Hi, this is the lady in question, Emma Capell.
Thank you so much for your kind words and well wishes. The sensationalist article wasn’t totally correct, sadly. I was not ‘sent home to die’, but I did spent 2 weeks at home awaiting biopsy and diagnosis, (having been shown MRI images of a super rare tumour in the middle of my head that the major hospital could not identify), believing it was brain cancer and that I had on average 15 months to live as per the brain cancer leaflets I read in hospital. I also happened upon a documentary on TV about a woman Tambu Makinzi with my same tumour who died 4 years after her treatment failed and it enlarged to 2kg. This was a wake up call to get the right treatment.
I saw 9 specialists in total for 2nd and 3rd opinions and was initially offered only normal radiation in Australia.
After seeing how little experience there was here for treating my particular tumour, due to its rarity (one in 2 to 3 million) I did do extensive research via reading and talking to skull base chondrosarcoma patients around the world, on Facebook. That part is true. I learned that only proton would work on my tumour which was sadly inoperable and resistant to both chemo and normal radiation. I then found an oncologist (indirectly through Rare Cancers Australia) who agreed that proton radiation would be the best option for me. She helped me with my application for overseas treatment funding with MTOP (Medical Treatment Overseas Programme) and here I am, well and totally grateful.
I did the Daily Mail interview to let people with rare cancers know that they might find information on as well as other patients of their rare cancers. Facebook support groups do more than offer prayer; they offer very practical advice gleaned from their own worldwide specialists and medical journeys. I was not given any bogus information. When you post a question, you get multiple answers from people who have lived through the fear and subsequent treatments. It was invaluable information and support and still is, as you adjust to your ‘new normal’. I also wanted to let people know that there is government funding available through MTOP if you meet the strict criteria, for treatment overseas. Most importantly, I hope my story helps bring Proton radiotherapy to Australia. There are 50 machines around the world, mostly in the USA but in much small countries also. I believe we are long overdue for offering proton here!
I hope this makes sense, all the best
Emma


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Published 17th September 2019

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