13 April 2022

John Daven is the president of the Central Coast Prostate Cancer Support Group. This month we caught up with John to find out more about what drives him both within the network and in his spare time.

1. How long have you been involved with the Central Coast Prostate Cancer Support Group?

My name is John Daven, President of Central Coast Prostate Cancer Support Group. I’m 77, married for 56 years to Diane and have two children and six grandchildren. I was self-employed in the Industrial Electrical Contracting Business for over 50 years, before a cancer forced retirement in 2008.

My involvement with this group started in about 2010, about two and a half years after my treatment had finished and I was struggling with some issues related to my condition. After only two or three meetings, I found myself nominating to be the President after the existing and inaugural president had to step down. This rush of energy was probably influenced by my prior positions with Gosford Apex Club for 15 years and chairing a local branch of NECA, an Electrical and Communications Employer Group for 18 years.

The past eleven years has been exciting as well as very rewarding and fulfilling, especially when you get feedback from men who have attended and expressed their genuine relief and thanks finding they were not alone and that there were others who shared their experiences and genuinely cared.

2. Tell us about your personal experience with prostate cancer?

My personal story began back in about 2004 aged 59 after attending a PCFA information night at one of our local clubs and for no specific reason, I had decided with my Annual Medical Check-up to include a PSA test which for four years had never changed from about 2.3. I was 63 and my PSA had remained unchanged, but I noticed some blood appear where it should not have been. My G.P. referred me immediately to a local Urologist who at the initial consult thought that as my dad had been diagnosed and treated by him when aged 75 that it would probably be a good idea following an inconclusive DRE that I should undergo a biopsy just to be certain. This was done in the surgery with very little anaesthetic, not a procedure I ever wish to have again, with 12 out of 18 cores aggressive cancer Gleason 8.

My next visit to the urologist was memorable to say the least “Oh S**t, I never expected this,” was his response to the result. I won’t say much about my response except to be absolutely stunned as I left the surgery in complete disbelief. What do I do now?  After considerable research as a second choice for my treatment I chose to have Brachytherapy i.e; 55 seeds of (Radioactive Iodine 125) permanently inserted in my prostate by Prof Gillian Duchesne at Peter MacCallum Cancer Centre in Melbourne. (One of my life’s better decisions!)

3. What's the biggest challenge you faced after your diagnosis?

One of the biggest challenges that I faced was that of trying to make an informed decision on the course of treatment I should take. This was made somewhat easier with the PCFA handout literature I had collected and kept from the seminar I attended many years before and some good advice from my urologist. Brachy was my second choice but due to the urgency to have treatment ASAP (diagnosed late November). Peter Mac in Melbourne was available at short notice. My first choice was to have Robotic Surgery which was unavailable at the time and would have had to wait 4+ months for the treatment. “We need to have this done now”, were my Urologist’s words.

Regarding side effects, fatigue and a severely compromised immune system was a challenge that took some overcoming also the mild anxiety awaiting test result every six months fearing the cancer may have returned. Thankfully I have just returned my 26th < 0.01 PSA.

4. How has the Central Coast support group made a difference in your life?

My support group was a great help to me once I started to attend, finding that I was not the only one experiencing a whole lot of issues and that being able to speak openly about them in a secure environment was such a relief, which posed the question, why did I not seek this support years earlier? This group had given me a sense of purpose and have worked hard to make it succeed, along with volunteering in the PCFA Ambassador program and the Cancer Council Cancer Connect Service.

5. What motivates you to give back?

What motivates me to attend the support group which I now lead and have done for about 11+ years is the feeling I had after attending the group. The relief from stress I gained and felt after being able to exchange experiences with others who cared, that I could help contribute and perpetuate that feeling is all the motivation I need. The privilege to be able to give back to the community was paramount.

6. What's your top piece of advice on how to run a successful Support Group?

One piece of advice I can offer is that keep the support group meetings totally focussed on the care and support of men and their families and deal, with all the everyday business of the group at the management committee meetings. Maybe my old Apex Club times show in that, but try to have a chat to everyone personally and keep the general mood of the meeting light-hearted. Also provide tea and coffee at the point of entry!

7. In your spare time, what do you enjoy doing?

What do I do in my spare time - what spare time? My wife and I are avid caravaners and try to meet up with friends several times a year, and have done for the past 14 years. I enjoy tinkering in my workshop, cooking, fishing, growing tomatoes, and volunteering with several other community groups including Meals on Wheels which we have both been doing for over 15 years. We also try to keep up with the extended family and grandkids.

8. Any plans for 2022?

Due to the Covid uncertainties we have had, we have only just returned to our church hall venue last month and plan to return to having guest speakers come along. Maybe the odd ‘Prostates in the Park‘ meeting which we managed to have and were liked by all. To keep a close association with PCFA, we also remain connected with Suzie our local Prostate Cancer Specialist Nurse and our LHD Continence advisors, who we get most of our new members from. We will continue to advertise our existence on the coast despite some current difficulties and liaise with local Urologists who have strongly supported our existence in recent times.