Ferg le Juge de Segrais is a prostate cancer patient, survivor, advocate for change … and a grey nomad. Here, he tells the story of his long journey to get back on the open road … and of his determination to make a difference.
We love to travel Australia in our LandCruiser 200 GX towing our Explorex Ningaloo caravan. During a 10-week stay at North Lefroy Bay, Ningaloo, WA, hosting the campground for the Department of Biodiversity, Conservation and Attractions (DBCA) from the end of March last year, I found the need to get up at night to visit the loo starting at once per night … but trips increased as weeks went by.
I had mentally consigned a visit to my GP in my ‘things to do” list and thought nothing more about it until months later when I was ‘wearing a track’ in the ceramic floor tiles, such was the increase of nightly loo visits. I am exaggerating slightly but it was at least three times each night.
I subsequently saw my GP and he gave me a simple blood test form to check my PSA levels but, because we live 70 kilometres from the pathology centre, the job was saved until I had other items needing attention in town.
Unfortunately, it seemed that visiting pathology was always at the end of the list and, inevitably, I was always tired from a big day so vowed to do it next time. Several months came and went until the day that I needed a blood test for something unrelated so the path lab visit went to the top of my list. But, by then, it was early December!
I was shocked the following week to receive a phone call from my GP telling me something that most blokes hate and/or fear… path results showed an elevated result at 25 and to pop in for a referral to a urologist.
I phoned the nominated specialist for an appointment but, a week later, having heard nothing further; I rang again only to be told they were ‘triaging patients in order of greatest need’! The receptionist couldn’t give me any indication of when I could expect an initial consultation.
Very fortunately for me, our son is a chiropractor who has a good friend who is related to an urologist, so he rang this wonderful person, related my story and she said she would see me pretty much immediately.
The following day I fronted at the urology clinic for the dreaded digital examination! Yes, it did kind of make my eyes water but not as much as her diagnosis that she could feel a significantly abnormal prostate!
From there one my wife Chris and I couldn’t believe how rapidly things moved. That very afternoon I had an MRI down the road and, for anyone who’s tried to book such a scan, immediacy is pretty much reserved for football teams with deep pockets for their highly paid players!
The MRI confirmed my urologist’s diagnosis and, a couple of days later, I had a biopsy in hospital. The results also confirmed prostate cancer in the prostate but we needed to discover whether the cancer had spread.
Once again, a few days later I was booked in for a PET scan (Positron Emission Tomography) and the scan showed the cancer had spread to the lymph system. Merry Christmas!
But I guess at least we knew what we would be dealing with in the new year.
I was scheduled for surgery at Sir Charles Gairdner Hospital for as soon as possible but with Christmas, New Year and Australia Day holidays; surgery was set down for February 3, 2022. Many people have asked how I felt to be told I had high-risk prostate cancer with a Gleason score of 9. My initial feelings were not for myself and what I might go through but, firstly, for my wife Chris. We’ve been married 42 years and basically grew up as adults together before having two children who are now both parents of our grandchildren.
Obviously, during this process, I felt a little cheated at the probability of a shorter life than planned but never did I ask the question ‘why me’? I already have Crohns Disease, hundreds of skin cancers, high blood pressure and a heart with reduced output.
I did however ask myself what I could do to ensure a suitable outcome and decided that I needed to continue on with life as normal, continue with my daily exercise schedule as possible, and look past all of this to something Chris and I have always wanted to do … which is spend as much time travelling and enjoying as much of this wonderful country as possible.
Surgery took five hours where the surgeon performed an open radical prostatectomy which included removing 13 pelvic lymph nodes; five of these later were confirmed as having cancer cells. I won’t go into all the details but I spent two nights in hospital following the procedure before being discharged.
Unfortunately, I returned to hospital a number of times over the coming months for various complications including a serious kidney infection. However, I kept plugging away till these issues were resolved.
My next big hurdle was at six weeks post op when my PSA level came back at 4 when it should have been close to zero which indicated the presence of more cancer cells. After consulting the oncologist I commenced hormone treatment and, after six weeks, the PSA had dropped to 0.2! My oncologist considered this to be the ideal time to attack remaining cancer cells with 33 radiation treatments which meant travelling to hospital for three minutes each day for almost seven weeks which would have been fine had we lived in the metro area but the hospital is a three-hour return trip in normal traffic but morning or afternoon peak can blow the time out considerably.
After speaking with our oncologist, we agreed for him to refer us to Genesis Care in Joondalup which is an hour away so we settled on this and paid the $750 out of pocket cost which turned out to be one of the best decisions we’ve made, not just in travel time and fuel savings but, after 33 treatments, I cannot recommend the care of these amazing people highly enough!
Initially, the oncologist at Genesis Care was reluctant to treat me because of possible complications due to my Crohns but, after discussion with my gastroenterologist we decided to go ahead with targeted radiation of the prostate bed and removed lymph nodes sites.
I was warned about side effects and that it may be extremely difficult to continue my exercise routine of walking six kilometres and cycling 20-30 kilometres on my e-mountain bike each day, but I was very determined and managed to continue this through the seven weeks of treatment.
I believe this, combined with a stubborn positive attitude to most things in life, has allowed me to get through treatment pretty well!
Early on in the radiation treatment period I decided that I needed to do something to help raise awareness of prostate cancer and dispel some myths such as ‘prostate cancer develops slowly and you can have years before it becomes a problem’.
Clearly not all cancers are the same, as is the case with my aggressive form which developed rapidly! I read up on various charity organisations and settled on PCFA (Prostate Cancer Foundation Australia) for a number of reasons including that if I was concentrating on raising funds and awareness of prostate cancer, I would spend less time thinking about the what ifs?
I also wanted to do more than just raise money so decided to commit to riding the Gibb River Road end to end in WA’s Kimberley on my EMTB.
The combination of these strategies has helped me maintain my positive mindset while accepting that the treatment may not cure my high-risk prostate cancer but may give me more quality time to spend with my lovely, supportive wife and family.
I plan to commence my epic bike ride early May, 2023, subject to my health continuing and the road being open as it closes for much of the annual Wet season. I plan to call in at most of the campgrounds along the way to chat with as many people as possible and, in the process, raise awareness of this cancer which currently takes the lives of more men each year than breast cancer takes women. It’s not a statistic either sex wants but hopefully through research and public awareness both diseases can one day become history.
You can follow my prostate cancer journey here. Donations of $2 or more are tax deductible.
September is Prostate Cancer Awareness Month. Find out more about this disease here.