In May 2018, Esther Schulz received the shocking diagnosis of cancer. It was more of a coincidence – doctors thought the then 59-year-old had a hernia. After just one night, she decided against chemotherapy.
She describes her experiences with the disease in her book “I see the sky: How the diagnosis “cancer” clarified the view of life and death”. FOCUS Online publishes an excerpt from the book.
On May 29, 2018 I received the diagnosis: cancer. It was more of a coincidence. A joke, if such a diagnosis would be laughable. The doctors thought I had an acute hernia. The ultrasound clearly showed that fluid had already leaked into my abdomen. They thought they needed emergency surgery.
But when I was lying on the operating table in front of them, they saw that I hadn’t suffered a hernia at all. Instead, a lymph gland had burst. When the door to my room opened after the operation and the chief surgeon came in, my hands were sweating.
Why does a doctor come by when everything went well? He said it out loud, I replied “OK,” and took a deep breath, swallowed, and absorbed the subject.
About half an hour later my husband Günther came. We sat together, talked, thought: How is it now when something like this affects you? It was like hanging between two worlds, a state of limbo. This is how we spent the day together. The message had to get through first.
The next morning, the doctor who operated on me came to my room. A really empathetic doctor who got a bit upset when he noticed how calm I was with the diagnosis just a day later. It hadn’t knocked me off my pedestal.
He recommended consulting a psychologist, but that was not necessary. During the night I had internalized and processed a lot. I was very calm and relaxed because I knew nothing would happen to me that wasn’t supposed to happen.
The doctor was very optimistic. He explained to me exactly what lymphoma is, what non-Hodgkin’s lymphoma means and made an appointment with an oncologist in the same hospital. Günther, my son Ben and his wife Alex accompanied me.
The oncologist then also explained the situation to me. But when I told him that I had decided against chemotherapy, the situation changed radically.
The oncologist was very clear and explicit in explaining to me what to expect in this case. He just didn’t know how to communicate with people in such situations, social skills equal to zero. That was hard, not only for me, but also for my family, who wanted to support me with their companions.
Back on the ward, I spoke to the doctor who had operated on me again and also informed him that the visit had been a bathroom grab. He wanted to refer me to another oncologist, but actually I didn’t want that.
I was clear on the path I wanted to go at this point. The process of consolidating this decision took about 1.5 days. In conversation with Günther, I realized that chemotherapy was out of the question for me.
If I have recognized something for myself and feel an inner peace about it, then I go this way, no matter how many people tell me that my decision is the wrong one. Then it cannot be changed.
I’m also sure that I couldn’t have lived so happily with a different decision. That wouldn’t have put me at peace, it would have stirred me up. I stood behind my decision 100 percent and that was a good thing.
But then, contrary to my feelings, I agreed to the appointment at the cancer clinic in Essen. We even got an appointment very quickly due to the mediation.
On June 7th, 2018 I was discharged from the hospital and at the beginning of July we went to Essen together. The professor who received us there was very empathetic and kind. I also felt that he was seeing me as a whole, examining me, feeling for lumps and doing a CT scan.
I felt that I was in competent hands with him, but I also told him clearly that I had decided against chemotherapy. “OK, then we don’t need to do any more CT scans. It saves your body from even more poison,” he replied.
That was fine with me. But he also made it clear that from his point of view he could not understand my decision, there was a chance of healing, but he respected my attitude. I didn’t want more.
What greatly influenced my decision were my experiences with people who had cancer. I was a parish deacon in the parish of Hagen for 20 years and have accompanied many cases during this time. I saw what these people had to endure, how they suffered.
There have also been positive examples, especially among younger people who have overcome this disease both physically and psychologically. But you never know whether it will stay or come back
On the other hand, I have also seen many who suffered like a dog. And I know what suffering like a dog means. I myself had a serious intestinal disease about five years ago, from which I suffered enormously. At that time I was on the verge of dying because the illness had sapped all my energy.
My intestines didn’t process anything anymore and it took a long time until I got it under control again. Everything has only been going well for me for a year and a half now, so I didn’t want to put my ailing body through anything that had an impact on the immune system, and thus again on my intestines and thus again on my psyche.
I was doing really well at the time of the diagnosis, and I didn’t want to let that be ruined again. Then rather a year with a great quality of life, instead of dying after three weeks from the stress of chemotherapy.
I could already see myself lying there with this kind of therapy getting me down. And it really would have ruined everything I had worked so hard for. I wasn’t ready for that.
“The 12th month of our journey has begun. On May 29th last year I was in the hospital and was diagnosed. Now, eleven months later, we have experienced so much. Today I can walk better again, the pain medication is working again, however, I now take the cortisone tablets in the evening.
I slept so well last night. That’s 21 The decision against chemo I see heaven completely against the experience of the doctors who say you can’t sleep at night. Things just work the other way around for me. I’m excited for tonight.”
Due to my high sensitivity, I have a special relationship with my body, I am very sensitive to what it needs and what it doesn’t. Other people might be more likely to try something again in such a situation because they simply don’t have this connection to their body.
Theoretically, of course, it could have been that the chemo would bring me healing. But with what quality of life? Extending my life with an uncertain outcome – that just wasn’t worth striving for for me.
Not everyone is aware every day that their life is about to end. The doctors said I had been around a year, plus or minus. But the decreasing time didn’t make me nervous.
My only wish for my life was to be able to live my calling, which was part of bringing people closer to God and Jesus, to the end of my life.
I experience the days that passed after the diagnosis more consciously. I live more in today because I don’t know if there is a tomorrow for me. Plans extend into the next week at most, nothing else is foreseeable.
I used to plan years in advance, I knew exactly what I was going to do on which date. That actually came naturally from my service and my husband’s job.
I was able to ask Günther at Easter: “Tell me, we’re having this Advent celebration in December, can you already tell me the topic you’re going to talk about?”. At Easter! That’s how I was, it’s definitely changed a lot. Time for me is today, now.
We had plans. The diagnosis slammed into our lives and shattered everything we imagined. I knew that my father would work for another five years before he retired. We talked about it more often as a family, also because I’m my parents’ only child and I wanted to be there for both of them.
I myself am rooted in central Hesse and have no long-term plan to return to the homeland of my childhood. For this reason we planned to buy a piece of land together near where I live.
We wanted to build a barrier-free and age-appropriate small house on top of it, so that my parents could live there and be close to me at the same time. For the very long term I had in mind to sell my own big house when I was old and move into the small one with my wife.
We already had a plot of land in mind, we had already invested a year in planning work with an architect, had finished construction plans, everything was actually ready. In April 2018 we were at a bank and were about to set everything in motion and buy the property.
Four weeks later I was with a business partner on a large order in Frankfurt with 80 people when my father called me at noon and said: “We have to talk” and told me about the cancer diagnosis.
On the same day I stopped buying the property, paid the architect and put everything else on hold. It was immediately clear to me that our plans no longer made sense.
Immediately afterwards I thought about what we could do now and do it as quickly as possible to support them both. Of course we had to rethink. The distance from me to my parents was 120 kilometers – that made me unable to act.
So I said to my parents, “I can’t support you from here, please consider moving here.” At that time, my mother was still in a state where she could move, the wound, which was created half a year after the move was not yet open, she could move, could walk, was mobile.
But it had to happen quickly, no one knew what the situation would be like in a few months. Within six to eight weeks after we decided to move, I found an apartment for both of them.
The move was from late August to mid-September. This showed once again that plans are of course important, but the framework conditions had changed radically from one day to the next. There was no point in mourning that. Another solution was needed now – and we found one.
With the decision against chemo, it was clear to me that I would need nursing care and that Günther would need all the help we could get. So we said yes to moving and Ben took care of finding an apartment.
Our plans have all had to be subordinate to the new situation. But for the time being, apart from the move, we continued on the path that we had laid down in our annual plan – as long as I could.
We vacationed in the Bavarian Forest in the summer of 2018 and went to a camp that Günther led. What was interesting was that for the first time in our lives we had been away from Hagen for such a long time.
We were on the road for six weeks and it was really great. We made good use of it and talked about a lot. I also love the mountains. We hiked a lot, visited my brother in Austria together – that was planned beforehand, but afterwards I have the feeling that we used the time very intensively by being in the present and saying to each other: “How nice that we can experience that today”.
In their midst, Esther Schulz went to heaven in peace and with great hope on July 8, 2019.
