I feel really strange writing this and have avoided
doing anything like this for a while. But, I guess this means I’m coping with
my life and have accepted that this is my new normal. And a new normal is what
I am about to talk about.
A few years ago, through the wonders of the
interwebs, I found a fantastic blog post about moving on and re-assimilating
back into your life after cancer treatment. It was articulate and it perfectly
spelled out everything I was feeling and had been living with during remission.
And, the author’s medical experiences were shockingly similar to my own, which
made it all the more relatable. After talking with a close family member about
his own experience with cancer and finishing his first round of treatment, I
went looking for this wonderful post to show him but I came up empty handed. In
my research I found hundreds of similar stories and experiences, none of
which hit home as much as the original though (probably because, while we all
share similar emotional reactions, the variation of our physical and mental
changes can be great).
So, Now I’m going to paraphrase and plagiarize the
hell out of that post as well as my memory of it serves, using my own
experiences to flesh out what many years of painkillers and chemo-brain has
lost. Hopefully by the end, you will get a clear picture of what to expect from
life after treatment.
The hardest thing about cancer is that life
continues to move on, despite this massive burden and change. Don’t get me
wrong, fear, sickness and the physical transformation you go through are all
very, very rough. But, cancer isn’t the flu. It doesn’t run its course and then
you brush yourself off and get back to normal. It is a long battle that, even
well after chemotherapy and radiation and surgery and whatever else you go
through is seemingly done for the time being, you will never be the same person
you were before the diagnosis. In fact, here is some great advice to all the
friends and family of anyone fighting this battle – never, ever, ever say
something like “It’s over now, right? You can get back to normal?” Salt in the
wounds. Finishing treatment and the months, even years that follow can be the
scariest part of dealing with this disease.
Finishing treatment should be a day to celebrate.
But, what I found in my own experience and what I have heard from countless
others is that finishing treatment comes with an overwhelming sense of fear and
frustration. One day, you are fighting your disease, fixing the problem,
hammering away and being proactive in every way possible to ensure your
survival. Until the day you are not. Now, you are just supposed to wait and
hope. This goes against every fiber of my being, and now I know I’m not the
only one. It gets so deep into your head that recently I went in for a
follow-up scan for a new type of cancer and was thinking I would rather have a bad
diagnosis that involved treatment than one that is vague and involves waiting
and watching and more scans down the road. Like Schrödinger hoping for a dead cat instead of the
anticipation and hope that can come from not knowing. I know this is hard to
believe for anyone that hasn’t experienced this.
And I am not unsympathetic to the loved ones of the
patient in question. I know it is very, very hard and stressful for them as
well. One of the things that, while going through treatment, I was hyper aware
of is a growing frustration in the people around me because the illness
eclipses everything that is going on in their lives and seemed to diminish
their own personal struggles. I remember having a long conversation with a good
friend where she was telling me about all her stress in school and her recent
guy trouble and everything that should have been hugely important to a 21 year
old at the time. Then, after a few tears, she clammed up and realized who she
was talking to and proceeded to apologize and feel even worse, as though those
stresses didn’t count or matter by comparison. But, we all have our battles and
it is all relative. One person’s pain and struggles in life do not void out
another’s.
Some people will not be able to deal with this. There will be people
in your life that won’t even be able to make eye contact with you (personally, I’ll
take this over the ones that will stare at you when they think you can’t see
them). Some people will not pass the test on your friendship. And, speaking for
this side of the table, we know you get sick of it and want things back to
normal. Trust us, so do we. But, looking back, that was never on the table to
begin with.
Back to life moving on in spite of your cross to
bear. I will spare you my thoughts on healthcare and the financial burden that
comes with any medical condition. That is an uphill fight against stupid best
left for another day. Our lives are amazingly structured from a young age until
retirement. Any hiccup or comma that breaks up the steady march forward is
crippling. We don’t want to think about that side of treatment, especially when
we are in the middle of it and our whole purpose and goal in life is survival.
But, when you come out the other end of that sewage tunnel, with no eyebrows,
puffy and green tinted, weak and delirious (but breathing), now you have all
that normal stress put back on your plate. And, like a heroin addict, the draw
of a singular goal and worry, that next fix that is life, is overwhelming. In all
the hundreds of articles and personal posts about surviving treatment, this sentiment
is always the same. You are abruptly put back amongst the general population
and expected to pick up where you left off. But, along with a completely new
sense of mortality and priorities, you will also be facing a world that expects
the same from you as your neighbor whether it be school, a career or whatever
your responsibilities are now that you are “back to normal”. Oh yeah, you will
also be doing this while juggling constant doctors’ appointments with your PCP,
oncologists, specialists in your particular field of cancer, scans, blood work
and follow-ups, probably some therapists along the way, all the while you are
attempting to wean yourself off of the drugs and medication that lessened your
pain, nausea and anxiety over that last few months and years, not to mention
the crippling fear of a relapse or other forms of cancer caused by the
treatment. I will say, as rough as my own treatment went, I think the two years
after I finished radiation were worse than my one year of treatment. And,
looking at the stories so many cancer veterans have shared, I am in the
majority. Things did get a little better, but mostly, I just got used to my new
life. Other forms of cancer and consequences have popped up and you deal with
them. This is your life.
I know this is going to read as a major downer for
anyone in the last few stages of treatment, but the point of writing this is
simple – Don’t waste your time and energy expecting life to pick up where you
were so rudely interrupted. The best you can hope for is a new normal. You may
lose some friends in the process but the bonds with those really closest to you
will be stronger and you will even make new friends. Life continues to move on.
Always be happy and grateful that you are here to see it.
I hope I have conveyed this point in a way that can
be helpful to both patients and the people that support them in their fight.
Whether I have or not, please look at some of the posts and blogs and articles
online that cover the subject. Life after cancer is, thankfully, becoming a
constant reality as treatments evolve and survival rates increase.
Thanks as always for reading,
Ryan Black
