04 May 2022
As told by Roger Dark
“Roger I’m sorry to have to tell you, we did find some cancer in your prostate”. With those words from my Urologist, my entire life changed, and will never be the same again. I reflect back, now, almost five years further down the track. It’s been an often-bumpy road, unpredictable and difficult. But I’m still here, still with my family and friends, and doing the things I enjoy. Everyone’s prostate cancer journey is different. This is my journey (and everyone’s is unique), and I retell my story, in the hope it may be of assistance to anyone else faced with prostate cancer.
I have a strong familial history of prostate cancer. My grandfather died from metastatic prostate cancer, in an era when treatments were limited. My uncle has been successfully treated for prostate cancer. Thus, I started having my PSA blood tests at 40 years of age. Too early some may say, but I don’t regret them. Early detection and all that!
Late in 2016, my GP reported a rise in my PSA. It was slight, but it was there. With no symptoms whatsoever, his advice was to treat for prostatitis (a very common, benign disorder) with antibiotics, and check back in a month. A month later and my PSA was unmoved. This GP is now retired but I’ll be forever grateful for his guidance at this point. He referred me to a Urologist for further examination and management.
My thought process then was interesting. I am a 30-year Health Professional myself, 30 years as a Registered Nurse and the past 18 years as a Paramedic. We are confronted with illness all the time, it’s the nature of the business. Whilst I always thought there was a possibility of me getting cancer, in the back of my mind I thought “nah, I’ve given so much to Health, it’ll be fine”. I was wrong.
As I’d been a Paramedic for the prior 13 years, I’d lost a bit of touch with who was out there in Urology World. I’d heard good things regarding my original choice of Urologist, however at that stage the waiting list was huge. This was the first time I contacted my local Prostate Nurse Practitioner “Dave”. Dave immediately steered me right, pointing out that the other Urologist in the practice had no gynecology patients as such, and thus could be accessed much sooner. Disclaimer. Dave and I have been friends for a long time. He started a little later than I in Nursing (he was even a Paramedic for a few years), but from afar I have watched him forge an incredible career, assisting people just as myself. More about the Prostate Nurse Practitioners later.
My Urologist (soon to be Surgeon) was a cracker. He was (is) young, very educated in current practice and treatments and immediately instilled me with confidence. First point of importance. Be confident in your treating Urologist/Surgeon. You’ll be spending a bit of time together, having difficult conversations, and making equally difficult decisions. If you’re not “gelling”, exercise your right to find somebody with whom you do. This is an incredibly big deal, you need to feel comfortable and confident.
Together, we formed an “attack plan”. Digital rectal examination and MRI suggested nothing overtly wrong, in fact once again, the presented picture was of a prostatitis. Another heavy-duty course of antibiotics and a follow up PSA in a few months’ time was ordered. At the follow up appointment, my Urologist was straight up with me, “Roger the PSA has risen a touch more. Its time we took some tissue and found out exactly what we’re dealing with here”.
The prostate biopsies were completed quickly and efficiently at a local Day Surgery. My Urologist used a trans perineal technique, as he believed there was less chance of any post op complications. My recovery was swift and uneventful.
Which brings us to my opening paragraph, 4 days later. It’s impossible to describe the feeling of being told “you have cancer”. Gut wrenching, helpless, hopeless, lost, these are words, and descriptive ones too. But they don’t begin to describe it. I have a saying (well actually I have many), “only those who know, truly know” (what it’s like to be told you have cancer).
That said, just because people don’t know, doesn’t mean they are unable to help. My wife and twin, teenage sons immediately came to my aid. I was like a cork in the ocean, clueless and rudderless and a mess of tears and snot. Second point of importance, involve your families. I encourage all in a similar position to draw upon the strength of your family. I’ve heard it said that cancer is a family illness and it does indeed affect all members. Lean on your family, you’ll need them and they of course need you. From that point forward my wife of 28 years was actively involved in all appointments, scans and decision making. I’m not sure I’d have got through it without her.
The next few weeks were a blur, I wasn’t drunk but I wished I was. Waking in morning after fitful sleep to the realization it wasn’t a dream, prostate cancer was now my reality. The wait for the scan results was incredibly difficult, just seeing “prostate cancer staging” on the radiology request slips sent me into a tail spin. But it’s incredibly important, without it the appropriate treatment options cannot be commenced. Thankfully for me the scans were good, there was no evidence of any escapees. A treatment program could be planned in earnest.
Before we get to that, here’s my third point of importance and it relates to your friendship network. I am incredibly lucky to have a dear friend who’d undertaken his own prostate cancer journey some 15 years earlier. Through more tears and snot, I knocked on his door and he literally welcomed me with open arms. We are “brothers of the prostate” these days and I love him dearly. The immediate support he was able to provide was immeasurable. A couple of Paramedic Mates too stepped up. One I describe as “my rock”, phone calls, visits, walks around my property, he was a constant at my side. Similarly, my local neighborhood friendship network were there. I found out very quickly that those who didn’t have the medical knowledge that I and my health professional friends shared, were very happy just to be there for me. It was needed and I appreciated it.
My Urologist has a beautiful wooden desk in his rooms. On the patient side of this my wife and I sat fairly glumly, as he carefully explained the extent of my prostate cancer and the various treatment options available to me. Third point of importance, listen carefully and ask for as much clarification as you need. My head was still spinning, although the RPM had slowed a little by this point. That said, there were important decisions to be made and I was awash with worries of survival, continence, sexuality amongst others. In my situation there were choices. My Urologist recommended that in my situation (keeping in mind that everyone’s journey is different), the radical prostatectomy was the best course of treatment. I agreed. Give me life, give me survival, I’ll deal with the rest down the track…..
I was happy on surgery day. Get that bloody diseased organ out of me! I actually woke from the surgery almost relieved, happy maybe. Or perhaps that was the bag of narcotic juice dripping into my arm and keeping me comfortable. Either way I felt like it was something of a new beginning, the ailing organ was gone, and I could now (eventually) get on with my life. Trouble was, I had this bloody tube hanging out the end of my “winky”. Oh well, a week or two is not long in the big scheme of things. My Surgeon greeted me on day 2 post op, with the wonderful news the prostate had good clear margins and the cancer appears to have not spread, giddy up! Two mornings later I was discharged home, indwelling catheter, leg bag the lot.
Point four of importance, take the time you need to heal and recover. It was a huge insult to body and mind for me. I took a full 3 months leave of absence from my employment, and to be perfectly honest I needed every day of it. There is a very real “rehab” post radical prostatectomy, to get everything up and running again, as well as the review appointments and extending time frame PSA checks with my wonderful Urologist. With all the follow up Urology Nurse Practitioner and Urologist appointments, the girls behind the desk of the rooms got to know me very well.
Much of the recovery process is planned for you, by your health professionals. Point five of “Darky’s really important stuff”, is to plan your own recovery. We all have fun stuff which we like to do. For me it was fishing, mountain bike riding, motorcycling and Brazilian Jiu Jitsu which I’d only taken up 2 years previous. Take up a martial art in your 50s they said, it’ll be fun they said. Crazy? Yea, I know. In consultation with my health professionals, I formed a plan to gently return to all these activities that were important to me. It’s all part of feeling human again, after an incredible insult. The day I once again pulled on the gi and the white belt, returning to my BJJ club, was one of the happiest in my life.
As I approach the five years in remission point, I am incredibly thankful to still have a wonderful quality of life. That said, I’m a very different person to who I used to be, and I often still struggle. I’m heard to often say ‘’it’s one thing to heal the body, another altogether to heal the mind”. And the mind took a huge hit. My sixth point of interest, is to be mindful of your mental health (did you see what I did there?). Suffice to say I’ll never line up on the wing for my beloved Geelong Cats, but moderate exercise is important. I see a Psychologist if required and am learning meditation and mindfulness. My Prostate Nurse Practitioner is (still) a beauty, and I urge anyone negotiating a prostate cancer journey to seek out your closest NP. They are a wonderful resource and if you find yourself “Looking over your shoulder” at times like I do, they are incredibly reassuring. Similarly, the PCFA is a great body of people. I recently contacted them with an issue and between the wonderful Nurse on the phone, and my local NP the issue was quickly resolved. Bumps can be smoothed, don’t dwell on them alone. There is no instant mind fix and back to normal sadly. But life can still be good. Again.
At almost 60 years of age, I’ve had an interesting and varied life to date. For many years I worked in the recreational fishing industry as an Author and Journalist for a number of different fishing magazines. In addition, I of course returned to my main gig as a Paramedic and remain there today, although retirement may just be shining a little light on my horizon! I have many strings to my bow and my networks are wide and far reaching. If I hear of anyone within my large circle who is experiencing a prostate issue (not always cancer), I reach out and provide an ear, provide advice if I can, and just be there for the person. Thinking back to my dear friend and what he was able to provide to me, it’s the least I can do. Am I paying it forward, or paying it back? Importantly it also continues to encourage my own healing. In helping others, I also somehow continue to help myself.
Prostate cancer, like all cancer, is a hideous disease. That said, in many, many, MANY (is that enough manys?) cases, it can be controlled, tamed and managed. So, like Dale from The Castle (although I won’t dig a hole) “my name’s Darky, and this is my (prostate cancer) story”. I sincerely hope that it may in some small way, help you with your journey.
For information about prostate cancer and support, phone 1800 22 00 99 or visit pcfa.org.au.