The Jackson Five, Enid Blytons ‘The Famous Five’. There is no ‘high four’ or ‘high three’. Five fingers, five toes, five tongues if you are a nagging female alien from the planet Trog etc.
You get the drift? I do like a good anthology and I have one for you again today. This time they are based on the number five and prostate cancer.
Sit back and enjoy.
Five days in the life.
You may have thought that clinical trials are boring things. Well far from it. I asked my mate to tell me about a week in her life. The life of a nurse in a prostate cancer clinical trial. Her is her story….
The week starts off busy with 3 patients booked in for hour long trial screening appointments & safety-check appointments back to back for our METAL trial. The METAL trial is trying to understand if metformin, a type 2 diabetic drug, affects prostate cancer cells and has an “anti-cancer” effect. If prostate cancer patients take part, they are randomised to taking metformin, or a placebo (basically a sugar pill) before surgery to treat their prostate cancer. It’s great to meet new patients who have considered our research studies & want to be part of future treatment development & leave their legacy for the next set of patients to benefit. It never fails to amaze me how patients are so willing to take part in a trial that might not benefit themselves, but will hopefully help future patients, at probably one of the most stressful time of their lives.
I’m splitting my time between the trial patients & training my new colleague to consent patients to the cancer Biobank (asking patients for their consent to use previously taken biopsy/surgery tissue samples alongside their anonymous clinical data for future research to benefit prostate cancer patients) in our new research area. We’re very proud of this ‘glass box’ as finally we have somewhere to see patients, approach them about our studies & take their consent, whilst upholding the patient’s confidentiality, after 3 years of proving to our management teams that the purse strings need to stretch to this.
My afternoon patients include a patient who is a self-confessed Lothario, who seems to alternate who escorts him to clinic, his wife or his mistress. He’s very open about this, and they are both lovely ladies, but you can’t help wondering as you walk towards clinic, who will be supporting him today?
Another METAL trial patient in for screening today, but he’s forgotten to fast from midnight ahead of this appointment. As we check to ensure our patients are not diabetic before we enrol them into this trial using Metformin (diabetic drug) or placebo, it’s important that we know his diabetic status before we proceed. Poor chap will have to come back for his ‘fasting’ bloods at 7.30am on Thursday before work, which in turn, means I’ll have to come in 1.5hours early to take the bloods. Ah, the things we do for our patients & our recruitment numbers 😁.
My next patient is ‘head-butt guy’ – a lovely South London man who gets very stressed in unfamiliar situations, aggravated by long waiting times…not a great mix for a hospital appointment. He got his nickname within our team as on first meeting me, he felt the table in our meeting room for ‘dents’. Puzzled, I asked why he was doing this, whereby he explained during a previous particularly stressful appointment to receive his diagnosis, he head-butted the table 3 times out of frustration at waiting to be told his biopsy results. He laughs about it now, but this just goes to show we often under-estimate the stress our patients are under.
I duck out of clinic for the rest of the morning & continue preparing for a big trial monitoring visit (quality control)
1st of a 2-day monitoring visit, and let’s just say the scrutiny & minute verification is painful & we’ll leave it at that.
Patient didn’t arrive for surgery – search party ensued, involving about 6 medical, theatre & admin staff trying to get hold of the patient or his next of kin, but to no avail. This is worrying as we saw this patient for his trial visit on Monday, he always arrives for his appointments promptly and he was fully aware of his surgery today & didn’t seem particularly stressed, so this non-attendance is very out of character & has us all worried for his safety.
Butterfly-guy is a patient that reminds us all to deliver patient centred care. This patient has been determined to fill the void after his wife passed away & has thrown himself into butterfly watching. His treatment decision very much lay with his need to have a quality of life that allowed him to continue this pastime without too much interruption from treatment scheduling (so having to come up to hospital for multiple visits) & long-term side effects. Each consultation takes twice as long but feels worthwhile as we really have given this man the time he needs to talk through his concerns & make informed decisions. He has agreed to participate in one of our trials – I think the added clinician contact will be good for his emotional health & social isolation, throughout his cancer journey.
Another clinic, another 2 hours of waiting and waiting and waiting. This is a common theme for research teams, as you are keen to see the trial patients you have pre-screened or those on your studies but need to be mindful not to disrupt the normal running of clinics. So, we wait for our turn with the patient.
Our research team have worked hard to build good working relationships with the clinic teams, especially the clinical nurse specialists, as our role in supporting patients often overlaps. We do what we can to share the workload where appropriate, whilst not overloading the patient with information & clinical staff introductions. Today, we have submitted a funding application to address the altered sexual function of post-operative male bladder cancer patients, as we do with post-operative prostate cancer patients. If we get funded, 3 nurse specialists & 3 researchers plan to hold patient focus groups, develop a pre-operative education leaflet, conduct patient interviews, develop a service evaluation questionnaire & start a new andrology clinic to support these patients. Fingers crossed we get this funding & can further support our patients.
Five days to blog awards
Some of you may have noticed but its only five days to go before the announcement of the winners for the UK Blog awards. I just want to say a big thank you for those of you that got me this far and keep your fingers crossed, say a prayer, put on your lucky jacket or anything else that you do for Fridays result 😊
This year unfortunately it’s not a swanky dinner in London but a live stream of someone opening envelopes. Anyway, I am not going to lie and say well the best person will win and I’m glad to have come so far blah blah – I really do want to win.
From a very low base which was last year this year has been very much on the up and this would be such an achievement. Most importantly anything that can be done to advertise this little prostate thingy that has been trying to kill so many of us can only help another person somewhere.
Opening night – Five hours, five men and five minutes
The world famous Hackney Empire theatre in London. Home to the greats like… erm… well let’s get back to that. They do have a lot of Christmas pantomime shows there though.
It’s happy Mother’s day and everyone is in a fantastic mood. Tonight it’s home to a black comedy show and I have been invited by the promoter to not only have a booth next to the bar but I get five minutes to address the crowd during the interval. It’s almost a sold out performance with eight hundred people already purchasing tickets. I am actually quite excited.
The thought of the Ellis bomb detonating later on to the unsuspecting Emipre audience tickled me a little bit.
I came armed with the complete prostate cancer kit. Bunting to wrap around the kiosk, plenty of cards, leaflets, badges and a couple of donation tins. I was ready to rumble or as they say in the theatre, “Lights, camera and action”.
‘Click, swoosh, bleep’
That’s the sound of the force field going up around my booth. Not only was my booth rendered impenetrable it was also invisible to black men.
It must have been slightly faulty as I had a stream of enquiries as to where the ladies room was. I should have made a poster with an arrow on it.
It was looking like it was going to be a long five hours. About forty minutes in and something strange and then something amazing happened.
The strange was my first customer. He wanted me to explain the PSA test to him and how he could go about getting one. He actually took me by surprise. I happily told him and hoped my enthusiasm wasn’t taken for “there is a crazy dude on the PC counter”. Ten minutes after that the amazing happened.
A barber from north London called Patrick Phipps (with what was to be quite an impressive business card) came over and shook my hand.
“Right what literature can I take with me? I am a barber and I want to offer men a half price hair cut if they can prove that they have had a PSA test”
This was one of those great moments where I had a great deal of faith restored in relation to black men’s attitudes to prostate cancer testing. I was momentarily taken aback and then shook his hand greedily while grinning like a loony tunes character. Not afflicted himself, he had heard of the mechanic (that’s the black guy that offers men a discount on car repair if they can prove they have had a PSA test) and he just wanted to make a difference where he could. Of course the cynic in me said well it wont take long for these guys to work out what to say in order to get the half price haircut but I had to go with the moment. I told him not to bother with the dribs and drabs that I had on the counter and I would order him some new packs of literature instead. I will be visiting him shortly in person.
That kept me on a high as I continued to be pointer man for the toilets. Even when a couple of ladies asked if they could leave their drinks on my table while they went to the toilet I smiled and said it was no problem.
The show was over running so I didn’t get to talk before the interval as planned and I was beginning to think I would not get to say anything. Despite being adjacent to the bar no one else came over to talk about prostate cancer.
The show continued and the next plan was that I was going to have five minutes before the final highlight act to speak to the audience. I got the cue and made my way to the stage and stood by the side as the compare introduced me as a guy with something important to say.
I saw for the first time how much the theatre was packed. I don’t suffer from nerves when I do this. I did a double take of my trouser fly and stood by the wings.
I had reached the point of no return.
I walked onto stage, eight hundred pairs of eyes (who have paid good money) trained my way. No pressure then.
I could not see a thing. To this day I don’t know how artists do it but with the spotlight straight in my face and following me around I saw nothing other than one bright silly light. Somebody on the middle balcony was talking and was being hushed by the people around them.
“Hello everybody, my name is Peter”
“Hello Peter”, approximately eight hundred people said in unison right back at me, unexpectedly, but very comforting and sweet. Made me smile for a second.
Now onto business.
“I am a volunteer for Prostate Cancer UK and I have prostate cancer”
The people who were talking were hushed again and you could hear a pin drop. That’s quite a feat for a theatre full of black people armed with mobile phones and drink.
Having said that with the light blinding me I could not tell until the end that they were actually still there and had not been teleported somewhere else or silently stampeded out of the theatre.
I went on to give them some stats – 1 death every hour, #3 biggest killer of men in the world, #1 cancer in the UK by 2030, 1 in 8 white men but 1 in 4 black men, no symptoms at beginning blah blah. Of course, I could not see to gauge how it was being received but I could imagine I had said enough to thoroughly ruin some men’s evening. I finished by saying that the role of women was so important as us men won’t go to get tested so we need the women to do their bit. They have partners, brothers, husbands etc and they need to encourage them to get tested as it is killing us like flies.
I finally thanked them for their time and left to applause so it could not have been all bad. To my surprise while I was rehearsing earlier I would either forget or fluff part of my lines. Not this time it was perfect.
The final act was very funny, so was very effective at bringing back the pre-Ellis happy mood. I went back to my desk and eventually got a steady stream of all female visitors that left donations (oh and two more men bringing the total to five for the whole night).
The promoter would later on remind me that I made the only mistake of not saying on the stage how I have recovered to date and that this thing can eventually have a ‘happy-ish’ ending. In my haste not to get stoned or dragged off the stage I have forgotten that important part.
What I quickly noticed was that along with the donations people were asking me how I was and looking at me like I was on my last legs. I don’t want to say they were pity donations but there was definitely a trend and some people did give me a sorry look.
Light bulb moment.
OK then let’s make a good night out of this for charity and with that lets smile a little less wide, we can shake the tin a little bit more feeble (if you want to think I’m on my last legs then so be it) and take a leaf out of Joel’s book and make with the big sweet doe eyes.
The notes came rolling into the donation can and my first stage performance was not too shabby. The next show is in May and if I get to take the stage again my act can only be better.
“And never mention that Scottish play”