What's in a Date? Bryan's NET story

What's in a Date? Bryan's NET story

Written for NET Cancer Day, November 2023

When you are growing up dates mean a lot of things to children. Birthdays, Christmas, school holidays. After the teenage years only one date was important to me and that is 29 September. Why? That's the day I married my sweetheart Sharlene, and every year we celebrate our cherished day which was our wedding day 56 years ago. 

Another date has also become important to me and that is November the 10th. Why? That's the day that those with NET cancer and their family and friends pause to remember NET Cancer Day.

Every day someone in New Zealand is diagnosed with Neuroendocrine Cancer and to date there is no cure for this cancer.  This is the story of my journey through time living with NET Cancer. 

In 2013 I accompanied Sharlene to her specialist to make arrangements for her routine colonoscopy. The specialist turned to me and asked me if I had ever had one. I said I had not been having any obvious symptoms of anything wrong in that department so why bother? Well I agreed to the colonoscopy and when we went back to the specialist Sharlene got the all clear and turning to me he said “You have something suspicious in your Terminal Ilium (the area where the small and large bowel join) and we will keep an eye on you”. 

A month later Sharlene and I went for a long weekend holiday at Auckland and on the Friday afternoon we booked into our accommodation and did a little sightseeing and had dinner. Around 8pm I started to have stomach pain which got to an acute stage. I was in absolute agony and I started vomiting and terrible diarrhoea. It was more than food poisoning as I was vomiting bile and I was unable to find any position which helped the pain subside I had no comfort in lying sitting standing, The pain did not ease I was in deep strife. 

Sharlene knew there was something seriously wrong with me so rather than go to an Auckland A&E she bundled me into the car and drove to Waikato Hospital A&E where they ran a barrage of tests including a CT Scan and diagnosed mesenteric adenitis which means swollen (inflamed) lymph glands in the tummy (abdomen). 

I was discharged a follow up appointment was made with my surgeon who ordered additional CT scans and an attempt was made to locate and biopsy an enlarged lymph node which was not successful. A second colonoscopy was performed and this showed an almost complete blockage of my terminal ilium. 

Keyhole surgery was quickly scheduled and after 6 hours of surgery I was back in my room to be greeted by an anxious Sharlene. Initial recovery went pretty well with solid food being slowly introduced to my diet and I was discharged from hospital on the fourth day to complete my recovery at home. After a couple of months I was not going so good I was losing weight fast and visited my surgeon again who admitted me to Waikato Hospital for observation and his house surgeon found out that my thinking ability was not too flash and ordered a head and neck CT scan. It was then discovered that I had suffered 2 strokes (I didn’t know that but the two years before my surgery I displayed poor cognitive function and that was when I had the strokes but that is another story). I was discharged with a prescription for Diasip (a dietary supplement drink fortified with vitamins and minerals for patients with diabetes). 

I was back home and on the mend physically but mentally I was in deep despair and depression My GP prescribed the needed medication and some remedial therapy with a psychologist which helped a little but spent countless hours in bed not wanting to get up and face the world and this lasted a couple of years. I felt that my whole life had been taken away from me, my anxiety was high and my joy was low. People who I felt could encourage me treated me like I had the plague and Sharlene and I had a life of lonesomeness. I eventually plucked up courage to go the Hamilton Cancer Society’s patient support group and found the everyone there had a story similar to mine and I found the mutual support and encouragement from fellow cancer sufferers gave me some hope, I was starting to see light at the end of the tunnel. At one of the Cancer support groups the facilitator gave me a brochure about the New Zealand Unicorn Foundation now called Neuroendocrine Cancer NZ, an organization set up to support patients with NET cancer to raise money to help with the purchase of treatment equipment but most importantly be a voice of the hundreds of Kiwi's living with NET Cancer.   

I had found what I was looking for, I received a lot of information about living with NET cancer and attended their annual education day held at Auckland.  I began my own private study about NETs searching the internet and have found that there are many useful You Tube video’s and Internet forums from both patients and medical professionals describing the new advances in therapy treatments available and the many soon to come online once patient testing has occurred and they are approved for general use. I am particularly excited that PRRT treatment (A treatment using radioactive particles injected into the patient and their main job is to seek out NET cells and destroy them) is now available in Auckland after a hard fight by Neuroendocrine Cancer NZ and others  although it does have some risky side effects it extends years too some patient’s lives.  

There are many treatments coming online for NET patients and some are very successful. 

Well its NET cancer day this week on the 10th and how am I going?  After ten good years, my six monthly blood tests are now trending down hill in the liver health and diabetes department and my latest CT scan is remarkable with something showing in section 8 of my liver but I continue to box onwards. I often have really low energy days and use these for my research on the good days both Sharlene and I love to get out in the garden it is good therapy. 

2023 has been a difficult year I have had numerous hospital admissions this year including three bouts of pericarditis and a stroke double pneumonia. I am grateful for the medical help I get from the Endocrinology and Ostomy Department of the Waikato hospital that supplies my needs to live a life where I can go away from home for trips away. And for the government who fund the medication I require but most importantly for the Neuroendocrine Cancer NZ staff many friends in the NET community who are always there to give encouragement and mutual support. 

It is encouraging to find that many NET patients die with this cancer some who are not even diagnosed but discovered during autopsy. However, depending on the severity and grade of the  NET cancer we lose quite a few of our friends each year.   

When I reflect on my pre-diagnosis time I did have symptoms; light bloating and other digestive problems.  Today I am a firm advocate of having diagnostic tests done if you are not well and suffer such things as bloating and a runny tummy. NET cancer pops up everywhere in your body and many patients are not diagnosed until they are on the wrong side of the slope. 

Sharlene and I have taken up photography as a hobby, we have Identical SONY cameras (one is taking these photos) so it’s much easier to learn the art of good photography and we especially like photographing the birdlife at the Miranda shorebird area where we can see little birds that make the epic journey to Nome in Alaska and return home each year. Even their babies make it back to New Zealand a true miracle because of a tiny bit of magnetite just below their brain.  

Wishing everyone a happy and joyful NET Cancer Day 

Bryan