Back to life

«A few months after the proton treatment was over, I realised that I could see more and more. Just dimly, it's true, but I could see! That was sensational!»

I'm doing very well. Before the treatment, I could no longer see with the right eye. Now the eye is clearly better, and I can do everything again: I can work out, I can hike, and I have no more headaches. I'm really doing wonderfully.

How did it all start?

With a black spot in my right eye. That was around seven years ago. At first I thought that it would just go away again. Then a kind of veil formed over the eye. In the Internet I read that this can be a sign of cataracts, and that's why I didn't go to the doctor at first.

Did it then get better again?

No, and for that reason I then went to several doctors. It wasn't cataracts. The eye doctor immediately referred me to a hospital. There I was told that I'd had a stroke, and that the optic nerve was irreparably blocked. But it grew steadily worse, so years later I went back to the eye doctor, who sent me to the hospital for further tests. By that time I had practically no sight in the right eye. Then, through computer tomography, they found that I had a meningioma (editor's note: a slowly growing brain tumour) on the optic nerve. The doctors reacted immediately to that and said radiation treatment was necessary.

Was the irradiation done right away at the PSI?

First I was supposed to get a conventional radiation treatment at the oncology unit in the city, near home. In the meantime, though, I had heard that it could be done more selectively, much more precisely, at the Paul Scherrer Institute. I asked my doctor, and he got in touch with the PSI to determine if my tumour would lend itself to treatment there. After MRI (magnetic resonance imaging) of my head had been done at the PSI, it was quickly decided that I would receive 28 proton therapy treatments. By that time I had lost all sight in the right eye.

What expectations did you have when you went to the PSI?

Quite modest expectations, really, because I didn't know how it would all go, or whether the therapy would be of any use at all. So I went to the doctors, and they explained exactly what they were going to do and what they could achieve. They didn't promise me that my eyesight would improve afterwards in any way. They only promised that they could stop the growth of the tumour. That was all right with me.

So, you first had a preexamination and then were given an appointment for irradiation?

Exactly. But in between I still needed to get a bite block in preparation for the radiation treatment. A cast of the teeth is made with a soft paste, which then hardens. Almost like at the dentist's office. In the end it is like a dental brace, but one that goes over the outside of the teeth. During irradiation, this cast is fastened to a device. You have to bite on it and then lie in a fixed position. That is important, so that the head is completely steady. You must hold absolutely still during the irradiation.

How does such a treatment proceed?

You are fastened down on a treatment table and first get a CT scan. Then you are taken into the examination room where the gantry stands. That is the centerpiece of the proton treatment. The first time is weird. You're lying on an automatic table, and you're alone. The table then moves into the middle of the machine. It's scary, the first time you see the whole enormous apparatus. Especially when it starts up and the gantry moves towards you. It weighs 40 tons, and you're thinking, I sure hope it stops. But there is a microphone so you can let them know if the fear gets to be just too much. In each session, the device rotated three times, so that the irradiation came from the side, from the front, and from behind. Then you always hear a tack, tack, tack sound, and then it's over. (Editor's note: These noises come from plastic panels which, in the spot-scanning technique, are pushed into the beam path to adjust the proton beam's energy.)

How long did the radiation treatment take?

The irradiation itself took only around three minutes. The time in the gantry was roughly ten to fifteen minutes. The whole preparation, though, lasted between half an hour and an hour. I had to have a CT scan before every irradiation session and, every twelfth time, another one afterwards.

Was the irradiation done every day?

Irradiation was done five times per week. Not on Saturday and Sunday. Since my husband always drove me, I was home every day. That's good for your morale. And at home, I even went swimming in the lake sometimes. It was beautiful to go home.

Did you experience any side-effects, either during or after the treatment?

No, not at all. I felt really good. Maybe I'm a bit more tired than I used to be, and need a bit more sleep. But that's the only thing. Now I sometimes lie down for fifteen minutes in the afternoon.

What would you tell someone whose doctor has recommended such a treatment?

The treatment is good. There's nothing to be afraid of. I always had the feeling that I was in good hands. I was satisfied with everyone: with the doctors, the secretarial staff, the people who make the bite block and who get you ready for the irradiation session. I have nothing but praise for all of them. The treatment is good. There's nothing to be afraid of. I always had the feeling that I was in good hands. I was satisfied with everyone: with the doctors, the secretarial staff, the people who make the bite block and who get you ready for the irradiation session. I have nothing but praise for all of them.

How did it feel to get the last irradiation session behind you?

That was lovely. You can get a bit fed up with it: always the drive there and back and the preparation, always taking this device in your mouth. Even though it gradually became routine, I felt very relieved when I was done with the therapy.

Have you taken up anything that you wanted to do after the treatment?

My husband and I said to ourselves, once it's all over, let's go to America for three weeks. And we did it. We visited three cities: Boston, New York, and Washington. My daughter came along too, because she had suffered a lot as a result of my illness, like the whole family. But everyone always supported me, especially my husband.

Has anything changed for you since then?

I live more consciously. I am actually a rather nervous person, but now I am much better able to take things in stride. I tell myself: Today is today, and tomorrow is tomorrow. I always used to think about tomorrow, next week, and everything I had to do. Now I live one day at a time, and I'm doing well.

What are your next steps?

I'm getting on with life. Every six months, I have a checkup with the eye doctor to test my field of vision as well as a monitoring MRI scan at the PSI. In my free time I like to hike, and I go hunting for mushrooms and berries. To be in the woods and in nature, that makes me happy. There I can recharge myself. Also, I enjoy listening to music and reading.

Speaking of reading: How has your ability to see with the right eye improved?

Around three months after the proton therapy was finished, I realised that I could see more and more with my right eye, and now I've regained fifteen percent on the right. That helps my vision with the healthy left eye. On the right, it's true, I see only dimly, but I can see. I would never have believed that. It's sensational. Realising that your ability to see has come from zero to fifteen percent — that's heavenly!

*Name changed by the editor

Interview by Sabine Goldhahn