NO THANK YOU

Heart on Fire

Soundcloud music page.
Playlists curated and dedicated to some of my favs and music I like.
A treasure cove for cratediggers.
Music archived for ears.


👑
Madison
Peta
Torrence

I love music
Don’t forget to tie your laces

Ye olde vegan. Love animals? It takes a lot of love to not eat/wear/exploit/gamble on their precious lil souls. Be a safe human bean in a world that 'forgot' to value kindness to animals/people/mama earth xx

PS. If you find this page + we share a lot of DNA 🙃 (hi to my long lost siblings), please get checked for Serrated Polyposis Syndrome (SPS), Factor V Leiden, Endometriosis + Hypermobile Ehlers Danlos Syndrome (hEDS).

SPS :: I had nil symptoms: x6 surgeries in 14 months (every 3mths); 74+ biopsies + x2 lesions; most precancerous. Rapid recurrence (twice) identified at 2 sites near my caecum; with polyps regrowing in 3mth intervals (biopsied Sep 2024, recurrence found Dec 2024 + recurrence found again Feb 2025). Polyps usually take 10yrs to grow; these popped up in 3 months. My 7th surgery in 20 months is planned for August 2025.

Dysplasia is advanced so if it hadn’t have been found, I would have had BC very soon. I am so lucky that this was found by chance. I've been vegan for almost 20 years + I think this saved my life. My GP was stunned when he saw the histopath - I would've had BC within a year or so. My only symptoms were bloating, burping + abdominal pain, all of which I attributed to endometriosis + reflux.. I am so thankful that my GP + first Specialist chose to take it seriously (especially since I have no medical history from my biological father's side of the family).

I’ve got an appointment with the Head of Endoscopy at The Alfred in mid June. Prof Brown asked me to attend their GI Risk Management Clinic + I suspect they’re going to want to broach the idea of resection. My Specialist in Sydney had mentioned that partial or complete bowel resection is a possibility, and potentially a permanent or temporary stoma. It was a lot to digest then, but I'm at peace with whatever unfolds. It may be that this never eventuates but recurrence twice isn't something I take lightly so I'll be guided by Prof + the other surgical teams advice.

I was fortunate to access DNA testing at Westmead's Familial Cancer Service in Dec 2024 for SPS. Thankfully, this excluded other polyposis conditions, so we *only* have to worry about inheriting bowel cancer ('stool' better than nothing!).

Despite my Gastroenterologist + Geneticist both writing letters (2024 + 2025) advising the risk to my first degree relatives, NSW Health + The Royal Hospital for Women, Sydney (IVF Clinic where we were conceived) opted not to search for my siblings to let them know to get checked (they're at x3 times the risk of bowel cancer; my risk is 25-40%). My Geneticist will do her best to tell my siblings, so even if I can't - there's a contingency plan.

My Gastroenterologist + Geneticist have been shocked that NSW Health + the RHW haven't taken the necessary steps to tell my siblings + our biological father, his children (also our siblings) + grandchildren - they are also at x3 times the risk of bowel cancer. Interestingly, even if my relatives have a clear scope, my Geneticist was emphatic that they'd need repeat scopes every 5 years - which should give an indication of their risk. I've offered to submit my DNA to be checked against the Guthrie Test DNA databases - TBC! We need a National approach to ensure consistency + prevent individual states/IVF Clinics from adopting a cavalier cowboy approach to disseminating (or not) critical health information to our relatives (our family) 🤔

Please know I've tried to get politicians to help protect my siblings :: Federal, NSW + VIC. I haven't had the energy to ask for help from the media yet. I feel so much guilt that I have this information + my siblings don't, yet no one seems to care. We matter, until we don't. IVF Statistics that count :: live births (not premature deaths from decidedly unsexy inherited conditions). It's a bum deal 🥳🥁

I've been vegan for 19 years, alcohol-free for a decade (after I read the links to cancer; there's no safe amount, even 1 drink per day or binge drinking significantly increases our risk). As my GP said, 'You can do everything right but you can't outrun a genetic condition'.

Love from a very tired human bean ♥️⚓

PS. I'm on GEDmatch (A189256) so irrespective of where you've taken a DNA test, you'll be able to upload your raw DNA data file. Most of my work is on Ancestry; if you need help accessing it, reach out to my cousin, Nicky (NoK). Our DNA is a puzzle! I've solved many other cases but our relatives must have migrated everywhere - we have close matches in NZ, UK, US, etc. Maybe it'll fall into place in time.. or it won't.. just know I've tried my best to get this information to my family xx

'Don't Cry, It's Only Death' –– it's not as though the IVF Industry listened to us 12 years ago when my mate Rel (Narelle Grech) died of inherited bowel cancer on 26 March 2013. We first met as 15 year olds + joked that it would take one of us dying before Politicians, Doctors + Commissioning Parents would take our concerns seriously re: lack of access to accurate + updated medical history. She should be here instead of me; Rel is/was one of the kindest souls I've ever met.

Heart on Fire

Little Simz