“A disease comes unexpectedly, from nowhere. You need to learn to live with it because it’s there… it just is. However, how you live with it is entirely up to you.”
At the Alivia Foundation we strongly believe that an active and brave attitude is key when fighting against cancer. Meet Justyna, previously a beneficiary of our Foundation, whose story shows how persistence and strength can beat cancer.
Today, I am grateful for a lot. I not only get to live my life, but I get to live it to the fullest. I would like to thank everyone for their support!
My health has stabilized, so I am putting my fundraiser on hold and instead will be focusing on my loved ones and my career.
However, there are still others who need financial help for the fight against cancer! Remember that you can keep on helping others!
A while back, when writing my cancer story, I said that I was happy before being diagnosed. Right now I am not sure if I really was. Cancer really opened my eyes. I was able to see life from a different perspective and to really appreciate it. During my illness I learned what great pain, fright, suffering and anguish felt like. But I also discovered the feeling of gratitude – gratitude for being alive. I had the pleasure of meeting many wonderful people along the way, from whom I learned and gained inspiration and energy.
Here is my story:
My name is Justyna and I am 31 years old. I have a not-so-perfect family that I love more than anything in the world.
In 2012 my world turned upside-down. In October of that year, I was diagnosed with a huge sacral tumour which had also spread into my smaller pelvis. My whole life fell apart in one moment.
I can’t even explain the emotions I felt after hearing the diagnosis. All I knew was that nothing was ever going to be the same again…
The tumour was an extremely rare form of cancer and was situated in an unfavourable spot. It originated in the spinal cord, going up and covering all the nerves in the sacrum.
My first surgery was in November 2012. Unfortunately, the doctors were only able to remove a part of the tumour, which ended up doubling in size and destroying the entire sacral structure only a year after the surgery. We looked for help everywhere: Warszawa, Bydgoszcz, Łódź, Poznań, Konin, Gliwice, Piekary Śląskie. We met all the best oncologists and went to all the best cancer clinics. Some doctors tried talking me out of surgery altogether, while others suggested cutting out the tumour along with the nerves, which would have put me in a wheelchair.
Somebody had also made a histopathological mistake along the way. At first, there appeared to be a malignant tumour in my kidney, and the one in my spine was assumed to be a metastasis. I got a referral to get my kidney removed, but I had a hunch and decided not to show up to the hospital that day. Not relying on a single opinion and constantly being in touch with multiple doctors, I decided to send my samples for re-verification to Warsaw. I waited two and a half months for the results. Luckily for me, the results ended up being completely different than before. The cancer was found to be a much milder form than previously said.
Basically, every single oncological centre I went to had to re-verify my samples because something seemed off. I even got operated on again in Warsaw just to get more samples. The doctors assumed that the first samples were collected incorrectly, thus giving such big discrepancies in the results. And there went another agonizing 3 months of waiting for results and expecting the worst. Stress, uncertainty, pain, anguish and helplessness – these emotions were constantly with me during that time… But I was lucky again – the result was once again neuroma.
The bad news was that none of the professors wanted to undertake a surgery to remove the tumour.
And meanwhile, my condition got worse as each day went by. I wasn’t able to walk or even sit. Painkillers and injections did not relieve my excruciating pain anymore. I was bedridden for the next 6 months. However, I never gave up hope. I kept on searching. My laptop and telephone were constantly blazing.
Each doctor’s visit was agonizing. We even looked for help abroad, however, the costs were enormous, and the doctors could not guarantee success.
Many people got involved in helping me, for which I will be eternally grateful. Without them, I may have never found the doctor who ended up saving my life. He was experienced in the field and committed to the challenge of operating me with an optimistic attitude. He is a truly amazing doctor.
In April 2014, I underwent two complicated surgeries. The first one lasted almost 18 hours. However, complications arose a few days after the surgery. My dural sac ruptured, which lead to a very painful spinal puncture. However, the puncture was a failure, so I had to undergo yet another surgery to stop the leak. In the end, my entire sacrum and buccal bones were removed and replaced with implants. The doctors managed to save some of my nerves, but many were lost.
I spent two months in the hospital, slowly getting back on my feet. With time I was able to walk again unaided. For a year and a half after the operations I had to use a catheter. But that did not bother me at all, I even learned to laugh at it. Rehabilitation and exercises were very effective – I managed to rebuild most of my lost nerves.
Now, I spend my days riding my scooter, I opened my own company and started fulfilling my dreams. Thanks to this experience I have learnt that anything in life is possible. Sooner or later, each and every one of us is going to die, so we should learn how to appreciate life and live it to the fullest.
A disease comes unexpectedly, from nowhere. You need to learn to live with it because it’s there… it just is. However, how you live with it is entirely up to you.