Short story of a survivor

13 October 2019 0 By Roberto Pugliese

I believe it is important to give a message of hope to the visitors of this site. As you know, one of the intents I set when I decided to develop this information site was to tell stories of people who, like Emanuele, fought against this terrible disease. It is true, the probability of dying with the diagnosis of glioblastoma is 100%, at least from the statistical point of view and only 5% of patients live more than 2 years but some people survive, so I will report some stories I came across during the translation of the Guide of the Musella Foundation. More stories like this can be found at the link: The following story is of an anonymous who fought and fortunately won his war against his glioblastoma multiforme.

It started with small things in 1999, mostly visual. My wife thought I was experiencing a stroke.

I called my doctor at home on a Sunday. He had a scan set for Wednesday, my wife and I saw the neurologist and neurosurgeon on Thursday, and surgery was on the following Tuesday. I had glioblastoma. I received radiation and chemotherapy as well as stereotactic radiation. I was very fortunate to be at a teaching hospital.

I had a recurrence in 2001 with successful resection during which Gliadel Wafers were implanted.

In 2002, they thought I had another recurrence, but it was only scar tissue and radiation necrosis.

I am currently a 19-year survivor of glioblastoma. I still deal with several medical issues associated with my tumor treatment, including some loss of peripheral vision and neuropathy in my right foot, which affects my balance. Most important to me are conversations I have with brain tumor patients and their caregivers. On average, I talk to two or three patients in a given month. I always point them to the website as the best resource for all things brain tumor. I do not give medical advice, but I do answer questions as best I can. What
I hear quite often is the hope they feel when they meet someone who has survived glioblastoma for as long as I have. I make sure they know that there are many long- term survivors and that there is hope based on new treatments and research

I have learned a lot of things from my experiences; these are just a few of them:

  • You will learn quickly who is comfortable and who is not comfortable in dealing with issues of mortality.
  • Have someone with you to listen, ask questions, and remember. Several times the neurosurgeon told my wife that no one had ever asked him a particular question before.
  • Don’t fear knowledge. As my wife said many times, “There is nothing you can tell us that is worse than we can imagine.”

God gave us the gift of life that brings uncertainty. When tough times hit, He can comfort us much as we can comfort each other …

If you also have a story to tell, don’t hesitate to contact me. We need to collect stories and raise public awareness on the importance of doing research against this rare and rapidly growing disease. To do this we need your story even if the media coverage of the death of famous people like Senator McCain or of TV journalist Nadia Toffa or conductor Fabrizio Frizzi is certainly wide.