New Zealand

I’m obviously not much good at this blog stuff – almost 6 months since my last blog and much has happened.

Moved to Wellington NZ ! This was not expected. KJ got a job here. Wellington is windy and cold – nothing like Bali. I do miss the beauty of Bali – but also wonder if we would ever really made it our home. Wellington is quite stunning, but it is tough moving to a new place and trying to make friends and find things to do that are meaningful. There’s only so much volunteer work one can do. Still, we are committed here for at least 3 years – so we will make the most of it.

Another grandchild ! Tody – a grand-daughter – born yesterday to Josh and Maddie. Josh is 39 – I had 4 kids when I was 39 – the youngest 4. I had my 39th birthday in Wisconsin – we had just arrived there. What an interesting time that was in the USA, and life- changing. I’ve always been sceptical of people who say they don’t want to have kids because the world is a bad place to bring them up. But the world is surely in a mess right now. Trump in America and likely to win another election – how much more damage can he do. Boris in UK and likely to win – election tomorrow. Scomo in Australia – what a clown – and a dangerous one. And the world’s climate changing in a bad way at a rapid pace. Hopefully, the next generation can do something about it – because surely the current one has failed.

On the prostate front – PSA remains at zero. Not much else happening. Got a close friend dying of cancer right now. It’s been so quick and we will surely miss him – the type of guy you want to spend time with.

Xmas will be spent here in NZ. I will miss not being with at least one of my kids – Xmas is not the same without them. But Xmas will be followed by Lach and Katie’s wedding – so that will be a great catchup – with some people I haven’t seen for 10 years. What a blast.

I hope 2020 is great for everyone ! XX

12 months since operation

It’s hard to believe that 12 months ago I was just getting out of hospital after the prostatectomy. Lots of holes in my tummy and tubes hanging out of them.

Since then, life has had some interesting happenings.

The best was the birth of my new grandson, Finn, on the day I got out of hospital. He is a bonny lad and now taking his first steps.

Living in Bali has been great and trying all sorts of remedies to get the nerves working again – none of which have worked. But my PSA remains at zero – so that’s great news.

KJ has just scored a job in Wellington, NZ so we are off there in September for a new part of our life adventure. Mixed feeling about leaving Bali – I do like it here and I’m sure we will be back – we do have 2 villas in Seminyak to look after. Not looking forward to cold weather.

Before NZ we go to Canada for a month holiday – planned ages ago. Doing house swaps in Montreal and Vancouver. Looking for to the Mark Knopfler concert, in particular. Then we have 3 days back in Bali before travelling to NZ.

I will be back in Bali in October to organize what things need to be moved – hopefully by then we will know where we are living.

KJ is busy going through every cupboard, identifying what we must keep and send to NZ, what goes to Seminyak, what stays here (at least for a bit) and what gets thrown out – lots! “If in doubt, throw it out!” is my motto.

I need to get in a few massages before I leave Bali – they are way more expensive in NZ and I doubt if they are as good. So I might just head to my favourite masseuse now. Bye 🙂

PSA still zero – action below the belt not much more

My 9 month post-op PSA test recorded zero. Obviously great news.

But erections remain a thing of the past, despite, drugs, pumps and needles.

Have been trying acupuncture and acupressure but with no obvious impact. More time and patience required.

There is just so little research on how to get the nerves working again and the doctors are just guessing. I wish I had more positive info to report.

All that aside, life is great. I feel healthy and I’ve just returned first from time with all my family in Perth/Broome and more recently from a leisurely holiday to Pulau Kai in the Malukus. Can’t complain too much, I have friends going through chemo and radiation therapy. For me, life is good.

6 months – the good and the bad

The good is that I’m feeling great and recent checks have my PSA at zero. Leaking is minimal – except when I cough or sneeze.

The bad is that erections have not returned – though I know it is still early days. Injections, while they swell the penis, do not make it hard and the pain afterwards is considerable. I’m going to stop these for the moment.

Next thing to try is acupuncture. Not sure the traditional Chinese style will work – more interested in dry needling in the right areas. It’s all experimentation. And, to be honest, none of the doctors really seem to have a grasp as to what works. So I will keep trying new ideas and treatments.

Tantra

Spent last week on a Tantra retreat for couples. More about relationships and mindfulness, rather than sex, but included a few “tips and tricks.” The retreat was facilitated by a wonderful lady from Australia, Jacqueline Hellyer.

Why Tantra? Well with ED being an issue, why not explore other ways of being intimate.  Bali has a few Tantra options, some not appealing to my partner, but this one was informative, practical and “no sleaze.” I would recommend it for all couples.

Had my 5 month PSA test today – results tomorrow. Fingers crossed.

Still doing Pilates. But I’ve been a bit slack with my pelvic floor exercises – thought I had the leaking under control – mostly is, but I need to keep up the exercises.

 

Penile injections

2 words that bring a tear to every man !

Well I’ve done it – it works – erection lasted over 2 hours – intercourse possible. Not painful but very strange feeling after. Really not something I want to do every day. The doc reckons I should inject once a week, just to keep the cells and membranes flexible. Hmmm.

I guess it is all progress.

At least my partner is happy 🙂

80 day checkup

Back to Perth to visit the urologist and men’s health doctor.

Mostly tracking OK.

Curiously, the pathology results of my prostate only give me a 78% chance of not having an increased PSA level within 3 years.  That’s 22% chance my PSA will go up again. And the surgeon reckons the cancer had not escaped from the prostate and the lymph glands and the area marginal to the prostate showed no sign of cancer. So where does this 22% chance come from – a microscopic cell of cancer that did escape and was not detected ?! Anyway, not much I can do about it now except regularly check my PSA and live healthily.  More tomatoes and green tea. What other dietary delights have people found to have worked – at least for them?

The “Dick Doctor” gave me something to inject into my penis.  Haven’t tried it yet. He reckons it needs to be done at least once a week to keep all the cells and membranes in working order. More on this after I try it.

 

Reiki trained and dangerous

I’ve now had my one-day Reiki training.  I can administer to myself and others.

To be honest, I’m still skeptical about it. There is so little hard evidence to support the science behind Reiki. Just anecdotal PH.reikistories.

But you do feel better after a Reiki session, even if there is doubt that there are any curative effects.

I will practice.

I was hoping Reiki, over time, may stimulate the nerves that have been traumatised/damaged.

If anyone has experience of Reiki supporting post-protatectomy recovery, I’d be interested to hear them.

My kids may not want to read today’s blog

Not that I think they read them, anyway.

I had my first orgasm this morning !

40 days after surgery.

No erection and obviously no ejaculation, but no pain nor urine either.

It followed a good pad-free night and morning pelvic floor exercises that were drip free. Also followed a session with the pump.

Too much information? Probably but I wasn’t expecting it so soon.

Not a big one – 4.6 on the richter scale – but an O nevertheless. 🙂

Reiki – first time

I had my first Reiki experience yesterday.

Why? well there was an article in a magazine I read that indicated that Reiki could help recovery from prostatectomy.  Maybe not a good reason, but I thought I’d try.  There are also many Reiki practitioners in Ubud.

The limited information and research there is on the web relates to Reiki and the usual causes of erectile dysfunction, such as getting old, stress, diabetes, heart disease, obesity, alcoholism, and so on. There is virtually nothing on helping to regenerate the nerves that were attached to the prostate, the ones that give a man an erection. If anyone knows of and research related to Reiki and nerve regeneration I’d be interested to read it.

Anyway, I felt great after the Reiki session I had. Not sure if it will help speed up recovery but I will have more sessions.

I did have my best pad-free night after it.  Maybe that was the Reiki.

 

Back to Pilates

5 weeks to the day after my operation I returned to Pilates class.

The Pilates exercises are excellent and I got through them with no soreness.  I’m confident they will help with prostatectomy recovery, not to mention general flexibility, fitness and well-being.

Pilates rocks!

A good night also – only one visit to the can – it’s the little things that keep you going 🙂

Treatment alternatives

Ubud is the centre of alternative remedies in Bali. Here are just a few that could possibly hasten erectile dysfunction recovery:

  • Massage: You can just about get any sort of massage you want in Bali.  The problem is that few masseuses really understand human physiology or anatomy.  Most massages follow a set pattern. To find someone who understands and can focus on the nerves that need stimulating is not easy.  Esalen massage is one style I think might help. I’m lucky I do have a great masseuse but I am looking for others.
  • Pilates: I have a great pilates teacher right next door. Pilates routines combined with the pelvic floor exercises I now do are sure to help.
  • Traditional healers: there’s a few of them – which ones are the best and can they really assist is open to question.  Doesn’t mean I won’t try one when the time is right.
  • Reiki: I have read in magazines that Reiki can help with recovery of erectile functions after prostate surgery.  There are a few well regarded Reiki therapists in Ubud.  I will try one.  She also offered to train me in a one-day workshop so I can administer myself and to others. The cost is only $165 and I get a certificate! Why not give it a go?!
  • Sound healing: so much of this in Ubud and very little evidence to prove any curative impacts.  Though listening to beautiful gonging in wonderful surroundings is certainly relaxing.  Then again, I have my own gong.  Maybe I should gong myself.
  • Hypnosis: I have a friend who thinks this will help – I will give it a try.
  • Ayurveda techniques: I know nothing about it but there are people here who say it will help.
  • Tantra: certainly an alternative to intercourse sex.  Worth looking into when we are ready.
  • 1-gong1
    Couldn’t resist a bit of personal sound healing

    Kinesiology: I have been contacted by a neuro-kinesiologist (what the heck is this, anyway) who want to charge me 195 euro a session (more than one session required!) to help me. That’s more that my surgeon charged and it ain’t going to happen.

  • Supplements: no shortage of these: natural and produced by the big vitamin companies – all with limited evidence of efficacy.

I’m not planning to rush into any of these (and there are probably more). It’s early days.  But over the next months I’ll try a few, not in any robust research manner, and I’ll blog what hopefully works for me.

Erectile dysfunction – every man’s nightmare

They say only 30-50% of men fully recover their erectile function and it could take 2 years.  I have one friend who is back to normal after one year.  Another who isn’t after more than 2 years. How long will it take and how do you speed it up?

It’s all a bit of guess work from what I can gather.  The research is certainly not conclusive. The specialists give you no certain approach.

I’m on drugs (Cialis every second day) and Viagra once a week.  Why? These drugs work within the tissues of the penis helping the sexual chemical response and thus erection. None yet for me – not that I am expecting any yet – it’s early days.

Vacuum pump: This keeps blood in the right tissues of the penis, though doesn’t create an erection.  But I need to keep these tissues functioning – so they tell me.  It’s “use it or lose it.” I use it most days. (No photos of this!)

Penile injections – well – not yet.

My men’s health doctor (politely referred to as the “Dick Doctor”) tells me that there are 3 sets of nerves that create the sexual experience. They are all part of the cavernosal nerve system which comes from the lower spine (see diagram courtesy of Amicus Visual Solutions). They are the:

  • Somatic nerve: which as far as I can gather controls sensory feelin11170_03A-425x450gs, such as touch – though I’m a bit unclear about it.
  • Parasympathetic nerve: this is the one that was wrapped around the prostate and has been damaged or traumatized.  It’s the one that creates the erection. My surgeon tells me that there was little damage to it but it will still take time to recover.  How much? Time will tell.
  • Sympathetic nerve: this one creates the orgasm. So orgasm without erection is possible. I’ve experienced this in the past, but not sure how to make it happen now.

There is really little literature or advice on how to get these nerves functioning.  You’d think you would be encouraged to work on the 2 that haven’t been damaged, but how.

Then there are all the alternative approaches available here in Bali.  More on them later.

Incontinence

The locals are feeling the cold today – it’s 22 degrees Celsius! Beautiful Ubud.

Wearing man-pads is no fun – though the women don’t give us much sympathy. I’m expecting the incontinence to be over by 2 months – is that reasonable? I know some people take much longer. I have good and bad days.  Some days I don’t need a pad til 5pm; others I leak all day. Nights can also be good or bad, though I try to go pad free at night. I’m doing my pelvic floor exercises 3-5 times per day: rapid fire, tight and hold. About to start adding the plank, curl-ups and squats. Also started yoga again yesterday – needed the pad. What else can one do to speed up the recovery process?

First Blog – My post-prostate surgery recovery begins

I live in Bali – in Ubud – its beautiful and interesting. That didn’t stop me getting prostate cancer. A small but aggressive (Gleason 9) cancer that had to be removed and was removed exactly one month ago in Perth. Now I’m back in Ubud and suffering the 2 main side-effects – incontinence and erectile dysfunction. Ubud is the home of all sorts of alternative (some wacko) treatments.  I’m skeptical about most of them.  But as well as the better known treatments (drugs, pumps, needles) I’m pretty much prepared to try anything – I’m certainly in the right place for it.  This blog is to let you know what works for me (and what doesn’t work); and to get feedback and ideas from other people on the prostate recovery journey.