This was followed up by regular surveillance which consisted of both gastroscopies & colonoscopies. In May 2016, these check-ups showed a cancerous mass at the junction of the ileum and the ileorecatal anastomosis.
Several scans later (including CT, PET & MRI) it indicated there was no invasion present.
The plan then was to remove the cancer by completing an ileorecatal anastomosis and constructing a pouch using the small bowel. A temporary ileostomy would also be constructed and if successful, would be closed about three months later.
I had my surgery in July of 2016 as planned. The hardest part after the surgery was waiting for the pathology results, just in case the cancer had spread. When your doctor arrives late in the evening you know something is up, and it was. The cancer had spread to 5 of the 19 lymph nodes tested.
This was rather unexpected and to be frank I was now stepping into the unknown. The Oncologist came and spoke to me and my husband and explained that chemotherapy was needed to fight this dreadful disease. Eight days after surgery I was allowed home.
What followed was a visit to the Oncologist to discuss my options. It was then that I was told I would need 12 rounds of FOLFOX 4 (Fluorouracil, Leucovorin, Oxaliplatin) chemo at two week intervals which were to commence as soon as possible. Each fortnight I would go to the hospital for around 4 hours and then home with it attached to me for the next 48 hours. The District Nurse would then come and disconnect it from me. That was always a great day being freed from the potent drugs yet again.
A port had to be fitted to enable the chemo to be administered so another day trip to hospital was in order. The local Cancer Nurse made contact and we met to discuss my treatment plan and what other support was available. She soon become a great support person and has always been just a phone call away.
The first round of chemo was in September 2016, some four months after the initial scopes.
Almost instantly there was tingling in my fingers and didn’t take much longer to have them in my feet, something that I still have up until this day. The dreadful metallic taste in my mouth and not being able to tolerate anything cold for up to 4 days post chemo; it was just one challenge after the other. Thank goodness for a very supportive and understanding husband and family who have been there every step of the way. It’s not something that I could ever have managed on my own.
I had one goal after my surgery; everyone knew my goal including my doctors. That was to play golf in October with three close friends in a state event in Melbourne. With the doctor’s clearance I managed to do just that. We had an awesome day, a chance to forget about the crap and enjoy something that I love to do.
Many trips to hospital were to follow. A rectrovaginal fistula presented itself in late October 2016, although it's diagnosis was not confirmed until July 2017 as the various tests conducted were inconclusive. It was hoped that with time it would heal itself, but recent tests indicate surgery would be needed to repair this before we can even look at any reversal surgery.
Many spikes in temperature saw me hospitalised, having zero neutrophils saw me in isolation. Chemo finished in early February 2017, the last few treatments were very difficult when the body is telling me it has had enough.
Over the next few months my body slowly improved with the assistance of a naturopath who modified my diet and introduced some additional supplements.
A CT scan in April 2017 was all clear, probably the first time I had heard something positive about my journey. It was such a relief!
Another challenge I faced was the fact I had an inverted stoma which created lots of problems; leaks, blow outs, pain and irritation which have all taken time to manage. As the doctors said, often patients undergoing this surgery either get a good pouch or a good stoma but often you don’t get both. Trying to stay positive, I was thankful that the pouch was in good condition but still found it to be very frustrating.
During my treatment, I was fortunate enough to have a supportive employer who allowed
me to work when I felt well enough. With continued improvement in my health, I am now working three days a week. The rehabilitation exercise program through my local cancer support group has helped me to increase my fitness and I am now back playing golf at a competitive level. I am so very thankful for their support.
From the day of my diagnosis I have always remained positive and believed I will beat this. Having a good support team of family and friends has helped immensely. When you are feeling down they are there offering a shoulder to lean on or an ear to listen.
Something you often hear, which has resonated for me, is the fact that you know your body and if you believe that something is not quite right you should seek answers. If you find yourself feeling a little off, keep asking until you find the answer. This is something that I have had to do more than I would have liked, but in doing so it has given me peace of mind and answers to the questions or concerns I have had.
Please use all the support and resources that are available to you, they are there to help you every step of the way. You are not alone and if you feel you are then I strongly recommend reaching out for some support.