Friday, November 22, 2024

I’ve got prostate cancer and can answer all the questions you’re too embarrassed to ask: From extreme pain to needle guns in undignified areas and penis pumps – Dead Ringers creator JON HOLMES explains all

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Finding anything funny about a transperineal prostate biopsy is not easy — where, under local anaesthetic, a series of needles are punched through the skin and muscle between the rectum and the base of the penis to reach the walnut-sized prostate gland below the bladder.

But the writer, comedian and broadcaster Jon Holmes is absolutely certain humour is the way to get through experiences such as this and get more men talking about cancer

As he reveals for the first time today, he was diagnosed with prostate cancer last year, despite experiencing ‘zero symptoms’.

Married with two daughters aged 14 and 12, Jon, 55, is the Bafta-award winning co-creator of the Radio 4 sketch show Dead Ringers. 

He won a Gold Aria this year for his Radio 4 programme Generation Shame about his experience of being adopted, and is the creator of The Skewer for Radio 4 and BBC TV, a multi-award-winning satirical take on the week’s news.

Jon discovered he had prostate cancer last February after PSA blood tests revealed he had a high level of prostate specific antigens

He is hardwired, he says, to find humour in the darkest of places.

And a new podcast, Jon Holmes Says The C-Word, is exactly the kind of programme he says he desperately wanted to tune into after the biopsy confirmed that — despite having no symptoms — he had prostate cancer.

‘I so badly wanted to talk to another man about it,’ he says.

While friends he told were sympathetic and a few ‘got a bit teary’, he says, ‘I absolutely did not want that tilty-head pity look’.

What he did want, as well as a laugh about the indignity of it all, was honest discussion of the realities of cancer treatment.

As he explains: ‘I wanted to know what a catheter would feel like, or what do you do with a penis pump [used as a physiotherapy tool to boost blood flow after prostate surgery]. 

But it was really hard to find other men to talk to about cancer and I thought, ‘If I get through this, I’m going to write a book or make a podcast for men with all forms of cancer that I would have binge-listened to had it existed.’ ‘

Each episode tackles a different issue, from the shock of diagnosis to diabolical procedures — all things men don’t generally talk about in the pub.

 Monty Python’s Eric Idle, who was diagnosed with pancreatic cancer in 2019, says: ‘Good lord, the things you have to do with your clothes off in front of people, all that stuff. 

It’s just so undignified. Especially with your arse hanging out in those terrible hospital gowns.

Just remember that the last laugh is on you! You know, it’s OK to be funny; I think it’s absolutely the best.’

Stephen Fry, who was diagnosed with prostate cancer in 2018, talks about the ‘worry, embarrassment, frustration and indignity which you very quickly get used to…

Oh, it’s good to laugh, isn’t it?’ he says. The fact that Jon is a survivor like me gives me nothing but the intensest pleasure.’

Jon admits sheepishly that it’s opened his eyes to the myriad indignities most women cope with all their lives — such as mammograms and cervical smears, as well childbirth — but most men will reach late middle-age before having an intimate medical examination.

‘Having something wrong with your manhood is every man’s worst nightmare, so we don’t talk about it,’ he says. ‘It’s much easier to discuss what we saw on Netflix last night instead.’

His cancer diagnosis was entirely serendipitous. 

Last January, an advert from the charity Prostate Cancer UK popped up on Jon’s social media feed, encouraging men over 50 to have a PSA blood test: this measures levels of prostate specific antigen, a protein produced by the prostate.

High levels can be a sign of cancer. ‘I thought of Stephen Fry and how much he has done to raise awareness of prostate cancer,’ he says. ‘I thought: ‘I’ll get that tested’.’

And so, for the first time in, ‘ooh, decades’, Jon called his GP.

PSA tests can be unreliable, sometimes giving false-positive or false-negative results; furthermore, an infection, exercise such as cycling, or recently having sex can all temporarily raise PSA.

‘My PSA was slightly raised at 4.8 [normal range for a 55-year-old is typically 2.5-3.5], so my GP referred me for an MRI scan within a week,’ Jon explains.

‘I wasn’t worried, I thought my PSA was probably high because I’d run to the appointment.’

When the scan was ‘inconclusive’ he was given a prostate biopsy.

‘I didn’t know what was involved, but I knew I didn’t like the sound of it,’ Jon told Good Health.

Jon went to Ashford Hospital in Kent, near his home, on February 26 last year without his wife, Nikki, an arts and education project manager, ‘because I’m a bloke and I didn’t want any fuss’.

After stripping from the waist down, he had to lie on his back and put his feet into stirrups, while an ultrasound probe — ‘I’m sure it was an entire camera crew’ — was inserted into his rectum to guide the biopsy needles.

‘At which point you realise all dignity is lost,’ he says.

‘The doctor explained he would take 23 samples from different areas of my prostate using a spring-loaded needle gun.

‘A nurse was assigned to hold my hand because of the extreme pain,’ he grimaces.

‘They even shot the needle gun several times before aiming it at my perineum [the area between the base of the penis and anus] so I wouldn’t be alarmed by the incredibly loud sound. 

I was warned that my perineum would swell to the size of an orange and I wouldn’t be able to sit down properly for a week after. All true.

‘But it was when they strapped my penis and testicles to my stomach with tape to lift them out of the way, while a really awful track played on Heart FM in the background, that I thought: ‘This is ridiculously funny. This is priceless comic content.’ ‘

And he immediately started compiling a mental list of ‘spectacularly undignified moments’ on his very unexpected cancer journey, with his diagnosis confirmed a week later.

For the podcasts, Jon contacted other cancer patients — including the comedians Stephen Fry , Mark Steel (throat cancer), Richard Herring (testicular cancer), Matt Forde (spinal cancer), as well as Eric Idle; plus actors Colin McFarlane (prostate) and Ben Richards (bowel cancer), rock star Mike Peters (leukaemia), and journalists Jeremy Langmead (prostate), Nick Owen (prostate) and Jeremy Bowen (bowel) — to discuss cancer in raw and sometimes hilarious detail.

Each episode tackles a different issue, ‘from fingers up the bum to catheters, via biopsies, surgery, stomas, feeding tubes, penis pumps and incontinence pads’.

Jon cannot remember the last time he saw his GP before requesting a PSA test. The GP checked his prostate (‘the finger-up-my-bum method’). 

‘He also took some blood and that was that; I didn’t think about it again,’ says Jon.

He was expecting his MRI to be clear as he was young-ish, fit and otherwise healthy. 

But the results, delivered a week later by an oncologist via Zoom, were devastating.

Jon recalls: ‘He said: ‘I’m sorry, it’s bad news, we’ve detected signs of cancer in your prostate.’

‘I didn’t hear anything else. I just thought: ‘I’ve got cancer. This can’t be happening to me.”

Fortunately, the cancer was slow-growing and stage 2 — contained within the prostate.

In September, Ben Eddy, a consultant urological surgeon Jon saw privately, operated to remove his prostate.

This surgery causes temporary erectile dysfunction and incontinence due to nerve damage; in some cases the effects are permanent.

‘The first thing the surgeon said to me when I woke up after the operation was: ‘We’ll get those erections back!’ ‘ recalls Jon.

Around 20 per cent of patients with good erectile function won’t get their erections back spontaneously after surgery, Mr Eddy explains. Removal of the prostate also means men ‘don’t ejaculate — that’s incredibly difficult for them’.

‘Yet all this is almost taboo because societal pressure says sexual function is what defines you as a man. It takes a generation to change that mindset.

But men are doing a lot better in terms of talking about health than they were 25 years ago,’ he continues. 

‘I’ve treated so many men for prostate cancer whose friends are already patients. 

However, older men find it difficult not just to talk about cancer, but the manly things too: ‘I’ve lost my erection’ or ‘I’m leaking urine’.

The comedy writer is trying to find the humour in his diagnosis. Believing that men who talk and laugh do better after cancer treatment.

The comedy writer is trying to find the humour in his diagnosis. Believing that men who talk and laugh do better after cancer treatment.

‘In our NHS service [Mr Eddy and colleagues run a community urology clinic in local GP surgeries], we have a monthly meeting where men can come with their wives and partners and have an afternoon with a cancer nurse talking about erectile function and incontinence recovery. 

 It’s been hugely successful because they chat, make friends and they network afterwards.

‘Wives and partners play a huge part in getting men talking,’ he adds. ‘In my experience, single men don’t do as well as married men, because they bottle things up.’

He also believes that men who talk — and laugh — do better after cancer treatment.

There’s solid evidence that men generally prefer to ‘soldier on’ if they have troubling symptoms than seek out medical advice.

Research published in the BMJ in 2013 based on data from almost two million men and two million women found the GP consultation rate was 32 per cent lower in men than in women — with the greatest gap between the genders between the ages of 16 and 60.

And while men represent 52 per cent of cancer cases, only 38 per cent of the calls to the Macmillan Cancer Support Line come from men. 

The charity Cancer Support UK offers six-week support groups to anyone struggling to move on after a cancer diagnosis, including men-only support groups, which are all free.

It’s important for men to meet others with similar experiences, in an environment where they feel able to do so, explains Charlotte Poulter, the head of service for Cancer Coach.  

‘Men are not used to seeing other men who’ve had cancer express their emotions, so it’s important for them to know it’s OK to be vulnerable,’ she says.

But while support is available, many men don’t know it’s there.

Kate Fulton, a clinical psychologist with the support charity Maggie’s, based at The Royal Marsden Hospital in London, says the percentage of men accessing help is always lower than women.

Maggie’s runs men-only prostate networking groups and androgen therapy workshops for men who are being treated with hormone therapy.

‘They can talk about the challenges — erectile dysfunction, weight gain, hot flushes and changes in mood — which for some will be lifelong,’ says Kate Fulton.

‘Treatment for common male cancers such as prostate or testicular can change your view of your masculinity and your identity which is very exposing,’ she adds.

But while, in 2023, Maggie’s supported more than 311,000 visits across their 24 centres, less than 108,000 (35 per cent) were made by men.

‘It goes back to societal expectations and what it means for a man to talk about being anxious or depressed or frightened or sad.

‘There’s stigma around mental health and also stigma around cancer — and particularly so for men who play lots of different roles, which may make them feel they’ve got to be strong.

‘They’re husbands, fathers, brothers, sons, they’re providers and fixers. They want to protect their families rather than burden them.’

She adds: ‘We know from research that keeping a cancer diagnosis to yourself makes people feel more isolated and that can worsen experiences and outcomes. 

‘But it’s hard for older men particularly to even acknowledge that they need to talk. They still think they need to be stoic and ‘just get through it’.’

The good news is that this is changing with the younger generation. 

‘We see much more openness in our younger men’s groups,’ says Kate Fulton. 

‘Men in their 20s, 30s and 40s do talk about cancer with their friends, there is far more openness. 

‘Sharing real stories in the media such as Jon’s programme makes a big difference to other men,’ she adds.

In the studio making the new podcast series, Jon says there was a lot of laughter and almost no crying.

‘We were always looking for the fun, the chink of light,’ he says. 

‘My reason for making the series was to demystify cancer and explain the process from first tests to recovery.’

He’ll also be encouraging listeners to tell their own stories.

 ‘I want to encourage transparent conversation about cancer treatment between men, share advice and, where possible, find the humour in it.

‘Because the only way to deal with this thing is to laugh at it and treat it with the utter disdain it deserves.’

  • Jon Holmes Says The C-Word starts on BBC Radio 4 on July 9, with episodes released weekly on BBC Sounds.

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