Late in the day on 20 December 2017 my surgeon and team spent more than 5 hours removing my prostate from its former home somewhere between my penis and my bladder and took tissue from nearby lymph nodes to test for evidence of cancer spreading. When doing so they made every effort to preserve surrounding nerves that help with continence and erectile function.
This blog post is about my journey with prostate cancer so far. I use the term journey because a wise person advised me that it is a journey I am taking, and it aint gonna be a short one. The language in it is as honest as it needs to be.
I make no recommendations apart from asking men over 40 to have an annual check and asking you to share this post with anyone you think might get value from it.
In October I went to the UK for 10 nights primarily because I felt an existential need to do so. After having a great time I arrived back in Sydney with a heavy cold and a blocked ear-the first time in years of travel international travel that I felt unwell on my return.
Seeing a GP
After a couple of weeks I finally went to GP who ,along with a course of antibiotics, recommended a general blood test for everything just in case. We also had a distracting chat about his other life as a poet and commentator on the politics of his country of birth.
When we caught up again I asked him about his writing and he mentioned he was going to study screenwriting in his spare time. There was something we had in common.
He then went through the results for liver function, blood sugar levels, etc. in a relaxed way and in the same manner noted that my PSA reading was high at 9.9, and recommended an ultrasound and referral to a specialist.
Prior to the ultrasound I had to drink 1.5 Litres of water to ensure I had a full bladder. I was lucky they saw me 20 minutes ahead of schedule.
Seeing a Specialist
The specialist did a physical examination of my prostate, and yes it does involve lubricant and a finger up your bum. It was a necessary and minor indignity compared to what was to come. Was I embarrassed? No, which was good considering what was to come.
During the examination he could feel some unevenness in the prostate, and that plus the blood test and ultrasound results led to him stating emphatically that he was near 100% certain that I had prostate cancer.
I appreciated his frankness but was totally shocked to be honest even though I had mentally prepared myself for this answer.
The value of friendship
Up until that point I had told few people, as I didn’t want to discuss it unless it was serious. Now it was.
I found sharing the news and putting a positive light on it exhausting. So much so that I ended up relying on networks of friends and family, and a Facebook post, to do much of the work for me which resulted in some people I am very close to not being updated by me till a couple of days ago. There will still be more who will find out for the first time when they read this post. Apologies for that.
The response from friends has been overwhelmingly supportive and their positive vibes and heartfelt concern reinforced once again the value of friendship. The only times I have cried during this journey is when I dwelled for too long on kindnesses shown to me.
I asked one group of old mates to share their best efforts to humour me. Some of the results are at the end of the blog. It serves as a reminder how juvenile we men can be and how little knowledge many of us have of the prostate.
The Prostate MRI
The next steps were to have an MRI (a day later) and biopsy (a week later). The advantage of having an MRI before the biopsy is that it helps target the biopsy of any tumours more precisely to help ensure the right tissue samples are taken. The MRI results include a CD of images to assist the specialist.
The best way to explain the sound of the MRI in action is to compare it to some alien machine on Dr Who-it worked for me. During the MRI I had to stay as still as possible and was given something to relax muscles in the area around the prostate so that there was less involuntary movement of internal organs during the scan. Three minutes into the scan the nurse advised me that there was an air pocket near the prostate which restricted the view so could I break wind to remove it. Because of the relaxant it was the first time I struggled to fart when I wanted to.
During the meeting to discuss the MRI results I learnt that there were multiple little tumours within the prostate and the biopsy results would determine if the tumours were a concern.
I think this was the meeting in which the specialist mentioned Kegel Exercises to help strengthen my pelvic floor prior to and after surgery. When searching for an appropriate hyperlink there was also this article from GQ Magazine on how these exercises can improve your sex life. I figure many guys may prefer to read that.
The specialist performed the biopsy under general anaesthetic so his title going forward becomes “my surgeon”. I was advised that a side effect of the biopsy can be blood in your semen and this certainly was the case. So any plans of sharing bodily fluids while I still could were altered to the all too familiar and enjoyable routine of self-love only. I mentioned being somewhat shocked at one rather bloody discharge to one of my oldest friends and she said ” we women have been dealing with bloody discharges since puberty”. Point taken.
The biopsy results showed that no tumours were benign and several were of a higher grade and cause for immediate concern
Anyone who gets to this point in the journey should research widely, including on Dr Google before discussing options I certainly did.
My surgeon and I discussed the biopsy results and options, including; watch and wait, radioactive beads, radiotherapy, open surgery and robotic surgery. After some days contemplation I choose Robotic Prostate Surgery because it seemed logically less invasive than open surgery and did not involve any form of radiation, which I was totally against.
This form of surgery has its strong supporters and strong opponents. Ask me in a year about my view on its effectiveness.
The total cost of any form of surgery involving hospital stays can be prohibitive. I could have had a no fee surgery in a public hospital subject to a waiting period at each step. I was not prepared to wait and was only able to proceed quickly thanks to family and friends who lent or gave me money and my bank who was happy to increase my personal loan. I am grateful to all concerned.
Two weeks later I was heading to the operating room. At this time the anesthetist told me that during the operation my head would be pointing downward for long periods and this could lead to me feeling confused for a bit, or worse if there were complications, and sometimes the robotics get close to the hands, and then I woke up in recovery.
Two tubes were inserted as part of the operation. The catheter tube is inserted via your penis and takes urine from your bladder to a bag that can be emptied by yourself once you are up to walking to the loo. There is a larger night bag to add in the evening so that you can sleep through. The drain tube takes the excess fluid from your body that is generated as the internal wounds begin to heal.
My youngest sister and her husband came to see me immediately after I was taken to my room. I remember asking them what more was in the room behind my bed and they explained it was a wall. I had imagined something grander given the cost of a private room.
I was not in too much pain at any stage initially because of the recovery room drugs. I equate the pain with that you get from doing too many sit-ups after a long absence, having been there and done that.
The next two days were filled with interrupted sleep, little or no food, antibiotics, painful sodium drips,changes of the catheter and the drainage bags and tests on the contents, blood pressure, dressing changes and a couple of walks around the ward.
What surprised me most was having six entry points in my stomach, five of which were stitched and covered with waterproof tape. The other being the drain tube. It leaked at some point every day it was in. Initially the contents of both urine and drain bags were quite bloody, with the colour fortunately becoming clearer over time.
From the hospital I went to stay for four nights with friends who let me enjoy the comfit and quiet of their house before heading home. I felt like an aging dowager sitting up in bed surrounded by pillows having cups of tea brought to me, meals made and sheets washed when I had a technical mishap with the urine bag. It was a kindness that will never be forgotten. I was there for Christmas lunch and was able to take a break between courses. Eating even a little of such rich food had the anticipated consequence the next day but was worth it.
I rang my surgeon that first night at my friends the first time there was blood and urine coming out of my penis outside the catheter when pooing. He advised that this is normal so early after surgery and let me know the news that pathology results showed that no cancer was found outside the prostate or in the multiple lymph nodes they had taken tissue from. This was great news I found easy to share.
I did not enjoy either tube experience. The catheter was in for seven days and felt more awkward the longer I had it. It particularly caused problems when sitting for even a short while on chairs. When I was doing poo urine forced its way out of my penis sometimes. It was painful, and as mentioned earlier it sometimes included blood, and always made a mess
Be aware of a little surprise when the catheter is removed. The last bit made my eyes water as the final bit of the catheter is wider because of the deflated balloon attached.
The drain tube was in for nine days and when it was removed I could feel it being pulled out of my stomach. That made me a little nauseous.
Recovery – a reality check
It is still very early on but I could technically say my recovery began immediately after the operation as wounds heal, stitches dissolve and tubes come out but true recovery my take months or in some cases years. The two bodily functions most impacted by the removal of the prostate and surrounding tissue are continence and erectile function.
When the catheter was removed at the hospital I had to put on a continence pad, go take a walk, drink plenty of fluid then return in around and hour and a half so that the nurse could check that I could pee and empty my bladder. I used that time to buy some Absorbent Protectors (pads) Level 2.
The guidance on the pack says “these will provide secure absorption enabling you to keep control and enjoy everyday activities” It should really say “enabling you to enjoy everyday activities by absorbing your urine when you can’t keep control”
I also bought some briefs as I figured would need something tighter than boxer shorts to hold the pads in place. I was wrong as inserting the pads made the briefs too tight. If anyone wants 3 pairs of unused briefs (Large) let me know.
I reverted to my boxers and the pads fitted fine. They have sticky strip to help them stay in place and make you look more like Nick Kygrios in his Bonds underwear advert than Pat Rafter in his. Google them to see what I mean.
A week and half after the catheter was removed my continence is improving gradually. I have little or no incontinence at night but have had several overconfident naked and sudden dribbling trips between bedroom and bathroom first thing in the morning that kept my expectations managed. On some occasions a few drops of urine still sneak out before I issue the silent command to piss. For the first week at the end of each loo visit there was blood in the final stream of urine. This too has now stopped.
During the day I reckon I imagine more flow than there is when I stand, cough or otherwise move quickly as the pads are never full or heavy at the end of a day. I also learnt quickly that running for a bus is a definite no no.
I had my first meeting last Tuesday with a physiotherapist who specialises in helping prostate cancer patients improve their continence. He initially asked me to weigh each protector pad on the kitchen scales to get an idea of how much leakage there was daily but changed his mind when I explained ho little there was.
The real value in seeing him was his use of ultrasound to show me how tightening my sphincters and bringing in my testicles (he told me to think of what happens to your testicles when they first touch water when you walk into the sea) also helped tightened the urethra at the point where it controls urine flow. I have a simple routine to follow four times day to help my body relearn what was an automatic function.
I am confident this will improve over the short to medium term.
I will avoid latin terminology and explain this simply. I can no longer produce semen (ever) and my capacity to get and maintain an erection is diminished greatly My penis now also appears smaller in size as there is no additional blood flow to it unless I massage it. There is a possibility of regaining the ability to get hard but this is highly dependent on the amount of nerve damage during the surgery.
I have so far used porn and masturbation as a form of home-made physiotherapy and have achieved several dry orgasms, so where there is life there is hope. I am not sure of the value of having them as the orgasms feel incomplete without ejaculation and I am currently single and under no pressure to ¨perform¨ for anyone but me.
There are options such as Viagra and other aids which I may should the need arise- pardon the pun.
I am really interested in learning the total effect this will have on me and have many unanswered questions, such as;
- will I think about sex as much?
- will I ever feel naturally horny again?
- will I still look at men as sex objects as much as I did?
- will I consider looking for a genuine loving relationship at long last?
The one thing I will do to save people asking if I can get it up yet is to grow a beard and keep it till I can. When I share an update post with a pic of me clean-shaven you will have the answer. I am fully aware that it could well be in my next life.
I will see my surgeon on Wednesday 10 January to discuss the results of the pathology tests in detail, review my scars and learn what is next. In my research radiation has been mentioned as recommended follow-up because of the type of tumours I had. If there is every a time I hope I have read too much into something this is it.
My journey really will be a long one. I will provide an update as I go along.
You call that funny?
As promised,to finish off the post below are a few attempts at humour provided by well-meaning friends. I told them to keep it up as i would soon not be able to.
Please carry on and share any appropriately inappropriate jokes in the comments section of this post
and Finally …..See the links below for some prostate cancer statistics and advice from the Cancer Council of Australia