1. What impact has NETs had on your life?
Being diagnosed with NETs 6 years ago has had a huge impact on my life. I take very little for granted now and it really does make me appreciate every milestone my kids reach, every Christmas we have together and friends and family who understand what I am going through and are a constant support and someone to rely on even for a cup of tea or glass of bubbles when I need it. My disease has rarely been stable over this time and monthly injections, scans and treatments are fairly regular. It makes it really hard to plan holidays, hold down a regular job and sometimes even the energy day to day to look after my family.
2. What drew you to become involved in the CAG?
I was very interested in becoming involved in the CAG as I wanted the chance to become more involved in the Unicorn Foundation and give back some of the huge amounts of support I have received from them, work with other likeminded patients, carers and CAG members to create awareness, make NETs a priority for Cancer Research and do what I could to learn as much as I can about NETs.
3. What advice would you to give to a newly diagnosed patient? What has been most helpful to you in your NET experience?
My advice to a newly diagnosed patient would be to find a local support group to attend and try to find other with NETs to meet up with or be able chat to. Ask yourself if you are happy with your doctors, do they know enough about the disease and specialise or have an interest in NETs.
I love going to meetings and seeing some of the same people over and over. It is heartbreaking when a NETs friend loses their battle but seems to make us all stronger and more determine. Cancer patients in general despite perhaps a different diagnosis have much in common and I have found that connecting with a friend locally has been a great way to chat and discuss so much with….especially when they just “get it” or understand so much of what I am going through.