Paul's Heart

“Life” Support

If there is one thing I have learned in my nearly 28 years as a cancer survivor, is the importance of emotional support in any kind of recovery or treatment process.  Although I will tell you, at the original diagnosis of my Hodgkin’s Lymphoma, the last thing I wanted, was anyone near me.  Just as unprepared as I was to deal with having to fight cancer, I was also just as unprepared to deal with the onslaught of “super caring” from everyone.  In fact, at one point it became so overwhelming for me, causing me to isolate myself.

But over the years of my survivorship, especially being trained as a counselor for cancer patients, as an outsider, I have seen both the good of family support, and I have seen the bad of neglect and denial.  I have personally met so many families over 28 years.  Each family unique in their make-up of support network.  Some were so inspirational with their support, and others were just so tragic.

One of my fellow survivors was a teenager when she was diagnosed with Hodgkin’s.  She had a boyfriend who stayed by her side through the entire course, never wavering in support, which at times, were quite critical.  Upon news of remission, they remained together, eventually becoming engaged, to be married this Spring.  This young couple has been through so much already, but their support of each other is quite clear.  And I wish them happiness forever in their future.  And should they have to deal with any crisis, I know they will stand by each other’s side.

Another long term survivor like me, married her high school sweetheart.  Decades later, they have a beautiful family with children who have no knowledge of her cancer journey, but are all to familiar with her survivor health issues.  Several years ago, their family was challenged, near fatally, when she was involved in a car accident.  Her health issues were complicated enough, without the trauma of the accident.  But there was her family, by her side the entire time.  Her recovery, the only thing that matters.

I have many stories such as this.  Unfortunately, I have too many that are quite the opposite.

A husband wakes up in the intensive care unit, following emergency heart surgery, hooked up to all kinds of machines.  Panicked as to what had happened to him, made worse by the fact that his wife was nowhere to be found, the nurse did all she could do to calm him down and assure him that he will be fine, the worst over, and hopefully the wife  would appear soon.  But she did not.  She was out partying.  Several hospitalizations later the spouse is still in denial of the serious health issues faced by this cancer survivor.

A wife struggling with a myriad of health issues that have developed over time as a result of treatments for cancer.  Doctors have a hard time finding cause, and lost at a treatment plan for how to improve quality of a life, that will never improve physically.  The wife is made to feel that since her issues are not obvious or textbook and cannot be cured or reversed, she should just pick herself up and do the best she can.  As a long term survivor in this situation, I can tell you this is easier said that done.

Another spouse, was treated as an inconvenience, either due to lack of stamina, or a flare-up of one their late effect issues.  Worse yet, treated as if the issues did not even exist.  His spouse only concerned about the image of disappointment by the lack of appearance at a function.

Then there is the spouse who is jealous, jealous of all the attention the cancer survivor with severe health issues (actually this can apply to any patient dealing with a severe chronic issue).  This spouse is one who is likely to manufacture their own “illness” which ironically is an illness, just to take away the attention where it is actually needed.  This particular spouse would “trump” their spouse’s legitimate health crisis with her own.  As another legitimate crisis would arise, the spouse would develop another manufactured issue.  This cycle would never end until one of them would.  The sad thing was, one spouse would have given anything not to have to deal with the realities of side effects from treatments that saved his life, never to need a doctor again.

I guess the thing that makes it frustrating for me as a counselor, is that I see all the other families who support each other without question.  And I see the remarkable quality of life that my fellow survivors can enjoy, in spite of their issues.  And this applies probably 80-85% of the time.  But it is the other extreme, when there is lack of support, either by denial, ignorance, and yes, even jealousy (attention paid to the patient) that frustrates me most.  You would think all that any family member would want is for their loved one to recover or heal.  Though only 15% of the time, when put into a different number of the actual survivors I have met over my lifetime, it is way more than a handful who lack the support of the significant other or family.  I would count at least 100 of fellow survivors in this situation.  And that is 100 too many.

A family should support each other.  Spouses are supposed to be there through sickness and health.  Sadly for some, their own selfish needs outweigh the care and support needed by their family member.