A Roller Coaster Ride.

Life is tough.

Everyone has a fight to fight or lessons to learn.

I have battled through some really difficult times in order to still be sitting here today. As have many (if not all) of my friends.  I can't speak for anyone else. But for me, even though I have struggled too, life was never as tough as it is today. Not until cancer entered the equation. Cancer is the unknown, the mystery box. Even three and a half years post-diagnosis, after all the treatment and testing, I still can't relax.  I thought I could but it turns out I can't. And probably never will.

The thing about being a cancer survivor is knowing that the journey is NEVER over.  Every new ache or fresh symptom creates an alert and is followed by yet another battery of tests to make sure it's not caused by cancer.  That's where I am again, in the middle of another bunch of tests and scans intended to rule out the big C.

You might think that all this testing and ruling out is a good thing. And perhaps in some ways it is, but more than anything it is physically and emotionally(and financially) exhausting. Nobody can really understand that unless they are on a similar journey.  Don't misunderstand me, I'm grateful that most of my friends can't fully understand and I truly hope they never do.

Six weeks ago I was feeling very anxious in the lead up to my regular annual scans.I had nearly two weeks of feeling positive and relaxed after I saw my oncologist and then last week I saw my GP. Before I knew it I was having more blood taken and being booked into hospital for more tests.

These constant shifts back to anxiety are a form of torture I'm sure. I can't relax. I exist in a highly alert state ready to fight or flee at a moment's notice. I don't sleep well, waking at every tiny sound. I wake feeling fatigued. I go to bed feeling anxious. And like riding a roller coaster I get off feeling like a wrung out dish cloth.

Being diagnosed with cancer is just like hopping onto a roller coaster for life. And just like being on a roller coaster there are some times when I just close my eyes and pray to get off.

Not today though.  Today I am continuing my fight, searching for answers and trying to make this day (and every single day that follows) count.  I hope  as you read this you don't think that I'm feeling sorry for myself in anyway, I'm not. Not at all. I AM feeling tired(exhausted), sore and afraid but also very grateful to be alive and able to feel tired, sore and afraid.

Love and light.

Beating The Odds?

Do you ever feel your mortality?  Do you ever consider that you may not see your children grow up or see them marry? Have you considered that you may never be a grandparent?  I hope not.

Three years ago I considered myself invincible.  I thought of myself as still young with so much life ahead of me. I took a lot for granted.  I had already survived overwhelming grief, the loss of a parent, the loss of my innocence, the loss of my first love and the almost total destruction of my second marriage.  I had survived a complete emotional breakdown, years of severe recurring depression and anxiety, and I even survived a moment of sheer desperation when I swallowed all the tablets in my bedside table.

But it was discovering the monster lurking within my own body that totally undid me.  Suddenly I was no longer invincible or immortal. Suddenly I was fighting for my life. I was feeling pretty healthy at the time but they told me I was actually very sick. And for the next 18 months I felt incredibly sick as I tried to get well. In order to cure me the doctors half killed me. Even now, three years into my journey, I am not as "healthy" as I was before my treatment. And you wonder why I get angry? The monster took so much from me.

And no matter how many people tell me not to dwell on it, or how often they tell me, I still have the scars to remind me daily of the fact that I came close enough to stare death in the face. And it's not pretty.

Even now I don't know whether my odds are improving or getting worse. Three years ago I was told that my chance of a recurrence was 80% in 5 years.  80% in 5 years!!!  Huge huh?  So three years along, having just completed another swag of tests and scans that came back negative, should I be relieved that I have survived this long without a recurrence OR should I be concerned that as I get closer to the magical 5 year mark the risk of them discovering something sinister increases? Eighty percent is a big number. It messes with my head.

I feel my mortality keenly these days. I consider every day a gift. I celebrate everything, and sometimes I celebrate nothing. I use the good china, I leave dirty dishes in the sink and I make time to get ink on my fingers and glitter on my face.  I desperately hope to see Ash grow up and marry and make me a grandmother. I tell my family and friends that I love them whenever possible.  I watch the sunrise and the sunset as often as I can.

And every single day I wonder if I could possibly be lucky enough to be one of the 20%.

Loving myself first

My first love was hard. There's no other way to describe it. Actually all my relationship until now have been hard, sometimes excruciating. And it has taken all these years to figure out what the problem was with every single one of them.  There was one thing they all had in common. One failing. And it was me. Or rather my opinion of me.

Now I'm not talking about relationships like holding hands with cute little Jamie with his blonde curls and glasses in grade 1.  Nor am I talking about my first serious crush. The one I cried over every time I had a few underage drinks with my friends. The one I swore I would never get over even if I lived to be a hundred, with his olive skin, dark eyes and crooked smile. Some of you were there with me and are laughing as you remember those days!

When I talk about my first love I am going right back to my mid teens.  I met him just before my sixteenth birthday and fell head over heels. He was cute (I mean cute in the way a teenage girl refers to good looking guys as cute, not Jamie in grade 1 cute).  He was also smart, funny and charming. And he made me feel special. He had "presence" - you could never overlook him in a room full of people. But I digress.

Over the years I have made some very bad decisions and accepted being treated poorly as a matter of course. I was insecure. I lacked confidence and had very low self esteem which left me open to physical and emotional abuse in my relationships. I honestly didn't believe that I deserved any better. The patterns repeated themselves over and over and I let them. Why didn't I walk away you ask? Because my first experience of love set me up to expect heartbreak.  After that I was broken.

We were so young.  He was restless and I was idealistic.  Over a period of about 4 years he broke my heart a half dozen times, disappearing out of my life without warning and then reappearing the same way.  When THE phone call came I would drop everything (and everyone) to see him for whatever brief time we had and then when the phone went silent I would continue on with my life broken hearted again. I couldn't understand what I was doing wrong but I began to expect the heartbreak and eventually to believe that I deserved it.

Relationship after relationship I allowed these patterns to continue - a failed engagement, a failed marriage and a series of toxic relationships.  Then 8 years into my second marriage I had a complete emotional breakdown and the pattern was finally broken. It took a long time and lots of hard work to finally heal but it was a start.

It took 42 years for me to love myself enough that I could believe and accept that I was worthy of love from others.


Now that I no longer expect to be hurt or believe that I am unworthy I am able to give love with all my heart.  I feel safe and secure.  I feel loved.  This has allowed my husband and I to build the kind of relationship I used to believe only existed in fairy tales. Now I am head over heels in love with my best friend.  Now I can't even begin to imagine a life where we aren't together, in love and blissfully happy.

It might take years, or even a lifetime, but trust me when I tell you that dreams most certainly can and DO come true. But it takes work!!!

A Violent Chapter

I was young and afraid, so I let it continue far longer than I should have. I met him when I was 18, living alone in Perth, and going through some huge emotional changes in my life. He was 26 and to a young, naive and impressionable girl with no self-confidence he seemed to have it all going for him. And so of course I was quietly thrilled when he followed me back from Perth to Hobart. An 18 year old had no business moving in with a 26 year old man, but I did it anyway. We even got engaged!! And then he started to show his true colours.

Not that there hadn't been clues, his older brother had served jail time for violent behaviour and his father disciplined both his sons with violence. But I dismissed all the clues or explained them away because as insecure as I was I thought I needed to be with someone and if it wasn't him maybe no-one else would want to be with me. Unfortunately the violent reality was starting to hit home. I lived in constant fear of making him angry and what he would do.

And so I sat for hours this one last night, terrified, with my back pressed against our bedroom door hoping he wouldn't be able to get in. My right eye was already swelling shut and both forearms were throbbing and I knew they would be badly bruised. I was convinced that if he got through the door I would end up in hospital or worse.  So I sat there and listened to him yelling, threatening what he would do to me if I didn't open the door, throwing things, punching through plaster board and even through one internal door.

The front door slammed and suddenly it was quiet. But I sat for another half an hour too scared to move in case he was waiting to push the door open as soon as I did.  Eventually I mustered the courage to move and cracked the door open. No sign of him in the unit.  I ran to the phone and called my dad to come and get me as fast as he could. Within an hour we had my belongings packed into his car and were heading back home. Thankfully there had been no sign of my violent fiancé as we left.

The next day the phone calls to my parents house started. Abusive calls accusing them of turning me against him. Denying the violent behaviour. Professing undying love!  Thank goodness I had finally learned my lesson and his words fell on deaf ears.

It didn't end there. I lived in constant fear. He would stalk me near my workplace. Six months later I had moved into my own place and would find him waiting outside for me to get home from work. Or he would wait for me at my car. It got so bad that work colleagues started taking it in turns to escort me home. And my dad would wait outside work whenever he could to drive me to where I parked my car.

The police said there was nothing they could do unless he hit me again and there were witnesses. I told them I was terrified that if he did hit me again I wouldn't survive the encounter. They still did nothing. It took well over 12 months from that terrible night before he stopped stalking me and moved back to the mainland. 20 years later I was still seeing his face in crowds and the fear would resurface. It hasn't happened for several years now so perhaps I have finally closed that terrible chapter of my life. I hope this post has helped me to finally let it go.

It's never over

I read a blog post by another cancer survivor a few weeks ago and it really struck a chord with me. Since then this post has been slowly crystallizing in my head. Finally it's time to get it out!
 
The thing about cancer is that it's not over when you finish chemo or radiation. It's not over when your hair grows back and you look like your 'old self' again. It's not over when you get the all clear on your first annual check. Or your second.

Cancer affects you long after it has supposedly left your body. Fatigue, preventative drugs with their associated side-effects and the constant vigilance. The emotional drain of facing your mortality, the frustration of a too slow recovery and the realisation that you will never be your old self again. Not to mention the medical bills...

But surviving cancer is still hailed as a victory, something to be celebrated.

And cancer survivors are too often hailed as heroes, the physical embodiment of the words strength, courage and determination.  So much so that survivors are actually expected to act that way.

Stay strong.  How many times did I hear this during my cancer treatment?  So many times that I felt obliged to live up to it.  Keep your chin up. Think positive. We've all said them and we've all heard them. But have you ever stopped to consider just how these phrases intended to inspire us actually disempower us instead?

This week I received a gentle reminder from a good friend that sometimes it's ok to just be sad. And so I was for a while. And now I have picked myself up and continued on. In my own time and on my terms.  I wish I had allowed myself that luxury in the past instead of trying to live up to everyone else's expectations.

Choices

Something I didn't do when I was diagnosed in November 2011 was take time to research my options and make informed choices. I wish I had but I was so shocked, frightened and overwhelmed at the time that I allowed the oncology department at SJOG hospital make all the decisions about my treatment.  I did what they told me I "must" do to give myself the best chance of beating this horrible disease. When they told me I required surgery I had surgery. When they told me I needed more surgery I had that too. "Take these pills, sit in that big chair and let us pump you full of toxic drugs, let us bombard you with radiation", and so it went. There was much more to it than that but I followed their recommendations to the letter. The oncology specialists I dealt with had a way of making me fear the disease more than I feared their treatments. And I did fear their treatments believe me!

However since all of that ended I have had a lot of time to research natural therapies. Green smoothies, essential oils, antioxidants, leafy green vegetables, herbs and spices the list goes on. I am learning how diet and exercise can boost your immune system enough to combat cancer. After all that's what the immune system is supposed to do right? Fight disease? So surely by building up my immune system I should be giving my body the tools it needs to fight the cancer cells and win?

Well this is a contentious issue in my circles as I'm sure it is everywhere. I remember one day talking to a close friend on the phone and questioning why I was subjecting myself to such horrors. Her reply? "Would you rather die?" It was as though without chemo the outcome was a foregone conclusion. And she is not alone in her view. Conventional medicine is touted as being the be all and end all of cancer treatment and many people believe it IS the only choice. "Alternative" therapies or natural medicine are often dismissed as "quackery". I discovered the hard way that many people I know have strong views on this and sit firmly in either the traditional medicine camp or the natural medicine camp. I have had some passionate discussions with friends and family regarding my past treatment and what I might do in the future if it should crop up again.

What I don't understand is why so many people view this as a black or white issue. Why can't the two things work together?  I'm afraid I'm a fence sitter on this one!! And I don't like fence sitting. I still take my "anti-cancer" pill every day like a good girl. BUT I also take my probiotics, antioxidants and vitamin D (don't get me started on how important vitamin D is). I eat lots of fruit and veg (organic where possible), I drink apple cider vinegar in water, I use essential oils daily and I meditate when I can. Oh and of course we moved across the country to achieve a healthier and more relaxed lifestyle.  None of these things can hurt me, in fact they even help moderate the side-effects of my "anti-cancer" pill. And who knows, natural medicine might just be the difference between a recurrence and a cancer-free future.

The Cure.

It's quite surreal watching the nurses hook a large bag of toxic chemicals onto the drip stand and connect it to the intravenous line in your arm.  The premeds have already been infused and this is the serious stuff. As I watched it slowly moving down the clear tube and into my arm all I could think was that it was going to poison me. The fact that it would (hopefully) kill the cancer cells too didn't rate at this stage. As I watched the chemo drug being fed into my body I became distraught. Being a severe needlephobe I had already taken as much anti-anxiety medication as I could, just to enable them to get the line in. But now my throat was closing up. My heart was pounding and I was shaking uncontrollably. They taped the line down further up my arm to stop me dislodging it by accident. And the tears started.  Oh god what am I doing???? Allowing them to poison me!!

Six hours in the chair watching three different chemo drugs go in one after another. One drug so toxic they made me chew on ice cubes while it was infusing to minimize the damage to my mouth.  Six hours imagining what damage was being done inside me. Drugs so toxic to my body that I was taking massive doses of steroids to stop me vomiting up my own insides.  Steroids so strong that for 4 or 5 days each chemo cycle I couldn't sleep and at times couldn't even sit still. No wonder I still have nightmares about it at times.

And then it's over for today. All the lines are removed and I can go home to my life for the next 3 weeks until the next cycle starts. But my life is different now.

That first treatment was 3 days before Christmas. I hadn't slept the night before the infusion and didn't for 3 more nights afterwards. On day 2 I started to feel nauseous and by Christmas Day I was ready to phone my sister and tell her we couldn't make Christmas lunch at her place.  But instead we went and I rested on her lounge instead of at home. At least my husband and son could enjoy the feast she had prepared for everyone. And I enjoyed being with my extended family. But even though I tried a couple of mouthfuls everything tasted like blood, and made my stomach churn. Those people telling me to go home and live my life normally until the next treatment had obviously never had to endure chemotherapy.

On day 13 my hair starts to fall out.  By day 16 I have shaved off what little remained. And a couple of weeks later my eyelashes and eyebrows are totally gone too.  I think the lack of eyebrows and eyelashes was worse than seeing my bald head. I would look at myself in the mirror and it wasn't me but a cancer patient staring back. I had the rounded "chemo" face from the steroids and even wearing a hat or wig my eyes were naked.  I was exposed to the world as being sick. I was no longer "me".  I started to avoid going out of the house whenever possible and became fearful of groups of people and public places.

And each cycle the side effects grew worse and recovery time grew longer.  It never got easier enduring the infusions either.  After 2 cycles they insisted on putting in a permanent line which caused a blood clot to form. That meant 2 needles in the stomach every day until the end of treatment to prevent the clot moving to my heart or lungs and killing me. Because of my fear of needles that nearly undid me.  And then after cycle 3 a change of chemo drugs, an allergic reaction and more strong meds to deal with the allergy.

And so it went. And so did almost 12 months of my life. Would I do it again? I hope I never have to deal with that question but I seriously doubt it. The unknown was frightening enough but knowing what's ahead ... I'm not sure I could sign up for that willingly.