I Hope You Never Understand

I Hope You Never Understand

Late last week I felt a thickening of my left breast tissue.   A small but noticeable lumpy bit that just managed to get more painful the more I poked and played with it.  I made an unscheduled visit to my doctor, followed by a lengthy mammogram, and ultrasound.  At least some relief was given to me at the appointment and although nothing was found in the left breast a fibroadenoma was found in the right. This will require some monitoring due to my history and genetics as Lynch Syndrome also carries a slighter higher risk of breast cancer.  Yet another reminder that no matter how positive I am, how healthy I live, how self aware and #ultraspiritual I feel there are just some things that I cannot control.   It doesn’t seem to matter if I’m a good person , a bad person or something in between. Sometimes shit just happens. 

 

Having gone through an enormous life changing experience in 2011 I  know I have grown and changed in so many ways.  My family is the most precious gift I have.  Watching my children grow up is such a blessing that many of my cancer friends will never get.  Every year that ticks past, and every photo that I can get with Santa fills my heart with so much gratitude.  I have focused and continue to develop in my craft and work at it every day.  My art has been at the forefront of my ability to heal, help and express myself.   I also devote my time to helping others to connect and give a platform to so many out there that also live life without a stomach.  I have used the last 4 ½ years positively, productively and creatively in the hope to better understand myself and what I have to offer the world.
My ability to discern which relationships I allow into my life is extremely important and anything I feel is toxic just has to go, no question. When you are sitting in a doctors office waiting for test results you are not thinking about what the mums at school are saying, or what sale you might be missing out on.  You are worried about your kids, your husband, yourself .  You worry about how you and your family are going to cope. How you are going to stay positive? How you are going to get through this?   You ponder on the what ifs, no matter how hard you try not to.  The anxiety and anticipation of an outcome you cannot control is the scariest thing you can possibly imagine.  It shakes you to your very core and nothing else matters to you accept those that are close to your heart.  
I feel like I am continuously being grounded and reminded of what matters most. As much as I can appreciate the experience from a spiritual awakening sense, from a human perspective it is absolutely exhausting. And this isn’t just a little bump in the road, I have to live like this for the rest of my life.  I have been reminded this week that no matter how much I put the cancer behind me there is always, always going to be a percentage of it on my mind.  Every lump, every blood test, every scan brings another wave of anxiety that unless you have experienced it, you can never possibly understand it.  
Why wear a dress if it doesn’t fit you anymore?  Of course you might put up with it for a while but you will eventually get to a point where you think “I need to let that go that, it doesn’t fit me anymore”. Nothing has changed with the dress, it’s exactly the same as when you first purchased it. Its you that’s changed. 
If you were once a part of my life and are no longer then it’s nothing personal.  Seriously, it’s got nothing to do with you, it just means that you are no longer a reflection of me. Why wear a dress if it doesn’t fit you anymore?  Of course you might put up with it for a while but you will eventually get to a point where you think “I need to let that go that, it doesn’t fit me anymore”. Nothing has changed with the dress, it’s exactly the same as when you first purchased it. It’s you that’s changed.  We all have our light bulb moments, the ones that put our lives into perspective.  Well, my life seems to be one massive light bulb!   Your perspective on life is based on your own personal experiences, your truth, your belief systems and I respect that, but it also means my experiences have evolved me to a point where I have outgrown you. It doesn’t mean I think I am better than you, it just means that I am very selective about who I allow into my life and the energy they bring. I truly hope you never understand, but if one day you do then you might appreciate just a taste of what its like walking in my shoes.    
Enlightenment | To be or not to be? That is the question.

Enlightenment | To be or not to be? That is the question.


I have long forgotten asking the Universe why things happen the way they do. I never project too far into the future because I am never sure what is around the corner for me, so I live my days as much in the moment as I can and surround myself with those that I love. 
What I do know is life is so fragile and can change at any moment.  We all have to ride the waves and our attitudes define who we become on the other side of our experiences.  Then you have those defining moments in which your life will never be the same again.   Through my own experience, I have learned than sometimes when we take too long to make decisions the Universe makes them for us.  It can shake us down to our very core and be excruciatingly painful both physically and mentally.  It makes us reevaluate who we are, why we are here, what we want and what we are supposed to be doing on this crazy planet.   
Pain makes the world stop. You look around a world which was normal the day before and yet it now seems so far from the truth we wonder how people can carry on without noticing.  Its like all of a sudden we wake up and everyone else seems to be sleepwalking. The shift in us can be so great that it can change the course of who we are and where we thought we were going. 
Just as our bodies become sensitive and cannot longer tolerate certain foods over time, it becomes the same with people and situations.  For a time we still eat things knowing that we are going to pay for them later.  Over time our tolerance levels get lower and lower until our bodies immediately reject or react to something that it doesn’t like.  As we become more and more aware of ourselves the same things happen in our relationships.  That old friendship circle maybe tolerable for a while, but then you will find you become less and less like the people you once called friends.  Socializing with them will become so unappealing that the only logical thing to do is to move away from it.  Friends will change, relationships will change, jobs will change as each one no longer is a reflection of you. This then has to be replaced with something new, which is another entirely different blog for another day. 
During my recovery a few things stood out that were glaringly obvious. I discovered the people that really cared, and the ones that just said they did.  I noticed the people that I could have genuine meaningful conversations with and those that were transparent and shallow.    The kindness of strangers restored my faith in humanity and those I thought would support me during my illness are the ones that disappointed me the most.  I learned never to underestimate the power of kindness and who I should spend my most precious gift of time on. 
All I know is I am wide ‘AWAKE’ and working my way towards becoming an ‘ENLIGHTENED’ being. After all,  we are all headed in the same direction, I just prefer to do it with humor and a light heart. 

 

Through My Fathers Eyes

Through My Fathers Eyes


I remember getting alot of adult attention after my father’s death.  A steady stream of people flowed through our family home bearing food and gifts to cheer us up. I guess it worked because I cannot remember being a grief stricken child. At school my art design was chosen for the Christmas card competition (and it wasn’t very good!). I was given leading roles at my ballet school and my teachers were nice, caring and generally overcompensating especially around the father’s day celebrations. I was never given a real opportunity to grieve the loss because everyone around me always wanted to make me happy.
The earliest recollection of my father being sick was visiting him in hospital.  I remember that visit because I buried my head in his overnight bag so I didn’t have to watch the nurse change his drip.  He thought it was extremely funny, although my fear of needles lasted for the next 27 years!   One day I sat on his knee and looked him right in the eyes.  ‘Dad’ I asked, “Are you going to die?’  My father had been diagnosed with terminal bowel cancer.   How do you tell a 6 year old the truth without breaking her little heart, so of course my Dad lied ‘No Princess, I’m not going to die’.  When he passed in 1978 at the age of 36, I was 6 years old and my little baby brother was 4. 
The magic in life just seemed to slowly disappear.  Quite suddenly as everyone got back to their own lives things got hard.  I not only lost my Dad that day, I lost a part of my mum as well. As I grew older I became angry and resentful that my father had not only died but lied. I was never able to let go of the hurt although my adult logic knew why he done what he had done. I guess you can never really appreciate what someone is experiencing until you experience it yourself. 
When I was 39 years old with young children of my own  I was diagnosed with stage 3 stomach cancer.  The frightened little girl, who stuck her head in the overnight bag resurfaced.  I was given an opportunity to see my father’s diagnosis through my own eyes and I was finally able to grieve the loss of my father.  I would look into my babies eyes at night and feel the overwhelming sadness and heartache my father must have felt knowing he was not going to see us grow up.  I cherished every moment with my family, not knowing if I was heading into the same terminal diagnosis.  The time I was able to sit on the floor and play with my boys became ever so precious.  My husband became my career, my strength and support. He took over the running of the house to the organizing of everyone’s life.  I only had one job, to get myself well so I could give my boys the opportunity to have what I never had growing up, two parents.  My surgery was successful and after months of chemo, radiation and healing I was given a second chance at life. 
Four years after my surgery and 37 years of my father resting up at the crematorium my mother decided it was time to scatter his ashes.   I think we all would love one more day with a loved one that has passed and I feel so blessed at having had the opportunity. Even though I always know he is with me in spirit, I had a physical connection and something to hold onto for one more day.  His urn lay next to me while I watched TV, I held him in my bed and cried.  I told him how much I love and missed him, and he spent his last physical night watching over me from my bedside table.  I got to hold him in my hands again as my mum and I scattered his ashes in the sea and I now keep his plaque in my garden.  I felt life come full circle and I was finally able to put some closure on the funeral I did not attend as a child. 
My experience with cancer allowed me to open up and release the part of me that needed to let go.  I still feel sadness even while I re-read this blog. I don’t think that will ever go away but the anger and the sense of being robbed of my childhood no longer has a place in my heart. 
 
Michelle Lykokapis
Stomach Cancer Survivor
But You Look Great!

But You Look Great!

Truthfully, people say this alot and I’m not just saying it.  If you can pull through a very serious illness and inspire others by walking the talk then I am very humbled by the complement.  The life I choose to live is a healthy, proactive, productive and positive one and when I walk out into the world this is the face I would hope most people see.  

However, with every ray of light there is a shadow and that is also what I have had to accept and to learn to live with with eveyday. Having gone through the physical, emotional and financial experience of cancer it is not uncommon for people to come and ask for my help.  I would average at least one person a month either asking me to call their friend or requesting my number “to give to such and such’.  I am a loving, caring person but in all honesty I simply cant. Not just for my own health and well-being but I am not a professional counselor.  Don’t get me wrong, I do understand the importance of  being able to connect to someone when you are going through a tough emotional time or not coping with prescribed treatment, but there are structures within society that will assist those that need it.
 
Just like most of us, it takes me all my own energy to get through each and everyday and I would hope people understand that one can only extend themselves so far.  For me life has always got to be about boundaries and balance. It is actually a critical part of my life now and I don’t expect people to understand unless they have lived through this surgery and have the looming threat of cancer over their heads.  I discovered through my journey I have a genetic disorder called Lynch Syndrome. In a nutshell I have a faulty cancer protective gene which is in each and every cell of my body. This means I am far more likely to develop one or more cancers throughout my lifetime as this is the more dominant gene in the cell. So, you see I live with the threat of disease everyday of my life. As proactive and as positive as I am nothing helps the anxiety leading up to quarterly blood tests,yearly scans and intrusive procedures. I will never be ‘over’ cancer, this is something my human side has to deal with for the rest of my life, period
 
I wanted to give back to society after my illness so I put a structure in place to be able to do that. I created a Support Group on Facebook called https://www.facebook.com/SupportGroupForPartialTotalGastrectomyPatients for people who live with partial or no stomach.  Along with four other administrators (all stomachless) I am able to help people on a daily basis just by living my life and sharing personal experiences and information.  I do not extend myself further than that unless someone locally with stomach cancer comes through the No Stomach for Cancer website (http://www.nostomachforcancer.org) , my GP, my surgeon or my oncologist.  For my own sanity and to stay out of the depths of other peoples despair this is just one boundary I am constantly having to uphold. 
As well as being extremely lucky, I am also not your average type of girl. I am committed to do the work on myself to evolve. I believe anything is possible and I want to express myself and inspire people through my artwork and hopefully light a few internal flames in those who are searching for more than this human experience,  I have committed myself in spiritual meditation classes for over five years and I’ve had to do alot of self healing and releasing during that time. The more I define myself the clearer the decisions and choices I have to make.  This includes finding that cold compassion with people and being able to detach from those who are no longer a reflection of me, no matter how long they have been a part of my life.  Letting go of the past is incredibly difficult and emotionally hard, but for those committed on this journey of higher consciousness there is no room for illusion just the truth.  It takes a lot of hard work spiritually, emotionally and physically to ‘ Look Great’. So when someone pays me this complement, I know I’ve earned it! 
 
 
 
 

 

How Much Is Too Much?

How Much Is Too Much?


 

Self prescribing vitamins.,  I’ve been doing it for years. After my stomach cancer and subsequent surgery, I was thrown into a world of supplements and nutritional deficiencies that carry lifelong consequences if I don’t keep on top on things.  Fortunately for me I have blood tests every three months so I can see how most levels are going.   To stay at my optimum every day I religiously down at least 20 vitamin tablets, ½ aspirin and an antibiotic and occasionally throw a few other things in depending on my blood test results.  I don’t do this willy nilly, I do a fair bit of  homework on what will work for me, what I’m already taking and speak to professionals in their field to gauge if my homework reflects their professional option.  This helps me make educated choices but even so I still don’t know if I’m getting it right. I can only go on how I look, feel and how my body is responding to life.  People in my situation are left in a very vulnerable position when it comes to wanting to take care of ourselves and we have to be wary of those who seek to take advantage of that. 

I am raising this topic today because I can’t help but feel really upset and angry at myself at a situation that happened to me earlier in the year.  It was recommended to me that I seek out the help of an Integrative Medical Naturopath.  This is a person who understands western medical practices and can incorporate both medical and naturopathic medicine for the best possible outcome.  As I am not about to leave the comfort of my own home to live naked,  eat organic and grow hairy armpits in the rainforests  of Brazil, I thought ‘Perfect  this is exactly what I have been looking for’.  This person was highly recommended to me by a couple of people so I sent an email entailing my situation and made an appointment. 

Let me start by saying, this person is AMAZING. She was extremely professional and certainly knows her stuff.  She was all about what I could do moving forward and being proactive with my health and how we could monitor my funky cancer genes.  She gave me a few things to try and this ended the consultation. I made a follow up appointment, go to pay and OUCH $270.30!!!  First consultation fees and very little back with my private health (not to mention a 35 minute drive from my house) made for a very expensive round trip.  
Second consult, just as good as the first one. I had handed over my supplement sheet, medical records and blood tests in my previous consult and she had gone away to do her analysis.  More encouraging outcomes and a prescription that needed to be filled by a Compounding Pharmacy. (Pharmacy compounding is an established tradition which allows a physician to prescribe a very specific medication, prepared by a pharmacist, for a patient’s individual needs.) End consultation, make follow up appointment, go to pay….still ouch $129.00 but not quite as bad this time.

A few weeks had gone by and I was following up the prescription with the Pharmacy, turns out one of the ingredients was obviously coming from the arse of a Lama which was sitting on the top of Mount Kanchenjunga in Nepal.  So I waited a few more days and then they called to tell me it was ready.  The conversation went something like this…. (names have been changed so I don’t get sued!)
Them – ‘Hello, this is Tina from ABC Pharmacy, I am calling to tell you your prescription is ready’
Me – ‘Oh, great how much is it?’

Them – ‘$379.40’

Me –

 

Me – ‘Sorry, was that $379.40 cents?’
Them – ‘Yes, extra if you want delivery’
Me – (nervous giggle) ‘Gee I hope that is a month’s supply’
Them – ‘No this is for one week’
Me –

 

Me – ‘Well I guess I have to pay for that (as you have already sent a small slave child up a big mountain to collect the droppings of a Lama) . I just want to tell you that I am extremely surprised and really disappointed that I have to pay this amount. We are a one income family and this is ridiculous. I should have been warned it was going to cost this much.’
Them – ‘Yes, some of the ingredients (mainly the stuff from the arse of that Lama ) in your prescription were very expensive. Best you speak to your naturopath.’
Me – ‘Yes, thanks I will do that’. (Reluctantly handed over Visa details and address)
END CONVERSATION
I got off the phone and apart from being in absolute shock, I was totally devastated. How was I going to explain to my husband that this magic gold dust was going to do everything that I needed in order for me to stay cancer free and see my little boys turn into men.  I did indeed call and speak to my ‘Integrative Medical Naturopath’ and clearly explained our financial situation.  (Just for the record I already consume approximately $200 worth of vitamin and nutritional supplements a month, just add the gold dust of $379.40 a week, her consultation fee and seriously no one in their right mind could afford this, let alone a one income family) She apologized and said she wasn’t aware that it was going to cost that much.  As much as I wanted to believe her I figured if you do this every day and it is your profession I’m going to have to call ‘Bullshit’.

 

That night I sat and cried, a lot. There was a massive assumption that we could afford anything that was prescribed to me. There was no upfront explanation that some or all of my medication was extremely expensive. You almost get pushed into a corner and feel obligated that you must follow this path in order to live a healthy life.  Cost seemed to be an afterthought to them. Of course there was no way we could continue to do this and I felt let down, angry and frustrated with the entire situation. Here I am, wanting to take the best possible care of myself and in my opinion I had been manipulated. My question of cost during the consultation was met with ‘I’m not sure about that, but it will be around $150’. I’m not sure who I was more mad at,  me for feeling guilty that I couldn’t afford medication for my health and wellbeing, the government for not supporting and supplementing natural medicine, the naturopath for charging too much and under quoting my costs, the pharmacy for overcharging, or the Lama!   Mostly I was just sad because I felt this avenue was no longer an option for me because we weren’t in a financial position to pay for everything.
  
I continue to search for complementary medicine and do self development and spiritual work on a daily basis.  I understand that this body is my vehicle to get me through this lifetime, I need to take care of it the best way I can.  If there is one thing I have learned through this experience it is not to put all your eggs in one basket. I have a great team of medical and alternate support people around me. Don’t get discouraged by one set back, life is full of other opportunities you just have to make the choice to go out and look for them. I must say Brazil’s looking pretty good!