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What I've never told anyone about my dad's tumour

Illustration: Julie K.

I thought for a long time about writing down what I'm going to say here, but I never really knew how. I chose not to talk about it on purpose: I don't want people to feel sorry for me, or change how they see me. However, Insane gave me the opportunity to talk about my dad's illness, helping others with loved ones dealing with severe brain tumours, so I decided to take the leap.

 

My dad was diagnosed with a brain tumour in March 2015. I remember exactly where I was, where I was headed to, what I was doing at that very moment. I was on the subway, it was sunny outside, the blue sky filled with white clouds, but my eyes were filled with tears. I couldn't stop them from flowing, I tried to avoid the gazes of the other passengers, probably out of embarrassment, or decency, and strangely enough, for fear of ridicule. I was distraught, and didn't know what to do, who to talk to, which decisions to take, and which plans to cancel. I wasn’t sure if it was serious or not, whether the end was alreardy lurking, the happy memories to hold on to. You always hope at the beginning that misfortune won't come knocking, yet, it suddenly knocks.

 

In May 2015, he had legal issues involving the buyout of a company, so I decided to go and assist him. The timing was perfect because it was the end of the university semester, and I was about to take a year off. I lived with him until the end of August, before flying to Sweden where I did a six-month internship.

 

As the illness progressed, my dad's behaviour changed, and I had to learn to live with his tumour.

The anger

My dad was always "hot-headed", an impetuosity that also made him a force of nature. He was a man who always fought for his work, his family and his friends. It was this trait that made him my role model, and pushed me to always persevere. The illness heightened this side of him, and the slightest thing would spark an episode of violent and uninterrupted outburst of anger. I constantly lived in fear of these outbursts, but I learnt to do my best to prevent them.

 

When it came to minor issues (the everyday-life kind of stuff, I would immediately calm him down and tell him that everything would be okay, or that it wasn't that serious, or sometimes present him with another solution to the problem. I ended up taking over a lot of these small duties to stop him from getting angry. For instance, if the postman was too slow, or if he couldn't find something on his phone, no matter how little these everyday inconveniences were, I realized that they awfully frustrated him, he was a self-made man, who never had to rely on anyone before.

 

As the illness progressed, I think these little issues became a sign of his growing weakness, which must have been hard for him to accept. They weren't serious: small memory gaps; not being able to use an app for the first time on his mobile phone; difficulty finding inspiration or even words when he had to write long paragraphs or e-mails... Rememeber people's names was also difficult. This could happen to anyone, even in good health, but there was a whole new dimension to these daily challenges, especially for someone who felt he knew and could do everything on his own. He couldn't accept that the illness might win.

Through the eyes of others

At times my dad's anger outbursts would occur at home, at times when I was alone with him, or when we went out, or when we were with the rest of the family. He was especially hurtful to his new wife, and he would sometimes yell at her for hours. I wasn't exactly fond of her, but I wouldn't wish the way he talked to her on anyone, not even on my worst enemy. Besides, she was only there a few days a week, especially on weekends. This is because she was in charge of running the vineyard estate they had jointly acquired, a 2-hour drive from my dad's house, which wasn't exactly doing very well financially.

She did what she could, but it was particularly hard "not to recognize the person she had loved so much".

So she tried to support him, to pick up the pieces and put them back together (one day he decided he wanted a divorce), she endured the hurtful words, the criticisms and the yelling. Once he got angry, there was nothing anyone could do to stop him. You had to wait for the storm to pass.

 

In the case of someone with a fractured leg, it’s obvious that the person would be unable to run, and that it hurts when they put their foot on the ground. With mental illness, you have to be able to relate to the person's disability to understand their behaviour.

 

It was particularly hard to understand why he acted the way he did, especially for relatives who didn't see him often, and even more so for outsiders. There hadn't been any significant changes in his physical appearance (he didn't entirely loose his hair, even during chemotherapy), and he was determined to prove to everyone that the disease wasn't affecting him, that he was still the same person, and that he wasn't going to die from a damn glioblastoma. So apart from these episodes of anger (which were random and not everyday occurrences), his apperance hadn't changed at all, and he made a special effort to have in-depth conversations, with lengthy monologues, as if to prove to the illness, and to everyone around him that he was tougher than his cancer.

 

There were times when he would suddenly say, "They're coming, I can see them”, and he would describe his hallucinations to me. They were the effects of the cancer. He knew what he was seeing, and feeling, wasn't real. He often described them to me. He said that his hallucinations were like those of John Nash, the mathematician in A Beautiful Mind, and he used them as an additional argument to show that he was also special. Like in the movie, the characters he saw kept coming back, but he couldn't exactly tell who they were. They were silhouettes, I think, and he couldn't figure out what they wanted, which scared him a little. He would pass out during these hallucinations, which he could feel happening at the same time as these shapes approached him.

 

The anger, the hallucinations, the narcissistic episodes... All of these had become his world, his reality, and we had to live with it. I often talked about it with my sister and with my relatives, we tried not to blame him, and we visited him anyway, even though it wasn't easy.

The burden and the guilt

Despite the positive light in which I talk about supporting my dad and my family, being there for him literally drained my energy: witnessing or being subjected to his anger, listening to him as he constantly recalled past glories or talked about the bright future he was clinging to, so he wouldn’t face the present...

 

I tried to be helpful by reducing his mental strain however I could. The number of pills he had to take per day was quite impressive. They had their share of side effects: nausea, fatigue, constipation. I tried to help alleviate these effects: a trick against nausea (breathe deeply and slowly), good old home remedies (always have a packet of prunes with you)... These tricks had little impact on the chemical substances his body was constantly saturated with. Today, as I write about it, it seems like a ridiculous and futile solution, but I felt so helpless... Looking back, I don't know if I was really doing it for him or if it was just to tell myself that I had had some positive impact on his condition. Strangely, everybody including him thought that it wasn't so bad, and that he was going to be okay. Nobody understood the danger, and the extent of the damage caused by the cancer, and its treatment. Which is why we turned to prunes to combat the effects of chemo.

 

My sister and I sometimes made decisions for him because of the illness. We knew his severe aversion to the hospital. He always said; "Don't ever call the emergency services, I don't want to go to the emergency room". However, one day, just after he started receiving chemotherapy, he suddenly collapsed. I will always remember the look he gave my sister and I when the paramedics showed up, even though he was so weak he couldn't speak. The only reason the paramedics were able to take him away was because he did not have the strength to fight. When we went to meet him a little later in the emergency room, we found out he had left the hospital. He had taken the bus, in his hospital gown, and had rung the next-door neighbours' doorbell, because of course he didn't have his keys. “I left because they were going to leave me in that hospital lobby to die”, he said. A force of nature indeed.

 

Finally, there was also all the insurance paperwork (prescriptions, doctors' reports, etc.) we had to take care of. Each document was potentially crucial and had to be carefully filed. Since he was a business owner, he had taken out a special life insurance policy, so I helped him put together the file to qualify for it. One day I was asked to go and mail the documents, it was past 4:00 p.m. and the letter absolutely had to go out the same day, which was also the deadline. I stared at the letterbox for a long time, wondering what more I could do to ensure that this envelope, on which hundreds of thousands of euros depended, arrived on time. I was stayed in the post office for ten minutes, before finding the strength to leave. Until we received an answer from the insurance company, the most dreadful scenarios, in which I was responsible for a disaster, kept playing over and over in my head.

 

I would impatiently wait for one thing; the weekend, so I could go to my mother's. Wishing never to return, not carry out any responsibilities anymore, to be cared for... Of course my mother was devastated every time whe saw over the weekends, and did what she could to help me, but I even didn't know what could actually make me feel better. All I wanted was for it to stop.

 

Of course, I also felt guilty: about not wanting to stay with my dying father, about being unhappy while in his company, about being annoyed by his behaviour, at the same time experiencing some extraordinary moments with him, on topics such as his life, his divorce from my mum, his decisions, his relationships with his parents, his siblings, his other daughter (my sister)...

 

I often think back to these moments and I sometimes find myself analysing certain aspects or certain difficulties in my life with another perspective - through his eyes.

 

The most difficult thing we had to do was carry on with our own lives: that was the general feeling everyone had around him. Christmas that year wasn't like any other. With melancholic laughter: did we have the right to laugh or exchange gifts, or have a good time as a family, with Dad on his hospital bed fighting a battle that only he, in a semi-coma, thought he could win?

 

The day before he died, he was unconscious, and with difficulty breathing. I spoke softly to him, whispering. I told him about some of the memories I had of him as a little girl, I told him something that had become a running joke between us, to show him I hadn't forgotten those moments, or who he had been for me. Then I said, "You know Dad, you have put up a good fight. You can go now, we're here with you". I believed that's what he needed to hear at the time, I believed it was also the only way I could to help him. The fact that he passed away the next day didn't matter, I was just relieved I had told him that, and that it seemed he heard me.

Taking a step back and looking at your own life

When I look back at this period of my life, I remember everything I did, and I don't even know how I got the strength to do all of that at the time. It was almost mechanical, as if someone else had taken over my body. This is mostly how I felt during the final days of his life.

 

My father died on the 10th of January 2016, and no one close to him could stay with him in the hospital because of the New Year. So I spent five days and four nights at his bedside with my then-boyfriend, who supported us through all the stages of this struggle, and who is now an equally amazing husband. We tried to do something for the New Year, just the two of us, because you have to celebrate the turn of the year. We ate petits-fours and watched Netflix, or the TV, I don't remember, in a room reserved for relatives, where my boyfriend also slept. We could hear the fireworks outside, but we couldn't see them. I don't remember much, but I do know that we were both there, and that Dad had us nearby. That's all that mattered that night.

 

On those few nights at the end, I slept in the same room as my dad. I would dream about my reality -- my dad's cancer, the hospital, everything -- and when I woke up it often took me several seconds to realize that I wasn’t in a nightmare anymore.

 

In his last days, my dad had lost a lot of weight, he couldn't speak nor open his eyes, he had difficulty breathing and swallowing, and he couldn't moisten his lips. They were chapped, making it very difficult for him to eat. He "ate" mostly liquids, particularly yoghurt. When he could still talk, he complained that their acidity was reopening the sores on his lips. One day, I was at his bedside with my grandmother when the orderly brought his yoghurt. She kindheartedly suggested my grandmother make him eat. My grandmother turned to me and asked me to do it for her instead. She spoke with the slow rhythmic soft voice she uses for rather serious discussions (when she talked about her life, my future, or realities that are difficult to accept). "I can't do it. You know, he's my son. I used to give him yogurt when he was little, but he's all grown up now. I shouldn't have to feed him again". My grandma still feels really guilty that she outlived him.

 

In spite of everything, I still feel some sort of happiness today that I was with him till the very end, even though “happiness” is not quite the right word. I can tell myself that at least I was there for him, that I tried my best to understand, and that he wasn't alone in his illness, in his world.

 

Going further

  • Here's a few tips on how to accompany a gravely ill loved one
How swimming helps with ALL of my mental health issues
Doctors Without Borders or Psychiatry venturing into terra incognita