Speaking from Experience

Jamie is a long term limb reconstruction patient at King’s Hospital. He shares his personal experience of life during treatment and inspiring words of advice in a Q&A.

Introduction

My name is Jamie, I am 30 years old and I work in the TV Industry as a Production Coordinator.

I enjoy travelling, going for brunches, seeing friends and family, playing chess. I enjoy walking in nature, swimming, cycling and the odd game of golf in the summer.

What brought you to King’s Limb Reconstruction Team? 

I was introduced to the King’s Limb Reconstruction team when I was a child at approximately 3 years old. I was born with a congenital condition called Hereditary Multiple Osteochondromas, which affects bone growth and development, causing bony growths called exostoses. I have been under the care of King’s ever since. I have had multiple surgeries and am still able to count how many I have had with my fingers and toes! I feel lucky to still be able to do that.

What treatment did you require and what was the duration?

I have required multiple surgeries throughout my life. I have had operations on my fingers, arms, shoulders, back, pelvis and numerous surgeries on both of my legs. These surgeries were required to remove bony growths, which caused me pain and discomfort, alongside restricted motion of my joints.

In the last 5 years, I have had several surgeries due to valgus deformity in both my legs and limb-length discrepancy, because of this I have had surgeries that cut and reshaped my bones to change the alignment and correct the deformity.

I have had 19 surgeries throughout my life, with the vast majority being when I was a child. I have several plates in both my legs and have had one Taylor Spatial Frame.

How did you feel during your treatment?

During each treatment and throughout each rehabilitation, I felt incredibly supported by the King’s Limb Reconstruction team. They made me feel at ease, strong and never alone. I have a very good rapport with the team that looks after me, built on respect, honesty, and trust. I owe them my life and without them, I wouldn’t be where I am today, they’re a family to me.

During my treatment, I am sure I am not the only one who has struggled with anxiety and depression. I believe mine was caused by several reasons, mostly due to stress related to the recovery; speed of recovery, the return home practicalities, financial costs, return to work, etc, and none more so, than feelings of guilt about depending on others. As someone who is very independent, it’s difficult to take.

The Limb Reconstruction team really helped me throughout, physically as well as mentally, they always communicated with me and were very responsive, which must have been hard given how incredibly busy they are. They also made me feel like I was not alone and that we were in it together, which meant everything to me.

What were the day-to-day issues and how did you manage them?

My day-to-day issues were daily tasks including, but not limited to; showering, cooking, getting dressed, cleaning, and general tasks we often take for granted.

One of my main issues is the mental stress of recovering from a surgery, such as anxiety and self-doubt, alongside experiencing and managing the pain. I am someone who doesn’t do well with sitting still, I like to push myself and I like to have long-term aims and set goals. With every surgery, comes a hurdle, a physical and mental hurdle which comes before me, often unexpectedly.

Although I have had several surgeries, each surgery is different and the process of the recovery is different. I am still learning how to manage the physical and mental implications, I’ll be forever learning. But I do know one thing, I had to do my best to be kind to myself, trust the process, believe in myself, believe in others and be as positive as I can always be, because no matter what has happened to me, or will happen to me, it can always be worse.

During my surgeries, I reflected on my recent and past achievements, and I worked towards getting back to that moment, that moment of happiness.

In the months leading up to a recent major surgery, I had prepared and been on shoots in the Lake District (where I completed my first ever hike), inside Burnley Football Club stadium (empty and full), amongst thousands of Burnley Fans as they did their title parade through the city and finally a shoot in Croatia with the most wonderful team.

I got through the only way I know how, by giving everything I have and playing my part to the best of my ability which helped me in the lead up to my surgery.

How did this affect your work and life in general?

The affect the surgeries have had on my work and life is massive, especially since being an adult. When I was a child, the two main problems I had were that I often needed to reschedule my exams and I was bullied a lot. I always had support from my family. Since becoming an adult, these problems do not exist anymore, but many other problems do.

Throughout my recent surgeries, my work and life were affected. There were big financial stresses, having to pay bills with the rise in cost of living and for the majority of the time, only having statutory sick pay. All this, alongside trying to recover from a major surgery can be hard. Having difficult conversations with work which was caused mainly by my own insecurities; scared if they will want me back, scared that they may no longer need me, scared that I had let them down.

Regarding my life in general, I struggled with accepting help from others without feeling like a burden, I often struggled going out in public places, I struggled sitting still and trusting the process of recovery.

I struggled with members of my family, they were not as supportive or did not express their support to me, this may be because they think I am used to having surgeries and I didn’t need the support, but I did, I just struggled to accept it or ask for it.

Do you think your condition or treatment had an impact on your family?

I believe my condition and treatment only had an impact on certain members of my family. My father has the condition, he had one surgery when he was younger. I know he feels guilty about giving me the condition. I do not blame him, and I never will, but I believe this affects him and as a result, he struggles to support me because of it.

I have a huge family, but no one understands the affect it has on me or how difficult the recoveries can be or the work and personal struggles, but they wouldn’t, as they haven’t experienced it or anything similar.

My grandparents are supportive, but again, I am quite reserved and independent. Perhaps this is part of the reason why I feel it has not impacted my family as much as it may have if I opened up on the struggles more and did not feel like a burden.

How has Rebuild supported you?

Rebuid has been absolutely invaluable, supporting me from recovery to rehabilitation. Since its creation, they have funded the appointment of a specialist Physiotherapist and provided additional specialist Nursing, both of which, I am lucky to have felt the enormous benefit of. The website is very informative and easy to navigate, it has brilliant advice for someone going through limb reconstruction treatment and also their families or friends, as it affects everyone in some way.

I am also aware of the Citizens Advice Service for patients which can be used for financial and work concerns.  I haven’t personally used this service but I wouldn’t hesitate if I felt I needed it. I encourage patients to maximise the services available, it can be life changing and you deserve it, they love to help and you’ll always feel supported.

What words of advice would you give someone starting out treatment?

The main advice I can give someone is to be kind to yourself, you’re amazing. Mental fortitude is everything and it will determine how you handle adversity, there is light on the other side, however long it takes, days, weeks, months, years, there is light and it’s waiting for you.

Physio is incredibly important, keep on top of it, make it a priority, invest it in, celebrate each win, each bit of progress.

Surround yourself by the people who make you feel better and make you smile. Focus on the rebuild, start small and focus on the little wins, step by step. Accept help, don’t feel guilty, you deserve it, we all do.