Prostate cancer treatment causes a number of side effects and each week in our clinic we see many men who have come in for help. We are incredibly grateful to one our lovely patients for sharing his journey……
Kia ora e te whānau—I never thought I would be here, writing about my prostate cancer journey, but here we are. It is evident that prostate cancer is more prevalent in Māori and Pasifika men, and the need for open discussion about prostate cancer can make an enormous difference to help reduce the over-representation. If there is one thing I have learned, it is that talking about it matters, and if the sharing of my story helps to encourage men to talk about prostate cancer and the need for early detection, then this must be a great outcome.
Ten feet tall and bullet-proof
I am Māori, I was not overweight, and was fit, healthy, strong, and lived a highly active lifestyle, and I stayed on top of my health by having regular medical check-ups and blood tests, dental visits, hearing testing and vision checks for aging eyes. I was ten feet tall and bullet-proof, and I thought I was living my best life in my early 60s – or so I thought. I had been testing regularly with PSA results in the normal range, and then a little over 12 months ago, I started experiencing a sore lower back, urinary issues, and the worst of them all – the start of erectile dysfunction. A series of further testing, scans and blood tests followed, and I was forced to face something I did not want to hear.
A punch to the gut!
Hearing “You have prostate cancer” hits like a punch to the gut; there was no sugar coating the diagnosis. The first thing I felt was fear of the unknown – how advanced was it, and had it metastasised and the realisation that I am not ten feet tall and bullet-proof and that I am mortal. Next steps were laid out and potential timelines explored. The need to inform my whānau and work colleagues and to reprioritise work commitments became important. On the flipside, a planned holiday to visit our daughter and her family in the USA went ahead as planned.
On the surgery table
Radical Prostatectomy surgery was the way ahead, and with it came the side effects no one really talks about—urinary incontinence, loss of control, changes in masculinity. You suddenly feel like less of a man, even though you are fighting to stay alive. The morning after surgery, I vividly recall the first walk up the hallway, a slow walk with purpose, a catheter attached as my new best friend, a surgical wound to heal and the challenges of incontinence to master in the following months. A visit to the Emergency Department and regular visits to the Community Nurse put me on the road to recovery.
Regaining confidence
The procedure was supposed to remove the cancer, but what it did not remove was the daily battle that followed. Living with Erectile Dysfunction, learning to manage bladder leaks, shopping for the right incontinence products, and discreetly hiding them under groceries for fear of embarrassment. Regaining confidence again to go out and do normal things, buying incontinence products without feeling embarrassed, and talking to my wife and whānau about the changes. All of it was tough, but a stoic mindset and putting oneself first helped to make a difference. The things that have helped me:
- Support from whānau – I had to learn to share and lean on them.
- Kōrero – talking with other men going through the same thing.
- Pelvic floor exercises – they really do help regain control, and a big shout out to Pelvic Health Physiotherapy, Wellington.
- Support from work colleagues – sharing my experiences through moments of humour or seriousness to help create a deeper understanding of prostate cancer.
- Accepting the change – adjusting to the new normal, one step at a time.
- Leaving your male pride at the door – you will be invited to bare your bits or to talk about things that may feel embarrassing, so go with it, you will be fine, and it is about healing all of you!
A new norm
I am now 8 months post-surgery and entering a new norm. My 3-month PSA results came back with undetectable cancer – what a relief! My surgical wound is completely healed (although it looks like a tummy tuck). My incontinence is now down to the odd dribble and I expect to be drip free within a few months. I currently wear incontinence products and know that I will not have any embarrassing moments with the brand I use. I am almost ten feet tall, back in the gym doing core strengthening rehabilitation, running, swimming, and cycling. One more thing to work through – that is Erectile Dysfunction, and I will not rush it, and it will be what it will be.
Finally, a few weeks ago, my work colleagues and I completed a reflective practice activity as part of our annual work planning. We were invited to write a haiku about personal and professional reflections. The haiku below summarises my prostate cancer journey and the way I live and see life.
Cancer, here it comes, fearful
Heads up, face forward, shoulders back, onwards
Live life, full on, enjoy
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