“Nothing is impossible, you just haven’t done it yet. Dreams are hard to achieve, otherwise they wouldn’t be a dream. In the darkest of hours when all seems hopeless, that’s when dreams are made, more often than not in the face of adversity during those unsung hours. Never give up on those dreams as they inspire you to achieve what seems impossible.”
Hi, let me introduce myself, my name is Wayne Greenwell, I’m 32 and I live in the City of Sunderland, England. I am writing this letter as an insight into how I felt and reacted whilst being diagnosed and treated with cancer in the great Freeman Hospital.
The Freeman really is second to none in expertise, care, and treatment in my opinion.
In a way I want to strip back and expose my emotions that I had and still have to be honest when I was diagnosed back in June 2012.
I would also like to stress to you that I’m not an expert on cancer or an academic in this field or medically trained, but what I experienced and write about in this open letter may not be scientific, but it is my story, my feelings, my emotions that can’t be forecasted no matter how advanced we are in medicine due to one simple fact, we are individuals within society and each to their own will react differently.
What follows in my words is factual and an honest account from me to you by ways of lessons learned and experiences as I underwent treatment not unlike possibly what you are now; I was or still am in the situation that you are facing and I hope that what follows helps you to get through what must feel like the darkest of times by knowing you are not alone.
Please imagine being in my shoes and see first hand how I experienced and still am experiencing being a cancer patient; I would like to tell my story, even though just writing this is hard for me, because I am a mans man, I hope I come across as being totally open and transparent for the first time in my life when talking about how I feel.
It’s the height of summer 2012 and we are in the middle of a heat wave – yes, a heat wave in the UK! You have your whole life ahead of you as and then you get told you have “cancer” and it’s “testicular”. Not only do you have cancer but also it’s spread throughout your body to your bowels, lymph nodes’, lungs, back and in three separate spots in my brain. Hearing this news you might think that my whole world would cave in around me, well it never, in fact it had the opposite affect and I would like to tell you why.
I had been unwell for a while; I first noticed blood in my semen the day before my 30th birthday and like a typical man I never thought much of it, it was a sort of ignorance that most men or people can relate to by having a sense of invincibility in the face of adversity during your youth. Nevertheless I made an appointment that same day with my local GP and I honestly thought it would be something trivial like an infection or something along those lines as I sat in the waiting room.
I got called into the doctors surgery, explained my condition and he said “I think you’ve strained your testicle, I’m going to give you some anti inflammatory tablets and then take some blood tests”. I responded by telling him “I don’t think I’ve strained my balls but ok”, then I left the surgery with a prescription in my hand and went to the nurse’s waiting room to have some bloods taken. Once I was called in and the needle was prepped I asked, “so what are you checking me for?” To my surprise she said “prostate cancer”, I responded, “how do you know?”, she said “its the colour of the stickers for the tubes of blood, each colour is for a separate test”.
Like I said, I was a little taken back by the news that it was cancer they were checking for as I thought this was a degenerate disease that took hold of older people, 60 plus etc… I thought nothing of it and went home that day as if nothing had happened.
Whilst I was younger, I was in and around cancer sufferers in my family. My gran, Jess and also my grandad developed cancer whilst I was in my early 20s; this exposure planted a mental block in my head when it came to listening to the ambient awareness of the symptoms and understanding the disease. Some might say its stupid but I thought if you think about it, then it becomes a reality and it will get you. So, me being me, I pushed it aside in my mind and blocked out even saying the word.
My gran, Jess, developed women’s cancer as I call it (or cervical cancer as the medical professionals’ call it) and my grandad, unfortunately, developed it all over his body. This affected me in a big way because it scared me and I don’t scare easy because I’m British.
Just the exposure to the disease affected me when I was diagnosed, not straight away but when I was left alone to dwell on my thoughts, when my mind started running scenarios of what could be. This was a mistake and with hindsight I can reflect back now and say that, but in the moment it consumed my confidence and optimism. I never showed it to those closest to me because I saw it as a weakness, I don’t know if this was the right thing to do and I will never know what would have been if I had exposed my emotions to my loved ones. I stand by my decision and believe it was the right way, for me, to react; please don’t use this as guidance as you will need to find your own unique persona to portray what makes you feel comfortable and mentally stronger.
If I could say this face-to-face, I would say “don’t expect to be me, and think how I reacted but embrace your feelings and start from there, do your thing”.
Don’t listen to anyone else on how you should react, just be yourself and react in the way that your instincts tell you to. Don’t waste emotional energy trying to be someone or something that you’re not. Just accept that this is happening and do what feels natural to you as a person. Draw inspiration from around you but always be that person, “YOU“, always be you!
Before I was diagnosed, I hit rock bottom, this was because I went from an active outgoing person, to being restricted to a bed. I can tell you that I was diagnosed late, potentially too late for me. I remember my consultant telling me I had 2 days to live if I wasn’t admitted to hospital and you know what, I was wishing it would be all over because of the pain I was in.
But with the diagnosis, I then realised what it was like to be alone, not alone in the sense of surroundings; my family and friends were there as you would expect, but alone in a battle against something that you can’t see but only feel and I mean feel physically in terms of pain. I was in so much pain that I was ready to give up, ready to close my eyes and not wake again.
To be alive and looking forward to life, then wishing it was all over is a feeling I can only describe as being hollow and nothing but absolute desperation.
All I wished for was that the pain would go away, I was so fixated and unable to leave that moment due to the situation that dictated my life at that point, but and it’s a big but in that moment of total hopelessness, I was consulted by my Doctor on my situation and what the next steps would be to try and cure me. With this I was pleased, someone gave me a plan to start getting mended or fixed physically.
From that moment I had a different perspective on the situation and started changing my mindset thinking…..
“Right my consultant (JF*) is giving me an option, I need to get inspired, come on Wayne this is not over yet“
I’m not saying it was an easy path I was forced down, but it did inspire me because another person had offered me an option to get better.
It was something to concentrate on and focus my mind; a sort of thing to look forward to and something to fight; a challenge to rise up to. Please take note; I was advised that I had little chance of being cured.
– And unbeknownst to me at the time, as I now reflect on my emotional responses that I had then, I still remember that I embraced this news and thought –
“Right, lets see what is what and what will be, I can beat this by not thinking about it and by getting on with my life outside this environment‘’
I’m not a person who likes floating through life as I enjoy challenges and trust me please, I’m not saying this as a cliché or using challenge as some buzz word from a book I have read, its how I was feeling and still do. I challenge myself to understand my limits and to test my character when the chips are down. In my mind this is living – as pain and strain make the beer at the end of the challenge so much more enjoyable, ha ha.
I have climbed all of the peaks in the Lake District alone, I have done the 3 Peaks alone, I climbed Kilimanjaro in Africa (20,000 ft.) alone and I enjoy a physical challenge and don’t mind being alone.
(You are starting to see a pattern, I’m a loner when it comes to a challenge, and looking back I was unsure why I always chose the option to do adverse challenges on my own. But reflecting now, I can say it’s because I wanted to test myself, to understand my limit and to understand me).
Being alone makes you motivate yourself, to understand how you react when you don’t want to go on anymore, when it’s easier to give up.
In those dark hours, those unsung hours, you either draw on self-motivation and realize your dreams and goals or, you walk away and give up. Well I have never walked away from anything in my life and I wasn’t about to start doing so now when I was diagnosed.
Walking away for me was not an option, if it can be done I will make it happen, maybe its me being competitive, or maybe its how we are all engineered but need to realize our opportunity.
We are born who we are and live our lives because of the decisions we all make. That decision-making process we make consciously or sub consciously is what I think is human instinct. But that’s just my opinion.
(We have no excuses neglecting the opportunity of life as humanity itself allows us to realize opportunities and inspires us to endless possibilities if we just dream)
If I’m honest I never really thought about my mindset at the time as my life was consumed.
(Maybe “consumed” is a hard word to use)
When I was diagnosed I was with my close friends and family, they were all passing on their sympathy at the time because I had cancer, I could see the horror and sorrow in their eyes and it made me upset, angry, vulnerable and feeling guilty for being poorly.
This at the time was not what I wanted, all I wanted was to be treated normally and ignore the reality of the position I was in.
To want this expression from those closest to me might seem strange from the outside, but it was everything I wished for, people expressing despair to me through body language and emotions, well it magnified the situation I was in and again, it scared me.
This expression of emotion gave reality to the situation and it did affect my mindset. To be without your ability to take on Cancer, as who you are, the added pressure or feeling like you are a victim and in a hopeless situation, well, it makes you more vulnerable to lose focus on who you are and to keep being positive when all else seems impossible. I think that is normal in the circumstances.
Being a Cancer sufferer, in my opinion, makes people reflect on their life, reminisce on lost opportunities, dream about what if and could have been if I did that instead ………
Well, I thought of nothing but wanting to get better, back to be who “I am”, nothing more and nothing less, just to be me again and carry on my life as I was.
We all have our routines in life, our little ways and little wins that make us happy. They might not be to other peoples liking or tastes, but the world would be a shadow of the place it is if everyone was generic. Society is what it is because it’s made up with individuals and we all must express our individuality.
I for one, when I was going through chemotherapy, tried to be the same person, I carried on doing what I had been doing before I was taken ill (within reason). I carried on with my life as normal as possible, some might say, I was not acknowledging the reality of the situation, but I disagree, I see it as not being defeated by the position I was put in.
I would like to express that I am human, I did have doubts on whether I would get though this illness and I also embraced the reality that I might not.
This realistic possibility can’t be described in words. It’s a feeling that you have when dying throughout your body; it is a crippling emotion if you let it but like any emotion it can change if you want it to. If you knuckle down and fight it head on, let the tears flow, embrace the fact you still feel emotion. This is what I BELEIVE IS THE ESSENCE OF BEING ALIVE.
When I was released from hospital after a course of treatment I tried to make more memories for those times that I needed them. When I was in hospital getting treated I would use these memories to inspire me & help spur me on; to want and make more memories or moments, to look forward and not think about the hear and now of reality. When I was getting treated in hospital, I was in for 5 nights every 21 days, 1 week of chemo that destroyed the cancer cells along with my Red and White cells. Every 2 weeks your Red and White cells naturally regenerate, so chemo was targeted after they regenerated for me in the 3rd week, hence every 14 days I had a new course of chemo that finished every 21 days, so a 3 week cycle.
I hated going into hospital even though it was saving my life, I had anxiety about being locked in hospital for a week. I never feared the place but had a strange feeling, its hard to put into words, I hated being there but also wanted to be there. (Work that out yourself because I’m still confused).
The staff and nurses have a job to do like most of us in our normal lives, but the staff who worked on my ward in the Freeman, I believe went beyond the call of duty to make patients relaxed in the circumstance and feel at home.
Patients go though the trauma and emotion because its put on them, but the staff who care for those patients in good times and hard, well they are “extraordinary people working in extraordinary circumstances“ and I for one will never forget the care, conversations, laughs, professionalism and compassion they showed me and the other patients.
To work in those conditions on a daily basis takes real courage and humanity. Thank you all Ward 34.
As my treatment came to an end my tumor markers came down from a million to 164 after 6 cycles of chemo, not all the Cancer had gone but, it was a whole lot better than when I first got admitted. The night I was admitted I was rushed from Sunderland Hospital to the Freeman. I remember vaguely a nurse asking my name and I mumbled blllllarrrrrr. I also remember she asked the year and what sex I was. I said I don’t know on both questions alarmingly ha-ha.
That’s where my life changed. The next morning, when the morphine wore off, I had a strange feeling that others closest to me would find that me dying was harder than dying myself because of the emotional side effects. Once I’m gone, I’m gone and those closest to me will have the pain of me gone and then live with the effects of the disease for the rest of their life.
This is a reality in my mind and my feelings that are not influenced by opinion; it is a description of my reality.
For me, I will always say and believe that Cancer affects the person with the disease physically, but that the individual’s family deals with the disease and its effects for a lifetime.
I was thinking I would leave them with heartbreak and sorrow and sad times, I was upset with this and went into a shell, I became an emotional recluse so as not to upset those around me and put more pressure on their emotions.
(Please remember this is my account of events and my emotions at the time, this is not advise on what to actually do, you must decide what to do for yourself as that is what will help you, what I did helped me emotionally and that’s all that counts given the circumstances).
After my 3rd – 4th – 5th and 6th cycle of Chemotherapy my tumor markers continued to fall, 160 to 60 – to 30 – to 15. All the way to < 1. When I was told there was no trace of Cancer in my blood tests, I reacted in a way you might think was strange from the outside, I felt nothing! No joy, no relief, no happiness. I was in a place I created mentally to protect myself from all emotion. Like I said earlier I was in a shell, a sort of state of emotionless animation. Reflecting back now I am pleased and excited that I have kicked Cancer in the ass but I also don’t let myself get too carried away incase it comes back. I do this in my head so I don’t fall as far emotionally if diagnosed again, in a way I am making it more manageable to take a fall, this might be the wrong thing to do but who cares, its my way of dealing with my diagnosis and it is working.
Nevertheless I understand I am still suffering from retreating to my shell as I find it hard to be emotional. Maybe this new me is who I am, maybe I will again change if the circumstances so dictate in my life and I wouldn’t want it any other way.
For the moment I am content with this reality and I realise the situation I was in was life changing. It may or may not have changed me but I am happy to know that tomorrow is a new day and I might feel differently inside. “Live for the day” so to speak, this emotion and uncertainty is living in my opinion, being part of the unknown and not understanding your future.
Since my tumor markers hit <1, I have had one of my testicles removed and a cluster of lymph nodes in my abdomen taken out. The scars and effects will be with me for life but they are who I am now and still to this day; I am insecure about the scars, they are big and ugly (A bit like me in a nut shell ha-ha). Another side effect from my operation is I can’t ejaculate anymore.
For a man like me this was a huge knock in self-confidence and self esteem. Some people think I should be a wreck; Medical Professionals keep telling or insinuating I should be a wreck mentally and should/need to have help. I find this hard to understand, like I said earlier, each person is an individual and each to their own because we are not all the same and react differently, its instinctive the way we react in my opinion.
I wont deny I hit hard times, dark moments, but I never ever thought I couldn’t deal with it myself. Instead I looked at it as a challenge, to get better mentally/physically/emotionally. I will explain my process and how my mind worked as best I can in the following……
I was suffering (Mentally) to realise myself, to realise why we are here on earth, in existence. In my head I thought what is the point in life itself if this is all it has to offer (hurt, pain, suffering). I slipped deeper and deeper into my shell and hid my emotions so as not to let people see me weak, affected by my illness. I thought this was the manly thing to do at the time. I thought to myself, be strong and be a Man, stiff upper lip, good old English values.
I’m not sure if this was the right thing to do, but I never broke down, I never cried or worried about anything. I was emotionally dead to everyone and everything and this was the catalyst to my girlfriend and me splitting as I was an emotional recluse not capable of showing my true feelings.
The dilemma I have now is, “IS THIS THE NEW ME?“. I don’t know who I am right now but I want to find out and God willing I will have the time to do this.
Please do not take my experience and thought process as a way to react to your condition, react in your own way. Learn the lessons from my experience and use it to help your own battle. My only wish is to inform how I reacted in your situation, draw experience from my feelings as nobody can foresee what you will go through, but I hope this letter helps you prepare in your own way.
All I know is that I’m alive and I’m still able to make mistakes. At the end of the day, life is not living without the good times and the bad, they are what make us anticipate tomorrow and live in the moment of the emotions, we have to embrace every moment possible. (Especially if you’re like a Sunderland AFC fan, and me as moments of joy are hard to come by ha ha).
Thanks in advance for you reading my letter and I wish you all the best in your treatment.
From my heart, please contact me if you want to talk, let your emotions rule you with someone who understands through experience what your feeling.
If needed, I will also meet you for a chat face to face, use my shoulder to lean on as I understand what your going through.
I’m at your disposal if needed and I would also like to offer an open invitation to the family and friends of Cancer fighters who would like to ask questions, or even just have a chat to help you stay strong so you can support your loved one.
Wayne Greenwell
