosis.    Although I don’t dismiss the fact that her child’s diagnosis caused a disruption in her family’s way of living, and most likely many hardships, it is hardly comparing apples to apples.  Cancer is a killer.  Attention deficit is not.  There certainly are cases where a survivor is diagnosed early enough to live a long and relatively normal life but that is not always the reality.   Please  be respectful and refrain from making these types of statements.  I say this without malice, but those kinds of comparisons are nothing other than stupid.  Yes, I said the “S” word.  I know some people don’t like to use that word and discourage their children from using it, but there really are places where it is applicable.  This is one of them.

No, It’s Not Okay - It’s CANCER, Dammit!

Many times I’ve fielded questions after telling someone that I had been diagnosed with cancer.  Often, it  is something like, “Oh, but you are lucky they caught it early, right?”  Well, um, no.  In my case, it was advanced disease.   Sometimes I heard, “Oh, but you are okay now, right?”  Um, no.  I am functioning and trying to live normally but my world and body was rocked by cancer and the ensuing treatment and surgeries.  Would YOU be okay with that?  I’ve also heard, “Oh, but you’re in remission now, right?”  Yeah.  But what I don’t say is that “remission” implies that I show no signs of disease right now and that only means that I’m always wondering if and when it will rear its ugly head again.  In my case, the doctors don’t even use the word, “remission.”  They actually say “No Evidence of Recurrent Disease (NERD),” which is probably a more accurate description.  I don’t like to complain about this too much because in the past, I’ve been guilty of saying some of these things myself.  I realize that most people who say these things are well-meaning and are hoping for the best outcomes, and they may be uncomfortable dealing with the subject.  On the other hand, it really is not comfortable for the survivor to tell people that they have been diagnosed with cancer.  So I have learned that we shouldn’t assume that it was caught early or that everything is okay now.  Sometimes it’s not.  But it is always okay to just offer your sympathies for the situation and your assistance with anything that the survivor may need.

Another point I’d like to make is that cancer is an invisible disease.  Many people have no idea themselves that they have it before they are diagnosed.  Sometimes there is no pain to indicate that anything is wrong.  Often the only truly outward signs of the disease are the evidence of the treatment when someone is undergoing chemotherapy or radiation.  When someone has finished treatment, what they have gone through may not be visible to anyone who doesn’t know them.  They may not have special parking stickers or walk with a cane, and many of them do not get to quit work to live on disability,  but they are dealing with a very serious disease on a daily basis and I have noticed that not many of them complain.  To me, this just stresses the importance of being kind to one another even more.  Nobody knows what another person is dealing with or what hurdles life has put in front of them by judging the book by its cover.

Become Informed

When one of my aunts was diagnosed with a certain type of cancer, the adults in the family didn’t really inform the us cousins much about the disease,even though we were hardly children at the time, only telling us that the type of cancer she had was the “kind you could live with.”  It turned out that she had complications from her treatments and didn’t end up “living with it,” for very long.  I still don’t know much about her situation but I know that I really wished I had because I had a burning desire to research everything I could on the subject to help her in any way I could to live as long and as normally as she possibly could.  After having received my own diagnosis, I have done a lot of research for my particular situation.  This does not make me an expert in any way, but does allow me to try and make as many informed choices as I possibly can in my own life.  One thing I did learn is that nobody knows everything.  Not even specially trained doctors in the field.  Nobody.  To top that off, there are several different types of cancers, some are hormone-fueled and others are not.  It may be helpful to research the type of cancer your loved one has been diagnosed with in order to assist them in any way you can.  But please, remember not to preach to the choir.  Ultimately, it belongs to the survivor to decide how to continue their life and your support of those decisions is what will truly help them in the best way to live as fulfilling and content a life as possible.  After all, isn’t that truly what your goal is for your loved one?

Another thing I’ve found is that it is always the people “who know someone” or are “related to someone” who has cancer who seem to think they are experts on the subject.  These people may not have done any research on the matter but base their behavior on what they think they know from other peoples’ experience.  Nobody knows what it feels like to be a cancer survivor except, wait for it, yes you guessed it -  a. cancer. survivor.  But you don’t have to be a cancer survivor to have respect and compassion  for those that are.  I was recently in a waiting room at a physical therapist’s office when I overheard a conversation between an obvious cancer survivor and a know-it-all.   The survivor was wearing the distinctive chemo cap and the typical skin pallor of someone currently undergoing cancer treatment.  But she was beautiful, and I was amazed at the grace she displayed when the know-it-all started asking her all manner of personal questions and then continued to relate to her a number stories of people she had known who had  cancer but had since passed away.    The know-it-all knew everything on the subject because her sister had had breast cancer.  The survivor she was speaking to was in treatment for lung cancer that had spread to her brain.  She was diagnosed at Stage IV.  ( For those of you who don’t realize it, Stage IV is not a good stage to be diagnosed at.  But don’t take my word for it -  please feel free to do some research now. ) Note:   I can’t speak for this particular survivor, but I highly doubt that hearing about the know-it-all’s deceased friends did much to lift her spirits.  It certainly wasn’t doing anything for mine as I sat there wishing the know-it-all would take her foot out of her mouth and shut it.  I know of several people who were diagnosed with cancer since my own diagnosis and there are way too many stories of those who have succumbed.  Please feel free to tell us of others who are continuing to survive.  We don’t need to be constantly reminded about our fallen brethren as we continue to fight for our own lives, as we are well aware of our own mortality.

From the ensuing conversation, I also learned that the survivor had never smoked, was a runner, and had lived a pretty healthy lifestyle.  This lovely and gracious survivor didn’t have to share her story but the know-it-all had asked the question, as if the survivor would have deserved to be stricken with cancer had she smoked or not lived as healthily as she had.  The survivor also mentioned that she thought that stress might have had a lot to do with her diagnosis.  The know-it-all quickly disagreed and said she thought it was most certainly due to environmental factors.  I had to restrain myself from stepping over there and punching her between the eyebrows.  But it probably would not have knocked any sense into her.  She was just a product of her own ignorance and I don’t think she really meant to be so thoughtless.   I breathed a sigh of relief when she left and after a little while, I scooted my seat over to the survivor.  I told her I had not been able to help but overhear their conversation and shared that I was also a survivor of advanced cancer.  I also told her that I thought she might be right about the stress factor in her disease.  Nobody knows why some people develop it and others don’t, but it does not always show up in cancer clusters.  The survivor, my new friend, cried tears of relief and renewed hope when she learned that I was a few years out from my treatments and was working and living as normal a life as possible.   This particular survivor and I arranged to meet at a future date for lunch which we enjoyed a few weeks later.   She is unnamed to protect her privacy in this post but I think of her as I write this and my love and support will be with her for as long as I can provide it.  She and I are very different people, but we share a bond of respect as well as a  common enemy.

Yes, Chemo CAN Make You Fat!!

There are many different medications used in chemotherapy based on the type of cancer being treated.  Many of them have side effects.  Some make you bloated, some ruin your taste buds, some make you lose your hair, etc.  During my treatment, I had become a vegetarian and eventually a vegan because I thought changing my eating habits to more healthy options and raw foods would benefit my body.  I shared this information with my oncologists but there are certain protocols that hospitals use when treating people.  When my weight dropped below a certain percentage, even though I am certain it had to do with my diet change because I certainly was not eating any less, my team put me on steroids.  I wish that never happened but I was not informed much about steroids at the time.  I quickly learned that they made me bloated, hungry to the point of tears ALL THE TIME, and that they kept me awake once for 72 hours straight.  It was not fun.  It also took a long, long time for the effects of the steroids to lessen and I am just now starting to feel normal again.  However, due to my particular circumstances, I was forced into early menopause so that my body would not produce too much estrogen which was fueling my type of cancer.  So it became extremely difficult to lose weight.  In addition, I have a thyroid condition so that complicated weight loss even more.  I don’t know how many times I tried to explain this to people but some people just want to continue thinking that you are a piggish fatty and that is why you ballooned up from 120 to 140 pounds.  Those people, in my opinion need to become informed.  And also they need a kick to the groinular area (groinular should definitely be a real word too).

It’s Okay to Not Understand

A person who receives a cancer diagnosis may have a complete change in priorities in their lives.  After getting over the initial shock, which I can only compare to feeling like receiving an icicle through the heart at lightning speed, they may make changes in their lives.  This could include changes in diet, exercise, or just how they choose to spend their time.  For some, it is a wake up call and forces them to realize what is truly important to them.  They may decide to spend more time with their immediate families or doing things that they’ve always wanted to do but had procrastinated about in the past.  They may end up turning down certain opportunities in favor of others.  Don’t take this as a slight.  They still need support and friendship.  You do not have to understand why some things are more important to them, but do try to understand that it is important to them for whatever reason.  Be supportive.  They may realize they only have a limited time, so writing a letter to a long-lost friend may be more important to them than attending your  first child’s christening.  Or, they may have a really great prognosis for a long and happy life, but still, their diagnosis may have made them re-evaluate what is important for them.  Respect, support, and acceptance of their choices will mean the world to them regardless of whether you agree with or understand their decisions.

Sudden Appearance

It may be good to keep in mind that someone who was diagnosed with cancer may have been sick for a long time without knowing it.  In fact, they may have no idea what it feels like to be “normal.”  Some cancers are very slow growing and it is unlikely that the survivor just “came down with it”  the day before they were diagnosed.  They may have spent years feeling tired, negative,  or moody and just placed the blame on a busy work schedule or stressful lifestyle.  For some it is somewhat of a relief (not much, I stress, but somewhat) to realize there is a reason they have felt badly for a long time and that they are not crazy.  Many chronic disease sufferers have an “A-ha” moment when they are diagnosed and realize there may  have been real reasons for not having felt well for so long.  Honestly, I don’t know where I’m going with this but it occurred to me that I was probably sick for a very long time before my own diagnosis.  It may have, unbeknownst  to me, played a part in many thoughts, feelings, moods, or behaviors that I had before I knew I was sick.  So just a little insight from me to you to keep in mind.

Nobody Deserves Cancer

I can’t stress this enough.  It’s really not okay to judge.  Someone who engages in unhealthy behavior still does NOT deserve to be stricken with a chronic killer disease.  Period.  Plenty of people engage in unhealthy behavior and live to a ripe old age with very few complications in life.  On the other hand, many people who do NOT engage in unhealthy behaviors ARE stricken with cancer.    Nobody gets it because they deserve it.  Mass murderers and serial killers don’t all die from cancer.  Innocent children who have not even begun to live their lives are sometimes killed by cancer.  In my case, while it may be true that I used to engage in behaviors that probably raised my risk of developing cancer, it in no way means that I deserved  it.  As long as I see mean-spirited people and people without consciences living long lives on this planet of ours, I know that in my heart.  And still, I don’t wish a disease as punishment for anyone.  A survivor does not need you to judge them.   Who of us is perfect enough to judge another?  It’s infuriating that some people think they are better than others maybe because they were fortunate enough to be raised in a stress-free and supportive home, had access to good nutrition, were taught a healthy lifestyle, inherited good genes, had no vices, or whatever they may believe saved them from the fate of a chronic disease.  Also remember that there is not one of us on this planet who did anything to deserve the gift of life they are now enjoying.

I think this is all I have to say on the matter.  Thank you for reading.  Be well and be kind.

Hugs,

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Category: Health
Tags: cancer