33. The Year Just Gone and The Longest Seven Months

So an amazing thing happened today.

wellbeing finalist badge

                                                                                                                   

                                                                                                                    Monday 7th January  2019

                                                                                                                                                    13.25pm

Good Morning,

I’m SO pleased to tell you this morning that you have made it through to the final round of the UK Blog Awards 2019! YAY! Congratulations.

As you probably already know, this year we did a combination of your voting score AND a judging score. Your blogger judge (who will be announced shortly – it’s top secret!) reviewed all of your blogs across 3 different criteria and gave them a score. You are one of the top 8 in your group (well done) and will be going through to the final round where our blogger judge and our expert judge will be reviewing your blogs in more depth and across more criteria. The final is on the 12th April.

I entered the UK Blog Awards 2019 and became a finalist. Can you imagine.

Me a finalist 😊

I am so pleased and humbled. Of course, this is me so the route here was never going to be straightforward. Come on now you would be disappointed otherwise.

They said the results were going to be out on Friday 4th January. I won’t pretend that I   allowed myself to dream and when I didn’t see my name I was a tad disappointed. Then reading the small print they actually decided to split the results in two halves and my category would have been the very next one. The second half would be on the 7th January. So cue, long weekend. Monday morning as I got up at 6am in the morning I checked the website and nothing. Off to work and checked again at 8am. Nothing. Checked again at 10am and then at noon. At 1pm the website had changed so took a deep breath and yes the rest of the categories were there but not my blog.

Yes I was a little disappointed, closed the browser and carried on with work.

Hold on, where is my ‘Wellbeing’ category?

They had only missed off one whole category. What do you think the odds were that it would be my category? I sent off an email to the organisers and before I got a reply I received the email above. I have only had this blog running for six months, whilst others have been running for years. I have a fraction of the readership of many of the other blogs and there were over one hundred blogs in my category. I am elated and humbled. Thank you all that voted for me.

Me a finalist 😊

Last week was exactly seven months since I was wheeled into surgery wearing my green monster slippers. What a rollercoaster of a journey that was then to follow. At least I could say it certainly was not mundane.

Just a couple of months prior to that I had innocently gone for a health MOT and PSA test at the health centre. The long winded call from the doctors surgery which led to a battery of testing that I thought nothing of. Then the shock diagnosis and the life-changing decisions I had to make. The search for information and the people that I spoke to and the information that I didn’t know to ask for and that I didn’t get. Though I was upbeat, throughout the whole process I was totally unprepared for what was to come. I can, of course remain thankful that not only am I still here but that the surgery went as brilliantly as it could have done.

This was my second visit back to the hospital since the all clear at the end of August. For months everything was going sweetly until my interview with Richard and it made me think of my own mortality for a moment. Just to recap this is a man that had done everything with regards to regular PSA testing. Then out of the blue, with a PSA that was less than half of mine, now has prostate cancer that has spread well outside of the prostate. I can only go by what Richard has told me as on the face of it it’s very disjointed in the way it’s gone from zero to so advanced. The last doctor I had seen told me that they like to see the first two undetectable results before they can safely say they have got all of the cancer, so this next PSA reading was key.

I got to the hospital with just a little trepidation, which was not like me at all. It was just after Christmas so other than a massive queue outside the Shard building, on the way to the hospital, it was just as busy as usual. I booked in and was told to wait over by room nine. Room nine, incidentally, was the very same room that I got the cancer diagnosis what seems like so many moons ago. The waiting area was otherwise packed with patients. I didn’t have to wait long, five minutes at most before my name was called by one of the clinical nurses.

She introduced herself and generally asked me how I have been. She then went into specifics and asked me how the incontinence was. I said basically it was very odd and I didn’t know what to make of it.  I was down to one pad a day. If I am at home I don’t actually need one, otherwise I will not leak before lunchtime or once I am back at home. She asked if it was heavy or medium usage. I replied it was about a tablespoon for the whole day and annoyingly it had been this way for about two months.  I added that there was one week that I was completely dry and almost thought that this was it – that my incontinence was over. The very day I was thinking I was going to go without a pad I thought ‘No hurry, I can still use one for a few more days’ and that’s the day that from nowhere I started to leak again.

After a whole week of being dry!  She empathised with my frustration. Believe me if is was humanly possible to take a side kick at your own bladder I would have done it. Actually I am kind of surprised, with the things that have happened on this journey, that I physically cannot.

I had really hoped that I was going into the new year fully continent. With such a crap year that was going to be an important and achievable milestone, but it was not to be. Her suggestion was to try small cups of drink on the hour every hour, instead of fluctuating amounts. Not quick sure how I can work that one as the amount she suggested was 100 ml which is roughly half a standard cup of tea or coffee. The other thing to try is to do a pelvic floor hold every time I get up from sitting.

The next question was the million dollar question, ‘Hows the impotence?’ I smiled and said well it’s at about 50% which is a big improvement from the operation. I still use the pump daily. Then my smile turned to a smirk when she mentioned the Sildenafil.

Sildenafil is the generic name for Viagra. Once a week I need to take one tablet, before bedtime, to facilitate the Kings subconscious nightly meandering. I said it does not really work but it is great at giving me an eight hour headache, colouring my eye balls varying degrees of bloodshot and the unnerving feeling that two little men are sitting behind them trying to push them out of my head.

We both smiled. She was going to send my doctor a letter so that I could try another variant. I said that I had already advised my doctor of the side-effects but she just said we should continue for a couple of months and it may get better. She also said she was signing me up for the next clinic to discuss other options. Nothing ominous but I shall leave that to another time to write about.

The funny thing was we were ten minutes into our discussion and I nearly missed asking the one question that I was worried about the most, the PSA.

“Oh your PSA is fine. Some hospitals go lower than 0.03 but not much point in that. Your PSA is still undetectable.”

It was as casual and as simple as that. That was of course music to my ears and was the biggest relief and smile of the day.

Fast forward a week and I am completely dry again and have been for about four days and I have not followed any of the recent advice I had been given. Not because I am hard of hearing but because I generally get straight up without a thought and trying to drink 100 ml only per hour is a little impractical. Regardless, I am more cautious about thinking or announcing that all is cured. Just a case of waiting and seeing.

There is not much good to say about prostate cancer, not much good at all. If I start from still being alive and eventually making a full recovery that would be a good place to just leave it. What it has done, unexpectedly, is highlight the good and bad in relationships, shown me I might just have a book in me and introduced me to the world of volunteering.

I have experienced so much love and kindness from friends and family during my fight with prostate cancer. I would love to put the name of every person, in print, but rest assured I would accidentally miss a couple and that would be tragic. You have been there in person, via text or the phone. You have prayed for me, reached out with a simple text and some have cried. Most importantly you have been there.

I can personally think of two friends who lost their lives to a cancer other than prostate. One I knew who was going through the treatment beforehand and the other I didn’t, which made it all the more personal. We spoke a few months before she died and she encouraged me to stay strong. She also fought but ultimately lost her battle. The other was a guy that I knew from school who was the life and soul. We were not that close, so we just didn’t keep in touch as you do. He kept his condition mostly private.

I can still smile now when I think back to listening to my dad speaking so fondly of his brilliant relationship with his dad and how the sweet irony whistled past his head (even after buzzing around it a few times) and smacked me in the chops. Just with other things related to him I had to just let it go rather than consume me.

I did enjoy writing at school but I was never going to make a career out of it and I was not anything special. I remember the day I asked boss mum if she could get me a note book from the pound shop as I wanted to write about my experiences. She wasn’t impressed of course and had something to say but got it for me anyway. I remember receiving the book and thinking that I would never fill it and it would remain embarrassingly empty.

I happily got that very wrong.

I met the incredible team at Guy’s hospital Dr C, Fee, Harriet and all the other unsung professionals who work tirelessly for their patients. Thank you all.

One of the best decisions I have ever made was deciding that I would not keep this condition secret and that I would do the complete opposite. That eventually led to me emailing PCUK and that fateful call from Emma. Then meeting up with Jolynne, Maria and my first meeting with ‘Dangerous Driving Dave’. Through my talks with PCUK I have had the pleasure of meeting some incredible people and groups. Most importantly, however small, I was actually making a difference.

The most poignant moment for me was the pensioner who had lost her husband, brother and son all to prostate cancer. She was crying under her glasses and said that she was so happy and glad that I had come because she did not know what to say to her grandchildren and great grandchildren before but now she did.

In finding my own strength I also, inadvertently found my own selfishness.

From a lot of events that would constitute a low base I can balance that out by saying I am here and alive.

2019 can only be bigger and better.

6 thoughts on “33. The Year Just Gone and The Longest Seven Months

  1. Congratulations on your recognition and on your undetectable PSA. I hope you have many more undetectable readings to come.

    I’m about 8 years ahead of you in your journey, and I enjoyed undetectable PSAs for 54 months and then it became detectable again and has been climbing ever since. I had a PSA of 5.0 and a Gleason of 3+3 going into the surgery, and the prostate came out cleanly but had the Gleason upgraded to a 3+4.

    Needless to say, I was shocked by the biochemical recurrence as I closed in on the five-year mark despite the fact that my surgeon told me before the operation that statistics showed the was a 20% chance of recurrence.

    Again, I hope you don’t follow me down my path and that you have many more undetectable PSAs.

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      • Hi Peter,

        The next step for me would be salvage radiation therapy over the course of about 7 weeks.

        It’s not something that I want to rush into and, with a PSA doubling time of 27-35 months (depending on which method you use to calculate it), it’s growing very slowly. My biggest concern is about the long-term side effects from salvage radiation. If I can delay or avoid those, I will. (There’s a retrospective study by Freedland that shows that, with my numbers and pathology, I can just monitor for now and have a 94% chance of being around 15 years from now. Not bad odds.)

        Still, part of me says go for the radiation before it progresses too far. Of course, the other problem with salvage radiation with PSA at my level is they don’t know exactly where they cancer is located, so the could be zapping in one area when the cancer has already moved to another. Not good.

        But, again, just focus on the here and now and enjoy your undetectable PSA!

        Dan

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  2. Hi Peter
    I had my Prostrate removal Op on March 14 th last year and I have to say the most unpleasant experience was having the catheter attached for two weeks afterwards it was a most unpleasant and uncomfortable experience. It also resulted in me getting an infection in my left testicle which grew to twice it’s normal size as well as beer being extremely painful.It has only recently gone back to normal after two courses of very strong antibiotics. My point in adding to your story is that I can now run more or less without a pad day and night but if I’m going to be out for a longish period of time I wear a pad for safety because after a while if I laugh or cough without warning I do leak and sometimes it Is with considerable back pressure. This normally occurs on a full ish bladder which I can normally hold unless I cough or laugh etc.
    I keep doing my pelvic floor exercises but I seem to have reached an impasse with regards to this last hurdle.
    So far I’ve had just one Post Op PSA and I had a reading of .008 which is considered negligible. So far so good except an erection is completely out of the question as I can’t use Viagra due to a Heart condition. I have been offered the Pump but I’m not sure how it works and if it would make the act of intercourse far too mechanical to be enjoyable and satisfying for me wife and myself. What I would say is it was important for me to openly talk about my cancer experience as and when it progressed through the stages to my family and friends.I also found the support from local NHS support team to be of the highest quality.

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    • Hi Ron, Great to hear from you. Many thanks for your moving account. Can you send me your email address or number via my contact form and I will get back to you please 🙂

      Like

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