Steve Williams my uncle born 02nd June 1953, and sadly left us on 14th October 2015, Steve lived his life in Australia after emigrating when he was just a teenager, where he and Lucy lived a very happy life and enjoyed everything life gave them, he sadly left behind his wife Lucy and his two children Amanda and Wayne, plus many grandchildren and lots of other relatives both in Australia and the UK, Steve was an amazing man, actually no he IS an amazing man, his courage and fight will always be remembered, he didn’t give up when he was given the news, the news that nobody ever wants to hear, the words that impact life as soon as they fall off the lips of the person saying them “sadly you have cancer” Steve & Lucy was told that sentence in 2010, they had found that Steve had developed Carcinoid Cancer or Neuroendocrine Tumors, this was a very aggressive cancer and one that Steve couldn’t beat but oh did he try, that said Steve battled for five years fighting everyday against the odds, enjoying his life with his amazing wife, his children and his grandchildren, even after Steve had to have one of his lungs removed as well as part of his Liver, again even though often struck with ill health he always battled and remained himself with his infectious smile and ever lasting laugh.
We was fortunate to have made it to Australia in 2011, we wanted to get my Nana over so she could see her son (Steve) possibly for the last time, it was amazing to spend time with everybody, family I hadn’t met before and get the chance to see Steve and Lucy’s lovely home, Steve made sure we saw many places during our time which even in spite of his own struggles, pain and ill health, he ensured we enjoyed our time in Australia and also got to spend time with his mother, Steve continued on with his battles long after we had left taking everyday head on, Lucy told me that Steve was a blood donor for many years, he had a rare blood group (like me), he was on a panel where he would go at certain times, as they also had another person who donated the same as Steve and between the two of them, their donations provided lots of research samples, not that Steve ever found out what that research was for? Sadly as his cancer worsened and Steve became more poorly, he began writing an account of of living with cancer he titled his story “The Beast Within” which with kind permission of his wife Lucy, and his Daughter Amanda I’m going to share his story here on my blog, it is a powerful piece and written by Steve directly, his words, his thoughts, I feel sad when I read this it, but then privileged that I’m able to read his words and that I knew and was related to this incredible man, Steve didn’t get the opportunity to finish his story as the cancer claimed his life before he got the chance to complete it, finally closing his eyes on 14th October 2015.
The Beast Within by Steve Williams. It felt so long ago now when it all started to begin, it lay waiting in my body the beast within. The shivers and uncontrollable shakes which no doctors could explain, but it was the beast within that would be the cause of all the pain. It was a year or so along the track, the coughing and the aching back. The diagnosis was influenza, whooping cough, or could it be a chest infection? There were the signs, but no detection.
Then the X-Rays, CT scans begin, and then painful biopsy’s finally showed the beast within, it had taken residence within my lung and wrapped around my airway, I don’t know why it had chosen me, but it was surely going to make me pay, The surgeon said we’ll cut it out; we will perform a lobe resection, you will be just fine, as good as new, as long as there’s no infection. The day arrives they shave and prep me and lay me in the hospital bed, I look around so very scared, so many things going through my head, they wheel me along the corridor into that freezing room; My heart is beating so fast, its going to happen very soon.
Arms outstretched so many people stood around, I’m looking at their face, One long push of that syringe and I’m in a peaceful place, The surgeon holds the scalpel and slices along and spreads the ribcage, as he looks inside he sees the Beast Within, large and ugly so full of rage, it wasn’t going to let them take it without a huge fight; They had removed the whole lung by the end of the night, they wheeled me along and into a ward, eyes are closed still asleep I cannot see, but I know my wife and daughter are by my side, they will comfort me, as I awoke the first question I asked was “did they have to take the whole lung” as my wife whispered in my ear they did with her head sort of hung, now the hurt really begins as it feels like they have ripped out my chest, the aching pain is so unbearable this is really going to be a test, the pain and the agony as I lay in my bed, thoughts of dying were going around my head.
Six days later they sent me home with my daughter and wife, it would be a huge change to the rest of my life, at home for two months in the recliner I lay, pumped up to the hilt with drugs every day, the sloshing of fluid as it filled up the cavity in my chest: The burning sensation like a red hot poker being plunged inside would give me no rest, Six months later the suffering and the worries seemed all in the past, I really thought the Beast Within was gone at last, back to work after six months off and everything seems to be going really well, at home fixing fences pulling down blocks I’m on the mend I can really tell, the more symptoms begin again, hot flushes, headaches and immense back pain, my Ten month check was due I feared, I was so worried about these symptoms that have now appeared.
My appointment day arrived the respiratory specialist said to me how have you been, I proceeded to explain the symptoms that had begun, he said to me we will need to do another CT scan, off to the PA, then into the scan machine I slide again, contrast is injected into my vein, the circled band inside starts to spin so fast, deep breath in and hold I’m told. Your scan results will be through in a week or so, another anxious wait to go. A few weeks later it’s off to the specialist for my scan results, we are holding our breath. Well Mr Williams the doctor said, good news your lung scan is clear on that pane.
Unfortunately the liver scan has shown several tumors, the Beast Within was back again, the sickly, fearful feeling strikes you with vengeance, could this be another life sentence, A monthly appointment with Oncology was made straight away, also a visit to Professor Fawcett a liver surgeon was made for a further day, my wife and I walked out of hospital at noon, feeling that I could be gone very soon, it was the worse news we could ever of had, we felt confused, angry and sad. We walked to the car eyes welting with tears: it was a nightmare the very worst of our fears, a visit to with Dr Fawcett the liver surgeon was next in line; he had said I can help you, and maybe give you more time.
He said to me as I walked in the door, you realise one thing thought, it will not be a cure, I can remove about 60% of the cancer he did hark, but you know this will be no walk in the park, there is a high risk with the surgery with only having one lung he said, but there’s no other option or you will end up dead. The next step was here at the PA hospital again and as I arrived to be admitted to a ward, I signed the authorisation for a Portal Vein Embolisation they were to block one side of my liver, the very thought made me shudder and shiver, the idea of blocking was for one side to grow, and then the two large tumors would have to go, that night I lay in my hospital bed, there were strange thoughts going on in my head, the Beast Within had me all worried again, would I wake up in intense pain, they wheeled me to the theatre the following day, I remember awakening as I could not breathe, “no way” As I panicked and tried to pull the mask off my head, the next thing I know I was lay back in my bed, the procedure was over it had all gone fine, the liver resection was next in line, waiting, waiting and more worry again, the liver resection was now way over time.
A letter arrived to see the surgeon again and in the meantime my monthly Oncology appointment was due, the news wasn’t good they cancelled the surgery it was a huge disappointment to Lucy and I, the tumors in the left lobe of the liver had doubled their size apparently being the reason why. Another round to the Beast again, my body reeked with aches and pain. The flushes, pulsations, shaking, nausea and headaches were out of control, I feared my days were slipping away, I was virtually living from day to day, then out of the Blue some months later as I answered the phone, a voice said, “Hello Mr Williams this is the PA Administrator I’m glad your home.” “I’m ringing you just to let you know, the surgeons have looked at your latest scans and decided it’s time to give it the go” The butterflies started again for a minute or so, a mixture of relief, anxiety waved to and fro, an appointment was made to see Professor Fawcett again, to make a date for surgery and things he had to explain, I have been in touch with Dr Whyte from the Royal Brisbane, the targeted therapy is on the agenda again.
But first of all that huge tumor must be removed the whole right side of your liver none will remain, it was a huge operation that has to be done, to stop the Carcinoid crisis or the Beast had won, the day had arrived, the surgery would begin, to try and take the Beast Within, the nervousness and the feeling inside, I feel sometimes that I would just like to hide, no sleep tonight just worrying dreams, but I’m not alone with these thoughts I have today, I know my family and friends are with me all the way, but I can’t stop this lonely feeling I have deep within, I don’t want the Beast to win, it won’t like what’s going on and I’m worried it might try to run, it might try and find another hiding space. I can just imagine the anger on it’s face, the smaller Beasts might take advantage and move away to another place.
Its the day of surgery and that nervous car trip to the PA, thinking as I drive along “what if something goes wrong” nobody in the car has much to say, they are all thinking about the day, as I check in at the admission desk the lady said “take a seat please I will organise your bed” after entering the ward an Octreatide drip was place in my arm to stop a Carcinoid Crisis that could happen under the knife, otherwise it could end my life, next morning into that freezing operating room I was wheeled again, as I lay on the bed arms stretched aside, the fear and anxiety I was trying to hide, “we will start the injection now Mr Williams” they said, then all of a sudden blankness filled my head, next thing I know I feel a tube being pulled out of my throat, “take it easy Mr Williams it is all over now you’re in ICU” I felt like I really wanted to spew, tubes and pipes were hanging out of my body, and the wrenching pain in my stomach like my guts had been torn out, for a minute I thought ‘what is this all about’ Just then my wife and kids came in and though I was in so much pain, it was a great relief to see them again, the drugs are pumped into my body again to help me handle the aches and the pain, The Beast Within was beaten once more and I felt I was ahead in this fight for my life, and so much was due to my kids and my wife.
The next day I was moved back to a ward, the surgeons came in that had saved my life and said that everything had gone well, to me and my wife, how could I ever repay them for what they had done, if it wasn’t for them I would definitely be gone, up the next day and starting to walk with the aid of a frame, but after I finished my body racked with intense pain, “I know this hurts Mr Williams” they said, “but it’s no good for you to stay in bed“, as the days go by the pain gets less, but my stomach really looks a mess, another large scar added to my skin, you can really see where the Beast has been, another round to me, I’ve beaten the Beast again, but it’s left my body wracked with pain, I look so withdrawn and so frail, and my face looks really thin and pale.
My condition worsens the following days, admitted through emergency in another faze, the nurse on duty says to my wife, he looks very sick, take a seat over by the door we will rush him through quick, they take me that night into a ward they did pick, my stomach so bloated and feeling so sick, they put me on a drip and give me an injection; they say that they think it’s a liver infection, they starved me on a drip with nothing to eat, after a few days I was back on my feet. Sometimes at night I dream that I leave my body behind, and travel through time with my mind, past, present and future I travel through space, and I end up in this magnificent place, Then I awake in the morning and I’m still here, I think that the dream just lessens the fear. As time goes on the healing process is slow, I still have ten tumors and a battle ahead I know, but each day I get stronger and I put on weight it certainly has delayed my fate.
It is time now to start my radiation targeted therapy, four sessions every six weeks they tell me, I’m a bit nervous the first time I go, but I do have faith in the doctors I know, I lay in the chair and an intravenous drip is placed in my arm, I’m thinking is this radiation going to do me some harm, Amino Acids are pumped into my veins first to trick the liver into thinking I’ve eaten a meal, then I just lie there for an hour or so until the radiation is ready to go, it sounds so unreal, the radiation is brought in on a specially designed trolley and a bag of Octreatide is hung from a hook, they are mixed together as they are sent into my vein, and for a few minutes it makes me feel quite crook, a large lead lined screen is then wheeled in and placed between me and the staff, it really makes me laugh, I lay there was the rest of the day thinking if this treatment will make the Beast go away.
I know this is not a cure and only a trial, but it may make the Beast Within lay low for a while, after the treatment a pet scan is done, later on down the track they will tell me if the Beast has won, but my gut feeling is that it will slow the Beast down and give me more hope, a Dota Scan with nuclear medicine is booked for January 2014 and another Pet Scan too, another long wait, but that’s nothing new.
Life seemed to be going well for a while, less aches and pains than before, but that didn’t last for long and I was in for more, the tumors were on the increase again, CT scans show more metastasize now in my spine and lymph nodes, I’m in for more pain, feeling sick again it’s getting me down, more depression not knowing how long I will be here, off to the PA Hospital again to see what the plan is to be next, not much I fear, the next attack on the Beast Within is a new experiment chemo drug from the UK, once a week for a cycle of four, then two week break and then some more, on the fourth week I was feeling so sick, this treatment was hitting me hard, but they were pushing on without regard.
I got home that afternoon my whole body was out of tune, I flopped out on the sofa in the lounge room, a temperature of 39 that night, but I think I gave the family a bit of a fright, apparently I was very sick so they admitted me to a ward very quick, skin was peeling off my arms and chest, I was given oxygen as I could not breathe the best, they said they were stopping the chemo treatment straight away, I was lucky to be here to see another day, a week and a half I lay in that bed with thoughts of dying going through my head, needles and more needles it was relentless my veins started to collapse, my arms black and blue, as they tried to ween me off the oxygen too, they asked me how I was, a lot better I said, we will send you home today then as we need that bed, the chemo had made me diabetic through the steroids they had given me, I have to inject myself with insulin every day from now on, I sat in the transit lounge waiting for the diabetic worker to come, I thought to myself ‘oh’ what have I done.
I went home feeling completely not right, and was rushed back to emergency that very same night, admitted again this is a nightmare, my poor wife Lucy another huge scare, test after test they found I had contracted a bug in my lung, it turned into Pneumonia, with only one lung it was going to be tough, but with antibiotics fed through a line, a week and a half and everything was fine, home I went exhausted and fatigued, another round to me against the Beast Within, I’ am determined not to let the Beast win, weeks down the track now, starting chemo again, it’s not the same one this time though, I’m feeling apprehensive and a little scared, but I have to try everything there is you see, To stop that Beast trying it’s best to kill me, well again to the hospital for my Octreatide
(To be completed)
Steve didn’t get the opportunity to complete this piece, the Beast Within finally beat Steve after he battled it to the bitter end, on the 14th October 2015, Steve sadly had no fight left, and closed his eyes for the last time, as I write this and copy his exact words my eyes have been shedding tears throughout, a mixture of complete profound sadness that such an amazing, loving, caring and considerate man had been cruelly stripped of more years with his family because of this horrible, loathsome Beast, but also the shear power of his conviction, the battles he fought so bravely even when his body was ravaged and tired, he didn’t quit he took his fight to the very very end, if I could emulate a fragment of what Steve achieved would make me a far far better man, his strength should all rub off on us, and drive us forward to live our dreams and to fulfil our lives the very best we can, when we think things are “to hard” or “we cannot do it anymore” Steve’s example should be our benchmark, giving us the will and determination not to quit but to push forward and battle for each day we have.
You will never be forgotten not by me , you have left behind an amazing family especially in your wife Lucy, your children Amanda and Wayne and your many grandchildren who will always want to talk about you, here in the UK your family will always treasure the times we spent physically with you, and the memories we have through airmail letters, countless emails and pictures, and the lengthy phone calls we shared often, I love and miss you with all my heart Steve and I hope when we do meet again we can continue the conversation we were having, on the telephone the one we never got chance to finish. stay safe Paul 13.02.2021