Two Years

Unlike most people’s January, September has always represented for me a time of change – even years before Cancer.  Maybe it is the change in the air as autumn sneaks its way in.  Or maybe its conditioning left over from childhood and new school years starting always in September.  I don’t know – but I do know that a lot of major life events that I have had or major decisions I have made have often been in September.  September 8, 2014 was an especially important day as it was the last day of my Radiation Treatments. 

As a quick recap, from February 6, 2014 to September 8, 2014 I had surgery to have a tumor removed from my left breast as well as a second incision to remove and test Lymph Nodes (which tested positive for Cancer) then 4 months of Chemotherapy followed by VERY LITTLE recovery time to prepare my body for 30 rounds of Radiation Therapy.  Then I was prescribed 5 years worth of Tamoxifen, which is a hormone receptor blocker that has its own set of wonderful menopause-like side effects – Hot flashes, fatigue, mood swings, etc.  It wasn’t my best year, to say the least.

When I think about it – two years is wild – I mean, to me it still feels like yesterday.  One would assume that after two years I would be back to the thriving butterfly I once was, dancing and singing the nights away at Karaoke bars or having Wine Wednesdays with the girls – you know, all of the fun things I USED to be able to do.  I see it in other Cancer sisters – they appear to be fully recovered.  And maybe they are – physically.  But I wonder about the emotional and mental recovery.  It is very tempting to smile on the outside while we hurt or are afraid on the inside.  There was psychological support for a while for me – a counselor, a support group – but I kind of drifted away from that.  I mean, I thought I was healed – but there are so many emotions that happen now and thoughts after going through an ordeal like Cancer.  Fear. Anger. Grief for the life we should have had. Our thoughts don’t instantly stop when treatment does.

 Then I speak with others who are like me – dealing with severe physical ‘leftovers’ and trying desperately to find the right product, the right drug or naturalpath or acupuncturist – Trying everything we can to get some relief.  Dealing with families or friends that don’t understand the reality that Cancer treatment can, and often does leave behind some painful reminders in our bodies and our souls.  Reminders of who I was before Cancer. Reminders of my limitations now.  Reminders of the fact that I will never be the same as I was and that I need to accept a new normal. 

I was hopeful about the two-year mark… way back then.  The two-year mark in the Breast Cancer world is when you are expected to be “healed” – back to normal for some – but some of us didn’t get to go back to the way things were.  Some of us are fighting uphill battles to manage the more permanent effects of Cancer treatment.  I feel as though if this pain was going to subside, it would have by now and I fear that I must learn to live with it.  All of my stubbornness, my strength, my guts and glory – all the things that kept me going throughout my treatment – they can not make my nerve damage heal.  They can not stop the pain.

So this is where I am at in my battle with the Big C – while it didn’t destroy me, it damaged me (perhaps beyond repair) and I am still trying to learn to accept this new reality ahead of me instead of fighting it. I need to accept my limitations and to try not to feel so guilty about my body’s restrictions.  When I first got diagnosed, I was adamant that this was NOT going to change my life!  I would not let it hold me down.  I believed that I would handle treatment like a boss, then after it was finished I would go back to my awesome life.  Man was I wrong!  

 I believe acceptance is the first step towards finding peace in my new normal and getting out under the poor-me moments, which I regret to inform you, have been quite frequent these days.  Sadly though, that acceptance is proving to be much easier said than done.  I don’t WANT to feel pain and fear.  I don’t WANT to be a burden on my family and bail on my friends.  I don’t WANT to accept my new reality – I want my old one back – The one where I had the blessings of good health and freedom from pain and fatigue.

But I am trying to accept it… Slowly.  And I thank God for bringing me my loving husband and my amazing friends who are there for me, in any way they can, helping me every step of the way, one day at a time.  Baby Steps :)

#InvisibleIllness: Living with Chronic Pain

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.