Three words that almost sound like an eerie title out of a Hollywood film, and at times it could be just that. During January 2012, as I sat in my local doctors' surgery waiting room, waiting for news about a recent MRI scan, unbeknown to me, I was about to receive devastating news from my doctor of the worst kind, 'Cancer. This indiscriminate disease cares little for class, creed, or colour. Its patients seem to be everywhere. I am quite sure, that many of us have waited in a doctors' surgery or hospital A&E waiting room, at some point in our lifetime. However, that experience is intensified for those of us with, either a life-threatening illness such as cancer which is often distressing, frustrating, or isolating for those of us, simply waiting for confirmation of a diagnosis or condition. 'Mind-blowing' is not it. Socially a waiting room is like a stormy sea it can be stormy with, hidden sandbars and just a few safe inlets. People are vulnerable raw, scared, and downright miserable. And they will react in different ways, whilst they sit and wait. Some want connections, others emphatically do not.
As I wondered to myself, how do you navigate these social shoals without ending up shipwrecked? I have transitioned from treatment to survivorship my senses have become more alert, and perceptive to my surroundings and those within it. When you are a cancer patient, you do an awful amount of waiting for tests, for check-ups, for procedures, for infusions. And every time you show up for any of these things you find yourself in a waiting room.
As I sit with my right leg nervously shaking, and my eyes wandering all over the waiting room, I realise many are doing the same, and in many cases, it's clear to see who the patient is and who the carer is. My bottom hurts, due to the hard seats, my eyes sting as I squint to try and see through the bad lighting, and bad decor. While I believe aesthetics are important; I do believe that hospitals and surgeries need to re-examine the functionality of waiting rooms and schedules. I reflect, are they running on-time or is there a long wait. I see waiting rooms serve as a placeholder in preparation for a scheduled appointment or procedure. Patients are negatively impacted upon emotionally by seeing other patients who are ill (perhaps far more ill, than they are personally) in addition to the wait itself.
For over 8-years now, I have visited an array of waiting rooms, doctors surgeries, hospital A&E's and consultation rooms. All of these in regards to Cancer Treatment and see myself as an expert in 'waiting rooms', and let me assure you in this modern day and age it's still a very unsightly and uncomfortable place to be.
Being an ambassador for Cancer Research UK, I have seen the great strides being made to improve patient care and patient satisfaction scores. Surveys show that patient waiting rooms are influencers of patient satisfaction or dissatisfaction, but hospital management seems to be moving too slowly to achieve this end goal. Waiting, especially at a cancer treatment centre, adds additional anxiety to an already stressful situation. I have cancer, that is a fact, but what is not known is if my PSA has remained at zero or scarily moved up a notch. I would have attended the hospital the day before for my actual blood test, once again going through the process of living in the waiting room, this time in Haematology. I often ask myself the question? what if waiting rooms were to be transformed into patient engagement spaces. What if when we checked in for our appointments, the hospital provided us with an app on our Smartphone to keep us updated with approximate waiting time? What if I became politically correct and renamed it 'patient engagement time'? What if the patients were given a selection of moderated activities to partake in until our appointment? A lot of what if's however, anything is better than the dam monotony, the nervy wait affecting our mental process of thought. It is here that I try to focus on the healing procedures because the moment is at hand where newer results are about to be revealed and my thoughts rest on, is the medication still working? and not about the actual sickness itself, that would come after the results are obtained.
For me I find waiting to be a negative activity, it is boring and physiologically distressing. I have seen overcrowding in waiting rooms, having a negative, emotional impact on cancer patients. Give me constructive alternatives whilst waiting, such as the provision of music, a library or shelves with books and magazines, TV, or the ability to leave waiting rooms, facilitated by offering a beeper. Instant Messaging could also be offered, as well as providing comfortable chairs to enhance patients' comfort during long waiting periods.
For some, solace in a chapel for praying or a quiet moment to mull over things something is better than nothing to ensure that the physical environment avoids a "sick person's atmosphere." I'm not much of a talker in a waiting room, I'm more the quiet type, an observer of others but, I have heard some amazing conversations nonetheless, however, confidentiality precludes me from divulging, but the consistent argument is the moaning about the clinic's timekeeping. The one thing we as patients detest is waiting and often, we feel that doctors do not value our time. Though on the flip side we as patients, cause delays by being tardy or bringing up concerning medical issues at the end of our appointment ("oh by the way doctor, I had severe chest pains all morning and shortness of breath"). Whatever the reason, hundreds of patients across the UK are spending unnecessary hours in waiting rooms daily.
The waiting room is void of love, human interaction and social engineering, just observe body languages and interactions the next time you sit in a waiting room. Does the fellow patient make eye contact with strangers? Or do they look down or only at the person who they are with? If it is the latter, it is probably best you keep your thoughts to yourself, along with your distance. Sometimes an interaction in a waiting room is what would never have happened without that waiting room interaction. There are so many who are undecided about the wealth of cancer issues, such as enrolling in a clinical trials program.
I fall into the category of not wanting to talk about my condition even after 8-years, however, change those circumstances i.e. my surroundings to a more comfortable and appealing room, and I will chat for Britain. Today as I sit here in the Cancer treatment centre waiting to see my oncologist, my mind reflects on what I see around me. Issues with waiting rooms should be tackled because of the emotional implications. In my mind, the patient waiting room is a stagnant concept, that has not evolved much since what seems, its Victorian inception.
It has been a very long, manic and hectic eight years since being diagnosed. From a health perspective, I have had my ups and downs, like anyone else. In my case, advanced metastatic prostate cancer, which is a life-threatening disease. Like some, I have posted some of my woes, lows, and highs on social-media groups within the likes of Facebook in a bid to help others.
But this chapter isn't about me. It is about my wife, Grace, my caregiver. My wife is a highly intelligent, quiet and beautiful woman. She greets everyone with a smile and is extremely polite. However, do not mistake her demeanour, for there is under all of this a lioness, protective of her cubs. She is the person that interacts with me daily, subsequently having to deal with me when I am at my worst. When my confidence is at rock bottom and my frustrations are off the Richter scale. When the false smile that I have painted on for the rest of the world leaves my face, she becomes the unintended target of an abrupt mood swing. I do try to isolate myself when I feel that moment coming on, but sometimes I fail miserably. When we are supposed to have an entertaining evening out, I am excusably tired. But she is unsure of which type of tired – the ‘long day at work tired,' the ‘physical exertion tired,' or the ‘cancer fatigue tired'.
She is the one left to watch TV by herself because I have gone to bed early. Again! I wish I could have stayed up a little later, but I was completely exhausted. Again, I meant to ask her about her day – and listen empathetically – but I forgot. Again, again and again, it continues. As cancer patients, we become very selfish when our entire focus turns inward to shut out the rest of the world. We also do this to deny feelings we can't deal with or examine why our bodies have betrayed us; tunnel vision then becomes the result. At the initial outset, I did not share with my wife my feelings of grief, anxiety and being overwhelmed because I thought it would be adding to the misery. But when I did, I found out that we shared many of the same feelings and it opened my eyes to how deeply she cared for me.
So far on this journey, I have taken pride in the fact that I have not had to give up any of my daily activities. Working, walking or family time, I can and still do them all (well, sort of ) but it comes at a bigger cost each time, and requires much more effort and recovery time on my part than it used to. And once again she winds up paying a lot of that cost. I know I need to make some adjustments on that and I do try; I try my utmost, honest I do. So let me be crystal clear. Grace, I love you with all my heart and cherish our life together. I could not make this journey without you by my side, and I sincerely apologise for those times when I seemed to take it for granted. I am looking forward to our cruise holiday over the forthcoming months.
For a while in my journey, the desire to take the wrong road registered in my head, but in the end, I listened to her advice and took the right road. This ultimately made all the difference not only to my outcome but to our relationship. I am a realist. I have no vision of changing the entire world by myself, hence the need to listen to the invaluable advice that is given to me. Throughout, she has prepared the right foods and encouraged me to stay in some sort of physical shape as best as I can. Often, she would revert to her scholarly remarks. She would say that I must be both physically and mentally prepared for the road ahead. She would often refer to the concept of ‘a sound body and a sound mind'. She would say a strong body would give me confidence, but it would mean nothing without a strong mind. It was her urging that led me to the point where I despised alcohol.
Alcohol and strong drugs do not mix; having witnessed it personally, I can attest to that fact. I no longer wanted anything to do with that which altered my conscious state. I wanted nothing in my body's system that made me less prepared to deal with what was going on around me daily. Grace was my happiness; being with her brought a smile to my face. I had the best of all worlds in her. She is loving, strong and knowledgeable about the medical world. She has a sincere interest in seeing my mission of remission evolve, not because I am a dad, the head of the family, but because she truly loves me. She sees in me the strength needed to face the task at hand, the strength to stand up to this disease! I would often stare into her eyes and put one arm around her and run my other hand through her hair. I could tell she worried that I might not make it through, as I would often grimace in obvious discomfort from the pain that the cancer was causing.
On many cold winter evenings, we would cuddle up together and kiss and I would whisper into her ear, ‘Baby, I'm going to fight and beat this disease, don't you worry now.' I am thankful for the woman I know as my wife, for in times of sickness and dire situations, we have been there for each other. Upon my cancer diagnosis and journey to date, she has kept me going when I wanted to quit and give in.
She has paid attention to every aspect of my physical and mental wellbeing, often surveying me to ensure I am still physically whole, for she has already taken time out to ensure I am spiritually sound. She always ensures I keep up the fight because she knows that a broken man would mean a broken family and that is not happening whilst she has breath in her body. We found each other in our later years in life and helped to build each other, and over the years we had become one in the body. Divorce or separation was not in our vocabulary. It was not our way, though some would wish to break down that which was strong and good and see us fall apart. However, our very union was dependent on our ability to see past these façades. There could never be a parting as we would let no one or nothing divide us, not even cancer. Often I have thought we had missed our vocation as marriage guidance councillors. We have never needed psychologists to sit down with us and work things out. That is not to say ours is a perfect marriage, because it is not. What it is comprised of, though, is honesty, openness, trust, friendship and love. This was more evident when I was hospitalised when her every visit I yearned for. Around me, as I lay very ill, were those even sicker than I. Some we're dying and I felt myself slipping into their abyss.
Then my angel would turn up to save me and brighten up my day and so it continued until discharge date. My partner has never portrayed to be the acts of someone ‘not being there' for me, nor being selfish and delegating duties to others. She has always said that all she wants to do is be there for me. The bottom line is that she is truly an amazing woman!
In retrospect, I tip my hat to all of you who are caregivers. God bless each of you who have set your life apart to take care of the many of us who cannot care for ourselves? I recall, in the first year of my diagnosis, going from being a very active male with an active partner to almost an invalid, pigeon-stepping male unable to walk short distances and crippled with pain… My wife, who had been an active part of my life before, now had to deal with my emotional transformation to that of a cancer patient. Accepting help from her was extremely hard as I still tried to do things for myself, for I had always been the rock in the family; now I was a mere pebble. As time progressed, though, I was ever so mindful that she could end up with health problems of her own, making it physically and emotionally harder for her to take care of me further.
On reflection, I do believe that she took too much on to herself, although accepting help from others wasn't always easy. We received lots of support, and some of it came from people we expected it from. But a lot came from those we didn't know very well. And others, whom we did know well, stayed away. We wondered on many occasions why some close family members wouldn't offer to help us as they were well aware of what we were dealing with. You just never know with people. So the tendency to just get on with it became the ritual. Through our meaningful conversations, I know we both felt resentment and stress building up within us over the years. But as time progressed, we both learned to just let it go. It wasn't worth the energy expended on it.
Fortunately for me, I have a partner who fully understands my prostate cancer medical situation, as her father had succumbed to the disease. Thus, I always felt confident that she was in control. It was hard on many occasions to find the positives, as we journeyed through, but I constantly thanked my wife for all she has done and continues to do. After all, a simple thank you and thoughtful gesture at times made her see how grateful I am as we continue down the feel-good-factor road. We firmly believe that we have been given the chance to build on and strengthen our relationship as a result. This doesn't mean that caring for me is easy or stress-free. But finding meaning in caring for someone can make it easier to manage.
"Don't give up when dark times come. The more storms you face in life,
The stronger you'll be. Hold on. Your greater is coming."
As human beings sooner or later life will throw its curve balls at us, as well as hurdles to the point where we exasperate ourselves trying to overcome them. These, unexpected set of circumstances tend to remind us to always expect the unexpected life. However, in my mind a Prostate Cancer, Post Specific Antigen (PSA) check is ten times worse, It hammers away at your mind daily, it claws at your energy and finally, it reduces your resistance to that of a fully deflated tyre only to be inflated by the good news of a negative PSA rise. Let me clarify what is meant by PSA and why it is so vitally important.
"The Prostate-Specific Antigen (PSA) test measures the amount of prostate-specific antigen (PSA) in your blood. PSA is a protein produced by regular cells in the prostate and also by prostate cancer cells. It is normal for all men to have a small amount of PSA in their blood, and this amount rises as you get older. A raised PSA level may suggest you have a problem with your prostate, but not necessarily that you have cancer.”
The following figures are only a rough guide to ‘normal’ PSA levels, depending on your age, a ‘normal’ PSA level is less than:
• 3 ng/ml for men ages 50-59
• 4 ng/ml for men ages 60-69
• 5 ng/ml for men ages 70 and over"
During the first three years of my treatment, I was subjected to a PSA check on a monthly basis. Subsequently, this was changed to every eight weeks. However, lengthening the time process for checks did nothing to change the emotional trauma which built up within me.
For me, my inner emotions were ignited like a match to a slow-burning fuse and then diffused at the very last moment as I approached and came through each of my PSA checks. You see if my PSA had risen then alarm bells would start to sound and concerns on my side as well as my oncology team would go into overdrive because this clearly indicates all is not well. Obviously it is dependant on how much it rises but any rise is normally not good.
With no rise, my oncology medical team remain happy and revert to their inner shell until the next time. Not for me though, the concern and worry continue as the structure and consequence of repetitive thought begin to set their foundation within me. Getting stuck mentally over a never-ending revolving process of rising or falling will affect your health; you've heard the saying about having too many negative thoughts. It was and is always the case that my mind focuses routinely on the inevitable question of when will it will be my turn for my PSA to rise and cause significant worry again, this is by no means a small concern. I suppose the beauty in my case is that I am regularly checked now so a sharp rise and surge would not be something that would catch my oncology team off guard, unlike my first initial recorded PSA reading of 509 ng/ml which rose to 850 ng/ml before the prescribed medication was administered. It's incredible to know, though my PSA was high I have since learnt that there are PSA's recorded in the thousands when some men are first diagnosed. But one cannot wonder how significant these high readings are in comparison to the normal levels deemed safe. The mental anguish prevails routinely for us all as we near the PSA check. I have observed in Prostate Cancer facebook chat rooms how mentally hyped up many prostate cancer patients get when they near a routine PSA check. For some of them, the information of a pending PSA check is sprawled across many of their pages, as they let the public/closed group room know and the public/closed group room responds with favourable messages of support, which is all good. But when the news comes back unfavourably, the mental anguish is clearly apparent and the questions and advice commence even before the individuals have had a chance to sit with their own medical team to assess. For some of us though there exists a guilt trip concern within our mind that the news is favourable for us, but not for other sufferers. The inevitable question in my head is why them and not me. Obviously I'm not wishing it on myself but I am duly concerned about my fellow man. Why them and not me I suppose it just goes with the territory as I breathe a temporary sigh of relief, but it's only for a little while before the whole dramatic build-up commences all over again.
Let's be clear on something it's not just us that go through this emotional rollercoaster and mental re-arrangement, so do our families each and every time, they also feel the relief when we are relieved. Prostate cancer tears at the very heart of the family fabric and places undue pressure on this unity. What I would give for my family not to go through this emotional turmoil I face and for them to be able to return to an almost normal way of life. I suppose this is life's way of finding out who stands with you and beside you, after all, not everything is clear black and white, is it?
Sometimes I yearn for all what I am going through to go away. Sometimes I feel that it's all just a horrible dream and that I will wake up out of it and be the man I use to be. But sometimes we just have to accept the reality of the situation we are faced with, regardless of whether it's positive or negative and buckle our belts for the long or short ride ahead. God will not give you more than you can bear. Truly I have questioned this over and over during the last eight years, but my belief in this entity is the same belief that carried my mother through her cancer illness and what is carrying me through to the next part of my life's journey.....
"Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment."
Can you see the ice pick type pain stabbing my brain, nausea, the dizziness? The way it feels at times is like my hand is armed with a sledgehammer which is trying to break through my skull!
How about the swollen ankles and feet causing me to walk so carefully because I’m not sure at times I can trust my balance to get me from point A to B.
How about the way I cringe from a hug because of neuropathic tingling pains smattering across my back which means I hurt all over? The way I wince in pain when this debilitating pain strikes unexpectedly. Surely you can see that… surely you notice. Maybe you don’t do you!
Let me tell you now you can't tell by looking at me that I suffer from this invisible pain. Just over 8 years-ago a stage four cancer diagnosis came crashing into my life like a demolition wrecking ball, it shook my entire work pattern, dreams, and family. The unforeseen changes after my diagnosis left me and my family feeling quite vulnerable and lost at times. Tough times happen for everyone however, the road back to normalcy from a cancer diagnosis is never the same again... Much of what goes on with me on a day-by-day basis you cannot see. Can you tell how I’m feeling by looking at me? Because pain does not show itself in a tangible manner.....
I have often wondered what goes through the minds of people when they see a large strapping healthy-looking male sitting in a disabled seat area on a train or a bus. Unfortunately, many people make judgments about the capabilities of others based on the way they look.
Let me tell you sometimes I have just barely made it onto a train or bus, hoping that there’s a seat available, any seat will suffice.
These invisible symptoms may not be obvious to you the average observer but to me a person with this invisible illness, I at times experience severe limitations on my daily activities and overall quality of life.
You may see someone who looks healthy park in a handicap spot and immediately assume that their handicap placard is being used illegally, when in reality that person may legitimately be in a lot of pain during their brief walk across the parking lot.
I’ve known friends and family get frustrated at me that I am not available for social engagements anymore or that I am not feeling better yet. Looking fine on the outside can be extremely difficult to explain to others with what I am really dealing with on the inside. How do I make someone, anyone, understand and realise how much pain I am in when there are no visual signs of my pain other than my screwed up contorted face, which anybody can do. Even though I am able to keep going through my day that does not mean all is well, I am just an old soldier saying very little and trudging along through my life doing the impossible most times!
Trying to explain what you are going through to someone who does not truly understand life with an invisible illness can feel like a daunting task. And, at least in my experience, my efforts are often unsuccessful. This invisibility and lack of understanding can make people like me with advanced metastatic prostate cancer feel very isolated.
This is occasionally why I find myself feeling strangely grateful when I see my contorted or visibly swollen hands or when the pain in my toes and ankle forces me to limp whilst I walked. I felt like I finally had some “proof” that I could show to people who I knew were judging me by my appearance. Like maybe it would help some of them finally understand what I deal with and continue to deal with most days.
Please don’t get me wrong – I would never, ever wish for a physical deformity. I am extremely grateful to have access to medications that prevent my situation from going down a path such as this. And in no way do I mean any disrespect to people who live every day with physical disabilities.
All I am trying to do is get people, loved one's friends and family to recognise that sometimes the invisible painful aspect of life with Stage four cancer can be particularly difficult to cope with.
I never signed up for this, never in my wildest dreams could I have imagined that my life would be like this, day-in-day-out for over eight years...When you live with persistent pain it poses a threat to your overall mental well-being, involving obvious distress from the pain itself, alongside effects on daily functioning, fatigue, and ongoing uncertainty - all ultimately adding up to a chronic stressful situation, one to be avoided at all costs.
“If I can help someone as I travel along life’s highways then my life will not have been in vain”
Cancer does not care who you are or who you love, it does not discriminate young, old, whatever. It is merciless and shows no sympathy, your dreams mean nothing to cancer...It couldn’t care less about your job or how hard you have worked. It doesn’t give a dam about your family if you're going through hard times or how many followers you have on social media. Cancer does not care about you. We don’t like cancer messing with our dreams, plans or life however whatever cancer throws your way (you had better be ready to deal with it).
You don’t know what you’re made of until you go through a tribulation such as a cancer diagnosis...I’ve been through what seemed like a baptism of fire and an earthquake all in one during the past eight years... I’ve gone and lived through so many changes during my treatment...At times the storms seem to subside only to come back unexpectedly. Oh, so often I wished for no more pain, no more guilt. Often I have thought about the courage it has taken me to get out of my bed each and every morning to face the same things over and over it has been mindboggling, to say the least. But I refuse to be seen as a victim for sharing my story. I am a survivor who is revealing the truth about a journey with a disease whose prime aim was to kill me. You never know who needs to be given inspiration or motivation whilst undergoing a cancer journey and I hope my few words will reach you and yours...I believe I am made from the same stuff that British Soldiers are made from - Sheer guts, determination fearlessness, courage and motivation. For me, failure or quitting was not an option as I faced each and every day of my journey thus far.
I have been doing this cancer thing for 8 years now after being diagnosed in January 2012 with Advanced Metastatic Prostate Cancer, stage four, to which I was given less than a year to live. The swings and roundabouts of this journey have been amazing. It has been a calling for me to listen more deeply to nature and my soul. Personally, my strongest source of inspiration has been nature - being outdoors, this is where I have felt so free and unabated. I’ve travelled extensively around the globe which has been intense and meaningful as well as very educational. I am finding though that I still have to keep step with the prostate cancer survival dance. I owe my life to the stampede drug trials program funded by Cancer Research UK.
I was one of the first waves of patients to receive and undergo this turning point treatment medication; Abiraterone which was the new prostate cancer wonder drug at the time. Over a seven month period, I watched as my presenting PSA (Prostate-Specific Antigen) of over 500ng/ml reduce to zero and have not seen it rise since, an astounding and amazing medical feat. Attitude clearly matters when fighting cancer “A sanguine personality” is needed. I have found it challenging to balance and difficult to know how to weigh hard choices about listening to my soul calling and putting my life into material things including financial security for myself today and my family when I am gone. Different treatments come with a wide range of side effects that can either be short-term or long-term.
It is said when caught in an early stage, around 25% of patients have a life expectancy of at least 5 years. If undiagnosed until an advanced stage, the life expectancy drops to between 6-11 months if locally advanced, and 2-6 months if the cancer cells have spread. You will see that I have done exceedingly well to have survived way beyond the medical worlds prediction. I have had problems with the side effects caused by the long-term use of some of my medication. Over the past eight years since using Abiraterone, I have suffered from an array of issues such as many bouts of hot flashes, tiredness, fatigue, forgetfulness, muddy thinking, neuropathic pain, nerve damage to my upper legs, painful ankles at times causing a sense of weakness and wobbliness whilst walking coupled with pins and needles in my feet. I did not have these before so I can only but ask is this as a result of the Abiraterone drug...These are now the problems that are here to stay with me it seems, permanently. At times it can be overwhelming in determining the status of my life expectancy.
For me, this will continue to be the case the longer I live. As such I have little choice but to focus on work and income while I am still capable of doing so. I am alive but however living with side effects from my treatment every day which have proven to have long-lasting effects. Though it is wonderful to know that research provides a cure I firmly believe it needs to provide a less damaging cure because it affects you greatly afterwards. As a means of keeping my sanity, I continue to write blogs in relation to cancer awareness and my journey. I continue to sacrifice my own time to help causes such as CRUK and Orchid two well-deserving charity bodies who do not receive funding from the UK government. It is completely funded by the generosity of the public along with people giving up their time and volunteering.
You don’t know what you’re made of until you go through tribulation such as cancer but unbeknown to me I had already been primed, primed to survive. Often we reflect on situations that have presented themselves to us in days past and wonder how the hell did we get through that not realising that you were subconsciously trained to get through it.
I talk much about myself, forgetting at times that I have a wife who is in this with me. This cancer has put us through hell but I have truly found the love of my life'. My battle is her battle also because how I feel affects her daily life. “I love this woman, I love her more than sharks love blood”, nothing has got us through these dark times than our love and faith in one another.
As a former member of the British Territorial Army, I recall what military instructors taught me, “Never ever give up” regardless of the circumstances prevailing – I have pushed beyond boundaries that I didn’t know existed within me or that have lain dormant. I reacted to a military psychological profile that says “push a man beyond and above his usual, then that man will show that he is capable of standing up to exceedingly large amounts of pain”. Now change the game face to that of a cancer journey and you have before you an individual primed and ready to undergo that journey. Yes at times it is so debilitating, as the dreadful discomfort puts weight on my feet as I try to exercise, but walking through pain becomes the regular norm and I just get on with it.
As I go about fixing that which is broken I know that this is the scariest adventure I have ever undertaken however it has proven to be the best adventure of my life. You’re never the same after a cancer experience, never. Like many, as I have gotten older I dislike allusions to wars and battles but like it or not I have had to do my fair share of fighting during this journey. Maybe just maybe it was the good old days coming back to not only remind me how to stay alive and fit for purpose but to trigger deep survival emotions and feelings.
We all have something within us that makes us mentally tougher and able to withstand pain tolerance. This tolerance is what propels you through the treatment moments and all aspects of that journey, in my mind this is how you get there.
"If I can help somebody as I walk along, then my living shall not be in vain."
Nobody wakes up thinking that this is the day that they will be diagnosed with cancer. Over the past eight years, I have seen my life turned upside down, inside out as I struggled with a cancer diagnosis, something which is abhorrent to us all. Whilst evaluating my life I have realised that it has taken directions never imagined. At the time of my diagnosis, I was at the top of my profession only a few more years to go before retirement and a planned retreat into sunnier climates having led an exhaustive professional and mentally taxing career. All planned, all laid out then travesty struck and my thoughts now lay with a doctor’s prognosis of fewer than six months to live. Cancer has not just completely ripped through my family, it has devastated it.
It’s amazing how everything can change in the blink of an eye and none of us is exempt from any of the ill-fated curve-balls that life throws our way as your world gets turned upside down. Serious illness has always been perceived as a threat to health and life. The initial reaction by most people is to shut it out of our minds and as it were, pull the bed sheet covers over our heads until everything is ok again. Under no circumstances is a material wealth of any use to us, we all are in the same boat when it comes to matters of life-limiting, ill-health and the struggle for survival against seemingly impossible odds.
Imagine this if you can, your mind and body subjected to regular spasmodic contraction jolts from the metastatic disease. Your body clenching and twitching in disbelief at the pain it is being subjected to, as you are left regularly clutching pain relief medications in a bid to temporarily ward off this pain. Your family subjected to watching a loved one going through this experience in front of their eyes and you wondering how mentally scarred, are they? Where in life’s chapter of survival does it say medium size pain is all you will ever suffer? That your loved ones will not be affected or subjected to seeing another loved one suffer in front of them the pained looks in their eyes destroying you, the cruellest of all forms of torture I say.
When your own life is threatened by a cancerous disease your sense of empathy is blunted by a terrible, selfish hunger for survival. It was sad that I was suffering so much and there was nothing I could do about it or was there! It was then that my state of mind and body opened to the desire and hunger to survive. It was here I started to find ways and means by which to survive.
From my own introspective only those of us who are of medium physical fitness or with an endearing attitude of 'Never Ever Giving up', or engaging in a one to one spiritual relationship with an invisible entity will get through this, the worst episode of their life.
The cruellest education that I have ever had to undergo was to watch my mother suffer over a 7 year period and eventually succumb to breast cancer. Her regular facial grimace to pain and the reaction and side effects of the medication were to be my pathway many years later, but we are never prepared for unexpected life fallouts, are we?
For most of us, there is a desire and a constant struggle and tension to stay alive and keep our sanity. The struggle to survive also leads us to a minute examination of every aspect of our lives, the good, the bad and the indifferent culminating in making deals with our souls that we will do anything to keep living, anything to stop the pain, anything; for some, even a deal with the devil presents itself as a not so farfetched option. This is the extremity that we as human beings will go to in order to survive, sometimes fundamentally changing our natures and beliefs.
Most of us ask the question of how do we keep going when all the odds are stacked against us. Extremely tough life-limiting battles can be fought and overcome - when we choose to seize the moment, face our fears head-on however everyone’s journey will be different, more intent and more painful as we draw swords and duel with slayer of life, cancer. For many of us, we look for inspirational and empowering personal life stories of indispensable worth and unforgettable value.
For many of us lurking within our minds and bodies is the heart of a survivor just waiting to get out and be exposed for all to see - Courage.
Tenacity and Strength, so do not shy away from the hard times, they are your chance to shine.” I have grown in character through my own personal ill-health experiences in life and realised that life is short.
It is precious. And as such I needed to make the most of it; live your dreams do not just exist. Love life; nature, people, places and cultures...It’s amazing what’s on the other side when you really look...
Honesty compels me to admit I have had to deal with real FEAR – The fear of dying and I have felt frightened and very lonely during the months and years of this journey. I have confronted fear, real moments of fear in my fight since being diagnosed.
You cannot go through cancer without confronting moments of fear and anguish. Even in the moments of Loneliness something spiritually came to remind me that I should keep going on and on and not give up.
Many times my mental state of mind was tested and tested again without me fully understanding that the places where I found myself were not of my own doing. The mental health problems that arise as a result of cancer are too often sidelined. It is suggested that one in three people with cancer, will experience a mental health problem such as depression or anxiety disorders before during or after treatment. For many of us, we are left to cope with mental health problems alone.
I felt sad, at a loss, because of the health concerns that I faced and the life that I had before I was diagnosed with cancer. There have been so many moments that I have had very little energy, tired or lacked appetite, all this in the blink of an eye, for some these feelings, go away or lessen over time for others they languish daily.
I have never received support or advice from health professionals about managing my mental state of mind with regards to cancer, in fact, I was never informed that there was a possibility of any potential mental health problems that could arise – other than that gained from fellow patients in the likes of social media cancer chat rooms – I ask you! I say from diagnosis to post-treatment and beyond person-centred support must be made available at all steps of the cancer journey.
The clinical drug trial program which I had undergone was carried out in a strictly managed clinical environment. This did not cater much for my own feelings and was far from sympathetic to my needs... Many a day I felt like I was falling off a cliff edge, even up to this day.
However, it is as you venture further into your journey that you realise that not all storms come to disrupt your life, some actually come to clear your path... Whatever Cancer throws your way... (you had better be ready to deal with it)