Hope is a word John Olsen uses to talk about the little known cancer he has and others could have inside them.
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The Kings Point resident is a neuroendocrine cancer patient and wants more people to be aware of the condition.
He has hope for the future because of medical advances, better treatments and support from the likes of the NeuroEndocrine Cancer Australia [NECA].
Given that one Australian is diagnosed with a neuroendocrine tumour [NET] every 90 minutes it is amazing that more people are not aware of the condition.
John did not have to come forward to tell his story but he did.
He wanted to support the neuroendocrine cancer group, because of the support they gave him, and help raise awareness about this little known cancer.
This is his story ...
Where to turn for help with dreaded diagnosis comes
The Kings Point resident said when things were difficult for him - the NECA was a tower of support.
"I didn't really have a lot of answers and I had nowhere to turn," John said to explain about his early difficulties in 2020.
The group, as he came to terms with his condition, gave him advice and suggested people he could contact.
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Making people more aware of neuroendocrine cancer is the main reason why John wanted to go public.
Until he was told he had neuroendocrine cancer, John had never heard of the condition before.
John, who recently turned 70-years-of-age, knew about the more well known forms of cancer - like melanoma.
A condition that creeps up you
John was told he had a growth on his pancreas and had tests to find out more, but cancer was always the number one suspect.
"Just being told you have cancer out of the blue, literally, is a shock. I felt fine and had been out bushwalking and had what was suspected to be a gallbladder attack ," he said
"When I was told it was a neuroendocrine tumor I went 'well'.
The remark "well" could have been expanded to "well - what is neuroendocrine cancer"?
What is neuroendocrine cancer?
Neuroendocrine tumours (NETs) form in the network of glands and nerve cells that make hormones in the body. These cells are found throughout the body, but mainly in the gastrointestinal tract [including large and small bowel], pancreas and lungs.
Many neuroendocrine tumours produce excessive amounts of hormones, which can lead to common symptoms like diarrhea, racing heart, flushing, bloating, wheezing, fatigue, abdominal pain, unexplained weight loss and rashes.
John's journey continues
His next stop, after being told he had this condition in 2020, was the Shoalhaven Cancer Care Centre in Nowra and he picked up an information leaflet on the condition.
"They had a brochure which was really good and explained about some of the symptoms and treatments," he said.
He then found out about NECA and he was able to speak to a nurse, paid by the group.
"Monday to Friday you can ring that nurse with your concerns and ask questions," he said.
He now knows Joyce the nurse well.
"It's good to have that single contact person and you can just ring up Joyce when needed," John said
Including side-effects from treatments, John rings Joyce to get all sorts of advice
John said it was nice to know that Joyce was just a phone call away.
He added the NECA was trying to get money to employ nurses in every state.
Time to treat this little known cancer
John is currently not having any treatment - but last year was on a two part therapy - taking chemo pills and once every eight weeks got injected with a drug that attaches itself to the cancer, aimed at stopping the tumor from multiplying and getting bigger
"It [the treatment] stopped it growing. The thing is with neuroendocrine cancers is that they are incurable - the best you can have is remission. It is always going to be ticking away in there," he said.
John's best outcome is to keep his condition under control and stable.
A "new bit" did show up on John's sternum recently which is now being treated.
"I had a scan the month after I finished treatment in March and it was stable which was fantastic," he said.
He will be having another scan early next month and his cancer is actually on his pancreas.
John just does not look sick which is another neuroendocrine trait.
"More often than not - you don't look sick at all - particularly not in the face and you you don't look drawn," he said
He does get tired and has the odd afternoon nap - which is something many people do.
Hopes for the future
John hopes the treatment he is currently on holds for a few more years and then he will have to get the treatment again
"Basically it's a counting game. If I am really lucky I will get up to 10 more years," he said.
A sense of positivity flows from John.
"I have always been relatively positive, apart from the first couple of weeks after being diagnosed. There is point in not being positive really," he said.
He follows the message from neuroendocrine cancer Facebook group members.
Their message is "to enjoy each day as best as you can and just get on with life".
"And that is what I have been doing," he said.
The symptoms of neuroendocrine cancer are so commonplace
"You can just think 'I have an irritable bowel and certain foods stir me up - and go yeah it will pass'," he said about the trap people could fall into when it comes to the common symptoms.
The symptoms are so variable which could mean people think that the last thing they had was neuroendocrine cancer.
John said he was lucky as his doctor suggested getting more scans.
"My doctor said to me 'we think it's the gallbladder but just because we think this does mean it's'," John said.
John's doctor went on to explain that the gallbladder was a real complicated area and a scan was needed.
"He was right - it was not the gallbladder - you have to be proactive about these things," John said
He recommends people push to get more scans and tests.
"Scans are so definitive these days and they pick up mystery things. They scans only take a limited time but they sure do tick a lot of boxes," he said.
"Early diagnosis is the key - the longer it goes the bigger it is and the more places it's found and treatment becomes complex and difficult.
John was lucky that he was diagnosed "fairly" early but even then he could have had the condition for between "one to four years".
Underlying message
"If you are having issues with your digestive area and it comes and goes - don't just go, it's spicy food or something like that. Go see your doctor and say what the problem is. Also try to steer your doctor to you having a scan," he said.
"If it's a negative result and they don't find anything - well how good is that."
Go to https://neuroendocrine.org.au/ for more information.
