Another Bumpy Ride

Another Bumpy Ride

Hello My Arty Friends,

If you are not connected to my socials you may not be aware that on the 24th July 2023 I was diagnosed with early stage pancreatic cancer.  I remember clearly writing about my previous stomach cancer experiences and how my perception of time changed. Hearing the ‘C’ work again after 12 years was like watching two cars collide in slow motion, only this time I felt like I was observing the accident rather that sitting behind the steering wheel.  I love explaining things in metaphors, so let’s call this ‘the 2nd baby’. Anyone that has experienced childbirth knows that no matter what anyone tells you first time around, nothing can actually prepare you for parenthood.  Second time around you know what’s coming and even though the experience maybe similar there will be new lessons because no second baby is ever like the first baby!

In 2019 I wrote a letter to my past-self which I will share some part of. It tells a grueling tale of what I would have said to myself knowing what I know now. The lows and highs of cancer. The sadness, grief, hope and gratefulness all mixed up in a messy soup of medical appointments. The weight loss, the hair loss, the friend loss. The additional financial burden that’s placed on a family and the lack of support and understanding that the primary Carer suffers.  I soon worked out that a wig only made other people feel comfortable, so the night I decided not to wear one to a school open night was met with awkward stares and parents avoiding eye contact to avoid conversations.  The absolute clincher was a school mum’s jesting, calling me a ‘skinny bitch’ post-surgery.  I assured her that she could also be as thin as me if she was prepared to go through the same thing.  Some people are soooooo inappropriate!

‘You are going to lose a lot of weight and I mean a lot. You are probably going to kick yourself for wishing you could lose weight.  You got your wish but not the way you thought it was going to happen.   You know those chubby cheeks, those voluptuous breasts and wobbly belly you hate so much when you look in the mirror – you are going to lose it all.  In fact, by the time you have finished you are going to have to change everything in your wardrobe, even your shoes.  It was nice at first but when those curves that define you as a woman start to disappear even you will be shocked at your appearance.  You will actually walk past a window and smile at the person looking back at you because for a split second you didn’t realize it was a reflection and you didn’t recognize the girl looking back was you. ‘

Reading back through that letter it is clear how much I have grown and I’m not the only one. The level of support provided by the hospital has improved so much over the last decade that I honestly don’t know how I managed it all by myself the first time around.  This second diagnosis has been challenging for my husband and children who, once again, have to watch me go through more treatment, surgery and 12 to 18 months of recovery.  I honestly have no idea what life looks like on the other side of this, but I have some comfort in knowing that although this is another high mortality cancer, we caught this one early.  It certainly doesn’t mean that I’m out of the woods, but it does give me more options due to early cancer screening.

As this tumour is in my pancreas and not my colon the recommended treatment has to be privately funded.  My family needs to raise $61,000 in order to pay for a ‘mismatch repair deficiency cancer’ that decided to grow in a non-government funded organ.  This covers approximately 21 treatments and then the next two years are free of charge.  If you would like to help us financially I have started a GoFundMe page where you can donate.  If you prefer to own some of my artwork you can support me by purchasing through my shop.

If you would like to know a little more about the science, here is some information regarding Lynch Syndrome and its associated cancers along with information regarding Keytruda which is the immunotherapy treatment I have been put on.

Lynch syndrome (previously known as HNPCC) is an inherited genetic mutation which gives people an increased chance of developing certain cancers across their lifetime, often at a younger age than the general population (i.e. before 50 years of age). 

These cancers include, but are not limited to:

  • Bowel cancer*
  • Endometrial cancer (lining of the uterus)*
  • Ovarian cancer
  • Stomach cancer
  • Hepatobiliary cancer (liver/gallbladder)
  • Urinary tract cancer
  • Kidney cancer
  • Pancreatic cancer
  • Brain cancer
  • Skin (sebaceous adenoma, sebaceous epithelioma, or sebaceous carcinoma and keratoacanthoma)
  • Small bowel cancer

https://lynchsyndrome.org.au/the-facts/what-is-lynch-syndrome/ 

Most cancers in people with an inherited MLH1 mutation will have a tumor biomarker known as “MSI-high” or “MSI-H” (microsatellite instability). This biomarker indicates that the tumor has a feature known as “mismatch repair deficiency,” which is also known by the abbreviations dMMR or MMR-D. Testing tumors for mismatch repair deficiency or MSI-High can be important, because these tumors are more likely to respond to immunotherapyagents known as immune checkpoint inhibitors

 People with an MLH1 mutation may qualify for clinical trials looking for more effective treatments for cancer. Keytruda (pembrolizumab) is an immune checkpoint inhibitor used to treat metastatic or advanced colorectal cancer. 

(https://www.facingourrisk.org/info/hereditary-cancer-and-genetic-testing/hereditary-cancer-genes-and-risk/genes-by-name/mlh1/cancer-treatment# )

For the first time, Keytruda® (pembrolizumab) will have its listing extended on the PBS to include the treatment of unresectable or metastatic mismatch repair deficient colorectal cancer.

This is the first immunotherapy treatment available to Australians with this type of cancer, which cannot be removed by surgery or has spread to an area outside the colon/rectum. 

Keytruda® belongs to a new class of immunotherapy medicines that help the body’s own immune system to detect and fight cancer cells. The drug is already available on the PBS for other types of cancer, including lung cancer and melanoma.

https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/media/landmark-pbs-listing-for-australians-with-bowel-cancer#:~:text=For%20the%20first%20time%2C%20Keytruda,mismatch%20repair%20deficient%20colorectal%20cancer.

A new health report from consumers reveals over 80,000 Australians, at increased risk of developing one or more often-aggressive primary cancers in their lifetime, don’t actually know that they’re at risk from a hereditary cancer gene.

Lynch Syndrome Australia Founding Director, Ms Beth Fairbank said only 5% of Australians with Lynch syndrome have been diagnosed.

“It’s imperative that people with the gene are diagnosed early in order to increase cancer prevention and early detection. 

For a person with the gene, they have a 70% chance of developing a Lynch syndrome-related cancer (including bowel, endometrium, pancreas, stomach, breast, prostate, kidney and skin cancer),” said Ms Beth Fairbank, Lynch Syndrome Australia Founding Director.

https://lynchsyndrome.org.au/australias-untold-health-story-lynch-syndrome-media-release/

This path has so many casualties. There are depths of self you have to dive into to find strength, hope and healing that only comes with a cancer diagnosis.  I am refining what is important and who I want to spend my time with.  I am relearning not to set expectations around those that show up and those that don’t. I am having to find forgiveness for things that I thought I had already forgiven and letting go of people, situations and emotions that I thought I had already released. The cycle has come back around and its time to lean back into the dis-ease so I can peel off another layer and clean house, yet again. This ascension stuff is hard work and I can only say that a cancer free body and true enlightenment will be the ultimate outcome from this experience.

 

Michelle xx

The Best Version of Me

The Best Version of Me

 

 

What do you do when the best version of yourself is never enough for someone else?  
This belief pattern started when I was eight years old. My mum met and married a man after a whirlwind romance.  My father’s replacement would literally put his hand out and hold me at arm’s length when I went to give him a hug.  This rejection caused my little heart to cry with despair.  After losing my father to cancer a couple of years prior all I was looking for was his unconditional love and affection.  I couldn’t change want I wanted, I was just a kid.   
I fell in love at twenty and married a man whose attention was anywhere other than the relationship he had committed to.  Reinforcing the belief that the best version of me was not worth loving and was never going to be good enough for anyone. 
My second husband and I met at work. As like attracts like, we were thrown together by the Universe with our pending divorces and emotional distress.   After a few false starts we decided to try and make a go of it.   Here’s the irony, I thought he was the one that came with baggage!  I had cut ties from my ex and saw myself as a childless, free spirit ready to explore the world of the Thirty somethings.  Whereas he came with two young children, parents steeped in tradition and an ex-wife, who for the sake of the children was still very much in the picture.  
With the addition of two impressionable girls into my life I did not want to repeat the experiences I had as a child.  So, I always went over and above to make them feel comfortable, welcome and loved.  You could say at that time I had a Wonder Woman complex.  If I wasn’t organized, then I couldn’t control the outcome.  If I couldn’t control the outcome, well that thought was terrifying.   I was conscious of needing to feel accepted and I was literally stuck in a pattern of old belief systems that were self-destructive. I was on a collision course heading for disaster.  
Eleven years into our relationship I was diagnosed with stomach cancer.  At the time circumstances would have it that neither of my step daughters wanted a relationship with me.  I felt totally and utterly defeated.  A crescendo of years’ worth of self-sacrifice and desperation to be loved.  The ultra-best version of me was never going to be good enough, ever.   So where did this leave me?  What lesson was I not learning here? Why did each karmic challenge seem more heart wrenching and harder to pull through? This one contributing to and almost costing me my life.  
The original wound of my eight-year-old self was still playing out and cancer was my opportunity to fully awaken and see things very clearly.  It was never about the people that rejected me, they were just the mirror of what I didn’t want to see in myself.  Being brave enough to confront my old beliefs allowed me to understand that I have purpose and no longer needed to look outside of myself for love, acceptance or validation.  
I love my authentic self and thank my teachers in life for helping me find her. 
Michelle Potter
Visionary Artist
The Stomachless Artist

The Stomachless Artist

 

Hi, I’m Michelle. I thought I would reintroduce myself to everyone. In 2011 my world changed forever. Not only did I survive stomach cancer I also discovered I live with Lynch Syndrome, also known as hereditary nonpolyposis colorectal cancer. For anyone who has carries a genetic predisposition there is a lot of anxiety attached to it.

I attended self development for many years, have read a pile of books, connected with others living in similar circumstances and have spent an awful amount of time in my head. In my newsletter I wrote “One of the things I will take away from 2017 is that I have tried very hard to be a bee over the last few years. Encouragement pushing me in that direction has only made me more conflicted and aware that I was trying to be something I was not. My business was not gaining momentum because of what I was projecting and I know now that that was not my authentic self, rather a productive version of me that I felt I had to be in order to be successful. All the while I was unconsciously projecting the very fear of success I was afraid of by not being true to myself. “

This has been a confronting year of truth and as Kerwin Rae says ‘Just trust the path as you go.’ Doing things through fear has held me back because I believed that I had to find one thing and be great at that. But, I am not one thing, I am many things and I can BE all of them. It has taken some serious life lessons to realize I just need to be me.

Fact, I live without a stomach everyday and some days are more challenging than others. My art is my healing space and my time to create for others. I am a mother, a wife, a cancer survivor, a healer, a writer, an artist, an explorer, a creator, a business woman and a friend. In order to live to my full potential I need to accept all of me without self judgment.

So with excited uncertainty I do not know where the path is going to take me in 2018 but I know I will be embracing it with both hands. ?❤️??

#bio #Artist #magical #uniquegift #abundance #livewithoutlimits #cancersurvivor #stomachcancer #bringon2018 #artistwithnostomach

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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.    
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