This was one of the busiest weeks to do with Prostate Cancer, that I have had since the operation.
It has been a number of ups and downs, mainly ups.
I would like to say I got to the end of the week having balanced it out but who knows.
I will leave that for you to decide….
I got a surprise email from Alberto 35. On the radio they should have said delays can be life changing. He had successfully had his radical operation and he was just checking in with me. It was great to hear from him and the fact that he had contacted me so soon meant that he is in a good place.
My really good friend Nadine spoke to me yesterday and gave me the bad news that her husband, Richard has been diagnosed with prostate cancer. I had absolutely no idea he had even gone for a test. I really felt it for them both, they are such a lovely couple and this was a blow they never expected. I spoke briefly to Richard on the phone and he was the coolest, matter of fact person I have ever come across when faced with this. In fact, he eerily reminded me of myself. That was the bit that really worried me. I was worried that he was taking it too lightly, like I had done. We have arranged to talk on Tuesday.
I spoke with Simon from PCUK. He was the GP that stopped the presentation because the speaker said ‘The PSA test is not accurate’ 36. Can I have a Slice of Passion Cake with that artillery shell please. We are going to meet up on Monday so that I can interview him. Really looking forward to that as this will be a completely different take on the prostate cancer story.
One of the nurses from one of the studies that I am on mentioned me and my blog to one of her colleagues that organises a panel called ‘Kings Takes On Cancer’ (KTOC). At this panel three speakers (related to cancer research, patients, recovery, and treatment etc ) that have different backgrounds and different experiences, will talk for twenty to thirty minutes each and then take questions. This event not only targets the students and faculty of the hospital but also patients and patient’s families. It will be held in King’s and she hopes to make it an established monthly event that is motivational, raises awareness, creates a platform for people to ask their questions, see what is happening in cancer research and the future. I told her straight away I was up for it and I will be speaking on the 28th February 2019. See here and book a free ticket.
One of the other speakers, that will be telling his story is Chris Cottell. He emailed me and said it would be great to introduce ourselves and have a talk beforehand. I called him today and we spoke for about thirty minutes and I was left in awe. His story is absolutely fascinating, powerful and enlightening. Not only did he come out of the other side of a horrendous experience he has a totally unique solution to helping others.
Guys hospital had asked me a few weeks ago if I would be up for being filmed for an info commercial type video that they want to put together for perspective prostate cancer patients. I readily agreed which ultimately led me to the reception of Guys hospital Cancer Centre at the ridiculous hour of seven o’clock in the morning. Dressing room, make up, hot beverage, hot pastries – all on standby perhaps? Nope, no, some hope, and haha really. An empty disabled toilet became my dressing room as I changed into my fetching black sweat trousers and tee shirt. We thespians are a hardy adaptable lot, we have to take these matters in our stride. I’m sure Denzel had similar humble beginnings.
Today’s shooting consisted of entering the hospital with my ‘partner’, giving blood and giving a specimen. It was a chance to see the lovely Nurse Fee again which was the highlight of the morning.
The other highlight of the morning was when I was getting changed back into my clothes to go home the ‘executive’ dressing room (aka disabled) toilet was now occupied so I had to change in the toilets. Listening to an old boy either a) giving reverse birth, b)being consumed by something or c)being dragged into a parallel urinal universe. Did the job of waking me up for sure and off to work I went.
I met Simon, early in the evening, in the reception of the Hilton Hotel in Paddington. No greasy spoon or coffee shop for us. What was to follow was an hour of the most honest, revealing, informative and thought provoking interviews that I think I have ever taken. I learnt so much in that hour that I have to change my presentation again – quite happily. I am not going to say anymore on that because it will be quite an amazing blog all on its own.
I finally met up with Richard and off we went to have dinner and talk about his prostate cancer and what he could expect. Before I could ask if he was all right about me writing up his story he said to me “to make sure that I got all the details about the MRI scan when I write it up for my blog as they were very important”. OK then 😊
Richard is on top of and proactive about his health. He looks in his early forties but in fact is fifty two. Every year he has a health MOT and last year his PSA was 3.5 (that was the referral threshold for me but his doctor told him it had since been reduced to 2.9 for a man of his age). He had a digital rectal examination (DRE) and the prostate was normal sized and smooth. He also had a MRI scan and that didn’t reveal any problems. They decided to wait a couple of weeks and see what result a second PSA test would produce. The second PSA test was still high, so they decided on another MRI scan but this time with contrast. Contrast is where the patient is injected with a magnetic solution which makes the detail in the soft tissue stand out as it is absorbed by organs and tissues from the bloodstream. The vast majority of MRI scans are performed without contrast. This time an abnormality was detected which prompted a biopsy. When Richard had the biopsy, the results were conclusive. Of the eleven samples taken nine were found to be cancerous. This is the part that Richard wanted me to highlight – he really didn’t need to prompt me. Richard’s Gleason score ended up being 7 (3+4) which was exactly the same as mine. Just to recap, the Gleason score indicates how aggressive the prostate cancer is. A score of 7 is described as moderately aggressive, while a score of 8 to 10 is described as highly aggressive. I was quiet for a moment while this sunk in. There were a few uncomfortable lingering thoughts,
I know of some guys that have had the DRE, which was deemed normal but no PSA test. Richard’s DRE was perfectly normal.
Richards PSA was 3.5 which was the hospital referral threshold only a year ago when I had mine.
Without the second MRI scan with contrast this could have gone very, very differently.
I have poured scorn on a couple of GP’s that have not acted in their patients’ best interests, thankfully that is only a minuscule amount. The high majority are like Richard’s team, determined to get to the bottom of the high PSA result. Thankfully this has the best potential outcome with its early detection.
Richard had been well informed by the nursing team at his hospital. Like I said before, I was worried that he, like me, was too comfortable. If fact with his speckled silver goatee, he was ‘Samuel L. Jackson’ kinda cool and knew this was not going to be a walk in the park. We spoke for about two hours. Not a comfortable, abstract summary of what to expect but the high, low, tragic and funny parts. I gave him all the info that I wished that I had been given. As brilliant as nurses are when talking to patients, writing or reading about case studies and years and years of experience there will still always be something missing. If I had years of training, listening and interviewing lots of women etc, I could still never explain child birth to a woman that’s had a child. Not only is it very personal, there are subtle nuances that only a woman will ever know, feel and describe. The post effects of prostate cancer are exactly like that. There are lots of subtleties that I have not explained in this blog that I would only say face to face.
Well, there are some things that need to be said face to face with a person and not on paper or even in a telephone call unless geographically impossible otherwise. Think trying to relay personal feelings via a text message vs talking on the phone vs talking to someone in front of you.
While there are some medical reasons why a doctor may advise a patient that one particular procedure is strongly recommended over another, each man has to fully understand the consequences, either actual or potential and then make his own decision.
I chose my treatment path because, with all the available evidence, it was the best choice for me. I touched on ‘decision regret’ a couple of weeks ago. It’s a term used to describe patients who later regret the treatment decision(s) they had made.
Well, as hard as it has been, and certainly has not finished yet, I have no regrets at all with the decision that I made. However, it has taken speaking to a lot of other health professionals and patients, hearing so many stories and lots of my own research that has made it the correct choice. Without any of that my thoughts could have been in limbo.
Richard is going to have the radical operation on Monday.
At the end of my prostate cancer talk at work one of the guys that I knew congratulated me on my talk and said that he had also had the procedure a few months before mine. A couple of weeks later I asked him if he would like to talk about his story in my blog. I thought at best it might be a hard sell and at worse it was still too raw and his selection of words could be politely translated to “do one you insensitive git!” I was happily wrong on both counts, and he was only too keen to write his story which I received today.
Somebody asked me why do I include other peoples stories in a blog about my journey. The fact of the matter is that this has become so much more than just about me. I have made it my mission to help others faced with this condition. The more I hear about how people were saved by the dogged determination of medical individuals, divine intervention, plain luck and suspicions that something is not quite right, the more I want to help. All of the people that I have spoken to have found out in different ways that they have prostate cancer. Most of them had no idea anything was even wrong.
Each one of the stories could resonate with someone going through the same experience.
Another early morning shoot at Guys hospital but initially a lot of waiting around. I was a little peeved as well as I badly needed a haircut but I was banned from getting one because of some smart git called ‘continuity’ apparently. After the last morning of filming I was well prepared with tea and cake from Starbucks. Although my love for these expensive coffee houses is well known either I was blindly hungry or the cake was as good as I thought it was, as I was not moaning about the price I was just held up for. Eventually they remembered that we were here (we could have easily come forty five minutes later than this ridiculous time of the morning) and we made our way up to the MRI room. After correcting the director that I was indeed the lead role/actor and not lead patient (as us actors sometimes have to do)
I was given my brief. This morning, I was leaving my loved one and was having my MRI scan.
Unexpectedly, I even had lines to deliver, this time to the camera:
“It was very relaxing – I fell asleep. Had the headphones on
listening to music. The time went by fast.”
Seemingly innocuous lines, how hard could it possibly be?
I then had to change into the MRI gown and trousers. Ah bliss the memories came flooding back. The sweet innocence of seven months ago when I was last here not knowing of the humongous boulder being trundled slowly up the hill and then let loose in my direction.
Apparently, according to the MRI nurse, the first thing people do when they are told they need a MRI scan is hit YouTube. On said Tube there are a number of videos that do nothing to put people at ease especially, those who dislike enclosed spaces. I was tempted to do a ‘frothing at the mouth, kicking’, ‘scratching my fingers raw on the walls and hollering’ but I stayed to script.
Unlike my (fed and watered) seasoned thespian colleagues such as ‘Lawerence’, ‘De Niro’ or ‘Denzel’ who are given months to learn their lines I had merely a few minutes to commit the script to memory. What technique do I use? Do I become at one with the MRI?, Do I empathise with its importance? Do I become the room? Which acting method should I use? Shall I use Method or the Chekhoc technique? Decisions and no time to make them.
Therefore, I could not be blamed as every single time I was required to say them I either transposed the order, added an ‘um’ or two, paused out of ‘dear in the light’ blankness (rather than dramatic effect), missed words out or just fluffed them completely. Oh and the eye contact that I didn’t do. They didn’t want much – blood in another way.
Either they too have very short memories or they were sick of me as I was not required to do too many retakes. Then as easily as it started it was a rap as they say in the game. No spontaneous applause, eager autograph hunters, swooning fans, director and producer preparing their acceptance speeches for the ceremony. Nope. It was hope that another old boy was not giving birth again when you changed your clothes and off you go to work. Thank you very much.
I met with Nadine and we went off to a posh pizza place. I myself much prefer the tasty, artery-bashing high street version with the bacteria multiplier they call a salad bar. Basically, the type of pizza place she would not be seen dead in. Other than the posh liquid soap that you won’t find in the supermarket that replaces the hairy ball of soap, the triple prices, the server that calls you sir or madam and the absence of ‘riff raff’ they are all the same to me.
I told her the A to Z of the prostate cancer treatment, as I had with her husband, but concentrated mainly on the post treatment. They had both wanted to know what the Proton treatment was and thanks to Dr Simon I was able to tell them the difference, quite scientifically, between the normal radiation therapy and proton treatment. I then spoke at length at what it all actually feels like. The stuff that you will not find on YouTube, in a book or what a nurse can tell you who has not been through the procedure. None of them can tell you what it is like to be a man that has lost a lot and effectively become a baby again. I told her of the understanding she will need. I told her based on what I needed, wanted and needed now.
You get through the day and there is a horrible GroundHog experience waiting for you on the next. Of course, it gets better, much better but it’s still a very long process.
I gave them each the same final parting message on the day that I saw them.
“Lock down and wear it out”. They both smiled and laughed.
I laughted too but as soon as I was alone, I stopped smiling.