In August 2022 I was enjoying life, working as a PE Teacher, fit and healthy (I thought I was) when I visited my doctor for my yearly check-up. The only complaint I had was some reflux and a little bloating. He sent me for blood tests and added an ultrasound. Two days later he delivered some news that would change the course of my family’s life. I had a mass/tumour on the head of my pancreas. The thing I couldn’t get my head around was I had none of the common symptoms. My doctor got the ball rolling asap booking an MRI to check lungs and liver followed by a meeting with a bariatric doctor, A/ Prof Sivakumar Gananadha. He explained what he thought I had, a (PNET) but needed a full CT scan and biopsy to confirm. As we were into week 3 after diagnosis, he gave us information to read and referred me to Dr Chris Lim, a surgeon who sub-specialises in complex oncological surgery of the liver and pancreas. As week 4 rolled in Dr Lim had already reviewed my case and by the time, we meet he talked us through the results, grade 1 PNET and the recommended surgery, a Whipple Procedure. The next thing he offered was he could perform the surgery in 2 weeks (September 26), approximately 6 weeks from diagnosis to surgery. We (family) were a bit taken back by how quick things were moving.
I had a 12-hour surgery which was longer than expected due to the removal of lymph nodes and lesions on my liver and was discharged from hospital after 10 days. Whilst glad to be home it was a hard slog. The biggest challenge when I returned home was diet which was basically learning how to eat again along with Creon tablets which is very much a trial and error as to how much you take. For some stupid reason I thought I would come home prepare all these meals in small containers, eat normally, bowels working and away I go. HOW wrong that turned out, in total I have lost 24kg and doubt I would get anywhere near that again. However, I am also happy with the 70 kg I am now. I also see a dietitian
named Karen Percy from Pivotal Nutrition who has had experience with patients
who have PNets.
At my first post-surgery meeting in November 2022, I was advised that the NET lesion deep in my liver was incurable, but there was no reason with time I could get back to some normality. I also started Lanreotide injections which I have once a month and as of May 17, 2023, seems to be working at slowing the liver growth.
I returned to being a PE teacher in February 2023 and the first 5 weeks was a slog – more to do with fatigue late in the afternoons but, that seemed to disappear for some reason and then returned a couple of times. I go to the gym at least 4/5 days a week on a modified strength program that is capped at 35 minutes. My cardio is basically moving from class to class or general walking. Pre-surgery I use to join in with my PE classes playing various games, but post Whipple’s, I had to cease participation as the body just wasn’t the same.
In June 2023 I had a bowel obstruction, possibly due to scar tissue but surfaced from 4 days in hospital feeling great. Overall, it’s not all plain sailing. Bowel movements are inconsistent, Creon is like eating jellybeans and pain anywhere around the abdomen area can trigger one’s mind to start thinking as to what it might be. The main thing is live life as best you can and enjoy it. I know NETS will continue to be a rocky road for me, I have accepted that. The one thing I have learned is you need to be proactive with any type of medical appointment or chasing up scans/results etc. It just gives me a sense where I can be better informed with what we are dealing with, how best to deal with it and what is the next step.
I am very lucky I have a wonderful wife, who attends every appointment and writes down specific’s whilst asking questions, something I’m not good at. We also have 3 beautiful children who we always keep informed.
Finally, a BIG thank you to my wife and kids for their support as I couldn’t have gotten to this stage without them, along with my close friends and their families. Also a big thanks to my work colleagues, medical team, Canberra NETS support group and NeuroEndocrine Cancer Australia who are supporting all NET patients Australia wide.
