Ok calm down I’m not about to peg out, but I’ve just discovered that my PSA reading is up rather than on the smooth glide path down that I was counting on. I was at my quarterly meeting with the oncologist at Guy’s Cancer Centre when I was given the unwelcome news that the Unwelcome Guest has made a slight return.
But let’s put this into some perspective. The PSA blood test is a notoriously crude measurement but just about the only means available to check the state of prostate cancer particularly post-prostatectomy or in my case post-radiotherapy.
When the Unwelcome Guest was first diagnosed, my PSA level stood at 5.03. I was then put on hormone therapy and the dive down started. Within a month my PSA stood at 2.61. Six months later, in June, it was 0.8. Following radiotherapy last Autumn, a test in December revealed my PSA to be virtually undetectable at 0.07.
For it to be entirely undetectable it has to fall to 0.03 or lower and that of course was what I was hoping for, but the Unwelcome Guest had other ideas. Now I’m told the little bugger has bounced back up ever so slightly to 0.1. In itself this may not be serious, and doctors recognise something called the PSA bounce, with the numbers fluctuating, following radiotherapy. Hopefully this will correct itself, but if it continues to climb and were it to reach 2.0 then other medical options would have to be explored.
I can’t deny this was something of a shock as I was pretty convinced that while still on hormone therapy and following radiotherapy to misquote Yazz and The Plastic Population ‘The only way was down.’ But that’s the Unwelcome Guest for you; full of little surprises.
Prostate cancer that comes back is called a recurrence and happens in 1 in 3 men after treatment for early prostate cancer, but we are a long way from that and anyway if those are the odds on the table I’ll take ‘em.
My next appointment at Guy’s cancer theme park is in September and as you might imagine I’ll be paying pretty close attention to the scores on the doors. In the meantime, I’ll be doing what I’ve learnt to do since Autumn 2017 when I was diagnosed and live in the moment. Nothing bad is going to happen to me in the short term, we have a wonderful holiday to look forward to and then come September we’ll take a look at the lay of the land.
The war on cancer
Last week the newspapers were back to declaring war on cancer. Let’s hope it’s more successful than the war on terror. But this was welcome news; a new cancer hub known as the Institute for Cancer Research (ICR) is set to be located in south London close to the Royal Marsden Hospital. Researchers there will look at new ways to stop cancer cells from evolving and resisting chemotherapy. One of their goals is to ‘herd’ cells together and stop them from flourishing much in the way that drugs now control HIV. They are calling it the world’s first Darwinian drug discovery programme.
Senior scientists at the ICR argue that the traditional use of ‘shock and awe’ chemotherapy against cancer has failed because too often it has helped fuel ‘survival of the nastiest’ competition and evolution among cancer cells.
Dr Olivia Rossanese, head of biology, said: “We’re especially excited by the potential of APOBEC inhibitors, to slow down evolutionary diversity and drug resistance, and ensure our existing cancer drugs work for patients for much longer.”
Inhibitors are being designed to stop the action of a molecule called APOBEC to reduce the rate of mutation in cancer cells, slow down evolution and delay resistance. These drugs should become available within the next ten years.
By nature, I normally combine brutal confidence with a sunny disposition and a relatively good perception of my strengths and faults. As the French say, I’m comfortable in my skin. (Though they generally say it in French)
Recently that confidence seems to have taken a hit and initially I blamed the Unwelcome Guest.
When people learn you’ve got cancer, they immediately think you’re going to die and even if you’re not headed straight to the departure lounge, they tend to assume you spend all your time thinking about your mortality or lack of it.
Cancer changes people’s perception. Someone once said we all carry three words in our head to describe people we know. Whatever those three words are when people think of me, I’m pretty sure one of them is now cancer. I suspect this leads some to think I’m diminished in some way and unlikely to perform my job as effectively or be a generally high-functioning member of society. Cancer also coshes humour, stuffs it in a burlap sack and throws it overboard.
I’ve been too blessed in my life ever to be a victim and I’ll be damned if cancer is going to make me one now, but dealing with cancer is odd for those who’ve contracted it and for those who come into contact with it who are mostly thinking, thank God it’s not me. Cancer can be like water on limestone, a slow drip-drip of confidence erosion.
Part of my job is to get on my hind legs and talk to groups of people who then benefit from my enormous wisdom. Lucky sods. Unlike Mrs Preen who hates giving talks, I quite like it. If you haven’t already guessed, I’m a bit of a show-off.
Part of my cancer treatment is getting quarterly hormone shots which gives me a small insight as to what menopausal women have to endure. In short, I get hot flushes, flashes and sweats. A week or so after my first shot I was at a meeting at the Natural History Museum when suddenly, out of nowhere, I’m in a muck sweat. High temperatures seem to trigger these events and the summer is definitely worse but whatever the ambient temperature, I start leaking at least five times a day.
This is uncomfortable, unpleasant, but as I’ve said elsewhere if this is what it takes to boot out the Unwelcome Guest then so be it. No sweat you might say, but it’s not so great when it happens when giving a presentation to clients. Suddenly I’m melting in front of their eyes and I can see it’s as uncomfortable for them as it is for me. They’re thinking Jim’s either as nervous as a first date or having a heart attack, whatever their thoughts, dripping sweat from the eyebrows is not a great look.
On a more banal level, I’m also a bit Mutt & Jeff – too much loud rock & roll from a young age is the culprit there. Being hard of hearing also tends to sap one’s confidence, as if you don’t catch what people say, you just appear thick.
Don’t get me wrong this loss of confidence is by no means terminal and most days I’m just as arrogant, self-assured and opinionated as ever, but it does tend to gnaw.
As much as I’d like to blame the Unwelcome Guest for this intermittent confidence outage it might be as much about old age as cancer. I hit 65 this year, which in a peculiar way I’m quite looking forward to. My last socially significant birthday was 21 and that’s 44 years ago. Here comes retirement age, though I have absolutely no intention of retiring as I’ve always associated retirement with death. My Dad retired at 60 and was dead in eighteen months.
I may not be able to run as fast as I could, getting up from kneeling down requires a herculean effort and my prostate is shot, but I’m taking comfort in the words of PJ O’ Rourke: ‘Age and guile beat youth, innocence, and a bad haircut.’
The Brexit box-set psychodrama seems to be reaching the season finale, but let’s forget about that and concentrate on good news. I am now officially the James Bond of prostate cancer – my PSA level is 0.07.
Yesterday’s appointment with the oncologist, following two months of radiotherapy and a year on hormone therapy, revealed my PSA level to be ‘virtually undetectable’. Take that Unwelcome Guest, you now almost don’t exist.
To complete the Unwelcome Guest arse-booting contest my PSA level needs to be 0.03 or lower. Then it is undetectable and, for a while at least, I join the NED club. (No evidence of disease)
Now I know the Guest might already be planning a come-back tour but right now the NHS seems to have bested the little bastard. So first a big PHEW from me and then a huge thank you to all the wonderful urologists, oncologists, radiotherapists, GPs and nurses who have nursed me through this horrible twelve months. Without exception they have been splendid, caring and often funny. Who can forget the time I told a doctor that cancer had come as a shock as both my parents had died from heart disease, only for him to reply: ‘Don’t worry Jim, you’re still way more likely to die from a heart attack’. Such comfort.
So what now? I still have two years of unlovely hormone therapy to endure. I’m aware that some find this therapy truly horrible, and while I’m not crazy about it, if this is what it takes to be rid of the Guest then I’m in. I’ll see the oncologist every four months and hopefully my PSA level will decline still further. If it were to rise above two, that would be a cause for concern and would require further treatment.
I’m aware this game isn’t over, but neither is it game over. With one bound Jim was free to fight another day. I’m seriously considering having a couple of light ales this evening.
Anybody reading this blog in the UK who has prostate cancer will almost certainly know about Prostate Cancer UK. This is their mission statement:
‘Prostate Cancer UK has a simple ambition – to stop men dying from prostate cancer. Through shifting the science over the next 10 years to focus on radical improvements in diagnosis, treatment, prevention, and support, we will stop prostate cancer being a killer.’
I’ve just been doing some copy editing for their website, which is an excellent resource that answers many of the questions both sufferers and their families may have about this pernicious disease. You can get your Man of Men charity pin from them too. Check out the website, if you haven’t already, and support a worthy cause.
I think I have Stats Angst. Given that I’m almost entirely innumerate this is hardly surprising; it took me three attempts to pass maths ‘O’ Level. Show me a spreadsheet of numbers and initially I panic and then my brain fogs up as the figures swirl in front of my eyes. Me and numbers, we don’t get along.
But the Stats Angst I’m talking about here is a little different and of course cancer related. Eagle eyed readers of this blog will know that I’ve been on hormone therapy for over a year and have completed a two-month course of radiotherapy.
My cancer or hopefully lack of it will be monitored in the coming months by a simple PSA blood test. The last reading taken in June came in quite low at 0.8. I’m due for the next test in a couple of weeks prior to seeing my oncologist. Obviously, I’m hoping the number is even lower as this figure becomes the benchmark in my efforts to boot out the Unwelcome Guest. Despite being told it’s unlikely, I’m now scared the damn thing will have gone up rather than down. Hence the angst.
When having a consultation with the oncologist, I never quite know how to pitch the words I choose. Inevitably, given my condition, treatment and side effects there’s a fair bit of urological chat. So, what do I say? If I talk about excreta or faeces, I sound like a first-year medical student. If I talk about poo, I sound blushingly coy, in effect using baby talk. If I talk about shit, I sound like an oik. Cancer, it’s not just your health you have to worry about, it’s your vocabulary too.
The oncologist should be able to tell me how the Unwelcome Guest and I are getting along and what my prognosis looks like. Of course, I’m hoping she’ll say the Unwelcome Guest looks like he’s had seven shades of shit kicked out of him. Or words to that effect.
Technically I was tidying but really I was rummaging through a cluttered cupboard in my home office. I like to think of this as my man-cave but in a small house in central London it’s more like a man-cupboard. The rummage produced a list. Now to he clear, I like lists – a lot because:
- They help me keep on top of work.
- Stop me forgetting things.
- And allow me the joy of putting a little tick next to a completed job.
- Some people cross things out once they’ve completed a job but that carries a huge risk of not being able to see what you’ve done. No serious list maker would stand for that.
Christmas is the time of year when lists come into their own, with Santa’s Naughty & Nice list setting the Gold Standard, though to be fair to the fat, bearded chap I check my lists a great deal more than twice.
Inevitably, given the nature of this blog, the list I’m talking about is a little less full of festive fun. Prior to my prostate cancer diagnosis, I’d spotted blood in my urine which prompted me to go to the doc and set me off on my cancer capers.
What I’ve not mentioned before is that two years earlier I had also been peeing a small amount of blood and had sought medical help. On that occasion, following various tests, I was given the all clear though not surprisingly the question: ‘did they miss something?’ has popped into my mind on more than one occasion.
Which brings me to my uncovered list which were the notes I took at the time during a consult with a urologist at Guy’s Hospital.
- Benign cyst on left kidney.
- Enlarged Prostate. May cause problems in later life.
- No sign of tumour or cancer.
- Blood (in urine) probably caused by prostate.
- CT scan of kidney in case ultrasound had missed anything, ruled out cancer.
- Blood should go away, can take drugs for prostate, but these can have side effects.
- CT scan 3rd September at St Thomas’ Hospital.
So, what to make of that? Well I’m certainly no doctor, but it looks like they did all the analysis necessary though of course the enlarged prostate is the giveaway. I love the idea that it ‘might cause problems in later life’. I’m pretty sure I had in mind when I was 80 or 90 not just two years down the track. Unfortunately, it looks like the Unwelcome Guest had already made a booking.
I suppose if I have a criticism it is that I should have been put on what is called Active Surveillance and monitored more closely.
I’d forgotten I’d had the CT scan on 3rd September which is my birthday, but remember feeling deliriously happy when I saw the urologist for the last time and was given the good news.
Two years later after I’d started again on the unlovely round of tests, I remember telling Mrs Preen I had a strong conviction there would be no free pass this time. Unfortunately, I was right.
But let’s keep the doom and gloom at bay at this time of year. I’m feeling fine and the radiotherapy side effect, needing to pee all the time, is gradually going away which means I’m sleeping more and feel less tired.
Given the nature of this post, I guess I’ve got to finish with a list, so I’d like to shower seasonal goodwill on all of the following:
- Those who have their own Unwelcome Guest.
- Loved ones of those who do.
- Friends and family who worry about me.
- And anyone else who’s along for the ride.
Happy Christmas, Happy Holidays and Happy New Year. I’ll be back at the start of our next solar orbit.
Despite my best efforts to forget about it, cancer has the irritating habit of unexpectedly shouting through the letterbox – I’m still here you know, stop ignoring me.
An NHS letter flopped on to the mat a week ago containing a bowel cancer screening kit. As far as I’m aware this is sent every couple of years to everyone in the UK over sixty. The process involves smearing faecal matter on to a card and mailing this unlovely package back to the bowel cancer screening programme in Watford. If the sample contains blood, further investigations are required as this might indicate bowel cancer.
So, I literally got my shit together and sent it to Watford only to receive a letter back saying: ‘The result from your test was unclear. An unclear result means there was a slight suggestion of blood in your test sample. Receiving an unclear result is not unusual and does not mean we think you have cancer.’ Note to Watford, I do have cancer but hopefully not your variety. I don’t want to be greedy and isn’t one type of cancer enough for anyone?
Having just finished radiotherapy for prostate cancer I was warned I might see blood in my either my urine or bowel movements. I haven’t but I’m hoping that’s what the bowel test picked up rather than anything more serious. I’ve now packed off another completed kit to Watford, they clearly can’t get enough of this stuff, and will await their response.
Fit & Healthy
Keeping fit and healthy may not help you beat cancer, but Macmillan the cancer support charity certainly think it helps. They list these benefits that physical activity can promote:
- Reduces tiredness and some treatment side effects
- Reduces anxiety and depression
- Improves your mood and quality of life
- Strengthens your muscles, joints and bones
- Looks after your heart and reduce the risk of other health problems
I’ve been going to the gym to keep trim, which when you’re on hormone therapy is a bit of a battle. Last week, in an added effort to beat the Christmas bulge I attended my first aerobics class in what must be twenty-five years.
I shambled in behind beautiful, lithe young twenty-year olds feeling like an archaeologist’s fossil, only fatter. Have you ever noticed how gravity seems to have no effect on the young? They ignore it and dance through the air as if they were in space, whereas gravity takes one look at me and adds ten kilos to each of my legs.
Just then a stocky, well-muscled young man entered who was obviously the trainer. The room fell silent as he announced in a booming voice: ‘Hello my name is Volkan, I am from Turkey. They call me ZEEE VOLCANO.’
Well that was an hour I won’t forget. If I’d had the energy I’d have gone straight to A&E. But guess what? I’m going back tonight.