It was December 2012, late at night. Two months previously, Jan had decided to resign from his job. He said it was the first time that a headmaster had caused him headaches, and that his health was more important than anything else. I was not happy at all. In July that year we had moved from Tenerife to Marbella only because Jan got the exact same job from which he was resigning. In October I was lucky enough to find my dream job, which was teaching ICT, but it was just a part time job and therefore could only pay the rent with my salary! However, Jan was adamant. He would not reconsider his decision about resigning. So, to survive we had no choice but to spend our savings that year.
That December night I was preparing my lessons in the living room while Jan was in bed, sleeping, the children too. So I was surprised when I saw him standing there wide awake saying that something serious had just happened. I was concentrating hard on my work so that I was only half listening to him. He mumbled that, for a few seconds, he had lost the ability to speak. I did not understand! If he was sleeping why did he suddenly want to speak. Was he trying to speak to himself? I thought maybe he was dreaming as he looked perfectly well to me. So, I continued with my work. But then, he called 112, the emergency number, asking for an ambulance! The answer to his request was please go to the hospital next morning and explain to them what just happened and that since he was already well and speaking normally, he could wait some hours. He did as he was told.
Now, countless trips to the hospital started. At the beginning, the process was quite slow. He had to wait weeks for tests and then more weeks to see the doctor again.
In the last week of January 2013 he had the second and most devastating stroke. It was at lunch time. The four of us were at the table eating fish and chatting. Jan was telling some funny story when suddenly he fell onto his knees and then he was lying down on the floor. He did not black out but just started to make funny noises. The children and I thought that he was acting the clown. They started to laugh and I continued enjoying my fish. But the noise was repetitive and it was lasting way too long. And then the memory of that December night came as flash to my head, that stroke, the one I did not give any importance to. I looked at him very closely. Both his hands were distorted, his mouth was moving uncontrollably making an awful sound and his eyes were crying for help. For a few seconds I panicked and became hysterical, it seemed to me that Jan was dying. The only thing I managed to do was to call our only friends there, an elder couple, but they did not answer the phone. Then I realized that my children were there, that Jan needed help and that I needed to take control of the situation. I called 112 and this time an ambulance came.
Thanks to my first reaction the children were really afraid, crying and trembling, pleading “Please daddy, don’t die”. When the ambulance men came they found Jan still on the floor, he could not talk normally, but at least the weird sound and the trembling had stopped. They took Jan to the hospital and put him under observation for 10 days.
Now things were moving a bit faster than before and the doctors did all they could to try to find the source of the stroke and although they had their theories they found nothing. They explained to Jan that this kind of stroke occurs when coagulated blood blocks a vein in the head. The coagulation does not allow the blood to flow normally and because of this, the brain does not work properly. However, they still needed to find the reason for the coagulated blood.
He was so worried that he went to see a private doctor. The thing was, we weren’t sure of which specialist he should see, because we weren’t sure of the source of his illness. Is there such a thing as a brain doctor? He chose to see a cardiologist who found nothing. Then I thought of a friend who specialized in internal medicine. She explained to me that this specialization tries to find disease in the whole body. Although I never really understood her very well and since we did not know what was the source of Jan’s illness, I thought internal medicine could help him. So he found a private doctor who just happened to be the director of the Internal Medicine department in the State Hospital where Jan was being attended. But his opinions and theories were the same as his colleagues.
In July 2013, after a long quest which revealed little, Jan’s doctor decided to put a Holter monitor under his skin. It would remain there for 2 years. Jan’s job was to send his heart data, which were stored in the Holter, to the hospital every month. He used the land-line to send this data and he did that every month until June 2014.
During the period from February 2013 to January 2014 Jan still had strokes, which used to last less than a minute, with one occurring at least every two months. All of them were very similar. They started with him feeling as if someone was throwing balls at his head and then his mouth started trembling and he would make that weird sound.
In April 2013 Jan was offered a job in Lanzarote, which he accepted. I was again unhappy with that decision because it meant that I had to resign my job. But I had no choice as he would have a full time job and the children’s schooling was included in the package. So in August 2013 we arrived in Lanzarote.
Since Jan’s strokes weren’t that frequent and his heart appeared to be working perfectly well, we kind of relaxed. Jan started his new job, the children were happy in their new school and I was already used to the unending search for a job, and life went on.
In January 2014, his strokes took a different shape. He no longer felt as if someone was throwing balls at him or then losing control of his speech. Now, all of a sudden, he was losing control of his right hand. We were always trying to be optimistic, so we were happy that it was his hand that was suffering from the attacks and not his head. We relaxed even more, to the point that we decided to spend our summer in Bolivia.
One May afternoon this year Jan mentioned that the board pen fell out of his hand while he was explaining something to his students, but we took it lightly, with me teasing “So you are not strong enough to hold a board pen?”
In June we gave up the rented house we were living in. This meant we had to clean it, pack and throw things out. He complained that he couldn’t clean the oven properly because his right hand wasn’t responding as it should. “When we come back from our holidays I’ll bother the doctor again”, he said.
Before we headed for Bolivia, we spent one week in Salobreña, a Spanish city, where our eldest son played in a chess tournament. That week, every time we ate Jan complained that he couldn’t hold his knife properly, and so, I had to cut his meat for him. But we still didn’t realize the gravity of the situation.
We arrived in Bolivia. It had been 5 years since we had visited my family. All of us were too excited to notice that Jan’s hand was getting worse and worse. However, after a week I noticed that his hand was swollen, and then I told him that we should see a doctor.
It was July 14 when the visits to doctors started again. After an examination the neurologist prescribed an MRI. He explained that Jan’s right side wasn’t responding well because there was something in the left side of his brain that was not allowing the brain to work properly, but what that something was could only be discovered by an MRI. However, the laboratory couldn’t make the MRI while Jan had the Holter inside him, so they sent us to a cardiologist to take the Holter out. The cardiologist ordered a series of exams to make sure that Jan did not need the Holter. In the meantime, days were passing and Jan’s hand was getting even worse and it wasn’t only his hand now. His whole arm wasn’t responding and he had developed a limp in his right leg.
Jan was very afraid, he was guessing that he had a tumour in his brain. I wanted to be more optimistic. I have known Jan for 14 years. We have been married for 10 years. He has always been a healthy person. Not even a headache. Always taking care of what he ate. When he didn’t have time for sports he at least walked. He and the children used to walk to school every day. They walked at least 2km. from home to school.
On the 18th of July the cardiologist finally decided to take out the Holter, and the surgery was planned for the 21st.
On the 21st, we woke early in the morning and headed out for the hospital. The surgery was quick. One hour later Jan was at home eating breakfast and immediately afterwards we rushed to the laboratory to have his brain scan. The results were ready that afternoon. We took the results of the MRI to the neurologist who said that effectively Jan had a tumour which was in the left side of his brain and it was the size of a Bolivian lemon. That was the reason why he was losing strength in his right arm. The only way to know whether the tumour was benign or not was to have surgery. He surely and clearly said that no matter where, in the whole world, we may look, we would be unable to find a second different option and that the surgery should be done as soon as possible because, apparently, the tumour was growing very fast.
The decision we faced was to either go back to Spain or stay in Bolivia and have the surgery there. We talked at length, almost the whole night. Next day we went back to the doctor and said that Jan wanted the surgery immediately.
The neurosurgeon explained the risks of the surgery, that there was the possibility that Jan wouldn’t be able to move his right leg and would lose his speech, because the tumour was located in the part of the brain that controls language and the right side of the body movement and because he, the doctor, would manipulate that very site, the brain would be swollen afterwards. The hope was that once the brain went back to normal, Jan would have the chance to talk and move again. But this also depended on whether the doctor could extract the whole tumour or not.
The doctor started the procedure, he sent Jan for lots of tests to determine whether he would be strong enough for the surgery. Finally on the 25th of July, Jan had brain surgery. Whilst entering the operating theatre, Jan was trembling uncontrollably, almost crying. It was as if he had been sentenced to death and was headed for the guillotine. His life depended completely on the result of that surgery.
After some five hours waiting and hoping, the doctor came out to explain that Jan had withstood the surgery well but that unfortunately he was unable to remove all of the tumour as it was mixed with brain tissue. We were still hopeful that the tumour was not lethal, but to discover that, I had to take the removed tumour cells to the laboratory for examination and then, we would finally know what we were facing.
Immediately after the surgery, Jan could talk and move his right leg. At that point we believed we had triumphed. But this belief was short lived. After a few days his speech deteriorated, his right leg became heavier and heavier for him until he could no longer move it. He left the hospital in a wheelchair and was unable to communicate.
The result from the laboratory was our only hope and we lived with a week full of anxiety. Our hope died at the end of that week. The result came back as cancer, stage 4, the deadliest, incurable. That’s why we decided to flew back to Spain immediately.
We still live in hope. Hope that at least the treatments that Jan is undergoing somehow will give him a couple of years more. No one has told us what Jan’s life expectancy is and we haven’t dared to ask. We are well aware that his cancer is the most terrible kind, but as my sister said, “whilst there is life there is hope”. At the time of writing, Jan has had three weeks of radiotherapy combined with chemotherapy. He rested a month, and then started a second cycle of chemotherapy only, which lasted five days. At the end of the month the oncologist will evaluate him and then will decide if he continues with a similar cycle next month. The current plan is to repeat this for six months.
Jan is depressed and cries every day. One of the few times when his face shines is when the children come back from school, all boisterous and energetic, and give him a hello kiss. At night sometimes, when the children do not have much homework, we play cards as we used to, that is also a pleasant time for him because he remembers all the rules and in a way he is communicating with us while playing.
After the surgery and the laboratory results, our lives have changed forever. Jan is obviously not able to work. I too am unable to work because I need to take care of Jan 24 hours a day. The hardest part was the first month. I had to learn how to move Jan all by myself. We do not have any family in Spain and since we arrived in Lanzarote just a year ago we do not have close friends either. Good people have offered to take the children to school and fetch them back, which is a big help. The school even lent us a car while we were looking for one. My mother came from Bolivia to help me with the house and the children, while we learned to adapt ourselves to the new situation. And after three months with us she left a few days ago.
Jan previously always had sweet dreams, he used to sleep like an angel. But after the surgery he never sleeps well, especially the first month. He was waking every hour crying and was terrified. One night he pointed to the door almost screaming. After many hours of trying to help him to make me understand what was happening to him, I finally understood that he thought there were people waiting for us in our living room, people who wanted to take the 4 of us to a place where we did not want to go. Every night he had similar nightmares. So we did not sleep for a whole month.
The first months Jan wanted to be out all the time he could. I went out with him, pushing his wheelchair gladly, but slowly my energy has declined. I thought I was very strong physically and emotionally. But after three and a half months of pushing the chair, helping Jan go to the toilet, which means lifting virtually all his weight each time, showering him, dressing him and undressing him, helping him to get into and out of the car, I feel exhausted and I’m pleading for help.
My children are showing signs of rebellion, they are sad and worried. The youngest one had an outburst at school the other day. He has started saying that everybody hates him. He cries for everything and anything. The eldest one shows sadness and anxiety.
Jan goes to the hospital 3 times a week for physiotherapy and the hospital transport comes for him. The first time this happened, my son woke up but didn’t see his father anywhere and saw that I was at home. He became alarmed, ‘where’s daddy?!!!’ and I needed to reassure him.
The rehabilitation doctor did not seem to think it was worth assigning him a speech therapist, which I consider to be completely inappropriate. I think he’s wrong. So much so that I decided to take Jan to see a private one. If only he could express himself, that would do him the world of good.
Now that my mother is gone, I need to hire somebody to make company to Jan while I go out to the many offices I have to visit. Spain is the queen of bureaucracy.
I spend my “free” time making phone calls, sending emails, researching on the net, keeping up to date our agenda, because Jan has lots of appointments with different doctors (cardiologist, neurologist, oncologist, rehab) at least once a month, planning our meals, and doing the housework.
In the afternoons I try to spend most of the time with my children, doing their homework, monitoring what they watch, that they do not fight or scream because daddy is not feeling well to hear their cries.
A few weeks ago when I was helping one of my children do their homework, Jan tried to go to bed all by himself and fell. We heard the sound and run. We found Jan on the floor trying to stand up, but he couldn’t. Much as I tried, not even I could move him, so I called the emergency number once again. They took him to the hospital to scan his head because he got a bump there. Nothing serious happened, but that is just an example of Jan’s dependency.
On Monday Jan will see the anaesthetist. And then the hospital will call to give us the date for a new MRI. That one will show the result of the radiotherapy and chemotherapy. We are crossing our fingers to hear that the tumour shrank considerably.