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.

Fear

January has come and gone and I should have had my annual checks done by now. But as they say better late than never so I'm booked in for Thursday.  As is always the case the lead up to these scans is a time of turmoil and sleeplessness for me.

Two years ago last November my doctor said the 4 words which changed my life forever. "You have breast cancer".  Now every year I relive that moment over and over as I wait for the results of my latest tests and scans. It's incredibly hard all this waiting and wondering.

A lot of people say that it's important to be positive and I agree with them. I am positive. I know I am doing absolutely everything I can to give myself the best possible chance of beating this thing. But the reality is that nobody can know what will actually happen. So at this time of year all of my fears resurface and claim my attention for a while. Until my test results come in and are clear.  And nobody who has had a cancer diagnosis themselves would ever dream of criticising me for this fear. For 48 weeks or so every year I put cancer out of my mind as best I can and just get on with the business of living. But at this time of year I allow myself to be human and feel.  Not that I could stop it if I tried.

So what will I do if I get something other than the all clear this year?  Well obviously I will fight it with everything I have. As I did before.  And how will I feel about it? Well that's a different story. Crushed would perhaps come close to describing how I might feel. Even devastated. But more than anything I know I would be terrified. What haunts me is the spectre of how excruciatingly difficult cancer treatment is to live with. It strips away any semblance of normality and makes you look and feel sick. It takes away your anonymity and draws people's attention. It interferes with day to day life and also places a huge question mark over the future.

Two more sleepless nights and the scans will be done. Hopefully I will get some indication from the nurses on the day otherwise I have a further week to wait to get the results from my GP.  As always this is a difficult time for me and for those close to me as they watch me struggle. Hopefully in a week or so I can go back to "normal" and get on with the business of just living again.

Luck?

Many people tell me how lucky I am. And actually they're correct, but not for the reasons they think!!

I'm not lucky to have a wonderful, loving and devoted husband who is also my bestest best friend.  We have done our hard yards.  When others may have given up and walked away, we both decided to swallow our pride and change ourselves for the better instead. And to work hard (I mean work DAMN hard) to build this amazing relationship we have today. And we keep working on it too. No luck there.

I'm not lucky to have a reasonably well adjusted, easy going, respectful and happy son.  It's been hard work raising him to understand manners, generosity and friendship. I'm not his best friend (although we are great friends) - I'm his mother. I set the rules and enforce them, I don't try to curry favour by giving in to his demands or try to buy his affection. He's happy and healthy and I have worked damn hard to make it so. Again there's no luck there, just more hard work.

I'm not lucky to live on a rural property just outside of Hobart with the most spectacular views of rolling hillsides and Mt Wellington in the background. We made some extremely hard choices to get here and have done lots of hard work (with much more still to come) to make it a reality. We have given up our comfortable home and networks in Perth for the unknown over here. We have jumped in feet first with no farming experience at all and are learning what we need to know very quickly as each new crisis hits. Not lucky or easy!!!

And I am most certainly not lucky to have survived breast cancer. The past 2 years were the hardest I have ever experienced.  I fought to survive. I did have great specialists (I hope) dishing out my treatments but it was pure will power and determination (and my amazing husband) that got me through them. I guess sometimes it pays to be stubborn.  Recovering from the cure was the hardest thing I have ever had to endure.  No luck there, just grit and determination.

I don't attribute any of those things to luck. All required concerted effort, sacrifice and in some cases huge mental shifts to make them happen. In most cases a goodly dose of courage too.

Where I do consider myself extremely lucky is that I have managed to learn the lessons I needed for each challenge in time to prevail. Perhaps The Universe dished out my lessons in a particular order for a reason, or maybe it was just blind luck. But when each challenge landed at my feet I somehow had the tools I needed to get through.

Perhaps The Universe had something to do with this too, but hand in hand with every challenge the most amazing and dedicated people have come into my life to support and guide me. And I am truly lucky that each and every one of them has remained in my life after the crisis has passed.

I am indeed lucky and blessed.

Self worth

When I look back I can fully understand why I have always had trouble with confidence and self esteem. And I can also see how different my teens, twenties and even my thirties would have been had I been able to trust in my own worth. How much hurt might have been avoided.

I remember there was a time that I was comfortable with who I was. I liked myself. I was doing reasonably well at school and enjoying jazz ballet and modern dance. I considered myself pretty enough and at age 14 that was important. I had some amazing friends and there were no major dramas at home.

But then something happened that changed everything for me. A massive betrayal. Something that I kept secret, not telling anyone about it for 15 years because I was made to feel that I was to blame. I felt ashamed.  I never told my family about it because I thought they would look at me differently, that it would change our relationships, or worse they would also blame me. And I certainly never told my friends, even those closest to me.

From that day forward my opinion of myself declined. I began to accept behaviour towards myself that I should have rejected. I allowed the hurt that the following 6 years dished up, and even believed that I didn't deserve any better. In fact for more than 25 years I allowed myself to be treated poorly.

Are you wondering why nobody stepped up to help me? Surely they could see my hurt, my saddness and self loathing? Well no actually, that was when I realised that I was very good at convincing everyone around me that I was ok. Everyone saw my bright dazzling smile, and that seemed proof to them that all was ok. Sadly that continued right up until my breakdown. A perfect example of how well I had everyone fooled was a comment made by a lovely friend on seeing my 40th birthday glamour photos "I don't think you can fake this kind of happiness" and that was mere months before I crashed.

What would I tell my 14 year old self if I could? To expect to be treated with love and kindness because she deserves it. To walk away from anyone who doesn't do so. To ask for what she wants and needs. Ask for help. Demand respect. To realise that she is a beautiful, kind and worthwhile person. That when someone hurts you it is NOT a reflection on you but on them!!

What would I like you to take away from this post?  Well if you are the one struggling then I urge you to reach out. Admit your pain to those who love you and ask for help. And if you're in a good place then please look closely at those around you who appear to be fine. Look past the bright smiles and cheerful facade to see if behind the mask is a scared, hurt and isolated soul silently screaming for help.

Loss

We will all suffer the loss of someone we love at some time in our lives. That's part of being alive. It's one of the most difficult experiences imaginable.

For me the greatest loss I have experienced is the death of my dad. Not a day goes by without me thinking of him. His bright blue eyes and cheeky smile. He could make anyone laugh and would do anything for anyone in need.  I always thought he was too good to be true. Maybe he was just too good for this life.

Every day for the past 24 years I have missed him and wished we hadn't lost him. He was too young and too vibrant to leave this life. Every day I wish my son and my husband had known him and that he had known them too. He would have been an amazing grandad. He would have loved all of his grandchildren and shamelessly spoilt them rotten. I know he would approve of my husband and he would have been proud of how we fought to get to this place in our life together.

Dad was just 53 when he took his last breath.  I was with him at the hospital that night. He had been in palliative care for a few weeks and some nights I would sleep in the chair by his bed. He couldn't talk to us anymore, the brain melanoma was taking away his ability to function. The morphine took him off to another place. But the pain was still there, we could see it in his face and hear it in every breath he struggled to take.

Usually mum would have been with him, but this night I had convinced her to go home for some rest. A few hours after she left I noticed Dad's breathing had changed. I called the nurses, they checked him and decided there was no need to phone mum to come back to the hospital just yet. A couple of hours later his breathing changed again, became really strained and developed a rattling noise. The nurses called mum and told her to come back to be with him. While we waited for her to get there I talked to Dad constantly. Even though we'd been told he couldn't hear us I didn't believe it. I told him what a wonderful father he was. How much my sister and I loved him. I told him how much mum loved him. I kept asking him to hang on just a little bit longer until she got there.

Around 3am his breathing became very strained, I could hear the pain in each breath and see how hard he struggled for each one. I held his hand and pleaded with him to wait for mum. But she didn't arrive and eventually I couldn't bear to see/hear his suffering any longer. So I squeezed his hand, kissed him on the cheek and told him that it was okay. That we all loved him and knew how much he loved us. That it was ok to let go if it was too hard to keep fighting. And just like that he let his breath out and didn't take another. That was his last breath. The struggle was over for him.

A few minutes later mum arrived and I heard her howl in pain from down the corridor as the nurse told her that Dad was gone. She was totally devastated that she wasn't with him when he passed and I believe it took her a very long time to forgive me for being the one who held his hand as he died. But in my heart I truly believe that he didn't want mum to see him take his last breath. He didn't want that to be her last memory of him. As it is for me.

Every day I wish my dad was here with us and I miss him still.