Written By Team Willberry . - March 04 2024
Hello, my name is Matt and over the next few months you will get to know more about me, as my family and I look to raise awareness and funds for Hannah’s phenomenal charity (more on that later...)
So, who am I?
Well as I have already said, I am Matt… I am 32 years old and live with my wife, Lizzie in Somerset. Lizzie is a keen eventer and I enjoy cycling and golf in my spare time, we lead pretty normal lives. However, this wasn’t the case nearly 15 years ago.
My story … A game of chance
In 2009, I was sitting my A-levels and thinking on the next stage of my life. I had only a few weeks left of school before a summer of freedom, and starting university life in Manchester.
On one idle Tuesday (the kind that can blind-side you, as per the famous Baz Lurhmann lyric) I was heading to town to get some lunch, but the gate to exit the school was locked. It was a few hundred metres to walk around, but as time is precious for an 18-year-old (and being the invincible teenager I was...) I set about scaling the security fence and continuing my journey to town. Scaling the fence had been simple, jumping off the top also not challenging, the landing left much to be desired... My shoe had become wedged on one of the security spikes at the top of the fence, leading to me landing headfirst and heavily on my left knee. I was taken to A&E for an x-ray, which revealed I had been a lucky fool and that it was only bruising (or so we thought).
Over the weeks that followed I started to feel a dull ache in and around my left knee. It was not like any other ache I had experienced and its intensity, almost a burning sensation, grew with time. I put this down to the fall at first, then growing pains, then after several weeks I felt I needed to get this seen to, as the pain was unrelenting and building with every day. The doctor at my local GP advised that as I was sporty and a keen footballer, that it was most likely ligament damage and advised that I undertake 12 weeks of physio. With an upcoming move to Manchester University, we agreed to start the treatment there, and that I should register with the GP as soon as I moved.
I moved in September and threw myself into full-on student life. I made a lot of good friends, enjoyed the nightlife, trying out for the sports teams, oh and starting to study for my degree (must be honest and say with full disclosure, I am not sure I did very much of the latter). Playing football was when the pain really intensified in my knee, so much so, that during a match I had to come off injured after 20 minutes of playing.
That evening was my freshers’ ball, and I was not going to miss that for some pain in my knee. Little did I know that the next series of events would cast the dice that would ultimately save my life!
Rolling the dice
Whilst at the ball, I took a knock to my knee. Nothing major, but the pain was excruciating. It was as if someone had set fire to the inside of my leg. It was like nothing I had experienced before, and it was so debilitating that I was transferred to A&E for investigations.
In the early hours of the morning, I had an x-ray, which showed a white mass on the knee. I asked the radiographer what that was and whether that was normal. The response was it that knee was calcified but not to be overly concerned. It was advised that I rest and continue with the 12 weeks of physio. Had that diagnosis been the final act, there is a very good chance that I would not be here to write my story today.
Over the next few days, I went back to student life, until one afternoon (probably another idle Tuesday) I take a call from the GP saying that I needed to come and see him. I said I had other commitments (let’s be honest no student has any real commitments) and that I would make an appointment. It was at this point the GP became somewhat insistent that I headed straight to the surgery and to meet with him. I didn’t think too much about what was about to be said, but one of my close friends from school had overheard the conversation and said they would come with me.
Once I arrived at the surgery, I was sent straight to the GPs examination room. I knocked the door, entered and no more than 3 steps into the room I was informed that I had cancer!
What are the odds?
I don’t recall the rest of the conversation at the GPs surgery, but it was brief, very brief. I went back to my halls and phoned my Dad. He said ‘I’m on my way’ and with that he put down the phone. I didn’t hear from him for a few hours, whilst he travelled to Manchester. Little did I know at that time, but he had managed to arrange a biopsy closer to home in South Wales the very next day, and two specialist consultants to commence treatment with immediate effect.
I left Manchester University that evening, I have not been back since. The next couple of weeks were a whirlwind, being taken from one hospital to another to undergo all forms of tests. The conclusion of which was that I did have Osteosarcoma and that the planned treatment was limb-sparing surgery, bookended by 28 weeks of high-toxicity chemotherapy.
The treatment
The treatment for Osteosarcoma is brutal and particularly invasive. I had not appreciated quite how challenging it was going to be, but after my first round of chemotherapy in October 2009, I found out first hand.
Over the course of the chemotherapy, my body grew increasingly weak. The first 10 rounds of chemo were spread over a weekly course, followed by limb-sparing surgery a few weeks later. The surgery was scheduled for the end of January, but after the 10 weeks of therapy I was so weak that it was questioned as to whether I would be fit enough to withstand the surgery. My blood levels were neutropenic, and I was required to have injections to boost the blood counts and platelets. My weight was down considerably and due to the severe ulceration in my throat and mouth, and the constant nausea, I was barely eating. My hair had all but fallen out and meanwhile, the pain in my leg had continued to worsen, to the point of total dependency on crutches.
Luckily, I was well enough to have the operation, as planned in January, but the recovery would be long and painful. My leg was able to be saved, but the extent of the prosthetic that now replaces my knee, most of tibia and some anchored into my femur, as well as total reconstruction of the muscles in the leg, meant that learning to walk again would be a real challenge. Add into the mix the 18 further weeks of treatment, I was not in a good way.
During my follow-up treatment, I would count down the seconds until I could leave the hospital and have some down days. Unfortunately, my body was struggling and my mental resilience was straining, such that everyday tasks had become a trial and most of the time I just wanted to sleep. All I could long for was the day treatment ended and my new norm could commence.
Unfortunately, the treatment did not relent, week after week, after week, psyching myself up to go to a hospital for treatment, which ironically was causing more immediate pain and suffering, but in the knowledge, it could save my life. But then….
The final leg
16 weeks into my final course of Chemo I hit rock bottom. My body was rejecting the chemotherapy and was retaining fluid. One of the chemotherapy drugs (methotrexate) was critically poisoning my body and my body was fighting overtime to pass the drug through my system. At one stage it was feared that we had gone too far with the treatment and that I may not survive the night. Thankfully I did, but my chemotherapy was over, my body had said that was enough. If I had anymore at that time I am certain I would not be here writing this today, but what none of us knew, was whether the treatment to date had been successful.
The answer was, it had. I write my story nearly 15 years on from when the tale began, and it has been incredibly difficult to tell. I am incredibly fortunate to be alive. I owe my life to a series of fortunate events, some incredibly talented individuals and to my family, who supported me each day. Yes, I have been left with the scars of the treatment. I now have a prosthetic in my leg and will never run or play contact sport again. My body feels the lasting effects of chemotherapy, in that I am now deaf in one ear, have constant tinnitus and my organs have been aged from the process. But I am still alive, and for that I am and always will be thankful (more than words could ever explain). But I know that for Osteosarcoma patients this outcome is often not the case. Too many individuals suffer relapse (mainly within 5 years of first treatment) and survival rates can be as low as 25%, this is not good enough.
Over the last few months, I have had the privilege of meeting Rachel and James (Hannah’s parents), and her grandmother, June, as well as the other fantastic trustees and I have been humbled by the power of Hannah’s legacy and what they have, and to continue to, achieve with her charity. After thinking through options to support, I floated the idea of a challenge and it was met with resounding support. It has been fantastic knowing #TeamWillberry will be with us every step of the way, aiding our fundraising campaign and providing support as and when required. So, what is the challenge?
The ride – The Travelling Willberry’s
No, not the band, but instead the charity’s mascot. The aim is to take Willberry on tour. Over 13 days, we will transport Willberry around the length and breadth of the UK, raising funds and awareness as we go. Willberry will be stopping at some of the main equestrian eventing sites in the UK; starting at Badminton, moving on to Blair Castle, back down to Burghley, across to Blenheim and then finally finishing at The Hannah Francis One Day Event, held at Southfield House, home of Hannah’s pony club, and run in aid of her charity. The distance of this journey? Over 1,100 miles...
Given my disability, the ride is extremely challenging, in that most of the work will be undertaken through my one good leg, with the other largely redundant and just coming along for the free ride, and the marketing angle!
Most of the planning is complete, and training is well underway (and the nerves are starting to creep in...), but I can't wait to bring you on the journey with me.
Seeing Hannah’s story reminded me of the brutal nature of Osteosarcoma treatment, and how ‘lucky’ I am to still be here. Hannah inspired me to do as much as I can to raise awareness, and funds, to keep kicking this horrific disease. So, if you do have anything you can spare, please visit my JustGiving HERE.
Your donation will go a long way to continue to raise funds for life saving treatment which may, in time prove invaluable in making Osteosarcoma survival rates higher, and the treatment to get there all the more palatable.
I thank you for taking your time to indulge my story, and I thank you in advance for your generosity.
2024 HOLLY DENEGRI
