Hey everyone! Today I'm pleased to present to you a story that should give us all hope...the story of our friend Colin MacKenzie and his successful run in the London Marathon, after having had cervical Schwannoma surgery. I feel like such stories are truly needed, because for some people, Schwannoma pain can make even the most basic things extremely difficult. For some, just going out to get the mail is an ordeal. Or taking care of a child. Or just making it through a shift at work. However some survivors are people who take the norm and stretch that possibility to the max - and Colin MacKenzie is one of them. Based in the UK, Colin trained for and completed the London Marathon in 3:41:23, after having had surgery for a cervical Schwannoma. Colin was kind enough to answer a few questions about this experience, and we thank him for taking the time to do so - and for demonstrating what is possible for athletes and anyone else who has had a Schwannoma. - Neil
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1). What were your symptoms before your Schwannoma was discovered? How did it affect your running before it was found?
The slow growing nature of Schwannomas meant that my symptoms came on very slowly over a long time. I gave up rowing in 2006 shortly after my daughter was born (but before I noticed any symptoms) and fell out of the routine of exercise. I had a few attempts over the next few years to get fit again but did start to struggle a bit with my feet. The best way to describe it is the feeling you get just before your foot falls asleep, the not quite numb feeling and not quite pins and needles. In some ways it felt a bit like my feet were drunk - I couldn't really rely on them landing correcty and in fact did sprain my ankle when playing around in the park. Over time my legs felt really tired all the time despite not doing any exercise. It is worth saying that I had no pain at all. By the time I went to see my GP I couldn't even run for the bus!
2). When your Schwannoma was located, where was it found? What kind of procedure was performed and was it successful?
I was referred to a neurologist who sent me for a head and neck MRI. He told me he was looking for either compression (eg a tumour of some sort) or inflammation (eg MS or Motor Neuron Disease). It turns out it was a Schwannoma on my spinal cord at C1/C2 (right at the top of my neck). It was surgically removed on 13 June 2012. A follow-up MRI a few months later confirmed it was completely removed and a further MRI in 2017 showed no regrowth. The only side effect I've been left with is a numb patch on the back of my head which corresponds to the specific nerve that was damaged.
3). How long did it take you to train back up to the strength required to run a marathon? What was that process like and how did your body feel after having gone through the experience of having the Schwannoma?
Recovering from the Schwannoma was one thing, recovering from the surgery was another. In the days after the surgery I could feel the feeling returning to my feet quite quickly as my spinal cord decomressed. My neck was very sore and stiff from the surgery though. It took a good 6 months before I had most of my movement back and a year before I felt normal again. August 2013 was the start of my get fit campain. I started on the treadmill and cross trainer before building up slowly to 5km. I was lucky to discover parkrun which is an organisation that puts on weekly free 5km runs in parks all over the world now. This helped with motivation and gradually my times improved. I built up over the next few years and found out I had a place in the 2017 London Marathon in late 2016.
I think the key was taking it slowly and listening to my body. I didn't have any residual symptoms from the Schwannoma, my movement was back to what it was before and it just felt good to be able to run up a flight of stairs again. If I'd been told the day before surgery that the best outcome was that my symptoms wouldn't get any worse I would have leapt at it. But here I was 4 and a half years later starting to train for a marathon.
4). How did you feel during the race? Did you find that it the feelings in your body were greatly different than before the Schwannoma?
The race was an amazing experience. The atmosphere of the London Marathon is incredible. Crowds line the whole course and there is a constant wall of noise of people shouting your name and encouraging you on to the finish. Comparing how I felt now to before surgery was like chalk and cheese. In the months before surgery I couldn't run at all and even walking was becoming difficult. But if I compare back to my rowing days then there was no difference (apart from the march of time from which none of us are immune!) My training had gone very well. I'd clocked up just over 500 miles in the 16 weeks before race day so I was ready for it. I held back a bit in the beginning and it was only at 15 miles where I caught up to my target pace. Rounding the final corner in front of Buckingham Palace was an emotional moment and crossing the line was real celebration of everything I'd been through to get to this point.
5) Lastly, having gone through this experience, what are some of the key points of advice that you'd like to offer to other runners or athletes trying to train back into shape following a battle with a Schwannoma?
Don't try do too much too soon. Runners I know are notoriously bad at taking time to recover from injury. Listen to your body, and get advice from a qualified medical professional if you have any issues. Join a running club or group. Doing it with people around you is so much easier than trying to go it alone. Enjoy it!
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You can email Colin at: colin.mackenzie@rocketmail.com
Showing posts with label fitness Schwannoma. Show all posts
Showing posts with label fitness Schwannoma. Show all posts
Friday, June 1, 2018
Monday, October 23, 2017
The Inspiring Story of Luke Farrell, Pro Baseball Player & Schwannoma Survivor
Awhile back, a friend of our Schwannoma Survivors page, Michelle Santagata, told me about an exceptional young man by the name of Luke Farrell. Luke is a professional baseball player who is himself a survivor of a brachial plexus Schwannoma. Michelle's own son Craig, also a baseball player, had greatly appreciated the story of a top level baseball player who had faced down the exact same kind of Schwannoma that he is now dealing with. Connections were made and I was fortunate to hear back from Luke and he kindly agreed to do a short 3 question Q and A for us. We greatly welcome Luke's amazing story - and we are so grateful to the example that he provides for Schwannoma survivors everywhere.
So, for all those people who are fighting a Schwannoma right now - people who are wrestling with fear and anxiety for their future, we are proud to offer this fascinating and very positive insight into the experiences Luke, as he wrestled with a Schwannoma, and fought his way to health and a pro baseball career. Our thanks to Luke for taking some time to speak with us! - Neil
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Questions:
1) Being a top level athlete requires a great deal from the human body. Many of us would love to know, what it was you felt (before removal) as you became aware that you had a Schwannoma? Simply put, what was it like to be a baseball player who finds he has a Schwannoma?
When I first found that I had a tumor I was told that we couldn’t accurately determine what it was without surgery. A biopsy was not possible and there were no other indications that left my doctors with the ability to make a diagnosis. Seeing the scans and hearing my doctors tell me they weren’t sure what it was that I had made for some really frightening, uneasy days. My plans to head to college and continue playing baseball just weren’t possible at that time. I quickly learned that a person’s health is the number one priority. It didn’t matter that I had big dreams for my future or that class began in two weeks. Everything else sort of stops and you’re left to face what’s in front of you. I’m thankful that I had people caring for and supporting me as we faced it all head on. Once the surgeries and diagnosis were made, then I could shift my focus to my recovery. Those dreams I had before all this craziness were still intact, they were just made maybe a little more difficult to achieve. I had lost about 25lbs and was in no shape to compete against Division 1 teams. But that was my goal and I was going to do everything I could to make it happen. I chose to believe that everyone is faced with their own set of challenges and this happened to be one of mine. When my schwannoma returned two years later, the process was similar. Absolute shock and a tidal wave of emotion, then trying to shift all my focus on solving this problem and beating it. In many ways, the desire to get back to baseball and school gave me a ton of determination to get through this time.
2) Your story about how bravely you faced surgery and recovery are well known ( we will provide links to articles telling the story ). I would be very curious to know, what was in like to be a baseball player on the road to recovery from a Schwannoma? What were the strategies you used to stay physically and emotionally strong through this process?
Recovery presents a lot of challenges both mentally and physically. In my head I still had a picture of what I should be able to do and the way my body should work on the field. Learning and accepting those limitations wasn’t an easy process. But, I was told that they could be made temporary and I could return to almost completely “normal” if I followed my physical therapy. At that point things were back in my control, which felt great after so much wasn’t for the last few weeks. I approached therapy with the same dedication and effort that I tried to put forth in baseball. In that way it was therapeutic both physically and mentally.
3) Lastly, I said to you previously that I had known a great many people who have accomplished fantastic physical and mental goals after having endured Schwannomas. A friend of our page recently completed the London marathon in very competitive time after enduring a spinal Schwannoma. But you are the first professional athlete that I have spoken with who has had Schwannoma. Being in the unique position you are, what are the words of hope that you may like to offer everyone from young athletes, to average people - moms, dads, and friends who are struggling with Schwannomas?
First, I’m thankful that you reached out and introduced me to this group. Having such a rare tumor has made it difficult to communicate to people exactly what it is that I have. At times that can be very alienating, something I’d think others with a schwannoma have felt. To be able to share and learn about this diagnosis with others who have been affected is really important.
If I were to give any advice to someone reading, it’s to try and take control of your fight as much as possible. Once I got over the initial shock, I did what I could to learn about what it is that I have. With the help of my family, we asked question after question of the different doctors we met until I felt comfortable moving forward. It forced me to have really candid conversations and make difficult decisions at a young age. I also knew I could control my attitude and my determination. When my first surgery failed I felt total despair. To wake up and hear that a 10-hour operation left me no closer to beating this thing is a feeling I don’t have the words for. But in my mind there was never another choice other than to move forward. Fortunately, my second procedure shortly after worked. When I learned my tumor had completely regrown just two years later, we went through this process again. We asked all our questions and made a plan. This time I was faced with radiation, but I wasn’t going to just stop and let this define me, I had to move forward. As of a few weeks ago I’m proud to say I’ve been healthy for 6 years. Each year when I go back for my scans I feel the same anxiety and the same fear. But I do my best to control what I can and go from there. Looking back, these moment have really shaped me and in many ways ended up having a positive impact on my life.
Photo: Luke with Dr. Jay Loeffler
Photo: Luke with Dr. Jay Loeffler
Articles about Luke:
Follow Luke on Twitter at:
@elFarrell52. https://twitter.com/elfarrell52?lang=en
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