I Have Lynch Syndrome

I Have Lynch Syndrome

I was a normal six year old girl enjoying a carefree life, laughing with my friends, and starting my second year at primary school. I was Daddy’s little princess and my life literally changed overnight. My childhood was ripped away from me and the harsh reality of Dad’s death stole my innocence. It all seemed to happen so fast — my tiny little head did not have time to take in the reality of it all. Having been diagnosed in December of 1977 with a secondary bowel cancer, my Dad died four months later at the age of 36 in April 1978. After my Dad’s death, I was thrown into a world of grief; I no longer had my Dad to comfort and to hug me. I no longer had my Dad to read me bedtime stories, to tuck me into bed at night, to praise me after my ballet concerts, or to hold my little hand when we went for a walk. Unbeknownst to me at the time, my Dad had Lynch syndrome.

Experiencing the death of a parent at a young age is certainly a character building experience and can be the catalyst for a young girl to develop “daddy issues”. These daddy issues manifested themselves in the form of  manipulation and promiscuous behaviors during my teenage years. I sought father figures in all my male relationships throughout my twenties, which only led to broken partnerships and a failed marriage. Independence was my armor and I gave power to the masculine side of myself and not necessarily in a healthy or productive way. I consciously quelled the very essence of my feminine side down. I feared I was weak, could easily be hurt, and was vulnerable — I was a survivor who needed to be in control.

My second marriage came with its own set of challenges. Despite our backgrounds and former spouses, our union seemed strong but after ten years of financial pressure, challenging teenage stepchildren and two babies of our own I had started seeking a way out. I began with riding my bike taking every opportunity to escape. I had commenced self-development class once a week in the hope of rediscovering myself, picked up a part-time job, which got me out of the house mainly at nights and on weekends because blended family time was finally taking its toll. I just couldn’t do it anymore. It broke my heart to be despised in my own home every fortnight; I was at a complete loss. The environment around me was becoming so toxic and I didn’t know how to fix it. If I really wanted to self sabotage my life the Universe was about to give me a permanent way out if I chose to accept it.

You know when you just know certain things? Well, my intuition knew that I had cancer even before the doctor’s appointment. My husband and I went up to the mountains and sat quietly in a little tea house. We held hands, cried and made a promise to each other that no matter what the diagnosis we would get through it together. We walked to a small gift shop and I was drawn to purchase a beautiful aquamarine pendant. I didn’t know at the time but the benefit of using this crystal is that it aids you to let go of emotional issues from your past that you have been holding on to. When I paid for the pendant we started talking to the owner of the shop, she just happened to ask what my star sign was. When the word “Cancer” fell out of my mouth I just knew the heaviness in my heart was a fear I wasn’t sure I was strong enough to face. It wasn’t just my star sign, that same afternoon my doctor confirmed I had stomach cancer.

 During treatment and surgery something beautiful happened. That little girl that lost her Father resurfaced. She finally had an opportunity to grieve the loss of her Dad. She looked into her own children’s eyes at night and felt the heartache her Dad must have felt, knowing he was not going to see her grow up. She had time to sit on the floor and play with her boys. She had to hand all the masculine stuff over to her husband from the running of the house to the organising of everyone’s life. She only had one job – to get her adult self well so she could love and guide her little boys into men. The cancer diagnosis exposed the my feminine side that had been so carefully hidden high in my subconscious for so long, had finally re-emerged, and spilled back over into my life.

I took my power back, faced my own mortality, beat the statistics, and chose to live a life of self awareness. My feminine side was not to be feared. She is kind, nurturing, creative, healing, and most of all incredibly powerful. Allowing the creative side of myself to explore my emotions through art was my modality for healing during my illness. Painting was my passion prior to my illness but the work I was starting to produce began surprising me.

Yes, I have Lynch syndrome, but it does not take over every thought of every minute of my life. I am not my genes and I am most certainly not the cancer. I have used the experience to empower my life and to make a difference. I count, I am a survivor but I am also a creator, a healer, a mother and a wife. I am grateful for the knowledge of my genetics because I can now be a proactive, a happier person who doesn’t sit in drama or sweat the small stuff. My perspective and ability to bring hope and healing to others through my experience and my artwork has changed my life. The cancer and the Lynch syndrome diagnosis have opened my eyes, saved my marriage and awakened me to possibilities far beyond anything I could have ever imagined.

Michelle Lykokapis
Melbourne, Australia
http://michellepotter.com.au

 

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!