by Michelle Potter Artist - Energy Worker - Wayshower | Aug 23, 2023 | Blogs, Cancer, Life Lessons, Pancreatic Cancer, Updates
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
by Michelle Potter Artist - Energy Worker - Wayshower | Jan 5, 2023 | Blogs, Life Lessons, Updates
“I am re-braving after a difficult stage that un-braved me.” – Jeff Brown.
2022 was indeed ‘The Tower’ for me.
January 2022, things were starting to open up, people had already started planning for a mask free future, but my hesitation had all but turned me into a paranoid skeptic who saw how ugly and selfish the world had become. I had already distanced myself from certain social media platforms and as much as much as my reflection started to resemble Shrek in his swamp, I reveled in the luxury of just being able to put my phone down to alleviate any drama that was going on in the outside world. It was generally nice not having to people.
School began, my eldest heading into year 12 and my youngest being able to attend his first year since commencing high school. Just getting accustomed to having the house back to myself felt weirdly quiet. I can’t say I missed the smell of the air fryer or the fridge door constantly opening and closing, but we had worked out daily routines so we were not constantly getting under each other’s feet. Getting reacquainted with myself took some time but I missed the kids and the company. I knew that life, as we all knew it, had changed and just as I had had an enormous amount to time to think and contemplate the last 2 years, I was not prepared for what was to come.
On January 18, 2022, I went in for my yearly colonoscopy. This is part of my cancer screening and is something that I have done since 2011. My histopathology came back showing the removal of a tubulovillous adenoma with extensive high-grade dysplasia, and lots of other medical terminology that no one ever wants to see on a report. I cannot tell you how much my heart sank. My specialist of 11 years was now all but retired to Queensland and his office admin were under strict instructions not to contact him under any circumstances (unless it was his week on in Melbourne) so getting hold of the right people to give this the urgency I felt it needed was nothing short of challenging. Getting past the frustration of pouring out my history to medical receptionists and being able to speak to ‘someone’ that would call me back sent me into meltdown.
Living with a genetic predisposition to gastrointestinal cancers is not something you can fully appreciate unless you are living it. Its not like a cough or cold that you ‘get through’ and then your life becomes healthy again. Living with this constant threat of another ‘C’ is my life. Fatigue and fall out from multiple surgeries is a daily grind. I have to prioritize everything, and I mean everything. From what I can do in a day, to who and what I give my energy and time to. What I eat on a daily basis can affect my hydration levels, my bowels, my ability to complete tasks and how much I can do physically. AND let me tell you, no matter how much spiritual work I do and how positive I am, shit things happen. Shit does not discriminate. It doesn’t care how kind or generous you are. It doesn’t matter if you give your last $20 to the homeless guy outside Woollies or how many self-help books you have beside your bed. Shit doesn’t care how much money you have in the bank or how many friends you have. Shit just happens.
Two gastroenterologists, my oncologist and a colorectal specialist later I was given the option for a partial colectomy or close monitoring (quarterly colonoscopies). It was explained to me that the partial colectomy involved the removal of ¾ of my bowel with a 12-18 month recovery and the possibility of a temporary or permanent colostomy bag. The thought of having to endure the same recovery as my gastrectomy was more than I could cope with so against my oncologists wishes I went with the latter.
This experience cracked me open to my very core. My mental health suffered on a scale I have never experienced. For the first time ever, I knew I could no longer do this on my own. I sought medical intervention for my anxiety and depression and by May 2022 I was speaking with a psychologist and on medication. It almost seems insane that I waited until I was right on the edge of self-destruction before I took these steps. My belief was always ‘I can do this on my own.’ Surely with all the self-help and spiritual guidance I had for support, seeking medical intervention seemed weak. How can I be a Reiki Master, a Lightworker Practioner, lead women in Circle, know all that I know and need help for my mental health? It felt like I had failed. That by doing this I was ‘a fake’ and clearly not spiritual enough to heal this myself. Pushing past all these belief systems was challenging. I accepted that being vulnerable was not a sign a weakness and even if we have all the answers we need inside, sometimes its a hell of alot easier if someone is holding your hand as you walk through it.
Not all that long ago I listened to a podcast from the Spiritual Tradie and he spoke to someone regarding our ‘Spiritual tool shed.’ That we have all been living in a state of overwhelm for such an extended period of time that even if we feel we had all the spiritual resources at our fingertips, some of us forgot where we put the key to the shed. This was me in a nutshell. I was thrown back 11 years when I was just a babe on my spiritual journey. While everyone else went on re-planning events that were delayed through the pandemic, I was being thrown back into a space of the unknown, of poking and prodding, tests upon tests, hospital and specialists’ appointments. So, not only was it was imperative I stay virus free but I had to navigate what this potentially meant for me and my family. And I cried and cried and cried.
2022 was also a huge year of acceptance. Finally facing my health issues head on and really accepting my limitations, which grieved me more than I had imagined it would. Letting my grey hair grow out (for a time) and seeing the 100% me. It’s a weird feeling being a woman in her 50’s, it truly is a bit of a void. It’s like a light switch turns on and you start the see the world differently. You certainly may not feel ‘old’, but your reflection lets you know otherwise. I remember my mum telling me that when women hit a certain age they suddenly become invisible. We sort of slink into the background. We let go of the last strands of youth but have to learn to reshape that into something new. Something inside us stirs and if we give ourselves permission, we can make own rules. Simply nod your head and leave the youth to make their own mistakes as you start to weave a new life, your way. No ‘bullshit.’ But this to is something we need time to adjust to, and for a while anyway we feel suspended in that space ‘in-between’.
Last year un-braved me so much that I wasn’t sure if I even wanted to face what may lay ahead. I am proud that I resourced myself, learned how to take better care of me and I am happy to report I am in a much better place now. If you are having a tough time, know that there is help out there if you seek it, and if you don’t know where to start, go and speak to your GP or a qualified medical practitioner. It is okay to be a complete mess and to have no idea where your life is going, no matter how old you are. The Tower always brings extreme emotional turmoil, chaos and scary adjustments. If The Tower has entered your life, then it’s time to rethink your foundations, open yourself up to a clearer spiritual path and a more truthful existence and remember you don’t have to do it alone.
Today is not forever. <3
Michelle
Image Credit https://unsplash.com/@sammiechaffin
