My name is Philippa Morgan, I am 43, married to Chris with two children aged 13 and 11. We live about 25 minutes south of Hobart on the edge of the Huon Valley. Our house is on 25 acres of pasture and bush, and we share it with the native animals ( including Tasmanian Devils and Quolls), and our menagerie of horses, dogs, chickens, and an exceptionally brilliant black cat. I work as a criminal defence barrister, and have practiced law for 20 years. It is a career that I love, and it brings me into contact with people from all walks of life. In my spare time I enjoy being outdoors, bushwalking, riding, running, cooking and eating and spending time with my family, and mates.
What impact has NETs had on your life?
My experience of NETs comes from being the carer and close relative of a NETs patient. My mum ( Jules) was diagnosed with stage 4 NETS in late 2016. We lost my Dad in a car crash about 15 years ago, so despite being a 4 foot 11 inch powerhouse of independence, mum really needed my sister and I to be there for her as she worked through diagnosis, understanding of her disease and treatment plans. The shock of the her diagnosis for all of us was gradually replaced with feelings of vindication that her symptoms were real (and life threatening) after years of misdiagnosis, and recent rapid deterioration in her health. This quickly gave way to a desire to understand this unusual, and little known cancer she was facing. Living in a semi-regional area (Tasmania) has meant we have travelled to Melbourne for treatment and review and she has been treated mainly from the incredible Peter Mac Centre. This disease has bought some unexpected highs and lows to our lives. Our travel ( me as my mother’s carer) to Victoria for surgery, PRRT and regular review has allowed us to meet an incredible and inspiring collection of expert medical carers, and allowed us to appreciate the time we have together outside the everyday routine of school drop offs, supermarkets, and work.
My mum has bravely weathered almost all this disease can throw at someone. Double heart valve replacement, PRRT, carcinoid crisis as well as chronic symptoms associated with her diagnosis.
What drew you to become involved in the CAG?
I remember going to the Cancer Council in Hobart when mum was diagnosed looking for information, and I recall there were hundreds of information pamphlet for all sorts of cancers. The NETs pamphlet was hard to find, and I had to ask for help to find it. I recall the helpful assistant telling me about the Unicorn foundation ( as it was) and I looked them up. That was the beginning of my understanding that this is a disease that doesn’t get much airtime. I have a strong sense of giving back to the community, and gain a lot of satisfaction from doing so. I am actively involved with my kids sporting clubs, and school. I have a career in advocacy and when I saw the advertised position I instantly felt quite drawn to it, despite having little understanding of the exact nature of the role! It spoke to my skillset, my desire to give back, and was also a way I believed I could honour my mum and the journey she is on.
What advice would you to give to a newly diagnosed patient? What has been most helpful to you in your NET experience?
Ask questions and learn as much as you can. Engage with the your local support groups. Make sure your family understand what you’re going through – warts and all. Australia has some of the best specialists in the World dealing with NETs, you’re in good hands. x
