“My Voice” by Jase Edgar

Jase Edgar - 'Survivor'

My journey as a cancer patient:

“I am 99% sure that you have testicular cancer Jason!” Although not a 100% diagnosis, this was it. I was sat before a doctor in a small consulting room within my local hospital’ ER and listened to the words ‘Seminoma’ and ‘Testicular Cancer’, these words rang in my head for days and weeks to come and they still do now, over two years on as a cancer survivor.

3rd April 2008 is the day that will never be forgotten by my family, friends, my closest colleagues and of course, a day I will never forget (this was the day mentioned in my opening paragraph).

The word cancer took some getting used to. I feel privileged to be able to provide an insight into my journey towards and into survivorship and to tell what being a cancer survivor means to me.

My story started in early 2008, as the doctors tell me the tumour had been growing inside me for several months prior to any diagnosis taking place. My wife (now separated) and I had just decided that our marriage was over as things were not right. We were still living in the same house, with our young daughter, all in separate rooms, which could be described as ‘tense’. This as it was, was not a good time in my life, I was feeling pretty isolated and lonely, so if ever there was a bad time, what happened to me next was not good timing for sure.

Over the weeks that followed this split, I had been experiencing some sharp pain in my left testicle, but put this down to stress of things (work and my relationships). My left testicle had always been larger than my right one (which is natural), so I assumed that stress it was (although worth mentioning at this stage that my right testicle was un-descended in my early years and had to be corrected by an orchidopexy, i.e. to correct and place the testicle into the scrotum). It wasn’t until I was taking a bath one night, that I noticed my left testicle was as hard as a stone, not soft and natural like the right one. When I pressed into the left one to examine further, I felt a pain shoot through me and make me feel physically sick.

In March 2008, just a few weeks on, the pain worsened and continued to do so, so I went to see my General Practitioner (GP). I was more worried (as are many men) about him seeing my privates, clearly, this was not the case at all. He examined my testicles after I had told him all of my experiences over the last few weeks and what had been happening in my life. I sensed right away that he was not happy with what he had just felt and seen, he seemed very concerned with what he had seen, only 2000 cases of testicular cancer (TC) are diagnosed in the UK each year, so many GP’s never see one, this may have been his first TC diagnosis. He fast-tracked referred me to see a consultant urologist. This frightened me very much as was several weeks away and I was worried the cancer would invade the rest of my body. I was thinking a variety of irrational thoughts and even though an actual diagnosis had not been reached, I was thinking the unthinkable, was I going to die?

I never waited this length of time, I was in too much pain, too anxious and too frightened. I was trying to lean forward at my desk at work, to prepare for interviewing a new member of my team at the time and the pain was immense, as it was days before sat on my daughter’s bed reading her a bedtime story.

On the 3rd April 2008, I took myself to my local ER, after a short and scary wait (at this point from my doctors reaction, I knew and had convinced myself that I had cancer, but was it just in my testicle? Had it spread to the other testicle, was it anywhere else?) , I was led into a cubicle by a young doctor, only being 31 myself, he must have been about my age (my GP not too much older too). He examined me and did an ultrasound of my scrotum, all of which I could see on the screen and I could see the mass in my left testicle (my heart felt like it had stopped!), whilst I was pulling up my trousers, I saw the doctor talking to his colleague and they both looked at me with solemn faces, I overheard the one looking after me say, “It is a wake up call, this guy is our age!”, the young doctor came back to me and led me to a small room (I remember with no windows). It was in this room I heard the words in the opening paragraph of my story and even when he gave me some time in the room ‘ALONE’, the words just echoed over and over. I am 99% sure you have testicular cancer and it is highly likely the cancerous testicle will be removed ASAP. The doctor left the room for a few minutes to allow me to collect my thoughts and it was hard to feel any emotion at this point. I just felt that even though sat still on the examination bed, I was sinking and it felt like my heart had stopped for an eternity. I felt cold and in some sort of suspended animation. The doctor returned and was so kind and calming. I cannot thank him enough for this.

The next stop was the radiology department for a chest x-ray, why I asked? it was just to check that the cancer hadn’t spread to my lungs! This is standard practice, I learn for newly diagnosed testicular cancer patients. Waiting for the result was so hell and I was on my own, I felt so alone (knowing that even when I eventually got home, there was nobody there to hold me and tell me it was going to be ok), I had been smoking prior to this so was so worried now, no girlfriend or wife to hug. Thankfully, the same doctor advised me to go straight back to him and he gave me the results within 30 minutes. My lungs were clear….thank you I said to him, I could have hugged him tight, but was in so much pain down below. He advised me that my cancer was the most curable form and that the prognosis was very good for me, something I wish I could have listened more closely to and assured myself of this fact. As over the coming months the thought of the cancer spreading into secondary cancers led to me being so frightened (latterly in my survivorship I undertook a course of cancer related counselling, to aid me to think through the fact that I had had the disease, this I totally recommend).

I had cancer! me a 31 year, pretty healthy guy! I now had to tell, my parents, my brother, my ex-wife, my daughter, my friends and close colleagues. What were people going to think about me and how were they going to treat me? What happens to me now?

My thoughts were all over the place and I didn’t know what to do next, I felt, blackness, empty, cold and so isolated from everyone. I called my best friend Nic and asked him to let my boss know, also could he let, my ex know and could she let my parents know what was happening as I was too upset to tell them myself. I was too tired to choke back my tears. I then hung up and cried for what seemed like hours. Nic came to see me at hospital later that day as I had then been admitted for my operation (left sided orchidectomy). He advised my parents were coming later to visit and he left as they arrived, not long after a sequence of further tests, chats with nurses and doctors, it was decided that I would not be kept in and that my operation would be scheduled as soon as possible, due to bed space that day. Returning ‘home’ was terrifying.

I was off sick now from this day and the next 3 months proved to be the toughest of my life! My way of dealing with the waiting for the operation was to go out and party, i.e. trying to forget that I was seriously ill. The days being hungover, alone in the house, with nothing but the phone and laptop for company proved difficult, being hungover only worsened my pain and my mental state of mind. My parents were amazing, keeping an eye on me and my mum in particular (as dad was at work in the day) was fantastic, visiting me almost daily, these visits were a true lifeline to me.

It was whilst on my own that I started having dark thoughts about, what if it wasn’t safe, clinically, for me to wait for the operation and the cancer had spread, what if I die in my thirties? My specialist cancer nurse Julia was fantastic and I would call her for advice and support, this was great, but within moments of hanging up the phone, I was worrying again – even though living with my ex, she would give me no emotional support or even a hug whilst sat on the kitchen floor crying.

I went on the internet and came across a guy called Philly Morris, founder of checkemlads.com and Nick O’Hara Smith (Testosterone Deficiency Centre). I have to credit these guys with making me see sense of many of my thoughts and physical symptoms, I realised more than anything that I was not alone. Talking online to fellow cancer patients and those that had survived, made me realise, Jase, there is hope!

My journey continued along the following road: Left sided orchidectomy and right sided biopsy of right testicle 14th April 2008 (accompanied by my mum and her friend, this was the scariest time of my life), CT scan to check for spreading 18th April 2008, first appointment with my oncologist 2nd May 2008, EDTA test at the oncology centre 15th May 2008 (to determine level of chemo drug to be administered), appointment with my urologist to discuss the outcome of my operation 28th May 2008 (follow-up), Carboplatin (Chemotherapy) administered at oncology centre 4th June 2008, post chemo check-ups 6th June 2008 & 18th July 2008.

It is worth highlighting that although the surgery and the treatment scared me enormously, prior to my chemotherapy, I undertook a number of sperm analysis tests to test if any of my sperm were ‘viable’ to freeze for me to use if the chemotherapy made me infertile. After three tests it was proven that I am no longer able to father a child, this was such a hard thing for me to digest, I guess the difficulty of processing this was overshadowed by the fact that I was dealing with cancer. A coping mechanism was knowing I had a daughter who I loved dearly, this still causes upset in my survivorship, particularly when I see parents with their babies, as I want to have children with my partner now.

Since my operation, I experienced lots of pain in my remaining testicle, so visited my oncology team, who arranged an ultrasound (in fact quite a few) to check that the pain was nothing sinister, all was ok!

Worried about my appearance cosmetically and also it was thought that the balance provided by a prosthesis would aid the pain in my right testicle, (20th October 2008) I had a left side prosthetic testicle implanted. This has helped but does from time to time cause pain and discomfort, where the prosthesis is stitched to my scrotum and is hard unlike a natural testicle. I have also been keeping a close eye on my testosterone levels as was concerned that with only one testicle remaining, this would be impacted (I was getting mood swings and hot flushes too), this monitoring caused anxiety, but thankfully has been ‘normal’ each time tested. I strongly recommend this to men who have had one or both testicles removed, as low testosterone can cause many issues and really affect your quality of life (mentally and physically).

My journey had begun in 2008, the next stages were to have my surgery and chemotherapy and to this day I am under routine monitoring on a 5 year surveillence plan, this is reassuring, but the further away my appointments get, i.e. the distance between them, the better. I had my last CT scan in August (’10) and the results were clear and my next review is in December 2010, this is good news to me as the distance in time since the last one has increased. The standard of care and the support from people has been amazing, I owe my life to them all and will always do my best to help them deliver this care into the future in an environment that is pleasant for the patients and the staff.

More on the support I received, to name just some of those who helped me through:

  • Philly Morris & Nick O’Hara Smith, both testicular cancer survivors, fundraisers and awareness campaigners and massively supportive to me in my times of anxiety, like should I be experiencing pain this long after my operation/biopsy, answers to all of my what if? scenarios and most of all just being there to offer supportive advice
  • My Specialist Germ Cell Nurse – Julia Hardwick and latterly Sue Brand and my oncology team, too many wonderful people to mention
  • My GP who was so supportive and warm throughout my journey
  • Those who shared my life with me during this journey, partners Angel and Lisa, providing often a shoulder to cry on, a pair of ears to listen to me and someone to hold and love, I will never forget this and offer particular thanks and gratitude to Lisa who helped me through the worst of things and continues to support me through occasional dark days now
  • My boss when I was due back to work, Paul, for like many of the others who helped me, brought me back into the world of work and allowed me to see I can still contribute and feel worthy, even after this major illness and lacking in my normal plentiful confidence
  • My friends and my wonderful family – for everything, especially my mum, who has been my rock throughout everything, waiting with me on my pre-operative waits, sitting with me waiting for appointments and keeping me company at home on days where I wanted to do nothing more than cry and worry that the cancer would come back

My survival as a …

  • Dad – proud to be a father and sad to have undertaken a number of tests that confirm I am no longer able to father children, due to immotile sperm. Still to this day breaks my heart, but makes me love my daughter even more and take each day I have with her as a special, watching her develop into a wonderful girl and little lady. Something the word cancer scared me into thinking, I would never see. I savour being in her life, watching her play, listening to her read, listening to her teacher praising her progress, reading her most recent school report, I am so very proud of her in every way
  • Although I have struggled at points in my journey, I survived and I love now more than ever, being a son, a brother, a friend, a partner of several years to Lisa (who supported me so much over the time we have been together and I thank her for this, we are now stronger and more in love than ever before – I love you so much Lisa)
  • My survival has brought me so much closer to those who love me and those whom I love
  • I do struggle from time to time and do cast my mind back when I hear the word cancer, it does still hurt me to think about the journey I went through and how alone I was at some points of this journey, but what pulls me out of this is that I never lost hope and always had the strength to fight!

What does survival mean to me?

  • A second chance and the ability to provide, support, advice and most of all hope to those with cancer, it is my second chance to do things that really do make a difference:
    • Testicular cancer awareness campaigning (prevention is cure), appearing on local radio stations as an ambassador (as below) and whilst talking of fundraising, highlighting the importance of men checking their testicles and indeed, ladies and men checking their breasts
    • Fundraising for cancer related charities and acting as an ambassador for a local charity here in Bristol, working on a refurbishment project at the oncology hospital I was treated at. As a fundraiser, organising a swimathon event with 30 colleagues. This involved swimming a mile or kilometre to raise funds for this appeal. I have just put together a team of cyclists to participate in a 250 mile cycle tour over high road terrain in the UK.
    • Being a local voluntary Livestrong UK leader, raising the profile of Livestrong in the UK and the importance of bringing the cancer community together in the global and local fight against this disease.
    • Involvement with patient support groups for testicular cancer patients and I am hoping soon to become a buddy for patients with testicular cancer.
    • Being a public NHS Foundation Trust governor on the board of governors for the trust that owns and runs many of the hospitals I was treated in, this not only opened my eyes but allowed me to be part of decisions affecting the future of these hospitals.
  • Most of all, surviving cancer means to me that we can do it and I have done it, I love life and this gift, this second chance is one I am going to take by the horns and just do it!!!!

Thanks for reading my story. Always stay strong and know there are others out there willing to listen and share their experiences. Never give up and always keep hope in your heart.

Jason Edgar, Testicular cancer survivor since 2008

Bristol (UK)