27. So how did you say you were again Mr Ellis?

Funerial director

“So how are you?”

It’s question that I am asked quite often in passing conversation. I smile and always reply along the lines of,

“I’m alright you know” or “I’m good, the recovery is long but it’s going in the right direction”

When people see me in person they comment that I look really well and some have even remarked that I have lost weight (I like those people even more). What people are really asking is,

“Are you OK?”

Well it’s not an answer I can fully address in a two minute conversation. It’s just over five months since I have had the operation and I have made tremendous progress if I look where and what I have come from.

To summarise how the last six months have been.

I had the ‘fun’ and seemingly worry free testing that I had to go through which led to the shock diagnosis of being told I had the big C. I had the choice to make of the radical operation or the unknown of the radiotherapy and being turned into a chick via the hormone treatment. Choosing to break the cycle of silence and making it a mission to talk to men instead, wherever I could. The worry of the operation and its aftermath and the elation of being told that my nerves had been saved. The ‘summer holiday’ with the catheter and pleasure of public toilets. The devastation that is the double whammy of being both incontinent and impotent at the same time. I had the bitcoin education in the park and crossed the eye of a mutant rodent. I talked to even more people and diverse groups. I fended off my first and hopefully last geriatric groupie.

“I’m good”

It would be great to say that the King having an extended holiday meant that I had discovered a bright and brave new world. That I have found that it’s not as important as I once made it out to be. That I have discovered a new appreciation of flowers, classical music and arts and crafts.

Well that’s absolute and utter rubbish! 😊

If I was to measure my impotence I would put it at about 50%. That’s obviously a relief and though I have absolutely no control over when the King decides he is going to start playing  ball again properly. I am as happy as I can be in this situation. If anything is really annoying me though it’s the tiny bit of incontinence that I still have and has been stubbornly refusing to improve. I am completely continent during the night and once awake I will not leak again up until lunchtime. For the whole day I will not leak more than a tablespoon but this has been the case for at least a month now. I have increased the pelvic floor exercises this last week to six times a day so I am hopeful this push will finally solve it. From the total incontinence I was experiencing not too long ago it’s a fantastic place to be and I believe that I am still on track for total continence by my next PSA reading just before the end of the year.

“I’m good”

I was never really a public speaker. It’s something I can do, mainly because I have had to, without fear but I am still in awe of those who take a stage and they become an extension of it, command and entertain the audience and thoroughly enjoy it. I love talking and seeing first-hand the small differences that I can make. I was thrown into my first PC talk by ‘Dangerous Driving Dave’ and I thrived and absolutely loved it. I have spoken to a room of only ten people, when there are thousands in the same building, and then I have addressed unseen thousands via the internet.  I have convinced some to get tested and others to ask their loved ones if they have been tested. I have empowered those who were denied the chance of a test to go back and constructively demand and get one. I have spoken to those that are hungry for knowledge and those that used to be in denial but are now facing their fears head on instead of doing nothing. I have encouraged those who were happy with their secret to open up and say that I did what they couldn’t do or have given them the courage to do the same. I have spoken to the power and decisions makers behind PCUK.

There have been some annoyances and some tragedy.

The annoyances of doctors playing ‘budget’ and actively dissuading guys from getting a PSA test to the doctor that told outright lies regarding the process. Once I had taken the decision to go public with my condition there were a few that suggested that I should look into holistic and herbal remedies. Some were at best innocent and well-meaning, while others were completely reckless. The annoyance is that not one of these people could point to a single clinical trial that has been done on the ‘cure’ they are suggesting or peddling. A friend that I spoke to last year when PC was to me something that only old people got was telling me that he had contracted cancer.  To quote his words “The doctors are too quick to cut you up. I am taking another route”. Months later he reached out after I had just been diagnosed and told me he was still looking at other options and wished me well. He did suggest looking at other options but no hard sell which I respected. He said he was working with a nutritionist, looking at lymphatic draining and working with surgeons abroad. He was reasonably upbeat.

I was the photographer at his funeral this year.

I decided that I wanted to write a book but in the mean time it was suggested that I should look at writing a blog. What an amazing suggestion and decision that was. My blog has been well received, seen and read by over a thousand. Readers have told me that I have delivered a message and experience both poignant and hilarious. More importantly it has been honest and informed and readers have told me they have passed it on to others who have been recently diagnosed with cancer. Guy’s hospital are giving it to new PC patients. It has been therapy for me and a reminder of exactly what I have overcome.

Oh and despite it being checked and triple checked there are still some grammatical and spelling mistakes being pointed out to me.

Thunk’s very much 😊

I have met some incredible people on this journey and I have realised that I have so many good friends that do care and have been so wonderful in showing me and letting me know that. I have so many loved ones and family and extended family that have just been there. I have had strangers pray and ask about my well being. I have heard from people who I have not seen or heard from in years extend a caring word or a big hug. I have been told that I am brave and that people are proud of me and that I have been an inspiration. All qualities that I don’t actually believe of myself.  I have changed some personal habits of a lifetime that I thought that I could never change and there is still much to do. I have returned back to full time work without a hitch.

All of this is possible and I’m here today because I was determined to get a health check without a thought for a PSA check and a locum doctor that gave a stuff and went that extra mile.

“Yeah, I’m good you know”

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