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February 2014, I had my private health check, which I religiously undertook every two years. The blood test for prostate cancer; a PSA ( Prostate Specific Antigen is a protein produced by the prostate gland) came back “raised”, an indicator a tumour might be developing. My then GP dismissed the PSA as a very “poor blood test” and I thought nothing more of it.
Roll forward to the 2016 Health Check and again my PSA came back raised. The GP had changed and so had the advice; “You must see a urologist. Immediately.”
The urologist gave me a rectal examination. He quietly said, “You need an MRI scan. Urgently.”
The scan detected a potential tumour and a Biopsy was required. Quickly.
Wednesday 22nd June, a week after the Biopsy, my wife and I sat down in front of the Urologist and he simply said, “It is cancer”.
It took a few minutes for me to take in what had been said. I then interrupted the conversation my wife had leapt into, noticing I was clearly disorientated. “Is it terminal?”
“I don’t think so. However, you need a full body scan to determine if the cancer has spread to your bones”, which was not quite the answer I was seeking!
24 hours after the full body scan, the Urologist met my wife and I to inform us, “At last, some good news! The tumour is still contained in the prostate; it is curable!”
Relief. I am not going to die. Well, not yet any way.
Stage 3, aggressive prostate cancer, to be treated through a 3-hour operation; a prostatectomy, or a 3-year programme of hormone treatment and 7 ½ weeks of Radiotherapy, was the prognosis. So; decision time. Both have 70% success rate. Both have life changing side effects.
Broadly, the surgeon explained my operation would lead to a period of incontinence and having to live with erectile dysfunction. This would entail a two-year recovery period leading to a “Viagra assisted erection” that would be in the region of sixty per cent of what I currently enjoy. Choosing the Hormone treatment / radiotherapy has an extremely detrimental effect on the functioning of both bladder and bowel, which can be permanent. Plus, loss of muscle definition, major reduction or total loss of sex-drive and hot-sweats.
Neither choice leaves a man, or his partner, eagerly anticipating commencement of treatment.
But at least I had a choice, if diagnosed Stage 4; the cancer has metastasized and spread to the bones and major organs, it would have been just Radiotherapy / hormone treatment, and the cancer is not curable. Basically, you live the rest of your life undergoing some form of treatment. Oh, and only 30% of men with Stage 4 prostate cancer (PCa) live beyond 5 years from diagnosis.
Yep, I was lucky. The Dark Destroyer had yet to advance from my prostate and commence his deadly tirade throughout my unsuspecting body.
My wife and I agonised over the decision, which had to be made swiftly as we were advised the potential for the tumour to break out of the prostate was a distinct possibility. So, we chose the operation. Potentially a ‘quick-fix’ and thus avoiding 3 years of “chemical castration” as my wife referred to the Radiotherapy / Hormone option.
Three years on, and thank the heavens currently the cancer is still undetectable. However, life has been somewhat “challenging”. My wife and I knew Erectile Dysfunction was going to be a problem, but not the extent and complexity of that problem.
I can no longer produce semen, just a bodily fluid cocktail, that is predominately urine. Masturbation and Fellatio produce this cocktail, and in quite copious quantities, prior to orgasm. Ejaculation is far, far more difficult and results in a sensation that is a lot deeper seated than before the operation.
Attaining and maintaining an erection is still incredibly frustrating. This is after utterly hours dedicated to pelvic floor exercises and masturbation to restore the muscles and excite the nerves vital to the erection process, plus a daily 5mg dose of Viagra, along with another 100mg before attempting intercourse. All this and a wife who is patient, sensitive and forgiving.
My wife’s love, affection and commitment to help us enjoy penetrative sex; without having to plan the use of the 100mg dose of Viagra taken 60 minutes “before play can commence”, is amazing.
Currently when we are both deeply aroused and we have enjoyed highly erotic foreplay, an erection strong enough for me to both insert it into my wife and maintain rhythmic thrusting is possible. Such lovemaking is quite short-lived, but the joy it brings us both is deeply satisfying. Possibly on occasion my erections are greater than the sixty per cent we were told to expect prior to the operation.
As the desire to ‘cum’ is immensely strong, yet not possible whilst enjoying penetrative sex, my wife and I complete our lovemaking by hugging as I masturbate to attain a deep and highly frenzied ejaculation.
To fully realise my potential for a stiff, solid and enduring erection, it may yet come to the dreaded injection of Prostaglandin E1, also known as alprostadil, into the wall of my penis to help “Right-the-ship” so to speak. Understandably I am avoiding this medical procedure that my surgeon explained can cause not only severe headaches, but if ‘overdosed’, dangerously long periods of erection are endured and in no way enjoyed. 4 hours is quite common.
I am delighted to say in the last month I have, at last, regained my continence; major social challenge overcome! A tense, fraught, volatile incident at Barcelona Airport Passport Control, when I was ready to burst and in utter dire need of a ‘Loo’ to save incredible embarrassment for me, my wife and hundreds of passengers, is an awful memory I shall never forget. Nor will the police, staff and the hundreds of passengers present that fateful day at Barcelona Airport Passport Control.
Probably the worst experience has been the resulting mental health issues. Regaining physical strength and attaining PSA blood test results that indicate the cancer has been completely removed during the operation is obviously of paramount importance and to be celebrated with vigour!
However, the loathsome challenges of retaining full continence and overcoming erectile dysfunction as described above, took their toll, for both myself and my long-suffering wife. In a nutshell for long, arduous periods over the past three years I have not been ‘good company’. Short tempered, temperamental and often utterly obnoxious was the result of feeling totally inadequate with the loss of my male potency; even though I was ‘Gagging’ to make wild passionate love with my darling wife, and constantly concerned I was in reach of a ‘Loo’ at any given time.
The worst of this period was the violent arguments with my poor wife. One horrendous incident was so abusive, aggressive and disruptive that a person from the onlooking public quite correctly called the police, fearing that my wife would be physically assaulted by her crazed, maniac husband.
Yes, my work was affected. Now, although I appeared a happy, positive ‘Chappie’ whilst at work, I would be surreptitiously sending spiteful texts and making venomous mobile calls to my wife. Fortunately, my line Director; who had been through this journey with me, from diagnosis to near mental breakdown and was my one and only highly trusted confidante throughout, was a tower of strength. His camaraderie and mentoring always was exemplary. A masterclass in fact, of managing people who are undergoing unrelenting mental health issues.
Since the beginning of this year my madness; which for a period did cause my wife to become quite deranged too, has subsided. A calmer, more sanguine person has emerged from the car crash of life that all too often is a direct result of a man being diagnosed and treated for prostate cancer.
My lifestyle is far more balanced; my family get to see me now! I exercise five times a week for no less than 30 minutes and my eating and drinking is focused on maintaining a healthy body and clarity of thought.
I am undoubtedly more resilient than ever and seek every opportunity to share my hard-earned experiential learning with other men; and women, determined to help others be even luckier than I have been. You see, prostate cancer is not easy to detect. Unfortunately, in most cases symptoms only become apparent when the tumour has become incurable.
Lobbying for a screening programme is now one of my key objectives in life
Most of all, I revel in the fact I have been permitted to enjoy another trip around the Fun-Fair of life; the most precious gift a person could ever be bequeathed.
Especially a person who looks set to beat the predicted sixty per cent of his pre-operation erectile strength.
Elvin K. Box
Commencing his career as an apprentice carpenter and joiner, Elvin is now a Chartered Builder who holds an MBA with the Open University Business School (OUBS). An acclaimed international speaker and writer, Elvin’s engaging and inspirational approach to his work has brought him personnel invitations to perform for the likes of Oxford University and the International Criminal Court in The Hague.
Referred to as inspirational, motivational & highly engaging, Elvin’s unique story-teller communication style has come to prominence through his voluntary work as a Community Ambassador for the Movember Foundation. A survivor of prostate cancer; he was diagnosed in June 2016; he is a passionate advocate of improving the ‘Quality of Life’ for its victims. Hence Elvin undertakes numerous high-profile media assignments and corporate speaking events for the Movember Foundation.
You can donate on Elvin’s Movember page here
The proud son of a Nurse, unsurprisingly Elvin is pragmatic and totally candid when explaining his experience of a cancer that is infamous for wreaking havoc with a victim’s sexual health and pleasure. This article is probably his most revealing to date.
I would like to say a huge thank you to Elvin for sharing his very honest and revealing experience of regaining his sexual function and enjoying sexual intimacy and pleasure with his fabulous wife Jude. I contacted Elvin on twitter after reading his wonderful article in the Telegraph in November 2018 where he talked about the impact having prostate cancer has had upon his physical, mental and sexual wellbeing and his relationship.
At Jo Divine we frequently advise men, and their partners, who have had prostate cancer, struggling to regain their sexual function to enjoy sexual intimacy and pleasure yet have been little or advice about how they can regain their sex life which is why it has been so good to meet Elvin.
We have never met a man who is willing to be so honest about their sexual experience of prostate cancer yet Elvin has done this through a wide range of media platforms to raise awareness and educate not just men but their partners and healthcare professionals. He has helped and continues to help so many people and I am so grateful we connected via twitter and finally got to meet face to face earlier this year, one of the good aspects of social media within the world of cancer care and support.
I really hope those of you going through prostate cancer treament, are post treatment or living with prostate cancer will find this article helps you to talk about this intimate and often embarrassing topic with your partner, encourages you to seek medical advice and discover new ways to be intimate and enjoy sex with your partner or a new partner in the future.
My professional goal is to ensure that all healthcare professionals are educated to help them to talk about the sexual impact of cancer upon sexual function, intimacy, pleasure and relationships and offer simple practical advice, not leave people struggling to enjoy sex once treament has ended. Talking about sex should be a compulsory part of all cancer treament.
Knowing that you are not alone is so important so please do not struggle or give up on your sexual relationships, help and support is available.
Prostate UK have created leaflets for people who are LGBTQ+and have a dedicated group on their online forum for Gay, bisexual, MSM (men who have sex with men).
One of the positive benefits of twitter is that I have been able to connect with some amazing, inspirational people across the world, includng those who cancer. Gogs Gagnon asked if I would read his book about his experience of Prostate cancer, the honest and intimate impact it has had upon his physical and mental wellbeing and relationship with his lovely wife, explaining his treament in layman terms that people can understand and how one size doesn’t fit all, choosing the right treament for you is so important. I always enjoy books written by patient experts and this was no exception. As a former nurse I strongly believe the patient expert is the way forward in educating and informing other patients and healthcare professionals.
“Prostate Cancer Strikes: Navigating the Storm by Gogs Gagnon”, Granville Island Publishing Ltd
Movember UK : uk.movember.com
Prostate Cancer UK : https://prostatecanceruk.org/
Macmillan : https://www.macmillan.org.uk/
Orchid : https://orchid-cancer.org.uk/
Tackle Prostate Cancer : https://www.tackleprostate.org/
Chris’ Cancer Community : https://www.chris-cancercommunity.com/
College of Relationship and Sexual Therapists : https://www.cosrt.org.uk/
“Pelvic physiotherapists”: https://pelvicphysiotherapy.com/list-of-therapists/
British Association of Urological Surgeons : https://www.baus.org.uk/
British Association of Urology Nurses : http://www.baun.co.uk/
The Walnut Group : http://thewalnutgroup.co.uk