The patient experience
It’s great to notice improvements in healthcare and medicine – new techniques, new equipment, new medications, in particular for prostate cancer. It’s especially wonderful to see changes that focus on the patient and the “patient experience”.
Talk about “your healthcare team” has been around for quite a while. Unfortunately, often it has only been talk for many men going on the prostate cancer journey (myself included).
Men might be referred to a continence physio, but not made aware of other support services when dealing with post-prostate cancer treatments. They also may not be fully informed of all potential side-effects of their chosen treatments.
I’ve recently witnessed two completely different models of patient care within the Victorian public health system. One was fairly poor, but the other was genuinely inspiring. In this post, I’m going to discuss the latter.
The Peter Mac model
After accompanying a friend to his first appointment at Peter MacCallum Cancer Centre, I met with the Hospital’s Urology and Continence Nurse Consultant, Marc Diocera.
Marc kindly invited me to attend their next “Pre-Robotic Assisted Radical Prostatectomy (RARP) Information Clinic, at which I was able to have input as a prostate cancer survivor and thriver. This enabled me to let the men and their partners know that they will get through their operation. I was also able to share some of the side-effects that they are likely to experience.
At this Clinic, Marc introduced the new patients to their healthcare team – yes, an actual team of specialists, nurses, physiotherapists, counsellors, and more.
Hands on catheters
One particularly helpful aspect of the Clinic was when Marc showed the group what the catheter bag looked like. He passed these around and had the group practise putting them on their legs. The group also learned how to attach the overnight bag to the catheter.
I could definitely have used a session like this before my surgery! Even though men are told they will wake up after the operation with a catheter, actually seeing a tube coming out of your penis (Percy) can still be an eye-opener.
It was also helpful for the men to be told that their abdominal muscles will be very sore after being cut through during the operation, and that sitting up was likely to be difficult. Knowing this kind of thing ahead of the event can go some way to alleviating men’s concerns after their surgery.
Intimacy & sex
Another important topic for discussion at the Clinic was intimacy and sex. For most men (if not all), these will now be very different, due to shortening of the penis, as well as loss of thickness.
Other problems such as incontinence for a period of time and erectile dysfunction will have an effect on men and their relationships. The whole prostate cancer journey is very much a couple’s disease.
For single men, gay men, and those without any support, this can be a particularly difficult time.
The Peter Mac model provides assistance for all to access, so it is important that men do so.
Additionally, if need be, approach a local Prostate Cancer Support Group to hear how others cope. You are not alone and meeting others can relieve the stress and sense of isolation that can occur with such a diagnosis and subsequent treatment.