My long-awaited healing

      Yesterday, I listened to an impressive radio programme. A journalist and a writer, a regular contributor to the programme, went to a centre of the ONCE (Spanish National Organisation for the Blind), in Madrid, to talk to EBO (Compulsory Basic Education) students.

      There were eight students in the classroom, all aged 18 or under (after that age, they have to go to another centre). All of them were deaf and blind. The journalist and the contributor spoke to the teacher, who explained that some students make sounds but have not yet learned to speak (when they are young) because they have not learned our language. They use the Braille system, via a computer with an adapted keyboard, but also using the palm of their hand as a means of communication between themselves and the support person each of them has. Because, as a Spaniard once said: ‘Their world begins at their fingertips’.

       The work carried out by ONCE is wonderful because, until the end of the 19th century, these blind, deaf and deafblind people were usually confined to their homes, isolated from the world. But now, thanks to ONCE and other organisations, we know that these people are capable of living happily, despite their enormous difficulties.

      At the end of the 19th century, Hellen Keller, a 7-years-old American girl, began to lose her sight and hearing. Her parents sought help and went to a centre for the blind in the United States, where they were sent to a therapist, Anne Sullivan, who began to work on communication with Hellen. One of the exercises she did was to take Hellen to a water fountain, put her palm under the water and then wrote the word “WATER” on her palm. When Hellen grew up, she became a writer and political activist.

      Returning to the ONCE Centre, the journalist and her colleague spoke to a 34-years-old man, Javier, who lost his sight and hearing at the age of 13. His father took him to ONCE, where he was assigned a psychologist who talked to him about working on ‘climbing’, that is, improving Javier's abilities so that he could build as stable a future as possible. The psychologist asked him, ‘Javier, do you want to resume your studies?,’ Javier replied: ‘Yes’. Javier then finished his secondary education with a grade point average of 10. He then studied for a double degree in Law and Business management. As he was attracted to the Erasmus programme, he went to London and enrolled in an English language school ---his classmates looked at him strangely, but he had no complexes---. Javier had to make a great effort, although he had the help of a therapist. And he was the first deafblind person in Europe to participate in Erasmus.

      Javier currently works in the Institutional Relations department of ONCE. He is married and has two young children.

      As he spoke ---which sounded strange, because he couldn't hear himself---, I couldn't understand how he could understand the questions from the journalist and the collaborator; but, at the end of the interview, the collaborator explained that Javier had the help of a therapist at all times, who translated each of the questions for him in real time. For example, the collaborator asked him how he knew when to correct himself if he was speaking too softly or too loudly. He replied: ‘If I speak too softly, my therapist slides her hand from my forearm to my shoulder. And if I speak too loudly, she slides her hand from my shoulder to my forearm.’ But the collaborator said that the therapist did not want to be in the spotlight, so she did not speak or give her name.

      Another thing Javier mentioned was that blind people walk down the street with a white cane, but deafblind people carry a red and white cane.

      When the programme ended, I was impressed because I didn't know about the work that ONCE does. And I'm glad that programmes like this give visibility to these people, who seem not to exist, but they are among us and they also deserve to be happy.
      That's why those of us who, thanks to God, don't have these disabilities must appreciate THE GREATNESS OF SEEING AND HEARING LIFE.

      First of all, I would like to thank eyeonspain for approving my new blog and giving me the opportunity to share my experience with this disease  — although I know that my case is not as serious as others I know —  with other patients who read my blog or their loved ones. I would like to take this opportunity to thank all of them.
      Yesterday, around 8 in the morning, I went to the kitchen and, looking out the window, I saw that it was a beautiful day, with clear skies, unlike the weekend, when it rained a lot. That made me very happy.
      At 10 a.m., I had to go to the hospital for my second day (of the second cycle, I only have four more to go) of chemotherapy treatment. I was more cheerful than other times, but I also had a better morning than the day before, when I was very tired.

      Then, what I saw through the window made me think a little. I could see almost the entire port. At first glance, I could see many cars, parked, seemingly lifeless; but the truth is that their owners would have many stories to tell, different or similar (illnesses, financial problems, etc.). That static image contrasted with the hustle and bustle of the port (cars, lorries, passenger ships, cargo ships, containers being handled by the dockers...). In short, many people, with their problems, but they have to go on living, with varying degrees of difficulty. But it is very important not to lose hope — although one day I thought that unfortunately there are people who have not lost it, but rather do not have it in the first place--.

                                                                                            Port of Algeciras                                                                                       

        To conclude, I would like to emphasise the importance of maintaining a positive attitude, as far as possible, when faced with an illness, whether it is the one I have or any other, because at first I was very afraid, due to the uncertainty of the initial diagnoses, as I mentioned in my first post, but also because outsiders tend to dramatise things more... once you are in the process, it is easier to normalise it, to de-dramatise it — at least that is what is happening to me — because the ward I go to is pleasant, the nurses are wonderful, and that compensates for the pain — not much — that I have had some days after each session.
      I think it's a matter of preparing your mind for a new stage, a new experience, one that we didn't seek out but that we have to accept and learn to live with in the best way possible.
      Let me tell you a story of personal triumph that I heard when I was living in Madrid in the 1980s. One summer day, I was playing football on a grass field near my house, and I knew, from one of my sisters, that a friend of hers, who was a Marine, was doing rehabilitation exercises there. During a parachute jump, his parachute failed to open; miraculously, he did not die, but he was paralysed from the waist down. So, I saw him sitting on the side of the field and went over to say hello — I didn't know him personally — and I was impressed to see him alone, doing leg exercises, sweating under the 40-degree sun, but with great determination, accepting his new, limited life. He taught me a lesson in humility, sacrifice, and even gratitude for being alive. And I, who had healthy legs, could play football, swim in the pool and walk home, felt it was unfair that this boy had such a hard life and I worried about things of little importance. That's why I liked to go up to him and talk to him for a while, even if it was only for a few minutes. And that day I learned a great lesson about the capacity for personal improvement.

On 18 February, I noticed a large lump on my left leg. I was frightened and went to the Emergency room of my health centre. The doctor who saw me said it looked like a cyst, but asked me to have a scan. Two days later, I had the scan, and several days after that, I took the report to a surgeon.  He did not agree with the report, so he asked me to have a second scan done.
I took the second scan to the surgeon, and this time he agreed with it. He told me that it looked like something malignant  —although he thought it could be a hernia---. But he told me not to worry because, if it was something malignant, it would be very treatable with chemotherapy. Despite his attempt to reassure me, I was very scared that day and the following days. Then he asked me to have a CT scan and a biopsy.

As they couldn't do the biopsy in Algeciras, I went to Marbella and had both tests done there, at a clinic, on 10 March. I had to wait at least eight days for the results. Imagine how scared I was.
And then the day came... I received an email with the worst news: they had detected grade 3 lymphoma. I collapsed. It felt like my life was ending that day... But, luckily, my wife comforted me, telling me that this experience could help other people who were as scared as I had been, now that I had overcome that fear.
I immediately took the reports to my family doctor at the National Health Service in Algeciras. The next day, he sent these reports to his boss so that Punta Europa Hospital could call me.
A few days later, the hospital called me to make an appointment with a haematologist.
At the consultation, she told me how the treatment would begin: blood tests, medication, an initial PET scan and six cycles of chemotherapy.

I was afraid of the side effects of chemotherapy, but on the other hand, I was starting to become mentally strong because I had overcome the fear caused by the uncertainty and not knowing what the lump was at first. However, I started the chemotherapy sessions, in April, and saw that I did not have the side effects that I had imagined with such fear.
In August, I finished the chemotherapy cycles and stopped taking almost all of the medicines.
But the last PET scan showed that the lesion in my right hip bone had not improved, so my haematologist told me that I had to undergo six more cycles of chemotherapy, but with a different treatment.
I have already completed a two-day cycle. I have five cycles left, but for now I am feeling better than I did after the first six cycles.

That's why, even though it's a long and difficult illness, I would like to convey my hope and mental strength to anyone who needs it, because I have overcome my initial fear (the uncertainty, the possible side effects...), I now know that the large lymphoma in my leg — and another small one I had in my left armpit — has been cured, and I just have to do what the hospital tells me to do to finish healing the lesion in my right hip.
I know my case is not as serious as many others, but I am very grateful to Punta Europa Hospital for all the care they have given me. My haematologist is doing a good job of curing me. And the nurses, as well as being very professional, are very humane. I also appreciate how modern and bright the chemotherapy room is, which was renovated a few months ago.

That is why, after so much time, feeling scared and discouraged at first, but fighting to stay mentally strong and be able to accept the hospital's treatment, after the difficult moments I have overcome, I think that we humans do not really know our capacity to endure pain or fear. I believe that our survival instinct helps us.
That is why I encourage those who need it to trust in medicine, but also in themselves and, of course, if you are a believer like me, in God.

Translated with DeepL.com (free version)

Translated with DeepL.com (free version)