Dear Friends,
It has been quite a long time since I posted anything to
this blog – Almost two years actually.
I’m not 100% sure what happened – I didn’t lose interest in writing…. I
guess I just got distracted after I was able to finish treatment and get back
to living. Problem is – my ‘getting back
to living’ didn’t turn out exactly as I expected. Simply existing has proven to be quite
exhausting actually – but I am back online, my friends – and I have some things
I want to say.
Before I got sick, I had no idea about cancer, or illness,
or pain. I was one of those people that
got wildly uncomfortable when hearing bad news.
I didn’t know what to say. I
didn’t know how to act. I am quite sure that
I have offended and alienated many people over the years with my utter
ignorance. I believed that once someone
went through cancer treatment and survived, that was the end of it. I thought the same as many people think – you
beat it, so you’re good! Everything is
hunky dory and you are all better and all back to normal. I was so wrong.
One of my beautiful breast cancer sisters posted on Facebook
recently about how difficult it has been for her to figure out who she is again
after cancer. It really resonated with
me and got me thinking about my own struggles in the last few years. Treatment ends, but the demons it leaves
behind are lasting. There is constant
fear of recurrence, insecurities about the way we look, and pain. So much pain.
The pain is the hardest part for me. I do live with fear of recurrence, and I do
feel insecure about my changed body (although I have been very fortunate to
have found the love of my life, who tells me I am beautiful every day, so that
helps!) But I live in constant, 24-hour,
7-day a week pain.
They don’t tell you that this will happen. And it doesn’t happen to all of us. The doctors tell you what they recommend for
treatment and the possible side effects during
treatment. They want you to do the
surgeries and other treatments that have been proven to be effective. And I understand that. I am grateful that I had an awesome team of
medical professionals that were able to provide me with the research and
treatments that, in essence, saved my life.
And even if I had known about the long-term changes to my body, I would
still have made the same choices I did regarding treatment. I just wish I had more of a heads up about
what my future was going to look like.
According to a CBC article in 2014 (Click here for the article) 1 in 5 Canadians suffer from chronic pain. There are a multitude of causes – illness,
injury, genetic disorders, surgical aftermath – the list goes on. I have friends and family that have suffered
for years. In my foolish naivety, I
never understood the drastic impact it has on one’s quality of life. I just thought, 'Take a pill or something and get on with life... it can't be that bad.' I really want to punch my old self in the face for thinking like that. Chronic pain is physically, mentally and emotionally draining
– like EXHAUSTING - and can cause the
sufferer to lose friends, family, jobs and even fall into depression, anxiety
or PTSD.
Everyone has had some kind of physical pain at one point or
another. Think about having a bad
headache. You pop a couple Advil or
something and you lie down until the feeling passes. Imagine though, that the feeling NEVER passes. And imagine that the pills have no
effect. Think for a minute about how
wretched it feels when something hurts.
And then think about that wretchedness being CONSTANT. We all have different thresholds for
pain. And we all can handle a certain level of pain for a certain amount of time - because we know that it is temporary. But what if it isn't? And what happens when you have
reached your threshold and you can’t possibly stand it for one more
minute? Except you have to. Because it’s your life.
For me, my pain is a result of severe nerve damage caused by
my cancer treatments. I beat the cancer,
and I am alive – but the collateral damage makes me feel like the cancer
continues to beat me down every day. Apparently,
chronic pain is quite common for cancer survivors. (Better than the alternative though…. Right?)
Chronic pain is almost always accompanied by chronic
fatigue. Sufferers are exhausted from
being in pain, from the medications we are on, and from the emotional chaos it
creates. We are shunned by loved ones
who don’t understand, even though some of them try. We avoid making plans because we know that
there is a strong possibility that we will have to cancel – and most people
don’t understand why we cancel. We
struggle financially because of the cost of medications and loss of income for “sick
days” for those of us that are even able to work at all. In fact, I recently lost a job because of my
health problems, and I am not the first person to fall prey to this sort of
thing. Employers and co-workers resent
us because they do not believe us or they do not understand - because we don’t
look sick. Our marital relationships are
often strained. The person we love the
most in the world has to make sacrifices for us that weigh heavy on even the
most understanding and loving couples. And
we the sufferers then get the additional burden of guilt – we do not want
anyone to have to endure hardship or aggravation because of us.
Chronic pain is extremely isolating – our hearts hurt. We want to be there when our loved ones want
and need us. We want to get out of bed
every day and feel great. We do not want
to cancel plans or to limit the people in our lives from the things they want
to do because of our disabilities. Trust
me – we do not want this pain. We never
asked for opiate addictions or weekly doctor’s visits or spending half of our
income on healthcare providers. Yes, in
Canada we have great healthcare – but someone with a chronic condition must still
pay out-of-pocket for a large portion of healthcare expenses. (Don’t even get me started on the battles I
fought during cancer treatment to get some of my drugs covered!)
We try everything we can think of to find some relief. I have spent countless hours in physiotherapy,
acupuncture, Reiki and massage therapy.
Since diagnosis two and a half years ago, I have been on a barrage of
drug regiments, constantly changing to try to find something that works – my
pharmacist and I are great friends actually - since I am there weekly and I probably pay his mortgage! I have found
some relief with essential oils, certain supplements, and manual lymphatic
drainage – still I often spend hours, days and sometimes weeks in so much pain
that getting out of bed is a huge accomplishment. Many days I hurt, I am miserable, and I am
exhausted. I sometimes feel like a line
I read in a poetry book when I was a kid (unfortunately I can’t recall the
author – if any of you recognize it PLEASE tell me) – “My time is passed, and
still I must continue.”
But I DO continue… and I do what I can to persevere. I thank God every day for the blessings that
I do have – I am alive. I love deeply
and I am truly loved. I try to be there
for friends and family when I can, although I fail often and I pray that they
forgive me. I have started a couple
online businesses to try and earn income for my family, despite my inability to
work a regular day job. I am getting back to living – albeit a
different version of me than I once was.
And I am still learning – still figuring out how to be me in my changed
circumstances.
I am working one day at a time to figure out how to live
with my new normal. You would think that
I would have figured it out by now – but nope.
I keep reminding myself that I am one of the fortunate ones. I beat cancer (so far so good anyway). I did it with the help of my amazing friends
and family. And through the roughest
spots, I lucked out and found my soulmate (which is a wonderful love story for
another day!) But life is harder than it used to be. I am forever changed and nothing is as it
once was. But that will be okay.
I’ll figure it out ;)
*Thank you for reading my blog post! Please check out this theory about Chronic Pain that describes it PERFECTLY! It's called The Spoon Theory and is very well known among chronic pain and chronic fatigue sufferers as a way to explain to people how we live day in, day out.
