Just to warn you, this is going to be a hard read but after speaking to more and more people, I have noticed it’s something everyone should talk about more. People shouldn’t feel scared of speaking their mind and talking about their problems.
If you know me well, you will know I’m basically the happiest guy on earth. I always have a smile on my face and the majority of my day is spent laughing and joking. This wasn’t always the case. During my treatment it wasn’t just my body that took a huge hit it was my head. I honestly think my mental health was a lot worse than my physical wellbeing at the end and that’s saying something.
(Before my first cycle of chemotherapy)
After the first cycle of chemotherapy and a trip down to HDU, surprisingly my mental health was okay. I was still strong, I had managed to fight from being on deaths door to ‘recovery’ within a few weeks. The nurses thought it was incredible how fast I had recovered. My treatment had worked, I was technically in remission and everything was looking good.
(Photo taken during my first cycle of treatment)
The second cycle was the only cycle I didn’t get an infection, but by the end of another long stint in hospital I was becoming more and more fragile. I was basically stuck in two rooms, whereas my friends were either on holiday, enjoying the summer, or getting ready for university. I wasn’t even halfway through my treatment and I was ready to finish. I was becoming inpatient and frustrated. All that was running through was my mind was ‘why me?’. In comparison to most other university students I hardly drank, I never took drugs, didn’t smoke, had a healthy diet and went to the gym everyday. How on earth did I get cancer? Luckily the second break in treatment came at the right time.
The weeks I had at home were literally life savers. There is nothing like home comforts. What effected me most was being trapped in one unit on the ward, unable to go outside. My days consisted of literally sleeping in for as long as I could, then getting up to go to the family room to watch tv and play pool. I mean, to most that would sound good, but repeat it for over 50 days at a time… The only thing that benefitted from this routine was my pool skills.
(Nothing like a large slice of chocolate cake to make you feel at home.)
With limited distractions I started to over think which can be very detrimental. I needed an escape from cancer. Literally everything around was cancer. It started to work away at me, was this going to become my life? Worst of all, was this going to be my end? I had achieved so much but yet again so little. I was still so young.
The third cycle of chemotherapy came and I seriously didn’t want to go back to hospital but I didn’t have a choice. There wasn’t an option. I arrived and had my bloods tested to find out my immune system was high enough to start my chemotherapy again. My chemotherapy had changed and I was on the ‘asbestos’ of chemotherapy. It had to be given every 12 hours but it took 4 hours to transfuse into my blood stream. There wasn’t room for me to stay in the ward so I was up in the hotel a couple of floors higher. I started my chemo at 7pm and finished at 11-11.30pm went to bed and had to be back for my next dose at 6.45am the next day. I was shattered. To top it off, on my first day back on the ward, a friend had passed away. I had a sense of guilt, it is so hard to explain. I really shouldn’t have felt guilty, I had been dealt a shit hand but I was there and asking myself what has this young person done to deserve this? The answer, nothing.
Every time I was in hospital a friend was taken from me. I would just like to send my love to all the families that have been affected and to say I am truly sorry. I am honoured to have met your children and I feel blessed to have got to know them. Everyone in the ward become one big family. All the parents treated the patients like their own, we shared many stories and life experiences together. These memories will never be forgotten. It is amazing what the human spirit can do, everyone there was suffering but we still managed to laugh and joke around.
During my long third cycle of being in hospital I had started to see a councillor from Macmillan cancer support. I had nothing to lose and the least it could do was distract me for 30 minutes. I learnt a few cognitive methods that would help in the short term, but there was very little else they could do. One of my biggest mistakes was asking a doctor a question I really didn’t want the answer to. I had to find out but to this day it still worries me. I’m sure everyone who has been through cancer has had the same exact thought. What are the chances of the cancer coming back? This was the main cause of my anxiety. It occupied my mind for the majority of the day, pushing away almost all the positive thoughts. I knew I could beat cancer and that I was going to be ok but the thought to have to go through it all again was soul destroying. To this day whenever I think about it my heart rate increases and I panic. In hospital there was no escaping from it. Luckily, now it very rarely crosses my mind. I keep myself busy and I can distract myself. This is one of the reasons sport is such a huge part of my life. I can push myself and the only thought going through my head is keep going or try harder. Doing physical exercise gives my body a work out but more importantly gives my mind a rest.
So, I’m guessing you want to know the answer to ‘what are the chances of my cancer returning?’, I have been given a 50/50 chance of it returning. Literally a flip of a coin. Every day after my last cycle of chemotherapy the chances of it returning decrease. After 18 months the chances decrease again, then I’m still not sure if it is 3 or 5 years until they are pretty certain it won’t come back but whatever the percentage, I can’t control it. In reality they have no idea what the chances of it coming back are. Yes, statistics say its 50/50 but every single person is different. How can I be compared to a 60 year old women? (That was a rhetorical question so please don’t message me your answers). There is so little information on cancer in young people. I mean only 70 people my age a year in the UK get diagnosed with AML. There is over 5 million people my age in the UK to put that into perspective.
The doctors allowed me to go home early after my third cycle as they could see it was having a huge affect on me. I was ‘released’ on 0.30 neutrophils instead of the recommended 0.50 as long as I came back everyday for some blood tests. I jumped at the opportunity. I couldn’t stay a day longer in there. Yes, the Teenage Cancer Trust is amazing but you are still in hospital, I needed my own bed. My anxiety was so bad I remember to this day telling my Mum to not leave me alone. I was in such a dark place, for my own health I couldn’t be left. If I wasn’t crying, I was worrying. I went to the doctors for a solution, I was given some medication but I really didn’t want to take it, I was already on 20+ pills a day, I didn’t want to be adding any more. I only took them when I was really worked up and needed a release. Realistically I don’t think they would have made much of a difference, but they did have the placebo effect on me. At this stage if it wasn’t for my family, girlfriend and friends, I would have been an even bigger wreck than I was. Ultimately it was them who kept me going, I couldn’t give in now. My parents were visiting me everyday, they were my rock, my brother was making a 300+ mile round trip every weekend to come see me, my hero, and my girlfriend spending pretty much every night in hospital with me whilst juggling her final year at university, my love. I had to not just overcome this for my own sake but for my family.
Looking back now I have no idea how everyone around me coped. It was bad enough having cancer but then imagine one of your loved ones having it. I’m glad it was me, I knew I could beat it, I mean fucking hell it was a lot harder than I thought but I have come out stronger.
My final cycle was just as bad as my third. I actually can’t remember much about this stage, I remember the struggle and the incredibly high temperatures along with the horrible infections but apart from that it is a huge blur. Once I had ‘shaken off’ my infections, I was asking my nurses everyday if my neutrophils had increased. Everyday for a good three weeks was a disappointment. One day I had a ‘huge’ increase (literally nothing for the average person) and it was looking hopeful I may be signed out in the next couple of days. I should have known that this wasn’t going to be the case. I mean nothing really went smoothly for me during my treatment, so I should have known my immune system would go straight back down to nothing. Each day I was getting my hopes up to then get frustrated with the outcome. I knew everyday if my results had gone up or down by the look on the nurses faces. They would have a huge smile on their face if it had gone up and would tell me early doors, if they hadn’t I got the look, the look of I’m sorry. When I asked them their face would tighten up as if they were grimacing and just shake there head, in which my reply would normally be ‘for F*&£ sake’ or ‘are you kidding’.
(Catching as much shut eye as possible wishing time would go faster.)
When I came out of hospital for the final time, I had a huge sense of relief. I had done it, my hard work and resilience had paid off. I was walking out of hospital with tears in my eyes but with a huge weight lifted off my shoulder. It wasn’t all over then, I had to try and get my life back into gear, but I started to see the future without the hospital in it. Slow and steady was my moto. I couldn’t jump back into life where I had left it. I deserved some time to do things I wanted. I needed to see the friends I had neglected during my treatment. I didn’t allow for any real social life whilst I was ill, I didn’t want anyone to see me. I was either embarrassed of what I had turned into or scared of catching a cold. I was still a huge germaphobe months after I left hospital, but all these ‘little’ things I had to overcome. I set myself little challenges i.e. going to the cinema. I mean that sounds so stupid but in reality that was a huge step for me. During treatment I wouldn’t shake anyones hand because I could practically see the germs on it. All these ‘little’ things I had to conquer before doing anything stupid like an Ironman.
(That smile when you find out you can go home.)
I am literally the most determined and competitive person you will ever meet, I never thought I would suffer from any mental health issues. Even during my first cycle I was absolutely fine and I didn’t really ‘believe’ in mental health issues. When I was younger I just thought it was people making it up for the attention. I’m sure some of you now will be thinking the exact same thing. I have first hand felt the consequences of mental health issues and one of the main things that progressed this issue was thinking it was just me. Why is it no one talks about it? People find it so easy to talk about injuries to their body but not their mind. So, why am I writing this blog? Is it for the attention? NO. I have written this blog to try and reach out to people who suffer from mental health issues. I want them to know they are not alone. Many people suffer from a wide range of mental health issues, it is just so hard to diagnose as it isn’t visible. I have also written this to make people aware that there is such a thing and it shouldn’t be a sign of weakness to tell someone else that you are struggling, instead it should be a sign of strength. It takes someone with courage to come to you and open up. You should reward them with a shoulder to cry on, as you never know when something similar might happen to you. It has certainly opened my eyes and I hope it makes you more aware. For people suffering now, keep up the fight. Things do get better, I know it is hard for people to understand what is going on in your life but a lot of people will have felt something similar. The key is to keep going and try and find your release. Health and fitness is my release. Find the thing you love the most and make time to do it. Keep trying things until you find the answer. When you find the answer your days will get easier and the dark times will fade.
Thank you everyone who helped me through this period of my life, I couldn’t have done it without you. To everyone reading this, think twice before judging someone, you have no idea what they may be going though. Be the first to offer help if you think someone may be in need.