Covid lockdowns didn’t help but the issue remains – regional areas just do not have the expertise, knowledge or resources for specialised medical issues.
Ian Martin is a 53-year-old Operations Manager from Katandra West, 25 kilometres Northeast of Shepparton in Victoria. A keen cricketer and former president of his soccer club he is also “roadie” for wife Karen’s singing duo.
Karen and Ian have four children between them ranging from 20-32. They were close to becoming empty nesters, when in May 2021 Ian discovered two lumps in his neck, just under his right ear.
Initially a GP in Shepparton diagnosed infected lymph nodes and Ian was asked to wait two weeks to see if they reduced. When the lumps remained, he was prescribed antibiotics, even though the lumps had grown.
My GP organised blood tests and a referral for an ultrasound as well as a biopsy but the specialist refused to do the biopsy due to the location of the lumps. The ultrasound revealed little, and the blood test came back negative for cancer markers.
Karen intuitively knew there was something more to this and demanded another biopsy - non negotiable!
Ian had a Fine Needle Aspiration (FNA) on 24 June 2021 and was diagnosed with stage 3 Oropharyngeal Cancer.
Our GP realised this type of cancer wouldn’t be handled adequately at the local hospital and referred me directly to the Peter MacCallum Cancer Centre in Melbourne. Once Peter Mac was engaged everything happened quickly and efficiently. I was told I would need radiation therapy and chemotherapy; information was shared, and specialists were engaged.
I don’t think we could have asked for more, although it did mean a lot of six-hour round trips to and from Melbourne. During the treatment period we stayed in a unit one block from Peter Mac and walked there every day for the seven weeks. We were out of pocket around $100 per week, paying all costs up front and rebated later.
I had 35 rounds of radiation therapy over seven weeks, and two rounds of chemotherapy.
The hardest part was the gradual effects of the treatment – feeling generally crap from the side effects of medications, hard to eat, a sore mouth and throat, thick/gluey saliva and I had a feeding Peg inserted.
Nothing about the treatment was surprising as we were told what to expect but it has been the recovery and ongoing, newly revealed side effects, post treatment that I am finding the most difficult to manage.
After treatment Ian has had Atrial Fibrillation and Peripheral Neuropathy from the chemotherapy, limited saliva, changed taste buds, a swollen tongue, fatigue, slight hearing loss and tinnitus, ear pain, dizziness and jaw soreness.
It was hard, especially for Karen, when we returned home after treatment. She became nurse, psychologist and doctor. While Peter Mac was only a phone call away, it was the after-hours and weekends that made it difficult.
While local nurses helped care for Ian, they had not been exposed to the type of skin damage he experienced as a result of radiation therapy before. His GP was also learning about Head and Neck Cancer through Ian's treatment.
Covid lockdowns didn’t help, but the issue remains, regional areas do not have the expertise, knowledge or resources for specialised medical issues. More challenging side effects keep popping up and I've had to seek help for my mental health.
Karen was by Ian's side as "nurse, carer and administrator". Ian was off work for 15 weeks, with his employer allowed him to return to work slowly to manage fatigue and side effects.
Work was great, my boss and the Head of HR rang Karen every week to check in during treatment, they even offered to collect groceries for us and bring them to the unit. Luckily, I had income protection insurance, so financially we were OK. It was in February – almost five months after finishing treatment – that I returned to work fulltime.
I now have a totally different view on life. I'm not waiting to retire to do things like travel. I will retire a lot earlier than planned. You realise how important life is in its simple form.
Ian has been in remission since January 2022, and has quarterly checks at Peter Mac.
My advice to others would be to listen and follow everything the specialists say to do. Be prepared for a long battle and don’t put too much expectation on yourself in your recovery. Life is going to change for you but it’s better than the alternative.
Ian is now passionate about raising awareness of Head and Neck Cancer so that people know the signs and symptoms just like they know about more common cancer types including Breast, Prostate, Bowel and Leukemia.
I am also very motivated to do what I can to improve support in the regional areas for people living with Head and Neck Cancer.
Thank you for sharing your story, Ian.
To learn more about Oropharyngeal Cancer click here.
Your donation can help change lives