The Story of Nino and His Glioblastoma

A few days before the video conference with the participation of three long-term survivors I received this story written by Daria which I report below. Daria takes us through the emotional journey and fight against the illness of her beloved father, Nino. Through her words, the portrait of a strong and tireless man emerges, put to the test by a series of unexpected events that profoundly marked her life and that of her loved ones. This story is a tribute to Nino’s resilience in the face of adversity, the strength of family love and the human ability to find hope and meaning even in the darkest moments. It is a tale of pain, love and acceptance, which reminds us of the importance of mutual support and comfort in times of difficulty.

“The story of my beloved father Nino began on the evening of May 18, 2023, when suddenly, during dinner, he lost the ability to speak and fainted. Shortly before, on the phone, he had told me that he felt tired. For about a month he had been suffering from tiredness and confusion; one day, he even called my sister telling her that he got lost while she was driving into town. Convinced that it was just stress, he didn’t give too much weight to these signs, as he was a tireless worker.

On May 18, in the emergency room, they informed us that my father had had a hemorrhagic stroke. He spent the whole night in observation, attentive and concentrated on the movement of the only hand he could move, the left. The hemorrhage had affected the left side of his brain, leaving him unable to speak or move the right side of his body. The next day, they transferred him to the Villa Sofia hospital in Palermo, where, after four days in intensive care, he was moved to the neurology department. Although he had regained movement in his right hand, he was extremely agitated, trying to get up and demanding explanations about what had happened. We were told that it was normal to experience these symptoms after a stroke. About ten days later, we were told that he was ready for the rehabilitation center. We were euphoric, ready to start a journey towards a new normality. However, at the rehabilitation center, things did not go as hoped: my father showed no improvement. He understood when we spoke to him, he shook our hands, he wanted to spend more time with us, but we could only see him for 45 minutes twice a week, a limitation that, in light of what we later discovered, was particularly painful.

On August 3, the rehabilitation center raised its first suspicion. We transferred my father to the Neurosurgery department of the Papardo Hospital in Messina, where we remained for about a month and a half. After several MRIs and checks, they told us that there was a 99% probability that it was a grade IV glioblastoma multiforme, with a life expectancy of between 3 and 18 months. There was a 1% chance that it was an encapsulated abscess, the result of an inguinal hernia operation he underwent in April. The stroke was caused by the tumor that he had bled. We decided to subject my father to surgery to perform an enlarged biopsy, despite the great risks. The intervention confirmed the suspicions. Generally, after a biopsy, doctors offer access to oncological treatments, such as radiotherapy. However, due to my father’s already compromised condition, they advised us against proceeding with radiotherapy.

After he resigned, we decided to return home and take care of him ourselves for the time he had left. It was September 14th and my father, being at home, understood that there was nothing left to do. We showed him all the love we could, and he, in turn, was able to express even more love with just a look and a handshake. He listened carefully, nodded and made us understand that he was following us, albeit with difficulty. The last weeks were the hardest: we were no longer able to help him and we saw him fade away day after day. He left us on October 23, at the age of 66, exactly five months after the stroke. No one ever told us how long the glioblastoma had been present in his body. Just a month before the ICT

us, my father had started to show the first symptoms. Fate decided for him, making him start this path in a partial state of consciousness. Despite the atrocious suffering and the infinite sadness of not wanting to die, he faced the disease with the pride that distinguished him, transmitting to me, my sister and Lory (his partner) the idea that somehow he was not suffering . He trusted us in all his medical choices, even when we decided on the operation for him. He has always believed in science and medicine.

By writing the story of my father Nino, I relived those months in which I found comfort in the stories published on this site. Now I understand the importance of comparison , especially in moments of great suffering. Inevitably life changes, but these situations also change you and your approach to life. I, for example, am trying to transform this suffering into a more mature and concrete love for others and for life, just as my father taught me.”