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My life changed forever on 1st November last year as a very fit, healthy and very active 51year old I sat on my lounge that Sunday evening with my husband Evan and my dogs after enjoying our evening meal to watch some television, however, within an hour I was superbly impersonating a Cyanide victim extracted from an Agatha Christie novel!
The pain in my gut was nothing short of chaotic agony, my stomach had installed a “No Entry Sign” with barricades not only forcibly restricting all possible trespassers, but marching them unceremoniously back from whence they came. Two vain attempts at ingesting pain killers were met by defensive cannon fire enforcing their immediate return.
It is impossible to explain to you in words how a person can be perfectly healthy one minute, then violently ill barely half an hour later, then admitted to Hospital within two. But that is exactly what happened to me, no warning, no symptoms, nothing, but on that night, my life had changed forever.
What transpired over the following days and weeks was so surreal, it seemed like I was floating in a satellite orbiting Planet Earth overseeing the unfolding events from another world.
I spent six hours on the operating table on the Tuesday. The surgeons at Toowoomba Hospital removed a 22mm x15mm x 10mm growth that had emanated from the intersection of my small and large bowel. This spot is exactly where my Appendix had comfortably resided until its removal some 35 years earlier, with this mass apparently assuming residency not long after, merrily growing about its existence without bothering to inform me in any shape or form.
So large had this mass become, it rudely left no room for the bowel to continue its usual important daily operations, the Surgeons were faultless, the mass was extricated without complication, albeit after a life threatening six hour ordeal.
Twelve long days then passed in a hive of hospital routine. I did not eat for 5 days, passed no bowel motions for 6, could not walk without assistance or stooping for 7 days, kept alive by an hourly procession of drugs taken both orally and intravenously, and I lost 15kg in weight.
Methodically, learning how to eat again with Jatz Bickies, teaching my bowels to function normally again, my legs how to walk naturally again, my stomach to straighten despite the 30cm wound with 45 staples carved through its centre, prescription medications so abundant Pfizer executives would have been discussing the purchase of their new Villas in Switzerland, blood tests twice per day, urine tests, X Rays, Ultrasounds, Pet Scans, CT Scans, doctor after doctor inspecting me as if I were the Elephant Man in a Circus.
So as you can see the impact on my life was phenomenal: healthy and normal on Saturday by Sunday night my whole life had done an about face.
2. What has been most helpful to you in your NET experience?
Doctors informed me that I had Stage 4, incurable cancer and the mass removed from my bowels, was the littered culprit. The tumour had metastasised, to my abdomen, liver and there was also a spot on one of my ribs. However, very little was actually explained to me during my initial stay in Hospital, more tests had to be completed before a full and proper diagnosis could be concluded. All I knew was that I had cancer and I had 2-3 weeks alone with my mind to work that one over and over before anyone would speak to me and help me.
I was very frustrated, and I felt helpless . . . . . it was not until my first scheduled appointment with the Oncology Team at Toowoomba Hospital on 4 December, a month after the operation, that a complete diagnosis and explanation was conveyed to me, allowing me to fully understand what was happening with my own body.
It was my first meeting with the Oncologist that I first understood that I wasn’t alone. Not only was there a team of people to help me deal with my physical and emotional needs, I was told by my Oncologist to go home and google, The Unicorn Foundation. This piece of advice changed my life – my new life with nets - for the better.
3. What advice would you to give to a newly diagnosed patient?
Don’t panic! Which is easy to say!! Take a deep breath and get all the information – if you can, don’t do it on your own. Take someone with you to your appointments as you will not take in all the medical information that the doctors will tell you. Reach out to the Unicorn Foundation: through their website, through the private group on Facebook where there are people just like you who will listen and support you – even if you are just having a bad day. Attend the meet ups that are organised through the UF – sometimes all it takes is to be with other people who are going through the same thing as you. If you have a query about your illness, contact the friendly Nets Nurse who is there for each one of us.
Cancer, was without doubt, the most demoralising word ever conveyed to me, and indeed is a frightening word to swallow. It is a continuous yet anxious challenge to absorb its proper understanding and what it means to my life. However, knowing that my family, friends and the Unicorn Foundation is behind me, makes the journey less daunting.