A Life Lived “Ostomistically”
A few years ago, through blogging, I became mates with an awesome woman called Talya Goding. Talya was juggling multiple medical conditions, a situation she handled with a rare mixture of raw honesty, strength, vulnerability and grace. She shared her story of living with an ostomy and her cancer story through her blog, Feeling Ostomistic. She even used her experiences to help and support other young people going through similar struggles.
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The sweet, kind, generous, hilarious friend that would make it her business to tell me about crazy vagina products or hit me up with blogger goss. And yesterday morning, I learned that she had passed away in her sleep.
Death is shocking, even when you know it’s coming
I knew how sick my friend was; I remember talking with her about how she’d lived past all estimates, helping her weight up the pros and cons of a particular drug trial, even checking with her to see what kind of stoma bags she used when a friend was looking to give away a relative’s supply that was no longer needed. Her honesty about her pain levels and frequent trips to hospital also left me in no doubt; my lovely friend was not a well person. And yet, when I heard the news of her death, I was still shocked.
Along with giggles and gossip, we helped each other with writing stuff. I helped her edit a story she wrote for a course she was doing; she helped me by being my subject when I had to profile someone for my Cert IV in Professional Writing & Editing. It’s in a different tone to what I’d normally use on the blog, but I think Talya still shines through. I’m sharing it here, in memory of the excellent human she was. I was very lucky to know her.
6 years ago, a young Talya Goding discovered that her father had a rare, genetic form of bowel cancer known as ‘Familial Adenomatous Polyposis’. Talya had just gotten married to Russell and the world was at their feet. Except, of course, for the health concerns she had been experiencing. Her digestive problems had been labelled ‘Irritable bowel syndrome’ and needed further exploration. Talya had no known family history of bowel cancers, so initially doctors weren’t overly concerned. This changed when her father, then 39, was diagnosed with ‘Familial Adenomatus Polyposis’.
What The FAP?
‘Familial Adenomatus Polyposis’, called FAP for short, is a rare form of bowel cancer that creates benign polyps in the colon and rectum. If it isn’t detected or treated, these polyps turn cancerous, usually when the person carrying them is in their mid to late 30s.
FAP is very rare. Carriers of the FAP genetic mutations have an almost 100% chance of being diagnosed with bowel cancer. Screening and treatment usually begins at around 12-15 years old. Talya was around 20 years old at the time of diagnosis. Her father was 39 when he was diagnosed and lived to the age of 41.
Life After Diagnosis.
Since her diagnosis, Talya’s life has been complicated by the treatments she has had to undergo and not only to treat the FAP itself. She’s had brain cysts, stage IV endometriosis, thyroid cancer, other tumours and pancreatitis. These conditions are believed to be related to the FAP.
At 22, Talya had her large bowel and most of her rectum removed as it had become cancerous. It was replaced with a permanent ileostomy. Essentially, Talya must wear a bag attached to her skin around an opening out of which waste passes.
Talya shares the reality of life with a stoma through her blog and social media channels.
Each day, Talya wakes up and heads to the bathroom, like most of us do. The difference being that she will need to empty her stoma bag while she’s in there. After that, it’s a breakfast of medications including an injection. After a rest, Talya loves heading out for lunch if she’s feeling up to it and fills her afternoon with creative pursuits like writing and design.
Talya has to change her stoma bag as needed during the day, something that took some getting used to. A stoma is an opening into the gut, after all. Yet she takes it in her stride, writing about it to help others with everything from advice to humour. Her blog, Feeling Ostomistic, keeps her optimistic, creative mind occupied. It’s a valuable channel for her thoughts and feelings.
When confronted with our own mortality, most are reluctant to make future plans. Not Talya. She’s continued to reach for her own dreams and actually realised her biggest one- owning her own home.
The next thing she has in her sights is a beautiful garden centred around a large, mossy rock. Talya wants the rock to be her marker once she has passed away; somewhere her loved ones can visit to read a funny plaque and remember her. The garden is being funded by the generosity of people who have heard about Talya’s journey. Her husband, Russ, started a crowdfunding page, www.gofundme.com/gardenfortalya, and they are almost at their target of $15K.
With trademark humour, Talya is even buying gifts for loved ones to celebrate important milestones that will occur after she has passed on, not trusting her husband to the task later on!
Feeling Better Through Giving.
Talya has always felt it was her life’s mission to help others. Being in her twenties with a terminal illness has been no barrier.
Talya has volunteered since her teenage years. When she heard about ‘Share the Dignity’, a group that aims to supply homeless women with sanitary items, she knew she had to get involved. Talya uses her business to support charities that mean a lot to her.
“I remember struggling as a student and having to choose between buying pads and buying food. How could I not help any woman in that position?” she asks.
Talya has supported Share the Dignity in their drives for sanitary items and their annual #itsinthebag campaign, where people can fill a handbag with useful items to donate. Despite having entered the palliative stage of her illness, she has volunteered with them again this year to help with their Christmas campaign.
Life is for Living.
Talya has connected with others in similar situations. Lately, though, she’s felt less equipped to deal with the emotional issues that other people bring her. Not one to shrug them off, Talya has enrolled to study counselling. She might not have the luxury of time that others might. She’s committed to using her time fulfilling that life’s mission of helping.
Talya’s positivity, mission in life and determination in reaching her own goals show us that life, while precarious and unpredictable, is there to be lived, no matter what.
Talya leaves behind her husband, Russell. You can help him to pay for her funeral and also take some time off work to grieve here if you would like to.