Day 227: Still yearning for recovery roadmap and integrated care

11 October 2020: I’ve spent the last month as chief nurse and assistant physiotherapist to my wife after her knee replacement operation. She’s been given a crystal clear recovery roadmap with a detailed management plan for painkillers, stretching, rest, ice and exercise. The quality of her integrated care and clear roadmap to recovery is a joy to share.

It’s also a stark reminder of what is often missing in prostate cancer recovery care.

Pre-hab, rehab and close cooperation between surgeon, physiotherapist, patient and home care team

Long before her surgery, she was sent to a specialist physiotherapist for “pre-hab” and given a strict programme of exercises to strengthen and prepare her knee muscles. This gave her a head start on return from hospital.

She came back from surgery with a detailed list of exercises to be done every morning and afternoon. She also came back with a lot of pain and a foggy head from the drugs. It’s been really important for me to support her. We’re able to measure the amount of bending in her amazing bionic knee, recording a small improvement almost every day. I’ve been helping her each session and feel very much part of her overall care team.

Twice a week we visit her wonderful physiotherapist Leanne Honey, who assesses progress professionally and tweaks the exercise plan for the next few days. She is on first name terms with the orthopaedic surgeon and clearly has deep understanding of the treatment and recovery process. (In summary – focus on wound healing and flexibility first, then start building more strength.)

Soon, Colleen will be able to dispense with crutches. It’s a joy to support her and see her progress every day. And it deepens my yearning for a roadmap and integrated care for prostate cancer survivors.

No roadmap and no care team after prostate cancer surgery

Countless mornings I write in my journal and post online “given where I am now, what are my long term recovery chances?”

When one’s medical team is clear about the scope and scale of realistic goals, it’s easier to put up with loss. I often just want to know “is this as good as it is going to get?”

And direct ways to measure progress against recovery goals are psychologically empowering. The field of prostate treatment recovery is bereft of suitable measurement scales. Some of us create our own. The International Index of Erectile Function (IIEF) is pretty hopeless for prostate cancer survivors and worse than useless if you are not heterosexual.

Contrast all this with Colleen’s experience after total knee replacement surgery: a clear target of 140 degree knee bend within 6 weeks. Regular measurement and precise guidelines from daily exercises to painkiller dosage and timing. Good collaboration between surgeon and physiotherapist. Active teaming between physiotherapist and home care (me).

What if we had integrated post-op care and prostate cancer recovery roadmap?

When recovering from surgery, it helps to have clear milestones and signposts to track progress towards restoring health.

However, this doesn’t seem to be the norm in South Africa, and not very common elsewhere in the world. Prostate surgeons can fall into a kind of heroic dream about single-handedly saving each man from his prostate cancer. When I asked for integrated physiotherapy care and a referral, it felt as if it was an affront to his surgical brilliance. When I asked for a roadmap against which to measure my progress, I was more or less told “take Cialis daily, wait 6 to 24 months, and if you are not better after that then you probably won’t get much better.”

It’s time to change this, and prostate cancer recovery needs an integrated team approach involving

• The prostate cancer survivor himself
• The urologist and oncologist
• The survivor’s partner or other care giver
• A specialist pelvic floor physiotherapist
• A sexual and relationship counsellor or coach.

Post-op care is not a walk in the park

I’ve been shocked just how much time and energy it takes to care for a partner who needs to keep her knee up all the time for a month. There’s ice treatment on the wound every few hours. Morning and evening exercise sessions and plotting progress on Leanne’s handy chart. Meals to prepare and shopping to do. Even if she did make herself a cup of tea, that wouldn’t help. We have clear instructions that she should always use her crutches so there’s no way she can carry her tea back to the bed or sofa! I am basically on call at all times.

It makes me appreciate all the more, the care Colleen has been giving me in my longer and less measurable recovery process over the last seven and a half months. It’s nice to be able to give back.