Lonely – really!?

Dear family and friends,

For days I have been thinking about what to write in my blog to give you – together with an update of my state of health – a personal insight into some of the experiences and events of the last weeks. Of course I don’t want to bore you with medical details. And it should become a meaningless text, and then also too long report due to trivial everyday things.

That’s why I want to start – before I answer the question about the title – with a summary of the treatment so far and the outlook on the next steps.

First phase completed

Last Thursday I got the last injection of chemo, and on Friday I took the last tablets; thus the 4^th cycle and altogether this first three-month phase of treatment is almost finished. The last few days have been a roller coaster of emotions, pain and well-being. But now I can feel how my body is recovering day by day, the stored water, which made me a bit bloated, is getting less, various systems are getting back into normal gear, and the feeling of being constantly heated like an oven is decreasing. So slowly, I guess, the foreign matter is flushed out. I have a break until the next appointment on July 12! What happens next?

Preparation for the next phase

Replacement of bone marrow with the patient’s own stem cells.

At the appointment on the following Monday, the oncologist in charge of my treatment performs another puncture of the bone marrow, as he did at the beginning, when it was a matter of confirming the diagnosis of the disease. This time he wants to determine the result of the entire chemo phase on the basis of the laboratory values; with the hopefully pleasing result he then registers me the following day at the University Clinic Zurich for the next phase, the “high-dose chemotherapy with autologous stem cell transplantation”. I will tell details about this in a later post.

Loneliness

From the weekend before last, I would like to share with something of the feelings and experiences I had during the first week of the 4^th cycle.

After the 3^rd cycle I was feeling better from day to day. Saturday morning I was even able to take a longer walk on the beautiful summer morning. Our oldest daughter was visiting with her husband, and they spoiled us that weekend with good food, practical support, and showed us their love by visiting us.

So I was looking forward to Sunday, when I would finally not only see our apartment, the clinic or the physio practice, but participate in the church service and see the friends. On this Sunday even an afternoon with lunch and coffee at a couple’s house in their beautiful garden was planned. This was – after a year and a half of Corona – actually the first time we all had the opportunity to have fellowship and exchange again. Of course, I knew that I would not be able to make it through the whole day. That’s why we had planned that I would at least be there for the first part of the service, and then after a break at home I could participate for an hour in the afternoon.

But already on Saturday evening, unfortunately, the back pain increased, and when I got up on Sunday morning, a leaden weakness and tiredness settled on me again, so that I sadly had to say goodbye to the thought that I would get out of the house today. Actually, it was nothing new, but still, every time you first have to deal and cope with this loss and the pain of not being able to do something that you had wished for.

My wife and I were at least able to participate in the service via livestream. In such moments, the possibility of technology really feels like a blessing. Therefore, I would like to thank from the bottom of my heart all those who make such things possible, often unnoticed in the background, and who, for example, get up earlier than others on Sunday, test and prepare everything, and are often hardly noticed or receive recognition for it. We often think of those who sing in the spotlight or stand in the pulpit as the stars – we usually don’t see the real everyday heroes. It is you who are the heroes for many sick and no longer mobile people!

Unfortunately, my condition continued through Monday. And after our children left at noon on Sunday, it became very quiet in our house. Of course, my body needed that rest, and I slept most of the time. But also the phone remained silent, no calls came, no messages, nobody asking about us.

Can you imagine how that makes you feel? When I was healthy, I couldn’t imagine that either, I had no idea about such feelings. I sometimes knew of chronically or seriously ill people in my circle of relatives or friends. And yes, one sometimes thought of them full of pity. And that they might be happy about a call or a visit. But what would I say to them? I felt speechless and helpless in the face of inconceivable and incomprehensible suffering? I didn’t know how to deal with such sick or permanently bedridden people? And then everyday life caught up with you again and you forgot about these people.

Now I was in this situation, and I had the feeling that I suddenly no longer belonged to normal life. To be just as forgotten, left alone, somehow no longer belonging. (I had to admit later how short-sighted and subjectively wrong my thinking was, but I still want to honestly describe what was going on inside me). The others lived their lives, we were stuck here with my illness and in the dead end, on the siding – in the 2^nd class.

Is loneliness something objective? In sociology, for example, we speak of being alone as an objective concept, and that is when we are talking about social isolation. But loneliness is a subjective feeling that we often feel strongly.

Over the course of Monday, as I talked with Dietlind about these feelings, she helped me get a different perspective. For one thing, objectively, we continue to be overwhelmed by how many ask about us, tell us they are praying for us, and inquire about us regularly; not a week goes by that we don’t receive a floral greeting, or a postcard, or some other message from different parts of the world!

On the other hand, my wife reminded me of the person who really experienced loneliness and being alone, and of whom the Bible says that he is full of compassion and sympathy because he experienced everything as we do. This helped me a lot to correct my view and to find comfort in the Lord Jesus, who is constantly close to me even in loneliness.

A few days later I spoke on the phone with my friend and fellow sufferer of this disease, and he immediately knew what I was talking about; he and his wife knew such feelings. It was good to be understood and to encourage each other. We wondered where the lack of understanding for such feelings comes from in some people, so that one almost feels something like rejection. I think to some extent it is due to our society, which tries to exclude the subject of suffering, chronic illnesses and death. On the other hand, it is also due to the resulting uncertainty about how to deal with it. How many people have said to me when I told them about my illness, “I don’t know what to say.” Yes, I used to feel that way too! And unfortunately, this often results in us distancing ourselves from suffering people because we don’t know how to deal with suffering and the subject of death.

But I am also fully aware of the curse of our time. No one has time anymore. The question: “Do you have some time for me?” seems to have become a rhetorical question per se. We are like driven people – for the elderly, for example, who sit lonely in nursing homes, who are no longer “good” for anything, even the closest relatives often have no time: no one visits them, no one occupies them, plays with them, sings, spends time. Living, school, hobbies – everything eats us up. The media contribute their share to the fast pace. In my gloomy description, I am not ignoring the many situations where, thank God, we experience it differently! There are indeed still some who drive two hours to help in the garden. Or who uses his morning for a visit or driving service. Please don’t get me wrong! We are so grateful that we actually experience it also differently.

Do you know what therefore I wish for? (I am speaking now to those among the readers who knew me before.) I wish, I think also for others in a similar situation, and especially for our wives, that we do not distance ourselves from each other. I wish that you would meet me normally or in the same way – as often or as seldom as it was before. That you visit me – I will say openly if it is too much for me. That you just call me in between – if it doesn’t work because of pain or appointments and I don’t pick up, just try again later. And for example, that you just tell me how things are going with you – you don’t have to say anything special at all, my illness is not THE topic, but rather unimportant in such encounters; I’m much more interested in how your children are developing, and whether or not you got the new job, etc. … just normal life. So we can share a little bit of it, and you make me feel like I still belong. Which is the case! And I like to tell you about my everyday life, without burdening or boring you with details of medications and injections and other personal experiences. My life does not revolve exclusively around my disease! I am also in the process of learning and understanding that your life with joys and sorrows, with work,  leisure and pleasure, with carefree travels and experiences, just goes on as normal; neither can you be held responsible for my illness, nor does your life have to stop because of my illness. No one needs to have a bad conscience.

But does anyone have to become lonelier because of it? No, really – there are already far too many lonely and desperate people! Do you want to help with that? I’m curious to hear what you think about it. If you feel compelled – think about whether there are people in your environment, your community or the wider area who are in such a situation. I have just felt this for two days, but am objectively not really lonely (for which I am so grateful). I wonder how someone feels who has been sick for two months … or two years? Or has spent 20 years first in assisted living, then in partial care, now in full care?  Maybe you’ll find some meaningful visiting service to do?

Finally …

Now this post has become much longer than I originally thought. But the topic has simply become important to me over the past few days. I hope it helps you a bit. And I am looking forward to the normal life with you! And that is every day that God gives me in His grace and also to you. If we direct every day towards the goal that God created us for His glory and live, work and communicate with others accordingly, then we can positively change the atmosphere of our environment. Despite incurable disease.