The above passage from a book called ‘A History of Western Philosophy’ by Bertrand Russell jumped straight out at me as I scanned across the pages. I recall being half way through a seventy-two-hour chemotherapy cycle, I was bored, pissed off and was just doing my best to pass the time when I was stopped in my tracks by this passage. For some reason those words had evoked a sense of calm amidst a whirlwind of frustration and anger.
My name is Nikky Gibbons, I’m thirty-two and have had to battle cancer twice in the last five years. One thing to note is that I’m not usually very open or forthcoming when it comes to expressing my feelings or sharing my experiences. But it had been pointed out to me that I had been through a fair bit the past five years and by sharing my story I hope that somewhere down the line it may help someone else in a similar position. So here it is, a brutally honest and open account of my battle with cancer.
I was twenty-six the first time I was told I had cancer. I don’t particularly recall the conversation I had with the specialist at the hospital. As most people will testify, the second the words “I’m sorry, it’s cancer” are uttered you become immersed in your own little bubble, completely oblivious to what is really going on around you. I had gone to Birmingham Hospital not really knowing what to expect. The fact that I had been asked to report to Oncology didn’t bode well, however for some reason I honestly didn’t expect to be given that news …Bone cancer! I had no idea you could get cancer in the bone. I know it’s a cliché but at that precise moment my whole world fell apart.
The drive home from Birmingham Hospital will be forever ingrained in my memory. It was like some sick joke. My head was all over the place. I sat in the back of the car staring out of the window trying to make sense of what had just happened. It must have only been around 5 o’clock but the darkness of the evening had rolled in quickly as it always did at that time of the year. The wind and rain were battering the car. It was relentless. For the whole two hours it took to get home I stared out of the car window and saw nothing but my own reflection staring back at me. I was completely helpless, there was absolutely nothing I could do and that petrified me.
The disease that altered my life started back in January 2011 when I first felt a pain in my left foot. I had been playing football as I did every Monday night. Initially the pain didn’t force me to stop playing so I carried on and waited until I got home to take a look. The toe next to my big toe on my left foot was swollen, red and painful to touch. All the symptoms you’d expect from a broken toe. Knowing there was nothing that could be done for a broken toe I bandaged it up the best I could and took some pain killers. The pain however continued for several weeks until I took some time off work in order to rest properly. After a few days the pain had subsided and the swelling had gone down and so I blindly carried about my business as usual.
A few months later, I was at the gym running on the treadmill and I felt the pain again. This time I decided to head to the hospital. I had an X-ray and sat down with the doctor who pointed out a patchy, less dense part of the bone in my toe. He explained that this was a cyst and there was nothing that could be done. All I could do was to continue taking painkillers and hopefully the pain would go away. It didn’t. Another month on I decided to visit my GP. After a short discussion and a look at my previous X-ray I was referred to a specialist. It seemed as though no one was quite sure what was wrong. Over the coming months I had two additional X-rays alongside two MRI scans. It was now approximately 9 months on from when I first felt the initial pain. As a last resort the specialist offered me a biopsy. He said it would be the only way to know for sure exactly what was going on. At first I was a little reluctant. It would mean several weeks of rest and time off work for which I would have to go without pay. But in the end I decided that if this was the only way to get any answers then it was a wise thing to do.
Without knowing it, the decision to go for the biopsy was the most important decision I had made in my life.
Two weeks later I was at The Royal Orthopaedic Hospital in Birmingham being given the bad news. The 15th December 2011. It had been almost a year since I felt the initial pain. I had been diagnosed with Ewing’s Sarcoma. A rare type of bone cancer. Luckily for me the tumour was very small and there were no signs that it had spread to any other parts of my body. This was a huge plus. Things moved very quickly. I was introduced to my consultant and nurse specialist at the hospital in Nottingham. I sat with them in a small room as they did their best to explain how the next year or so would pan out. I switched off after about five minutes. Nothing made any sense to me. Talk about an information overload! I assume they understand that the vast majority of what they tell you doesn’t register because I was handed leaflets, books and pages of literature stapled together. I got the gist of things though, six chemotherapy cycles followed by surgery to remove the tumour then another eight chemotherapy cycles to finish …Great!!
I went to see a few of my friends in person to explain that I had cancer, I thought that was the right thing to do. I played it down a lot. I didn’t really want any fuss. But I also didn’t want to believe just how serious the whole situation was. It wasn’t nice. Its hard to find the best way to tell people you have cancer and to do it in such a way as to not worry them. I found it tough telling my friends but not nearly as tough as telling my Mum and sister. I had gone to the hospital with my Dad and his wife. Nobody was expecting that I would be told I had cancer. When I walked into my mum’s house everyone was all smiles. The mood changed rapidly. Again I struggle to remember the finer details but I’m pretty sure I just blurted it out. It broke their hearts. My mum was inconsolable. My sister was in shock; her best friend had also battled cancer a few years back and to see someone you love completely shatter into pieces was heart breaking. I remember shouting at my mum telling her to get a grip or pull herself together or something to that effect. I sound horrible, I know, but I was struggling to hold it together and I needed someone to be strong for me. It wasn’t one of my finest moments and I certainly felt bad for the way I spoke to her.
This was all happening in the run up to Christmas. There is no good time to be dealt a blow like that but for some reason the fact it was nearly Christmas made it worse. I coped with it in pretty much the only way I knew how, I took advantage of all the Christmas parties that were going on and went out and drank as much as humanly possible over that period. I was due to start my treatment on the third of January which meant there would be no going out and partying, no Saturday afternoon sessions in the pub with my mates, no eating out, pretty much no fun for a whole year.
New years eve came and went. I visited a local barber to have my head shaved that morning. I had good hair so I was a little sad to see it go but strangely enough it didn’t bother me too much. That night I drove to a house party a friend of mine was having, then picked my sister up from town on the way home.
The third of January 2012 had arrived. I got to the hospital and was shown onto the ward. I was in the first bed on the left in a section of the ward that was occupied by three other people. It was early evening. I was told that I would be heading down to have my Hickman line fitted early the next day. One of the booklets I was given described what a Hickman line was and how it was fitted so I had some idea as to what I was in for. Despite reading up, I didn’t realise that this procedure was done while you were awake. Basically, a Hickman line is a tube that is burrowed under the skin from just above the nipple on the right hand side of your chest up over the collar bone to the neck, it is then fed down a vein until it reaches the top of your heart. I was given a local anaesthetic so didn’t feel much pain just a bit of pushing and pulling. It seemed as though the doctors where having a bit of trouble due to the fact my skin was ‘tough as old boots’ and the tube had kinked slightly. Nevertheless, with a bit more pushing and pulling they managed to get it done. I think the idea of what was happening was a little more unsettling than the actual procedure itself. Although as I walked back onto the ward my Dad took one look at me and told me I looked traumatised. Anyway, all that was left was a bone marrow aspirate then I could start the chemo.
Now I don’t want to scare anyone who may require a bone marrow sample taking but I can honestly say it is the most pain I have ever felt in my life. I had two liquid samples and two hard samples taken and after the first sample was taken I didn’t know what to do with myself. They have you curled up in the fetal position on your bed, stick a needle in your back and then they suck the life out of you. It seriously felt like I was being turned inside out! The nurse offered her hand for me to squeeze. I couldn’t take the pain, I had almost ripped the mattress in half and that was just after the first sample being taken. I had three more to go. I have a high pain threshold, the ability to withstand a decent amount of pain, I’ve been through some really painful procedures but the pain from that procedure really is at the top of the tree. Afterwards I sat on the bed completely speechless.
With that now out of the way it was time for the main event. I started the chemotherapy treatment that would last around seventy-two hours. I would be administered four different types of chemo, Vincristine, Ifosfamide, Doxorubicin and Etoposide with liquids in between. Doxorubicin is the reason I had been fitted with a Hickman line. It is an irritant and can cause inflammation of the vein through which it is given. If it escapes from the vein it can cause soft tissue damage. Brilliant!
I woke up the day after and immedietly felt drained. I had a bit of a headache and also felt a little nauseous but remembered thinking that it wasn’t too bad. The following two days were much the same. I spent most of the time reading and listening to music. I felt in good spirits all things considering and a day or so later I left the hospital and headed home.
I wasn’t home for long. After four days I was back in the hospital with an infection. One of the big side effects of chemotherapy is that it kills off all of your cells, both good and bad. This means you are left without an immune system and as a result your body is unable to fight off any little infection you might pick up. I had gone to the pub to see a few friends just two days after leaving hospital which was more than likely where I picked up the infection and the reason why I ended up back in hospital. You have to be so careful. Stay away from crowds of people for the first few days after leaving hospital and constantly keep your hands clean. These are things you learn, and over time you fall into a carefully planned routine. It was another week before I was out of hospital again.
Before every cycle of chemotherapy treatment, I would have my blood taken to see whether or not my white blood cell count was high enough to continue with the treatment. Although my treatment was planned for every three weeks it didn’t always work out that way. It was never affected by low white blood cells but it was put on hold after my second or third cycle due to the state of my liver. I went to the hospital as normal ready to start the treatment. But was told that it would have to be cancelled for now. Blood tests had revealed that my liver had taken such a beating another chemotherapy cycle would probably result in liver failure. I was gutted. As a cancer patient I was totally at the mercy of my treatment dates. I would plan my whole life around those three days in hospital and the five days immediately after at home trying to recover. It also meant that it would extend my time as a cancer patient. It took over two weeks for my liver to get back to a state my consultant was happy with. It also meant that my next chemotherapy treatment would be slightly weaker than the ones before it. That didn’t sit well with me. I felt like I was losing the battle.
The cycles that followed went without a glitch. I was getting out and about every now and then when I wasn’t in hospital and everyone was pretty used to seeing me without any hair. It hadn’t taken long for it to fall out. Maybe a week or so, before I knew it I was completely bald from head to toe. I remember looking at myself in the mirror after id just had a shower and not recognising the person staring back. I was bald, pale, had lost a lot of weight at this point, I had tubes hanging out of my chest I had dark rings around my eyes and no eyebrows, I really did look like I was ill. It was the first time I’d seen myself as a cancer patient. It absolutely broke me.
The more chemo I had the more I would be affected and the longer it would take to get over. I had persuaded the nurses to give me my own room. I was pretty unsociable by this time and while I was in hospital having treatment I really did just want to be left alone. There were times when all I could do was curl up in a ball under the covers for the whole seventy two hours and ride it out. My mum, dad and sister got used to coming to visit me and either talking amongst themselves or sitting there quietly not saying a word. The side effects had really stepped up a gear. It would hit hard and fast. My eyes would get so heavy, my head would pound and I would constantly feel like throwing up. Every part of me started to ache and the smallest of tasks would take a massive effort. But the worst thing, the only thing that never left me every time I had chemo was the metallic taste it left in my mouth. It doesn’t sound that bad but it drove me insane. It added to the nausea. It was like constantly sucking on a two pence piece. No matter what I ate to try and get rid of it nothing worked. I went through packs and packs of mints, all I wanted to eat were spicy foods but nothing made it go away. To this day whenever I think back I can still remember the taste.
The time had come to have surgery. I had managed to get through my first six chemotherapy cycles. By this time the hospital had become my second home, all the doctors and nurses had become my extended family and having chemo had become my day job.
I headed back to Birmingham for the op to remove the tumour. This meant removing the toe and part of the bone that it was connected to. I’ve got to be honest, I always felt like a little bit of a fraud. Most people with bone cancer have arms and legs amputated and here I was having a toe chopped off. It wasn’t even my big toe. Don’t get me wrong I was extremely thankful for this. I had been so so lucky that the tumour had been found before it had a chance to spread. The op went well and I was back home after just one night. Unfortunately, I was back in hospital the very next day with another infection. This time I was in for two weeks. I can’t begin to explain how frustrating it was.
Around this time, myself and my long term girlfriend split and I moved in to live at my best mate’s house. It was summer time and I had begun the final part of my treatment, the last eight chemotherapy cycles.
On one particular day my sister and I had headed into town. We had gone for a coffee, done a little shopping, then had lunch. I had not felt great all day so when I got home I checked my temperature. This was the first thing to do when feeling unwell, if my temperature was just a degree above thirty-seven then I was to contact the hospital. This was the first sign of an infection. I was obviously well aware of the procedure when it came to infections as I had encountered a fair few. The thing is I didn’t call the hospital. I went to bed knowing full well that I was unwell but I had spent so much time in hospital, I just wanted some time at home. My temperature was only slightly up so I thought id check it again in a couple of hours. I woke up at around two in the morning. Id been having some really weird dreams and as I sat up in bed I realised I was feeling a little delirious. I took my temperature again and it was at forty degrees. This was not good. I got a bag together and went to wake my mate up as he would have to drop me of at the hospital.
We got to the entrance of the Special Receiving Unit and I waved my mate away. At this point I noticed my breathing had become very shallow. To get to the ward you had to go up two flights of stairs. I should have really taken the lift, just as I made to the doors of the ward I was so exhausted I collapsed. I was helped onto a bed where nurses began taking my obs. I overheard one of them saying I was in bad shape. I was so tired. My heart rate was through the roof and I was struggling for breath. I was quickly moved onto the ward where I had all my chemo treatment. All I can really recall is that I was constantly having my obs taken. They would stand and count the amount of breaths I would take in a minute. I had a raging fever. At one point I was huddled up in my bed covers shivering like mad when one of the nurses walked in with a fan, whipped the covers off me put the fan on max and pointed it at me to try and bring my temperature down.
I can remember the nurse looking worried, if the nurses were struggling to hide their concerns I knew I was in trouble. I think a few days had passed. I had not slept properly and still had a fever. It was early evening I think. I was in bed staring at the walls when all of a sudden a row of red army ants began marching across the ceiling. I watched them for a while then closed my eyes. After I opened them, they were gone. I was hallucinating. It wasn’t long before it started again, this time it was a deck of cards that filed out across the ceiling. Again they disappeared after I’d shut my eyes for a second. It was at this point that I thought it wise to inform one of the nurses of my condition. I was hoping that she would be able to sort some medication to stop the hallucinations but unfortunately the only thing they could give me would effect my breathing so I basically just had to ride it out.
Throughout the night the hallucinations continued, these included a painting of some fields at the end of my bed coming to life, a gremlin putting a trip wire across my doorway and a little girl dressed in white walking past the bottom of my bed and as she disappeared she smiled. It had been a tough night.
I woke the following morning and I was told that I would be taken down to the Intensive Care Unit to be monitored more closely. They explained that there was a possibility that they may have to put me into an induced coma and onto a ventilator in order to get more oxygen in to my lungs and give my body a rest. I didn’t feel particularly close to death but apparently that was the case.
My family were obviously concerned and rushed to the hospital as soon as they knew I would be moved to the ICU. I was in my bed wearing an oxygen mask to help with my breathing. My sister walked tentatively into the room. She had not seen me for a few days and my deterioration was clearly too much for her to handle. I could see that she was on the verge of crying. My reaction was to tell her to get out, I had an edge to my voice. ‘Get out of my room. I don’t need you coming in here if all your going to do is start crying. Get a grip.’ Of course I understand that my sister was just upset at seeing me look so ill. This is a story that often gets told, its something that we now look back on and laugh at.
A bronchoscopy had been arranged. Another particularly unpleasant procedure. It involves having a tube stuck down your throat into your lungs so they could collect a sample of what ever it was stopping me from breathing properly. Not very nice. It was confirmed shortly after that I had pneumonia and I was put on antibiotics. Fortunately, I responded well and after a couple of days I was back on the ward. I had made it through.
It had been several weeks, I had recovered from the pneumonia enough to have my penultimate chemo session and I was back home. I was walking my mates dog as I did most mornings whilst I was out of hospital. I think It was about October, it was a gorgeous morning, the sun was just coming up and you could see your breath in the air. I walked through the park and up towards the lake where there were a couple of people fishing. I stood for a while and looked across as the the sunlight bounced off the ripples on the lake. As I stood there I felt calm and all of a sudden I felt as though this heavy weight I had been carrying for the last ten months had lifted from my shoulders and I knew at that point everything was going to be ok. Everything was going to be fine. A huge wave of emotion had come over me and I didn’t know what to do. I could feel tears welling up in my eyes and I just started laughing. The guys fishing must have thought that I was a lunatic. I have no idea what had just happened and I have never had that feeling again.
December rolled around and along with it my last chemo session. I was almost there. I remember this one hitting harder than any of the others before it. I suffered so bad with sickness and I spent more time in bed when I got home than I had ever spent in bed before. But I’d made it. Sixteen chemotherapy cycles. Months of torture, finished! It was time to celebrate. I had an amazing Christmas with my family, my mate threw a huge house party on New Years Eve which became extra special because it was were I fell in love with my wife. I was finally free to get back to living my life.
2012 was without a doubt the toughest year of my life. Having cancer is shit. That’s the only way I can put it, it’s shit. It takes so much away from you and just when you think it’s taken all it can, it takes some more. It took a whole year of my life. That was so hard to deal with. You’re stranded watching every one else’s life go on as normal. You watch your friends going out, going on holidays, living their lives and all you can do is sit and watch. It sounds like I’m bitter or angry in someway, I suppose I am angry, not at my friends for carrying on as normal but for being robbed of so much. Little moments that get taken for granted. That was by far the hardest thing to deal with. Forget the infections, the surgery, the hours spent curled up in a ball in agony. Being robbed of twelve months of my life and everything that should have gone with it was by far the hardest thing to take.
I had been beaten both physically and emotionally. Throughout the whole thing I had tried so hard to stay strong for my family. I put myself in their position from time to time, I tried to imagine it was my sister who had cancer and who was having to go through all the chemo and treatment. To have to imagine someone who you love and who means so much to you enduring such pain and suffering without being able to do anything about it is heart breaking. This was the reason I pretty much bottled up every bit of emotion for the duration of my treatment. I thought if I could somehow show that it wasn’t that bad, that I was ok and I was coping then it would stop everyone from worrying so much, as if somehow doing this would make it easier for them.
I think all it did was make things harder on myself.
I learnt a lot throughout that year. The most important lesson I learnt was to be as open as you can. No one is expecting you to beat cancer on your own. If I could offer any one piece of advice, it would be this. Talk at every given opportunity. Tell someone if you’re feeling down. It became a running joke between the doctors, nurses and my family that my only response to being asked how I was, was to say that I was fine. Even if I was close to death with pneumonia or feeling like I couldn’t go on any more (and believe me there were times when I sat alone I honestly didn’t think I could face having another chemo session) I should have spoken up. I didn’t and it made things harder than they needed to be. I have without doubt the most amazing family and friends, they all made sacrifices for me that year and for that I will be eternally grateful. I know full well I don’t tell them anywhere near as much as I should, but they mean the world to me and If you have half the support I had offered to me by my family and friends then you should take it.
Cry when you feel like its all getting too much. Scream when you get angry at the world but most importantly be brave enough to ask for help when you need it!
I hope that what I’ve written will achieve what I set out for it to do. I wanted to write an honest, open account about what it was like for me when battling cancer. I found out, albeit many years later, that receiving advice from someone who has been in the same position as you is an amazing tool. Being able to converse with someone who may have answers to some of your questions is a massive help. I hope that this can offer some answers and that people will feel able to ask me any questions about things that may not have been addressed.
The fifteenth of December 2016 signified five years since I was first diagnosed with cancer, unfortunately it was also the same day I was diagnosed with cancer for the second time. Here we go again…