In 2007, I fell over and shattered the inside of my bone causing osseous fibrous dysplasia, a benign metabolic bone disease which in rare circumstances can turn cancerous. I underwent treatment and a bone scrape. It looked as though all was improving and in 2009 Kate and I had Lilli-Grace, I returned to work and ran the Manchester 10K but over the coming years my condition deteriorated and in 2011, I had my femur removed, which lead to the diagnosis of osteosarcoma.
I was driving through Manchester with my wife, after being shopping and I received a call from my surgeon Professor Grimer at Birmingham and he informed me I had osteosarcoma and that I would need to go to The Christie the following week.
It completely floored me, no one likes hearing the words ‘you’ve got cancer’ or that it is a high grade one and that it is in your bone. It gutted us as a family, but I had to put my thinking head on and start processing. I was given a 20% chance of survival without chemotherapy, this increased to 60% with chemotherapy – it was a no brainer!
Everything moved very quickly and the following week a Hickman line was put in and I had a PET scan, an MRI and started my chemotherapy treatment on a MAP regime, consisting of Cisplatin, Doxorubicin and Methotrexate.
Once I started chemotherapy I couldn’t play with Joshua or Lilli-Grace as I was very tired. Lilli-Grace would sit on me so I couldn't move. When I came home from hospital she would deliberately fall asleep on me so I couldn’t go anywhere. It’s had a massive effect on Joshua, he had behavioural problems and some speech problems, he still has a stammer now.
I became headstrong wanting to know every last little detail of my treatment. I had to know what, where, how, why and everything in between. Knowing the exact timings of treatment so I could be home with the children at the weekend, this was my only time with them. It was critical to me, I was in Tuesday morning and had to be out Friday night.
Cisplatin and Doxorubicin wasn’t so much of an issue as it was timed bags but the methotrexate needed the rescue and sodium bicarbonate to bring PH levels up. Otherwise such high doses could cause you to go into toxic shock, which could kill you within an hour.
So, on my first day of treatment my registrar at The Christie wrote out the whole regime and put everything in order in a folder and made sure I knew it. Anyone could pick it up and see exactly what the regime was and what I should be having and when, so I could be home for the weekend. I had amazing nurses at The Christie, who talked me through chemotherapy and sat with me whilst it was being administered. The nurses would chase blood tests to allow me to go home with rescue tablets to manage the methotrexate. They knew how important it was for me to be in and get home to my family.
After my first dose of chemotherapy I had severe sepsis. After the second dose I had to have a blood transfusion, and after the third dose I had to have platelet and a blood transfusion and then I got an infection. I also developed oral thrush, which was horrific, I could barely open my mouth to put a straw in, my mouth was covered with ulcers, all over my tongue, and down my throat. It caused terrible reflux and I had to take lots of indigestion remedy, which also helped with the mouth ulcers. It also caused severe constipation. I had so much pain going to the toilet.
The MAP regime is the most gruelling, debilitating, sickness inducing, awful regime you could possibly imagine. It is horrid.
From the moment it goes in, it made me feel sick. The anti-sickness medication didn’t work or stop the feeling. methotrexate takes it out of you, it is the worst type of fatigue you will ever feel. I also lost all of my hair, I was bald head to toe including nose hair. However my skin looked great, smooth soft skin, this was the only positive.
I was so exhausted, I couldn’t open my eyes, your mind says one thing but body says another. I felt like I had swum oceans, ridden across land and done marathon upon marathon, your body just feels beaten. It’s truly horrible, I lost 4 stone in weight.
I felt I had to keep going, I had to keep going, I had to get in to the mindset where it won’t beat me, it did just keep coming at me. It felt like everything was working against me, all you want to do is shut your eyes and sleep but if I did that I didn’t know if I would wake up again as it completely and utterly takes it out of you.
At one point my haemoglobin levels reached 2 or 3, they normally have to be between 13 and 17 and I was taken to The Christie, where I was told I shouldn’t have been walking, I shouldn’t be able to stand and I was given three bags of blood to bring my levels back up. I would slip in and out of consciousness and wake up with a crowd around me.
My chemotherapy treatment was for 8 months and finished on the 12th January 2012. Two months later I had my acetabulum (socket of the hip bone) replaced. It didn't work because I'd had so many operations in the same site, leaving my muscles weak and I had lots of scar tissue.
My wife, Kate and I were asked if we wanted any treatment to preserve my fertility in case we wanted anymore children. We already had children and felt very blessed so thought if it was going to happen, it would. And something amazing did happen in 2014, Annabelle was born, it was such a great surprise!
For the next few years I carried on as best as possible with a stick and crutches but my leg never did get strong enough for me to trust it. In 2017, I was playing with Joshua in the garden, throwing a ball and my leg went from underneath me and I just thought ‘I can’t do this’ so I made the decision to have an amputation. It would be a hip disarticulation, meaning the whole of my leg would be removed.
I had to be assessed at an ability centre and visit a counsellor and pain clinic before I could have the amputation. I just wanted to play with my kids in the back garden without fear of falling or hurting myself.
Since the amputation I’ve got my life back. It has been a long long slog of recovery from chemotherapy and I had 10 operations in total, I still don’t think I am fully over it, but I can play with my 3 wonderful children on the floor or in the back garden.
My memory is still affected, it’s nothing like it used to be. I really need to concentrate for things to sink in, I can have a conversation then 10 minutes later forget I had it. My energy levels are nowhere near what they used to be. I suppose it becomes daily life and you just adapt yourself so you don’t see it all the time.
My wife Kate has been amazing and we’ve had friends and lots of family support us. Kate made it as normal as possible for everyone. She never let me know how much it was affecting her. We made the most of the days when we could go out together. She’s amazing.
My diagnosis also affected us in other ways it would ruin plans and stop us from going out. We couldn’t go to the pub and see friends it killed off any social life. We didn’t do anything for so long until the amputation.
I have found my own interests. I have learnt to ride a motorbike, as it gave me something to concentrate on away from the routine of treatment. It’s been like my time, I didn’t have to think about treatment, hospital appointments, nothing apart from being on the bike. It was a massive help. I don’t think I would have been as positive if hadn’t done something to help cope. It gave me escapism!
Do something that makes you feel human, rather than a patient. Do something you’ve always wanted to do that allows you to escape from it all.
Since my amputation I have become involved with the Bone Cancer Research Trust following an open lab visit at Sheffield University with Professor Allie Gartland and her team, demonstrating the research they do into bone cancer. It felt brilliant to find the Bone Cancer Research Trust and I was made to feel so welcome.
I was then invited to accompany the Bone Cancer Research Trust as Patient Ambassador to the British Sarcoma Group Conference in Birmingham in February 2018, and again in London in 2019. Ever since I have continued to promote the work of the Bone Cancer Research Trust in my role as Patient Ambassador.
I have also taken up wheelchair racing after a promise made to a friend in a pub on Father's Day in June 2018, when I promised to take part in the Manchester Marathon in April 2019. I went on to join Stockport Wheelchair Racing and continue to keep racing.
After my amputation in 2017 I made a promise to myself that I would try everything I possibly could, even though it may be harder at first. If I keep at it, maybe it'll become easier. From making a cup of coffee and getting it to the sofa from the kitchen (without spilling any) to completing 2000 burpees in a month and many other challenges for the Bone Cancer Research Trust.
There are still days, weeks, months where I have to slow down and take it easy because the treatment for bone cancer has had lasting effects on my health - pain, fatigue, and my remaining leg does take a lot of punishment (especially the burpees!) but the fitter and stronger I am, the long term side effects are minimal and I can either adapt to or overcome the challenges in dealing with the long term effects of treatment.
I think the work the Bone Cancer Research Trust does, raising awareness, supporting patients and funding research to find new treatments, reduce side effects and increase longevity of life for bone cancer patients is incredible.
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