Another Bumpy Ride

by | Aug 23, 2023

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

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