Cancer As The Start Of My Journey
My story started when I was 15 years old. And although the diagnosis from back then has little relevance for my life today, those days have had an immense impact on me - also in a positive way. Those days have shaped me and made me who I am today. From one day to the next my life changed completely. Suddenly nothing was as it used to be.
I can still remember vividly how my mum and I drove to town in order to get a CT scan of my leg. The leg had been hurting for weeks and we wanted to know why. Back then we had no idea, that we would never again forget this very day. It was the day I was diagnosed with a tumor in my bone.
At age 15 I didn’t know what a tumor in my bone was. But I sure noticed that something was wrong when my mum burst out in tears. And I was sitting there, clueless about what were to come next. When we were still at the orthopedic consultant’s office, I did not dare to ask what all this meant. But a short while later my mum explained that I had bone cancer. A pretty nasty kind of bone cancer, actually.
For a short while my world fell apart. From then onwards everything happened like in trance. We picked up my dad and went straight to hospital. This place would be the centre of my life for the time being. No more school, no more being exposed to large crowds of people, and only little energy and time to see friends. My parents and grandparents hardly left my side. For me that was important as it enabled me to get through those hard times; it enabled my to get through the many bad days filled with pain, with uncertainty, with numerous surgeries and many other changes. It was during those days that I first experienced the huge impact our thoughts have on our bodies and our life in general. I learned to live in the moment, to see the good in each and every situation, even if this good was very weak, fragile, tiny. I learned to fight for each day anew.
After about a year my fight with cancer came to an end. And yes, we had won. And the cancer had lost. The tumour had been removed and the bone had been replaced by an artificial knee joint as well as an artificial tibia. So far, so good. But only six months later I faced my first severe set-back. As one of the side effects of the chemo therapie, my wounds didn’t want to heal properly. Bacteria gained the upper hand and the endoprosthesis had to be removed again. So for an additional three months I had to stay in hospital, not able to leave my bed. My leg was flushed with antibiotics to get rid of the bacteria before the prosthesis was inserted again. A time I only remember vaguely.
Starting A New Life
But finally the moment arrived. I learned to walk again. I started a new life. And soon I noticed that everything had changed. I had changed. People around me had changed. People who were my friends before I went to hospital suddenly didn‘t know how to approach me anymore after those challenging times. Friends with whom I shared so many precious moments and with whom I could talk about anything before - suddenly we had nothing to talk about anymore. They had moved on while I was in hospital. And my life had taken a different turn, too. It had develop along a separate path. With 16 I had matured, had become an adult. At least compared to many of my friends. I had learned what really matters in life. As a result I stopped worrying about all the little, insignificant things in my life. Instead I learned to be immensely thankful for each and every precious moment, for each and every little bit of progress. From then on I was able to enjoy life to its fullest. I enjoyed the little things in my day to day routine, more than I ever thought possible.
All this helped me eleven years later, when it was time to take the most difficult - and at the same time also the easiest - decision in my life. While the leg that I had surgery on was a great companion throughout my youth, my training, my first job and my university days; while I had a great life, despite all the limitations and the surgeries, I somehow felt fear and hesitation. Things I used to enjoy - like dancing and surfing - weren‘t possible anymore. Or I didn‘t dare to try them again. I used my leg as an excuse, used it to shy away from new challenges and from making use of upcoming opportunities. In a way I had lost part of my courage and my lust for adventure. Somehow I accommodated with this new development and found new hobbies. But in a way this feeling of losing out on something never went fully away.
Throughout those years there was always one thought in the back of my head. I knew that one day parts of my endoprosthesis - or all of it - would have to be replaced. It was never a question of if, but a question of when. Nobody knew when this would be necessary. But we all knew that it was only a matter of time. And my fear about this moment grew every time I had aching muscles, every time there was an unexplained pain in my knee, a light swelling from the summer heat or the like. I knew, when the moment would arrive, things wouldn‘t be straight forward. Replacing an endoprosthesis is a challenge under any circumstances. And given the fact that I had already lost quite a lot of my bone mass during the initial surgery, any replacement of the endoprosthesis would be very difficult.
Discovering An Amputation As A Viable Option
The idea of an amputation had been in my mind for some time. But in a way I was not yet ready for it. But about a year ago, all of my fears became a reality. Once again bacteria managed to enter my body and make themselves comfortable around the endoprosthesis. This new infection weakened my body. I have no idea where these bacteria had come from. But it meant that the metal implant had to be taken out once more. It meant that I had to stay in bed for yet another month without the endoprosthesis while the bacteria were treated with very strong antibiotics and the implant was sterilized. After four weeks of severe pain, major anxieties and a great deal of uncertainty a new endoprosthesis was inserted and I was finally allowed to go home.
So I had to learn things anew. Things like walking etc. By then I was a bit of a pro in re-learning how to walk. So this should have been straight forward. But it wasn‘t. As it turned out the treatment didn‘t kill all the bacteria. And for more than half a year my wound didn‘t want to heal properly. These days were worse than anything I had experienced before. I wasn‘t able to leave the house by myself. Due to my weakened body I could hardly do anything. I was in pains and felt isolated from the world around me. I was fighting. But the bacteria proved to be a strong opponent that put up a fierce fight - with everything that comes with such a battle: High temperature, painful joints, a hot and swollen leg with blisters filled with pus.
When things got worse, I headed back to the hospital. The A&E department waved me through to the ward right away and we started with yet another round of antibiotics. A new date for yet another surgery was set. Once again the endoprosthesis had to come out. Another three weeks went by; three weeks with their fair share of ups and downs.
Taking A Bold Decision And Seeing It Through
It was during this time when I suddenly knew one thing for sure. I didn‘t want the endoprosthesis to be re-fitted into my leg. I wanted an amputation. While such a decision might sound like an incredible hard one to take, for me it suddenly seemed like the obvious thing to do. Taking this decision was easy. I had been playing around with this idea for a long time. I talked with others and had long discussions with my family.
This was not a decision against my leg; not a decision taken out of frustration and pain. No, it was a decision for my body and for my life. A life I wanted to life according to my ideas, free from fear and internal hesitations. I wanted to grow and try out new things. Things that seemed impossible. I had more and more ideas of all the things I could try once my leg was amputated. Things I would finally be able to do. All this opened a new, a wonderful world for me. A world I wanted to explore.
My biggest fear at that time was how to tell my husband and my family that I had decided that an amputation would be my most promising shot at a new, fulfilled and rewarding life. As it turned out, this fear was completely unnecessary. Instead of shock and reservation they welcomed this decision with relief and understanding. I felt immensely thankful that I was able to take this decision autonomously. The amputation was not a medical necessity. It was what I wanted. And I was happy that I was able to take a decision for a better life, thankful that a modern prosthesis would allow me to lead a normal life.
And - how should I say, knowing fairly well that many people will find it hard to believe - I have not regretted this decision. Not for a second. I love my life, my new life, the life after the amputation. I might be missing a leg. But finally after eleven years I feel complete, and I finally feel like myself again.
This doesn’t mean things have always been easy. In the initial days after my amputation I found it hard to meet other people, especially my friends and relatives. Many of them found it hard to comprehend my decision, even harder to support me with it. I found it hard to see why they pitied me and rejected my decision when it was obvious that this very decision made me happy. I tried to understand, knowing that people who didn‘t know my journey might have reservations about my decision, fine. But it was hard nevertheless.
While I felt great in one way, finally healthy and immensely happy, facing these reservations also made me feel small and sick and I constantly felt as if I had to justify this decision. But by now, half a year after the amputation, I moved on that. Let no-one tell you what is good for you and your life. Only you know what is best, based on your experiences and your convictions. No-one knows the journey that led to your decisions. And you do not need to justify these decisions. No one went through the experiences you went through. And so no-one can comprehend them in a way you can. Find people who are supportive of you and your decisions. With these people on your side it is so much easier to go through the hard times in your life, go through them unharmed. If we allow it, those challenging times will make us stronger, even if it doesn‘t feel like it right then and there. Looking back, we learn from them, grow, mature. It is up to us if we allow ourself to drown in self-pity or to make the best of the situation and grow.
"Now I Am Ready For A Life Full Of Adventures!"
I now wear my prosthesis full of pride. My prosthesis shows what a strong human being I am. It’s proof that I can handle the challenges that are thrown at me. I am ready for a life full of adventures. I am ready to fight for the things I want to accomplish in my life. After only six weeks with my prosthesis I am busy planning my countless adventures. And I can only guess where this new and exciting journey will lead me. Despite having lost one leg, my courage grows by the day and I am finally ready to discover the world and grow beyond my wildest dreams.
Guest post by Jasmin Lindenmaier. Jasmin is a 28 year old above the knee amputee who decided for an amputation to live a happier life free of fear and anxieties. With this new beginning she wants to close a chapter in her life and set out on a new beginning, exploring the world and take on new adventures. You can follow her on Instagram @prostheticlife.