‘It doesn’t have to be that way’

The pair have collaborated together on a book of 55 humorous, rhyming, illustrated tales of everyday life, called Been There, Seen It, Done It!. But as well as a shared love of laughter and a close working relationship John and James have another thing in common – both have had prostate cancer.

So it seemed only natural when putting their book together that they should use its publication to try and raise awareness of the illness and funds for cancer-related charities.

John, 65, who lives at Ixworth, near Bury St Edmunds, is a supporter of The Prostate Cancer Charity and is involved with its efforts to highlight the illness during March, its annual awareness month. He has done several book signings at local book shops, where he hands out key fobs and other merchandise related to the charity in an effort to get people talking about a subject that is all too often taboo for many men.

In fact, he says, he doubts many people even know what the prostate is, where it is and what it does.

“One man dies every hour of prostate cancer in the UK but the message I want to get across is it doesn’t have to be that way: if it is caught early there are better chances of survival,” he says.

“Some people don’t talk about it but I don’t mind. I have been backwards and forwards to hospital for the last 40 years with bowel problems so I am not embarrassed, in the slightest.”

It was perhaps this candour and willingness to confront medical matters that saved John’s life.

In the spring of 2008, as he and his wife prepared to take a holiday in Cyprus, John started to notice he needed to go to the loo more regularly.

He decided to get checked out with his GP immediately and tests revealed his prostate was swollen. At that stage he did not know much about the prostate either.

“I have since learned the main function of the gland is to make most of the fluid that carries sperm,” he says. “Having a swollen prostate is not uncommon for men of my age but I was sent to the hospital, where they took several biopsies.”

After his return from holiday more biopsies followed and John was given the news he had dreaded – he had cancer.

The diagnosis came only a few months after his mother-in-law had died from abdominal cancer.

“I told my wife (the full diagnosis) but I told my two daughters that I had to have an operation to remove a ‘nasty bit’,” says John. “In time, of course, they worked out what the problem was. There were different options open to me but I hung on to the news that the medical team thought, because I had caught it early, the cancer had not spread outside the prostate. The unanimous family decision was that I should have the prostate removed which I had done robotically in June. I understood doing it robotically meant more accuracy and less damage to the all important nerve ends surrounding the prostate. The operation was a success and I was soon at home leading a normal life.”

John, now retired, worked in accountancy most of his life and says he had never been a writer or a great reader but after a bizarre dream in 2007 he was left with a compelling urge to put pen to paper.

During that year he wrote a memoir, called How Things Were, of his time in a semi-professional band during the 1960s. Its publication raised funds for two cancer support charities and John followed it up by writing a play, based on his memoirs, called Band of Hope and Glory.

“After I wrote the play I did a sequel and from there I moved on to poetry and rhymes,” he says. “My idea was always to have an illustration to match each rhyme but I couldn’t find anybody to do the drawings.

“Then one day my younger sister came over and brought her new husband with her. He was a children’s entertainer and had also been a graphic artist and designer. I saw some of his wonderful sketches and that is how we started working together.”

James, who goes by the name of ‘Justso James’, had also suffered from prostate cancer, although his experiences of the illness are very different from John’s.

The entertainer, who lives in Dereham, Norfolk, consulted his doctor in 2003 when he had problems passing water.

He was given a PSA (Prostate Specific Antigen) test, which measures blood levels of a protein made by the prostate gland. Raised levels can be an indication of a problem.

The level in James’ blood was high enough for his doctor to send him for hospital tests, where an MRI scan established he had cancer.

The results of further tests were not good.

“I had cancer in my prostate, prostate walls and outside in my lymph nodes,” says James. “This is known as advanced prostate cancer and meant I could not be treated with chemotherapy or radiotherapy which in time can kill off the cancer.

“My treatment was – and still is – an implant injection every 12 weeks and this hopefully keeps the cancer under control, which it has done for the past seven years, thankfully. As with most medical treatment there are many side effects, some reasonably easy to cope with, some life changing and terribly difficult to cope with.

“However, for many years I have taken tablets and injected insulin for diabetes, so whatever it takes to beat this cancer, bring it on! It’s always helpful to try and stay positive and look on the bright side as there’s always someone worse off than oneself. I say I’m living with cancer, not dying with it.

“If John and I can help people understand a little more about prostate cancer, by awareness, its treatment and after support, this can only be good for the sake of others.”

This year’s awareness month has been bolstered by the news that the first reliable test for prostate cancer could be available to British men within months and all older men could soon be screened for the disease, as women are for breast cancer. A version of the test kit suitable for home use is also in development and could provide results from just a few drops of urine within minutes.

The test is the culmination of three years research at the University of Surrey and doctors are so excited by it because until now the lack of a reliable test has made widespread screening for the illness impossible.

The current PSA blood test often gives false positive and negative results, meaning it can be wrong more often than it is right. As a result many men are subjected to painful, embarrassing and unnecessary tests, while in other cases fledgling cancers are missed until they have spread to other parts of the body and are much harder to treat.

The new test looks for the production of a different protein, called EN2, and initial studies show it to be much more accurate. In trials on 288 men it detected up to 70% of cancers, making it roughly twice as good as the PSA test. Importantly, it gave false positive results just 4% of the time – ten times less often than the PSA test.

Larger-scale trials are under way and if the test fulfils its initial promise it could be available in private clinics by the end of this year. It is hoped that NHS use and even a national screening programme will follow, aimed at spotting the disease in its earliest stages.

In the meantime, says the Prostate Cancer Charity, men need to know that they have a right to request the PSA blood test, which despite its difficulties remains the first line of defence in the fight against prostate cancer.

It says research it commissioned shows that a lack of knowledge and scepticism among some GPs are major hurdles for men, particularly those from poorer backgrounds, in exercising their right to request the test. According to the charity two thirds of men at an increased risk of prostate cancer are still unaware of the test, with lack of awareness even higher in men from lower socio economic groups.

Under current NHS guidelines, men over the age of 50 have the right to ask for a PSA test if they have had a balanced discussion with their doctor about its pros and cons. Yet, according to the charity’s research, one in 10 GPs do not support this right, and one in five GPs never talk about the PSA test with at-risk groups, unless they have potential symptoms of prostate cancer. This is particularly important, says the charity, as many men diagnosed with the disease will not display any signs of this disease.

The charity is using the awareness month to launch its ‘Testing Choices’ campaign, which will call for an urgent improvement in the current system.

John Neate, Chief Executive of The Prostate Cancer Charity, explains: “We know that the PSA test can play an important role for some men in identifying aggressive prostate cancers at a stage at which they can be successfully treated. At the same time, widespread use of the test can also result in slow-growing, harmless cancers being detected, leading to unnecessary treatments and side-effects. This balance of benefits and risks means that it is essential that every man should be enabled to make his own, personal, informed choice about whether the test is right for him. GPs must begin to engage men much more pro-actively in discussions about prostate cancer, their risk of the disease and the role of the PSA test. They must never stand in the way of a man’s right to make a personal, informed choice about having the test.”

? Been There, Seen it, Done it! (ISBN number 978-1-84549467-4) is available at Waterstones or to order at other bookshops, online at www.amazon.co.uk or www.arimapublishing.co.uk. John’s first year royalties will go to the Prostate Cancer Charity while James’ go to Dereham Cancer Care. John will be signing copies of the book at Waterstones in Bury St Edmunds on Wednesday from 11.30am to 3pm. Signed copies are also available from Justso James on 01362 693794.