This is a diary, an account of the period 1 Aug 2018 and August 2019, cataloging the progress of Stephan's illness (pancreatic cancer) and whatever else happened during that time... I did not have the courage or the wish to upload this earlier as it is very personal and very detailed but am doing so now with the hope that it might be of some help to other carers or to those who might want to know more about the progress of this terribly aggressive disease. This is a battle one cannot win. And it is very painful to not be able to help one's dear ones, the helplessness is numbing. Yet one has no choice but to keep going...to do what one can...to hope...
We were told of Stephan's condition on 1 Aug. 2018. Today is the 1 Nov. Three months have gone by. Three months spent in agonising, in uncertainty, in worry and in waiting at hospitals. I ask myself today how these three months would have been different if we had not discovered the disease when we did. How would it have been different, would it have been easier, more difficult, and how do we make our way forward from here....?
When we first heard the news, it did not really register. We heard but it didn't really understand what it meant. The whole family came together, in shock, and we tried to cope, as best we could. We waited for a few days for someone to tell us that it was a mistake, or that it was all a cruel joke; when that did not happen we started to ask ourselves what it could mean... we had taken Stephan to the doctor only because he had been complaining of a slight stomach ache and constipation, every now and then. He had also lost a lot of weight (more than 15 kilos in the last year) in the last few months. [And his weight loss made him look sick. So much so that the doctor who first examined him at Gerolzhofen told us that he had thought to himself when he first saw Stephan 'Das ist kein gesundes Abnehmen.] I was expecting the doctors to pull him up for not drinking enough water and for leading a rather sedentary life and advising him to go for walks and doing some more physical exercise. Nothing had prepared us for the diagnosis -- there was a tumour which could not be removed, or neutralised; they would try to contain the progress of the disease but they could not heal, we had to be ready to face the worst, soon.
The news of Stephan's illness changed everything. It took us a couple of weeks to even begin to talk to each other about it, a month or so before I found the courage to tell a friend or two about what had happened. We also changed our plans and priorities, and put everything else on hold -- we were getting some repairs done in the house -- we stopped that; we cancelled a long holiday to Armenia and Georgia we had planned for September. The only days that were marked large in the diary were the dates when the Chemo was supposed to be given, once a week.
But what did it mean? The doctors stand was clear, 'The disease has not made him sick. We don't want the treatment to make him sick. We want him to be able to enjoy a good quality of life for as long as possible.' That much made sense. So they decided not to give him the full strength of Chemo but a much reduced one. Palliative Chemotherapy, it is called, for as long as he could take it. We agreed. At the practical level, Chemotherapy meant going into hospital once a week, getting blood tests done regularly and keeping the side effects of chemotherapy under control. Moreover one had to feed him with freshly cooked, easily digestible, nourishing stuff to see that his weight did not go down any further, and to keep him away from possible infection. He had to go for a walk daily. That was what had to be done, at the practical level.
But what about the emotional level -- how does one cope with the fact that the illness is not curable, that he would die? Well, we will all die, why was this anything different? Yes, we will all die, but we did not know when -- but here it was as if someone had drawn a line and told us that Stephan's life will not go beyond a certain point, given his illness. That is the difference. Everyone will die someday, but as long as we do not know when, we tend to pretend that we shall live forever, at least as long as one is in good health. Being told that one is terminally ill is as bad as being given a death sentence, for one then knows, almost for sure, that death is coming closer, faster than one had expected, and can strike any time soon.
But what difference does this knowledge make to people? Different people take it differently. Most, like Stephan, first go into complete denial. 'No, that is not true. The doctors are mistaken. I am not ill, everything will be fine.' To add to his doubts about the diagnosis was the fact that Stephan did not feel unwell at all so far -- the doctors have told him there was a tumour inside him, but it was not painful and it did not bother him at all; even the chemotherapy that he was undergoing had not made him too sick -- he is a little fazed for a day or two after but nothing like the horror stories that one hears. Given the fact he feels almost normal, it is even harder for him to believe what he has been told about his illness and its prognosis. Ever so often he has told me, 'The doctors can be wrong. It will all be all right.'
Those who are in denial just try to carry on as if nothing ever happened -- there is no urgency, no need to change how one lives or what one does -- everything as before... When one is denial one also does not want to talk about the problem with others, and that adds to the pressure within, as one then keeps all ones fears, doubts and worries inside and does not want to confide in anyone. This condition is very painful to sit and watch especially for those around the person, because one just does not know how to persuade the sick person that he is only evading the truth, and losing valuable time, by doing so. On the one hand one would wish that he was right, that the illness could just be wished away, on the other hand, one also knows from the doctors that there is something seriously the matter and that just pretending that something does not exist cannot make it go away. In most cases, one just has to keep waiting for the person to get over the phase of denial and to move on to the next phase, that of acceptance.
But acceptance means surrender, for some. Acceptance means giving up, means admitting defeat. That does not come easily to many, and this includes not just the sick but also their immediate family. But sooner or later, one has to come to terms with the verdict hanging over one's head. But even after one has accepted the verdict, there are different ways of coping. One can really sink into acute depression and really give up, even before the time has really come. In such a situation one can become very narcissistic and so full of self-pity that one can even start behaving nastily to all those around, for no other reason but that they are not similarly terminally ill. That can be very difficult, especially for those around, to try to keep the spirits up and to see that the remaining time is spent in a happy and meaningful way. Some others can go to the other extreme and go into a crazy hectic mode -- everything that one planned to do in life will have to be done but in limited time, so everything has to be done at double speed. In that case, it can be very tiresome, for the person himself as well as for those around him, to make him slow down, to take care of him and to ensure that he does not overexert himself.
Yet others can try to be sensible about it -- since one might not have time for everything, one tries to prioritise -- what is most important, what can be kept for later if there is still time... Are there things I would like to do, people I want to meet, places I would like to go etc....are there any unpaid debts, anyone to make up to, anyone to say sorry to, ...are all my documents in order, have I explained what to do after I am gone to someone, have I entrusted all the papers and documents, given away my things to those I hold dear, made my will, told someone how I would like to be buried etc etc.
It is these people, who somehow have the strength to accept and then adapt who often are more open about their problem, they talk to others, take courage from other similar positive stories and try to find ways to be able to keep going and get better. Perhaps men and women are different in this respect. Perhaps it is harder for someone like Stephan, who has always been in control, not only of his own life but also has been the boss both at home and at work for years and years on end, to cope with the loss of control. Perhaps it is easier for women to let go, having learnt to live and adapt to situations so very often in their lives, it is easier for them to accept this final verdict as well. I have heard of a terminally ill woman going so far as to plan her own funeral, after having taken care of everything else.
Spend your time well, do nice things together, go to the theatre, opera, go on holiday -- many have told us, but how can one force these things, one cannot just change one's ways overnight simply because one does not have long to live? How can one suddenly start going to the theatre and opera frequently even if one was not feeling too well, when one had not done these things even when one was not sick? One can try but then having to do 'nice' things together can also quickly become a source of additional pressure...I remember telling my mother exactly that after she recovered from a very serious illness that almost took her life. That was exactly a year before she actually passed away. 'Forget about your normal routine,' I had advised her, 'Spend the time you have been given to do the things you always wanted to do but never had time for.' She had listened to me without comment, and then the moment I was gone, she had went back to her old routine. She changed nothing at all in her ways till the very end.
Some terminally ill people refuse palliative chemotherapy altogether, choosing to live a normal, even if shorter, life till the end, and not have to struggle with the many side effects of undergoing chemotherapy. There are others who completely refuse normal drugs but then go crazy looking for alternative remedies -- nature healing, Ayurveda, Chinese medicine and the like -- and then undergo such treatment clinging to the hope that it can work miracles. In times of crisis, it is faith that can work wonders, so while some alternative treatment does not work for skeptics, the same can work miracles in others. In any case, there is no harm in trying or also taking alternative medicine along with the normal treatment. There are so many different alternative treatments available that the problem often is choosing and also making sure that the medicines do not neutralise each other. But for someone like Stephan who has never allowed himself to think in 'alternative' terms, there was no question of choice -- it would be the normal 'school' medicine, and nothing else, period!
Which is better -- to die instantly in the full of life in a traffic accident or to be given the chance to live a few months, with the knowledge that the end is around the corner? I guess this must depend on the person in question but when one thinks of it, there is something so unfair about dying suddenly in an accident because one simply never was given the chance to tie up the loose ends, say sorry to someone, clear one's debts etc. In that sense, being given some time, even if it is only a few months, can be a better option, macabre though it might sound. But how should one use that time that one has? Should one try to do the things one wants to do first? Or should one concentrate on those things that would make life easier for those left behind? Again this is a personal choice ...
And what about the people around, the care givers, the spouse, the family and friends? How are they supposed to react to the knowledge that the life of a dear one is numbered? It is a huge shock also for the immediate family but then the primary care givers are supposed to be these superhuman people who can keep their own emotions -- fears and anxieties -- in check and be there to be able to support the sick person when he needs it. Just sitting and watching and being there for the other person can be the most difficult of all jobs. And it is also not just the present, one is also plagued with worry about what 'after'? It is hard to see the future looming like a huge boulder hurtling down the mountain directly towards you and be able to do nothing, not be able to move out of the way, just wait for it to come and hit you. And just when you should be concentrating full time on care giving, one feels even guilty of being selfish and worrying about oneself. It can be very very complicated.
As for telling people back in India, just the sheer thought of people coming up to me to commiserate, to tell me numerous other stories of people who had cancer and how they handled it, and to give me well-meaning advice about what I should do -- go to this temple, take the help of that sadhu, offer this pooja, do that jagya, try out that herbal cure, speak to that doctor, give him mani-muni sak to eat, etc etc. -- made me decide not to make the news public. But I had this desperate need to tell a few of my friends about what was going on, much before Stephan was ready to talk about his problem with his friends. One thing I realised while doing so -- given any of my friends it was clear to me immediately whether I needed to tell him or her or not -- I found myself confiding in some friends who I don't normally communicate with, while I felt no need to tell some others with whom I otherwise chat almost everyday. It was rather strange to see how clear the division was and how little I had to think to sort my friends in one or the other lot. The few friends who know have stood by me steadfastly so far, and I feel very lucky to have them. But I also know that this is my cross, and I will have to bear it, that although I am lucky to have so many who will hold my hand when I need it, I am essentially alone here, and that it is my problem, and my problem alone. Others have their own lives and their own problems and I have to try to manage on my own as long as I can.
In the last months I have understood that the only way to cope for me is to put my head down, concentrate on the daily everyday things that need to be done and not think too much about the bigger picture. For honestly I am scared to look, to face the problem in its entirety. Perhaps it is the same for Stephan. That is why he still seeks refuge in his study for most of the day, even though he does not manage to do very much. Perhaps that is why he does not talk about his illness with others -- he was never the type to talk about his problems with others. Perhaps that is why it is hard for him to stop sitting in his office downstairs and trying to do mathematics, rather than try to write a testament or put his papers in order. Because that would mean he has accepted the harsh verdict -- that his days are numbered, and that is what he does not want to do.
Maybe that is what one needs to work on -- one has to help him get to a state when one is able to face death straight on in the face and say, 'Come if you have to, I am ready.' But then also having the positivity to say that 'Since I am still here let me make the best of it, be happy and spend time with those I love and do at least some of the things that I have always wanted to do'. Sounds very good but how many terminally ill people really find the strength to arrive there? On the other hand, with the clock ticking away and the countdown long begun, there is not much time to lose, for his physical condition will get only worse, and once the pain and the discomfort starts, it will become much harder to remain positive. That knowledge, added to the fact that I am a rather impatient person -- someone who believes in the motto 'if there is something to be done, do it now' -- makes me desperately want to help Stephan to make his peace with the harsh facts facing him. But how do I do that? How can I help him to accept the diagnosis without hurting him, without destroying his self-confidence, without breaking him altogether?
And a more general question, how do we make our way forward from here? Good question. But honestly, I don't have a clue. I only hope and pray that I find the strength, the patience and the courage to cope with the days and months ahead, and to be able to give to Stephan the love and support he deserves.
Update on 2nd December
Another month has passed. The first staging, that is a round of tests to check the impact of the Chemo were done, at the beginning of November. The disease has not regressed but has not progressed either -- so that is good news given that Stephan is only being able to take a very reduced dose of Chemo. So the second stage has started, and will continue for the next 8 weeks (2 cycles of 3+1) after which there will be the second staging in early 2019. Hans came in the beginning of the month for a few days. Fournier came all the way from Montreal to see Stephan and stayed with us for 4 days at the end of the month which was very nice. Ruth and the kids came for a weekend too.
Sometimes I go crazy trying to get Stephan to do something -- anything -- there is just so much to do, but he is resistant. The only things we succeeded in doing were a visit to the tax consultant to give him the papers for our tax return for 2017 and another visit to a Notary in town to find out more about the Will (testament). But that was already in the first half of November. Since then nothing has happened. I offered to help but Stephan turns it down saying he will do it himself. My not being able to write Hochdeutsch is the standard reason given for turning down my help but I guess it is something else.
End of the month I have told myself that there is no point in pushing Stephan and going crazy over his inactivity -- that I should rather find myself something to keep myself busy so that I don't have the feeling I am wasting my time and my life waiting on him. I have started reading...since I am not able to write or do any translations...don't know how long I can keep my patience. Latest by Christmas, something must happen.
Update on 5th Jan 2019
We ushered in the new year by going to a concert at Nuernberg which was very nice, but then returned with severe bronchitis and asthma attacks (Stephan) and me with a very bad cold and running nose. Anyway, I have recovered but Stephan is still quite sick. We went to a pulmologe in Schweinfurt yesterday. Meanwhile the Christmas period was happy and peaceful with Ruth, Hans and their families visiting us for only a few days this time. Inez was ill and cancelled and Bene could not come. Not sure what 2019 has in store for us but Stephan is completely unable to think logically or move things forward -- so it is taking long to make progress in every front, and the mood is so dark and depressing that I am not sure how long I can hold out like this...
Update on 26th Jan 2019
Increased dosage of Kreon has solved his indigestion (and Durchfall) problem. But the bronchitis is still not gone although we have tried everything, including cortisone. The doctor thinks Stephan has some form of chronic asthmatic bronchitis because of his many years of smoking. And the body weight is beginning to fall again -- it is down to 71.4 kg. today. I am at my wit's end. What should I do? One Chemotherapy session had to be cancelled (on the 16th Jan) because of the acute bronchitis. Then that same night Stephan was restless and when I asked him what the matter was, he told me that he was not able to do the things that he had to do, that all his jobs were piling up, that his brain did not work any more and that he had become a burden on all of us etc. And that I was right to tell the doctor that he was so confused after the Chemo last time on the 27th December...[The evening after that Chemo on the 27th Dec. Stephan had high fever, was completely delirious and was completely confused about the dates etc.]. That was the first time he sounded depressed and seemed to acknowledge that something was the matter. I tried to console him as best as I could. The next day he was better... thank God. But I think he can slowly see that he is losing it mentally, even if not physically.
The reports of the second staging were very good -- the tumour had not grown, had even shrunk a little, so had the many lesions. So very good news there. Meanwhile Bene has bought her tickets to come to Germany in Feb. and hopefully then I will be able to go to India for a couple of weeks...if it is only to get away from this constant tension.
Update March 2019
While I was in India Stephan to be hospitalised with high fever. His lung infection was still there even after three months and causing a lot of trouble. They put him on some very strong antibiotics for the third time for the same problem and hoped that this time he will be cured. Thankfully the fever came down after the first dose and he was released from hospital the next day. But the next staging results at the beginning of March were not good -- it seems the disease had spread to the lungs and this means that the Chemotherapy that Stephan was undergoing was not effective any more and would have to be discontinued. What the options are for further treatment are not clear, but Dr. Kunzmann wanted to wait till Stephan's lung infection was completely gone before coming to a decision about the future course. Meanwhile Stephan continues to be delusional and weak, and feels quite tired most of the time. God alone know where all this is leading.
Another difference to his earlier condition is that Stephan has pain in the stomach and cannot sleep well at night. That makes a big difference. He takes a painkiller (Novalgin) every night but even then he is restless and cannot fall asleep as he earlier used to. We went on a one-night trip to Schwaebisch Hall. Stephan drove. After walking around the town for about an hour, Stephan was tired and needed to rest. It could be general weakness, it could be fluctuating blood pressure. We plan to go on this week long cruise next week. God alone know how long he will hold up.
We met Dr. Kunzmann on 27th March. The CT showed that Stephan's lung infection had healed completely but also that the monster disease has spread to both his lungs. As such, he told us that the Chemotherapy that Stephan has been receiving so far has to be discontinued, first because it is no longer able to keep the disease from spreading and second because the lung-infection was itself a side effect of the Chemo. After some discussion it was decided that Stephan will join another study next which tries out Immunotherapy, for which a biopsy of the liver would have to be made. We decided that Stephan would start with it as soon as we got back from the river cruise on the 8th April. Hoping that his pain and other problems will stay under control till then, but the pains are increasing and Dr. Kunzmann told us that without further medication, Stephan would not last longer than 6 months, with medication perhaps up to a year. So the countdown has really begun. God help us. It is really scary. Stephan was in some kind of shock after hearing this. He is very upset. I do hope he finds his way out and learns to make the best of the time he has.
Update mid April 2019
We went on a week-long cruise on the Danube with the MS Heidelberg, starting and ending at Passau from the 1st to the 8th April and it was a wonderful trip. An advance celebration of 10 years of marriage. After some initial hesitation and trepidation things calmed down and we had a very good time. We had a fantastic ship and wonderful weather and although Stephan was not always able to go sightseeing for long periods, we did manage some nice walks in Bratislava, Budapest, Estergom (Hungary), Krems (Austria) and Vienna. We also spent a night in the beginning looking at Passau and that was really nice. Hopefully we can make a trip to Regensburg soon. Only worry that he seems to have lost two kilos in weight despite all the heavy eating we did on the ship... almost down to 70 kilos now. Frightening...[When I asked the doctor [Sachs] about it, he said that since Stephan's disease was a 'konsumereinde krankheit' he would keep losing weight even if he kept eating normally -- the tumour would take in all the nourishment and he would continue to lose weight, unless he ate extra or was given supplemental nourishment.]
We were trying to make plans about how to celebrate Stephan's 75th birthday -- first it was Ulm/Tuebingen etc but then Stephan suddenly said he would like to go to Bremen for his birthday. Let's see if we can make that happen... it won't be easy for the people in Munich and in Zurich to travel to Bremen but hopefully some way will be found...
The news of Stephan's illness changed everything. It took us a couple of weeks to even begin to talk to each other about it, a month or so before I found the courage to tell a friend or two about what had happened. We also changed our plans and priorities, and put everything else on hold -- we were getting some repairs done in the house -- we stopped that; we cancelled a long holiday to Armenia and Georgia we had planned for September. The only days that were marked large in the diary were the dates when the Chemo was supposed to be given, once a week.
But what did it mean? The doctors stand was clear, 'The disease has not made him sick. We don't want the treatment to make him sick. We want him to be able to enjoy a good quality of life for as long as possible.' That much made sense. So they decided not to give him the full strength of Chemo but a much reduced one. Palliative Chemotherapy, it is called, for as long as he could take it. We agreed. At the practical level, Chemotherapy meant going into hospital once a week, getting blood tests done regularly and keeping the side effects of chemotherapy under control. Moreover one had to feed him with freshly cooked, easily digestible, nourishing stuff to see that his weight did not go down any further, and to keep him away from possible infection. He had to go for a walk daily. That was what had to be done, at the practical level.
But what about the emotional level -- how does one cope with the fact that the illness is not curable, that he would die? Well, we will all die, why was this anything different? Yes, we will all die, but we did not know when -- but here it was as if someone had drawn a line and told us that Stephan's life will not go beyond a certain point, given his illness. That is the difference. Everyone will die someday, but as long as we do not know when, we tend to pretend that we shall live forever, at least as long as one is in good health. Being told that one is terminally ill is as bad as being given a death sentence, for one then knows, almost for sure, that death is coming closer, faster than one had expected, and can strike any time soon.
But what difference does this knowledge make to people? Different people take it differently. Most, like Stephan, first go into complete denial. 'No, that is not true. The doctors are mistaken. I am not ill, everything will be fine.' To add to his doubts about the diagnosis was the fact that Stephan did not feel unwell at all so far -- the doctors have told him there was a tumour inside him, but it was not painful and it did not bother him at all; even the chemotherapy that he was undergoing had not made him too sick -- he is a little fazed for a day or two after but nothing like the horror stories that one hears. Given the fact he feels almost normal, it is even harder for him to believe what he has been told about his illness and its prognosis. Ever so often he has told me, 'The doctors can be wrong. It will all be all right.'
Those who are in denial just try to carry on as if nothing ever happened -- there is no urgency, no need to change how one lives or what one does -- everything as before... When one is denial one also does not want to talk about the problem with others, and that adds to the pressure within, as one then keeps all ones fears, doubts and worries inside and does not want to confide in anyone. This condition is very painful to sit and watch especially for those around the person, because one just does not know how to persuade the sick person that he is only evading the truth, and losing valuable time, by doing so. On the one hand one would wish that he was right, that the illness could just be wished away, on the other hand, one also knows from the doctors that there is something seriously the matter and that just pretending that something does not exist cannot make it go away. In most cases, one just has to keep waiting for the person to get over the phase of denial and to move on to the next phase, that of acceptance.
But acceptance means surrender, for some. Acceptance means giving up, means admitting defeat. That does not come easily to many, and this includes not just the sick but also their immediate family. But sooner or later, one has to come to terms with the verdict hanging over one's head. But even after one has accepted the verdict, there are different ways of coping. One can really sink into acute depression and really give up, even before the time has really come. In such a situation one can become very narcissistic and so full of self-pity that one can even start behaving nastily to all those around, for no other reason but that they are not similarly terminally ill. That can be very difficult, especially for those around, to try to keep the spirits up and to see that the remaining time is spent in a happy and meaningful way. Some others can go to the other extreme and go into a crazy hectic mode -- everything that one planned to do in life will have to be done but in limited time, so everything has to be done at double speed. In that case, it can be very tiresome, for the person himself as well as for those around him, to make him slow down, to take care of him and to ensure that he does not overexert himself.
Yet others can try to be sensible about it -- since one might not have time for everything, one tries to prioritise -- what is most important, what can be kept for later if there is still time... Are there things I would like to do, people I want to meet, places I would like to go etc....are there any unpaid debts, anyone to make up to, anyone to say sorry to, ...are all my documents in order, have I explained what to do after I am gone to someone, have I entrusted all the papers and documents, given away my things to those I hold dear, made my will, told someone how I would like to be buried etc etc.
It is these people, who somehow have the strength to accept and then adapt who often are more open about their problem, they talk to others, take courage from other similar positive stories and try to find ways to be able to keep going and get better. Perhaps men and women are different in this respect. Perhaps it is harder for someone like Stephan, who has always been in control, not only of his own life but also has been the boss both at home and at work for years and years on end, to cope with the loss of control. Perhaps it is easier for women to let go, having learnt to live and adapt to situations so very often in their lives, it is easier for them to accept this final verdict as well. I have heard of a terminally ill woman going so far as to plan her own funeral, after having taken care of everything else.
Spend your time well, do nice things together, go to the theatre, opera, go on holiday -- many have told us, but how can one force these things, one cannot just change one's ways overnight simply because one does not have long to live? How can one suddenly start going to the theatre and opera frequently even if one was not feeling too well, when one had not done these things even when one was not sick? One can try but then having to do 'nice' things together can also quickly become a source of additional pressure...I remember telling my mother exactly that after she recovered from a very serious illness that almost took her life. That was exactly a year before she actually passed away. 'Forget about your normal routine,' I had advised her, 'Spend the time you have been given to do the things you always wanted to do but never had time for.' She had listened to me without comment, and then the moment I was gone, she had went back to her old routine. She changed nothing at all in her ways till the very end.
Some terminally ill people refuse palliative chemotherapy altogether, choosing to live a normal, even if shorter, life till the end, and not have to struggle with the many side effects of undergoing chemotherapy. There are others who completely refuse normal drugs but then go crazy looking for alternative remedies -- nature healing, Ayurveda, Chinese medicine and the like -- and then undergo such treatment clinging to the hope that it can work miracles. In times of crisis, it is faith that can work wonders, so while some alternative treatment does not work for skeptics, the same can work miracles in others. In any case, there is no harm in trying or also taking alternative medicine along with the normal treatment. There are so many different alternative treatments available that the problem often is choosing and also making sure that the medicines do not neutralise each other. But for someone like Stephan who has never allowed himself to think in 'alternative' terms, there was no question of choice -- it would be the normal 'school' medicine, and nothing else, period!
Which is better -- to die instantly in the full of life in a traffic accident or to be given the chance to live a few months, with the knowledge that the end is around the corner? I guess this must depend on the person in question but when one thinks of it, there is something so unfair about dying suddenly in an accident because one simply never was given the chance to tie up the loose ends, say sorry to someone, clear one's debts etc. In that sense, being given some time, even if it is only a few months, can be a better option, macabre though it might sound. But how should one use that time that one has? Should one try to do the things one wants to do first? Or should one concentrate on those things that would make life easier for those left behind? Again this is a personal choice ...
As for telling people back in India, just the sheer thought of people coming up to me to commiserate, to tell me numerous other stories of people who had cancer and how they handled it, and to give me well-meaning advice about what I should do -- go to this temple, take the help of that sadhu, offer this pooja, do that jagya, try out that herbal cure, speak to that doctor, give him mani-muni sak to eat, etc etc. -- made me decide not to make the news public. But I had this desperate need to tell a few of my friends about what was going on, much before Stephan was ready to talk about his problem with his friends. One thing I realised while doing so -- given any of my friends it was clear to me immediately whether I needed to tell him or her or not -- I found myself confiding in some friends who I don't normally communicate with, while I felt no need to tell some others with whom I otherwise chat almost everyday. It was rather strange to see how clear the division was and how little I had to think to sort my friends in one or the other lot. The few friends who know have stood by me steadfastly so far, and I feel very lucky to have them. But I also know that this is my cross, and I will have to bear it, that although I am lucky to have so many who will hold my hand when I need it, I am essentially alone here, and that it is my problem, and my problem alone. Others have their own lives and their own problems and I have to try to manage on my own as long as I can.
In the last months I have understood that the only way to cope for me is to put my head down, concentrate on the daily everyday things that need to be done and not think too much about the bigger picture. For honestly I am scared to look, to face the problem in its entirety. Perhaps it is the same for Stephan. That is why he still seeks refuge in his study for most of the day, even though he does not manage to do very much. Perhaps that is why he does not talk about his illness with others -- he was never the type to talk about his problems with others. Perhaps that is why it is hard for him to stop sitting in his office downstairs and trying to do mathematics, rather than try to write a testament or put his papers in order. Because that would mean he has accepted the harsh verdict -- that his days are numbered, and that is what he does not want to do.
Maybe that is what one needs to work on -- one has to help him get to a state when one is able to face death straight on in the face and say, 'Come if you have to, I am ready.' But then also having the positivity to say that 'Since I am still here let me make the best of it, be happy and spend time with those I love and do at least some of the things that I have always wanted to do'. Sounds very good but how many terminally ill people really find the strength to arrive there? On the other hand, with the clock ticking away and the countdown long begun, there is not much time to lose, for his physical condition will get only worse, and once the pain and the discomfort starts, it will become much harder to remain positive. That knowledge, added to the fact that I am a rather impatient person -- someone who believes in the motto 'if there is something to be done, do it now' -- makes me desperately want to help Stephan to make his peace with the harsh facts facing him. But how do I do that? How can I help him to accept the diagnosis without hurting him, without destroying his self-confidence, without breaking him altogether?
And a more general question, how do we make our way forward from here? Good question. But honestly, I don't have a clue. I only hope and pray that I find the strength, the patience and the courage to cope with the days and months ahead, and to be able to give to Stephan the love and support he deserves.
Update on 2nd December
Another month has passed. The first staging, that is a round of tests to check the impact of the Chemo were done, at the beginning of November. The disease has not regressed but has not progressed either -- so that is good news given that Stephan is only being able to take a very reduced dose of Chemo. So the second stage has started, and will continue for the next 8 weeks (2 cycles of 3+1) after which there will be the second staging in early 2019. Hans came in the beginning of the month for a few days. Fournier came all the way from Montreal to see Stephan and stayed with us for 4 days at the end of the month which was very nice. Ruth and the kids came for a weekend too.
Sometimes I go crazy trying to get Stephan to do something -- anything -- there is just so much to do, but he is resistant. The only things we succeeded in doing were a visit to the tax consultant to give him the papers for our tax return for 2017 and another visit to a Notary in town to find out more about the Will (testament). But that was already in the first half of November. Since then nothing has happened. I offered to help but Stephan turns it down saying he will do it himself. My not being able to write Hochdeutsch is the standard reason given for turning down my help but I guess it is something else.
End of the month I have told myself that there is no point in pushing Stephan and going crazy over his inactivity -- that I should rather find myself something to keep myself busy so that I don't have the feeling I am wasting my time and my life waiting on him. I have started reading...since I am not able to write or do any translations...don't know how long I can keep my patience. Latest by Christmas, something must happen.
Update on 5th Jan 2019
We ushered in the new year by going to a concert at Nuernberg which was very nice, but then returned with severe bronchitis and asthma attacks (Stephan) and me with a very bad cold and running nose. Anyway, I have recovered but Stephan is still quite sick. We went to a pulmologe in Schweinfurt yesterday. Meanwhile the Christmas period was happy and peaceful with Ruth, Hans and their families visiting us for only a few days this time. Inez was ill and cancelled and Bene could not come. Not sure what 2019 has in store for us but Stephan is completely unable to think logically or move things forward -- so it is taking long to make progress in every front, and the mood is so dark and depressing that I am not sure how long I can hold out like this...
Update on 26th Jan 2019
Increased dosage of Kreon has solved his indigestion (and Durchfall) problem. But the bronchitis is still not gone although we have tried everything, including cortisone. The doctor thinks Stephan has some form of chronic asthmatic bronchitis because of his many years of smoking. And the body weight is beginning to fall again -- it is down to 71.4 kg. today. I am at my wit's end. What should I do? One Chemotherapy session had to be cancelled (on the 16th Jan) because of the acute bronchitis. Then that same night Stephan was restless and when I asked him what the matter was, he told me that he was not able to do the things that he had to do, that all his jobs were piling up, that his brain did not work any more and that he had become a burden on all of us etc. And that I was right to tell the doctor that he was so confused after the Chemo last time on the 27th December...[The evening after that Chemo on the 27th Dec. Stephan had high fever, was completely delirious and was completely confused about the dates etc.]. That was the first time he sounded depressed and seemed to acknowledge that something was the matter. I tried to console him as best as I could. The next day he was better... thank God. But I think he can slowly see that he is losing it mentally, even if not physically.
The reports of the second staging were very good -- the tumour had not grown, had even shrunk a little, so had the many lesions. So very good news there. Meanwhile Bene has bought her tickets to come to Germany in Feb. and hopefully then I will be able to go to India for a couple of weeks...if it is only to get away from this constant tension.
Update March 2019
While I was in India Stephan to be hospitalised with high fever. His lung infection was still there even after three months and causing a lot of trouble. They put him on some very strong antibiotics for the third time for the same problem and hoped that this time he will be cured. Thankfully the fever came down after the first dose and he was released from hospital the next day. But the next staging results at the beginning of March were not good -- it seems the disease had spread to the lungs and this means that the Chemotherapy that Stephan was undergoing was not effective any more and would have to be discontinued. What the options are for further treatment are not clear, but Dr. Kunzmann wanted to wait till Stephan's lung infection was completely gone before coming to a decision about the future course. Meanwhile Stephan continues to be delusional and weak, and feels quite tired most of the time. God alone know where all this is leading.
Another difference to his earlier condition is that Stephan has pain in the stomach and cannot sleep well at night. That makes a big difference. He takes a painkiller (Novalgin) every night but even then he is restless and cannot fall asleep as he earlier used to. We went on a one-night trip to Schwaebisch Hall. Stephan drove. After walking around the town for about an hour, Stephan was tired and needed to rest. It could be general weakness, it could be fluctuating blood pressure. We plan to go on this week long cruise next week. God alone know how long he will hold up.
We met Dr. Kunzmann on 27th March. The CT showed that Stephan's lung infection had healed completely but also that the monster disease has spread to both his lungs. As such, he told us that the Chemotherapy that Stephan has been receiving so far has to be discontinued, first because it is no longer able to keep the disease from spreading and second because the lung-infection was itself a side effect of the Chemo. After some discussion it was decided that Stephan will join another study next which tries out Immunotherapy, for which a biopsy of the liver would have to be made. We decided that Stephan would start with it as soon as we got back from the river cruise on the 8th April. Hoping that his pain and other problems will stay under control till then, but the pains are increasing and Dr. Kunzmann told us that without further medication, Stephan would not last longer than 6 months, with medication perhaps up to a year. So the countdown has really begun. God help us. It is really scary. Stephan was in some kind of shock after hearing this. He is very upset. I do hope he finds his way out and learns to make the best of the time he has.
Update mid April 2019
We went on a week-long cruise on the Danube with the MS Heidelberg, starting and ending at Passau from the 1st to the 8th April and it was a wonderful trip. An advance celebration of 10 years of marriage. After some initial hesitation and trepidation things calmed down and we had a very good time. We had a fantastic ship and wonderful weather and although Stephan was not always able to go sightseeing for long periods, we did manage some nice walks in Bratislava, Budapest, Estergom (Hungary), Krems (Austria) and Vienna. We also spent a night in the beginning looking at Passau and that was really nice. Hopefully we can make a trip to Regensburg soon. Only worry that he seems to have lost two kilos in weight despite all the heavy eating we did on the ship... almost down to 70 kilos now. Frightening...[When I asked the doctor [Sachs] about it, he said that since Stephan's disease was a 'konsumereinde krankheit' he would keep losing weight even if he kept eating normally -- the tumour would take in all the nourishment and he would continue to lose weight, unless he ate extra or was given supplemental nourishment.]
We were trying to make plans about how to celebrate Stephan's 75th birthday -- first it was Ulm/Tuebingen etc but then Stephan suddenly said he would like to go to Bremen for his birthday. Let's see if we can make that happen... it won't be easy for the people in Munich and in Zurich to travel to Bremen but hopefully some way will be found...
Stephan was very restless the night between the 23rd and 24th April. He told me things like: 'Ich kann nicht mehr. Ich habe euch alle versagt; ich habe meine Kinder versagt, ich habe fuer den nichts getan. Inez hat gedacht ich bin ein starker mann; Ich habe sie versagt. Ich habe dich versagt. Ich habe meine Freunde versagt. Es gibt so viel zu tun aber ich kann nichts mehr.'
Update 24th April 2019
Update 24th April 2019
Today is a sad day. We met Dr. Kunzmann who gave us the news that Stephan's illness has progressed significantly (more than 20%), so much so that the tumour marker which was 1290 in February went up to 4400 in March and was up to 7890 now! Although one could see it coming it is hard to cope when one sees it in black and white. The new therapy regime is due to start next Monday (29th April). Hopefully it will be able to arrest the progression. Also starting today Stephan was given a stronger pain killer (Capros, which is an opiate) besides Novalgin, to contain his pain which has increased and spread over the last month. He also has been asked to take energy drinks and eat more to compensate for the acute weight loss in the last weeks. God knows what it all means but the doctor gave us no consolation at all.
Meanwhile I have encouraged Stephan to write a 'birthday letter' summing up what he thought was important in his life as a way to help him to face himself. I sent it out to many of his friends who wrote back to say they were very touched. Initially Stephan was not too happy but slowly he finds the birthday letter idea not so bad.
3rd May
The new therapy started on the 30th April, his 75th birthday. For the first few hours he was okay but then a very severe diarhhorea set in, forcing the doctors to give him a cortisone infusion and further cortisone medication for 5 days. That made his sugar shoot up. You can never win.... Meanwhile Bene and Jonas also arrived on the 30th April, which is good. I am not alone and it is good.
They are going to do a kolonoscopy today, the 9th May, to try to figure out the reason for the acute loose motions.
They found no clue to what could be causing his loose motions.
After the second therapy, his bilirubin shot up so high that they put him on cortisone again to deal with it so that he doesn't get hepatitis. This is an unending struggle. Meanwhile we have cancelled our trip to Bremen and hope to celebrate in Volkach instead.
4th June 2019
It is official now. They have stopped the Immunotherapy (after he was given it only two times) because it had severely affected Stephan's liver (and also probably the gall bladder) and had caused the tumour marker to shoot up to 41000 (from around 7900) which is completely out of anything normal. So from tomorrow he is back to the normal Chemotherapy regime even while remaining part of the study.
Meanwhile Benedikta left and Inez arrived on the 31st May and will stay for a month. Stephan has been quite stable the last half of May but we have not been able to do much because of the frequent visits to the Klinik to check his blood values. But we did manage a quick trip to Schwaebisch Hall last Thursday to see the wonderful Matisse to Bourgeos exhibition at the Kunsthalle there...
A Conundrum!
We visit the Klinik regularly for treatment
We want to get treated so that we can live longer
But living cannot comprise entirely of just waiting to go to the Klinik for treatment, right?
For it makes no sense to go to the Klinik to get treated to prolong life only in order to be able to keep going to the Klinik.
We want to prolong our life, right? Otherwise why are we going for treatment?
That means we want to do something more with the time we gain by getting treated.
We want to live because we want to do something in the time we have.
Q1. What is it that we want to do with the extra time we gain by getting treated?
Q2. Are we doing what we want to do? In other words, are we using the time that we are gaining by treatment to do the things we want to do?
Q3. What is the point of prolonging life otherwise?
Update 21st June
We've had high drama the last few days. Stephan had therapy on Tuesday, the 18th morning. We came back home around 2;30 p.m. had lunch and Stephan went to sleep. He woke up an hour later, very unstable and shivering all over, and his nose was running, and the beginning of a delirium. His pressure and pulse were high. He said he wanted to go to bed again. He slept soundly till about 7 p.m. when I found him in the bathroom washing his specs in a basin full of water, into which he was putting little balls of toilet paper. He refused to respond to me or Inez, did not know how to walk or to sit down. His temp was 39.2 degrees. I gave him a paracetamol and a Ramipril and somehow got him to bed and called the ambulance. Stephan was completely delirious.
The ambulance came an hour later. It was 9:30 by the time we were at the Klinik. One of the doctors who we knew from the IOT was on duty -- a big relief. He said that Stephan's fever was due to an infection but they did not know from what, and that they would put him on a strong antibiotic to bring down his fever. They removed his pump from the Chemo. earlier. I stayed the night in the Wohnung, arriving there well past midnight.
He stayed the night at the emergency station M 61. That station is very badly organised and it was hard to get anyone to listen or to help. They moved him up to Station M 43 in the afternoon; there things looked much better and I left after settling him in. But just a couple of hours later they told him that there was an emergency case and that they would have to move him back to M 61 again to the adjacent room to where he was. This upset Stephan no end.
On Thursday afternoon Stephan was moved to M 84, the normal station for Dr. Kunzmann. His fever is down but he is still confused though it is getting better. Nothing happened on Thursday as it was a holiday. But Stephan told me that he had slipped and fallen in the bathroom in M 61 while wanting to have a bath on Wednesday morning. That no one stopped him from going to the bathroom in that state of delirium is a wonder. But M 61 is about the worst place to be in.
Not sure till how long he will have to stay. We have been in hospital since Tuesday, today is Friday but we have not seen Dr Kunzmann even once...hopefully we shall see him later today and know more about the next steps...
Thursday, 27th June
On Sunday, Stephan had a relapse, had fever and was also delirious and said all the clocks did not work etc. He was better in the afternoon. But they decided that he would have to stay till after the MRT was done on Tuesday.
Stephan was released on yesterday (Wednesday) but even till then they had no clue what had caused his fever etc. He is quiet and was very restless the whole night. He had difficulty with buttons. Switches things off and on. Forgets what is what. He says nothing works in his office downstairs -- not his computer, not his laptop nor the printer, and is very upset. Hope he remains stable the coming days. Supposed to get Chemo again next Tuesday, the 2nd July. Hope he is better till then.
Thursday, 27th June
On Sunday, Stephan had a relapse, had fever and was also delirious and said all the clocks did not work etc. He was better in the afternoon. But they decided that he would have to stay till after the MRT was done on Tuesday.
Stephan was released on yesterday (Wednesday) but even till then they had no clue what had caused his fever etc. He is quiet and was very restless the whole night. He had difficulty with buttons. Switches things off and on. Forgets what is what. He says nothing works in his office downstairs -- not his computer, not his laptop nor the printer, and is very upset. Hope he remains stable the coming days. Supposed to get Chemo again next Tuesday, the 2nd July. Hope he is better till then.
Saturday, 29th June
Wanted to go to the car at 5 a.m., could stop him only after I took him for a drive;
At the train station where we went to drop Inez, he confused wagen number with gleis number. Then he told Inez she will have to change trains twice because those two places were shown in the Anzeige.
He tried to fix the Fernbedienung for the TV but could not although it needed only a battery change.
Could not return the Einkaufswagen to get the change at Penny.
Sunday, 30th June
Told me over breakfast that Ransford had agreed to take charge of the CMFT which in fact he had not.
He had big problems with Zeitverschiebung, just confused about what happened first, what happened next.
Monday, 1 July
He told me that Liz would have cooked tasty dishes for all of us if she was around.
He cut all the geranium in the plants on the balcony when I asked him to trim the wisteria.
Sat in the car one day, started it and then started looking for his keys.
Tried to push a big leather belt around the waist band of his pyjamas.
On Tuesday 2nd July he was quiet and practised his addition and subtraction.Was more focussed in the evening. But he would forget things quickly and would ask the same things over and over again.
On Tuesday 2nd July he was quiet and practised his addition and subtraction.Was more focussed in the evening. But he would forget things quickly and would ask the same things over and over again.
Update 4th July.
That planned Chemo did not happen. Stephan started doing crazy things over the weekend 29-30th June (listed above) and on Monday, 1st July it was so bad that he could not add 2 + 2.5. I arranged to meet Prof. Kunzmann who called off the Chemo till a thorough neurological check was made. So Stephan was admitted to M84 on Wednesday and had an MRT and other neurological tests done. They showed nothing that could have caused his mental deterioration. So today, Dr. Kunzmann came and said that in all probability it was the Chemotherapy and the subsequent fever that had caused the loss of memory etc. and since he was getting better from one day to the next, they would try with doing nothing for the next few days and weeks and see how things go. We should report back to him if his memory deteriorates further or if the tumour starts to give him trouble. Otherwise we should just give him some time to recover from the trauma of the fever and the delirium that he had. He will be released tomorrow 5th July. Let us see how long this phase will last.
On Friday 5th July morning we were told that his mental problems could be because of the accumulation of poisonous ammonia in his blood, which happens when the liver is dysfunctional, and causes a condition called hepatitic encephalopathy which can be fatal. They have put him on medication to reduce the ammonia levels and till that happens, nothing else will happen, no further therapy, no further treatment. But when I arrived at the hospital in the morning, the sister on duty who knows Stephan well from the past started to cry saying that it breaks her heart every time she sees me. She said that Stephan is no longer the person he was and that he has become so feeble in his head, so insecure and so helpless that she cannot take it. She was very sorry for me, she said, because difficult times are ahead and I will have to cope...it was very sweet of her but it gave me the feeling that the doctors have given up on Stephan, they will not try to treat him any more and as long as he does not have pain from the tumour, they will just let him be. Once the pain starts, palliative medication will be given. I could feel a sense of giving up, of resignation, of finality in the attitude of the people in the hospital. Hope I am wrong.
That planned Chemo did not happen. Stephan started doing crazy things over the weekend 29-30th June (listed above) and on Monday, 1st July it was so bad that he could not add 2 + 2.5. I arranged to meet Prof. Kunzmann who called off the Chemo till a thorough neurological check was made. So Stephan was admitted to M84 on Wednesday and had an MRT and other neurological tests done. They showed nothing that could have caused his mental deterioration. So today, Dr. Kunzmann came and said that in all probability it was the Chemotherapy and the subsequent fever that had caused the loss of memory etc. and since he was getting better from one day to the next, they would try with doing nothing for the next few days and weeks and see how things go. We should report back to him if his memory deteriorates further or if the tumour starts to give him trouble. Otherwise we should just give him some time to recover from the trauma of the fever and the delirium that he had. He will be released tomorrow 5th July. Let us see how long this phase will last.
On Friday 5th July morning we were told that his mental problems could be because of the accumulation of poisonous ammonia in his blood, which happens when the liver is dysfunctional, and causes a condition called hepatitic encephalopathy which can be fatal. They have put him on medication to reduce the ammonia levels and till that happens, nothing else will happen, no further therapy, no further treatment. But when I arrived at the hospital in the morning, the sister on duty who knows Stephan well from the past started to cry saying that it breaks her heart every time she sees me. She said that Stephan is no longer the person he was and that he has become so feeble in his head, so insecure and so helpless that she cannot take it. She was very sorry for me, she said, because difficult times are ahead and I will have to cope...it was very sweet of her but it gave me the feeling that the doctors have given up on Stephan, they will not try to treat him any more and as long as he does not have pain from the tumour, they will just let him be. Once the pain starts, palliative medication will be given. I could feel a sense of giving up, of resignation, of finality in the attitude of the people in the hospital. Hope I am wrong.
16th July
So 18th June was the last time Stephan got Chemo. It is over. His liver cannot take it anymore. His eyes were a light yellow for the first time today. And there was some oedema in his lower lip and cheeks.
It seems there is some bacterial settlement in the large intestine, which could be the cause for his diahrorea problems -- so they have put him on a strong antibiotic from today which should handle both the high ammonia in his blood as well as his diarrhoea. Let us wait and see. We are supposed to go to the Klinik for a visit every two weeks. Nothing more.
21st July
Just when the diarrhoea problem looked like it was getting resolved a new problem has come up -- jaundice. Stephan went all yellow on Friday (19th) afternoon and after talking to Ruth we decided to take him to the Emergency at the Klinik on Saturday. They fear an obstruction in the bile duct from the tumour for which a stent might have to be inserted. He will have to stay there for the next few days...This is becoming a never ending story...Stephan's confidence in himself has got somewhat shaken from all this... hope he recovers...
The journey to the end
For along time I had had the recurring feeling that something would happen before 1st August this year, the day his disease was diagnosed last year.
Margaret Lyndoh wrote to me earlier in July and said that she was in complete panic about me and that she was very afraid for me. How did she know? I wrote back to her on the 18th July and reassured her that I was okay and that she should not worry for me.
On Friday 12th July, Stephan and I went to pick Ruth and the kids from Kitzingen. Stephan drove. When he started to also drive back, Ruth stopped him and asked him to move over. She drove back. That was the last time Stephan drove. Saturday, the 13th July, besides Ruth and the kids we invited Luis Salinas also for dinner and Petra and Ruzbeh were also in Volkach. We had bought a new Bundesliga ball to give Flori for his 10th birthday. We decided to give it to him earlier, and Flori played football for quite some time with Opa Luis and Opa Stephan. Stephan was a bit slow and also not too happy to play but he did. Later we had egg curry and puris for dinner -- Stephan loved it.
On Sunday 14th July, we had lunch in Volkach with Petra and Ruzbeh. Stephan was very quiet all through the meal and later it seems Ruzbeh told Petra, (from the colour of his eyes he says) that Stephan had two weeks to live, not more. But they did not tell me that till later.
The week went by nicely. As already mentioned we went to the Klinik on Tuesday 16th and with the antibiotic his diahhroea problem got completely controlled. Also his mental faculties cam back so much so that he planned to work with Luis at home on Friday. He actually prepared himself for this work on Wednesday and Thursday. He was very restless the night of Thursday-Friday but told me that it is because he is so excited about being able to do some 'real' mathematics again. On Friday, Stephan and Luis in his office. Later we had lunch with Forellen and I took Luis to the Bahnhof. When I returned, Stephan was having his afternoon nap.
At afternoon tea I noticed that Stephan's eyes were yellow. I tried all the numbers of the Klinik and the doctors and could reach no one except Ruth and the Stationsarztin at M84 who told me that it could be an obstruction in the bile duct and that if he was not better by tomorrow morning, then we should take him to the Klinik. At night when Stephan removed his shirt I could see that his whole body had gone yellow. There was no question, we must go to the Klinik on Saturday.
He was also very restless on Friday-Saturday night and did not sleep at all, so much so that he fell asleep only in the early morning and slept till around 9:30 a.m. Saturday morning Stephan was reluctant to get up and then reluctant to go. He spoke to Ruth at breakfast (around 10 am) who them told me that if he wants to sleep for a little while let him before going to the Klinik. I woke him up at 12:30 noon and said it was getting late and that we should go soon. He was quite sleepy and also reluctant. Anyway we drove to the Klinik. I left him to sit on a rock at the entrance of the Notaufnahme and went to leave the car. He was sitting there when I arrived. I called out to him to come to me but he did not move but waited till I got to him. He was not really steady on his feet but he did manage to get up and walk down the ramp to the entrance dragging his suitcase (which was not the right thing to do as we found out later).
The doctors at the Notaufnahme said that they also think it is an obstruction in the bile duct and that they were waiting to do an ultrasound to confirm. And that once it is confirmed, he could go home and return on Monday. But the young doctor who did the ultrasound could not make any sense of what he saw, he admitted that he cannot come to any conclusion and since they could not come to any definite conclusion, they could not let him go. He was moved to the Station M 42 very late in the night. The Bilirubin that was 12 last week had gone up to 16.
On Sunday he was more or less okay, and we went for a walk and had coffee and cake in the cafeteria. The doctors came and made him sign the papers for insertion of a stent. He was very sleepy but still sat on the chair and watched Formula I. I left him after he had dinner. They were giving him infusion with the hope that they could flush out the poison with the fluids. Later in the was moved to the last room along the corridor where there was another patient in the same room. But Stephan hardly noticed him -- he walked from the one room to the other but was too drowsy to be social.
The next morning, Monday, I arrived and saw that he had worn two shirts, one over the other, and was a little confused. The room mate said that he was rather restless during the night but everything was okay. I told him we should have a bath and took him to the bathroom and gave him a good bath. He held on to the rails but did not do very much. He also shaved himself, and combed his hair and asked me to clip his nails. He lay in bed and would very often fall asleep. Not interested in TV. He had to be fasting today because of the ultrasound planned for the day. We did not go for a walk.
The ultrasound happened around 2:30 p.m. The doctor who did it was stunned with what he saw -- he said: this is the liver, it looks like a starry sky, but all the stars are metastases and do not belong there; I would have much preferred to see a dark sky. The liver was completely perforated with the disease eating it up and looked like a holey sponge. That was already a shock but Stephan did not understand it too well. He then looked for the bile duct and found it after a lot of searching -- but it was fine and there was no obstruction. That meant that the high Bilirubin in the blood was being caused by the liver-malfunction. There was a lot of water accumulation in his stomach which was caused by the tumour.
We got back to the ward around 3 p.m. and I gave Stephan some muesli and milk to eat along with an apple. Which he ate happily. He then lay down to sleep again. Soon Dr. Kunzmann came to the ward. I was outside and he said he wanted to talk to me along first. Dr. Kunzmann told me that they had noticed the progressive deterioration of the liver from the blood tests, but did not think that things would deteriorate so quickly. He said that since Stephan was otherwise stable, strong and healthy, they had expected him to last out for a couple more months, perhaps even till Christmas. But the ultrasound today shows that he has only about 5-10 percent of his liver left and even that is slowly giving way...which meant it is a question of days. Just days. I could hardly believe this. He then said that they would stop all treatment immediately and put me in touch with the palliative station of the Klinik so that they can move him there asap and ensure that he did not have pain or discomfort. He also spoke about Ambulant Palliative Care and since I did not realise how serious it all was I did not know what to choose. But Dr. Kunzmann told me firmly that first they would move him to the Palliative station in the Klinik and if he gets better and wants to go home to die, then we can think of it later.
Dr. Kunzmann then went in to speak to Stephan and told him that their hands were tied as far as further treatment is concerned since the liver was deteriorating rapidly. Stephan thanked him for all that he had done for him. When K asked him whether he wanted to stay in the hospital or go home, he said, I want to stay in the Klinik. After he left, Stephan looked at me and said, 'Die haben uns auf die Strasse gestellt!' That was the first time I really heard him admit that he knew what was happening and that he also saw what the stopping of treatment meant. 'They are stopping all treatment because this is the end, right? He seemed to ask me. I did not know what to say. But the news had come so suddenly that even I believed that they are stopping treatment only till his liver recovers and that it is certainly not the end.
Later the lady from the Palliative station came to talk to Stephan. Stephan was sitting up. She asked him: So what are your problems? And Stephan answered: I have no problems. I am fine. The lady was taken aback and asked again the same question: He answered, yes I feel tired and sleepy but apart from that I have no problems. She asked him if he had pain, he shook his head and said No. Then the lady asked him: You tell me you have no problems. Yet you are in hospital, why? That question was too much for him and he said, Please ask my wife, she will explain. And I told her about the jaundice etc.
At some point the usual doctors of the ward made a round with the Oberarzt in the lead. The Oberarzt asked Stephan how he felt (to which he replied that he felt well) and whether he would like to know what they were doing. Stephan seemed not too keen to know but said, if you want to tell me, please do. So the Oberarzt told him that they were pumping a lot of fluid into his body to dilute the bilirubin and flush it out with his urine. Stephan listened without reacting, but for one moment, his face broke down as if he was going to start crying. But the next moment he composed himself and was back to his normal self again. I guess he understood that this was really very serious, if not the end.
Later in the evening, they brought him dinner and I told him that he should eat something before he takes his medicines. He did not want to eat the bread and butter and kept falling asleep even while eating. I asked him if he would prefer some more muesli instead -- he said yes. So I gave him some more muesli which he ate and then also the medicines that I forced him to eat. I asked him: Quaile ich dich? To which he answered: Yes, with a smile on his face. And then I said, But you know, don't you, that I do it only because i want you to get better. And he said: Ich weiss. He was very sleepy but I thought it was because he had not eaten the whole day. When he kept falling asleep, I asked him whether I should go and let him sleep. He smiled and said, you know that I am happy when you are with me, that I don't want you to go. But you should go now as it is getting dark and you have a long way to go. We can talk tomorrow. Go safely and come soon tomorrow he told me, holding my hand. And his eyes followed me to the door as I left the room. That was the last time I saw him awake. That was also the last time he ate or drank with his mouth.
Hans arrived late at night on Monday. Ruth and Benedikta during the course of Tuesday.
On Tuesday morning, I arrived in the hospital to find him fast asleep. His breakfast lay uneaten, as also his medicines. His room mate told me that Stephan was very restless in the night, and had got confused with the stand that he needed to carry with him to the toilet and had pulled the needle out -- thankfully doing it in a way so that the blood did not flow out. He then went to the loo but dirtied himself and stood there for half and hour and refused to come out. His room mate then called the nurse who cleaned him up and put him to bed again. But he was very restless and towards morning (around 8:30 am) they gave him half a dose of a sedative injection Atosil in order to calm him down. The doctors told me that they had to do it only because Stephan was very restless in the night and could have hurt himself; they also said that the effect of the medicine would wear off after a maximum of 6-8 hours and then he would wake up but he never did.
On Friday 12th July, Stephan and I went to pick Ruth and the kids from Kitzingen. Stephan drove. When he started to also drive back, Ruth stopped him and asked him to move over. She drove back. That was the last time Stephan drove. Saturday, the 13th July, besides Ruth and the kids we invited Luis Salinas also for dinner and Petra and Ruzbeh were also in Volkach. We had bought a new Bundesliga ball to give Flori for his 10th birthday. We decided to give it to him earlier, and Flori played football for quite some time with Opa Luis and Opa Stephan. Stephan was a bit slow and also not too happy to play but he did. Later we had egg curry and puris for dinner -- Stephan loved it.
On Sunday 14th July, we had lunch in Volkach with Petra and Ruzbeh. Stephan was very quiet all through the meal and later it seems Ruzbeh told Petra, (from the colour of his eyes he says) that Stephan had two weeks to live, not more. But they did not tell me that till later.
The week went by nicely. As already mentioned we went to the Klinik on Tuesday 16th and with the antibiotic his diahhroea problem got completely controlled. Also his mental faculties cam back so much so that he planned to work with Luis at home on Friday. He actually prepared himself for this work on Wednesday and Thursday. He was very restless the night of Thursday-Friday but told me that it is because he is so excited about being able to do some 'real' mathematics again. On Friday, Stephan and Luis in his office. Later we had lunch with Forellen and I took Luis to the Bahnhof. When I returned, Stephan was having his afternoon nap.
At afternoon tea I noticed that Stephan's eyes were yellow. I tried all the numbers of the Klinik and the doctors and could reach no one except Ruth and the Stationsarztin at M84 who told me that it could be an obstruction in the bile duct and that if he was not better by tomorrow morning, then we should take him to the Klinik. At night when Stephan removed his shirt I could see that his whole body had gone yellow. There was no question, we must go to the Klinik on Saturday.
He was also very restless on Friday-Saturday night and did not sleep at all, so much so that he fell asleep only in the early morning and slept till around 9:30 a.m. Saturday morning Stephan was reluctant to get up and then reluctant to go. He spoke to Ruth at breakfast (around 10 am) who them told me that if he wants to sleep for a little while let him before going to the Klinik. I woke him up at 12:30 noon and said it was getting late and that we should go soon. He was quite sleepy and also reluctant. Anyway we drove to the Klinik. I left him to sit on a rock at the entrance of the Notaufnahme and went to leave the car. He was sitting there when I arrived. I called out to him to come to me but he did not move but waited till I got to him. He was not really steady on his feet but he did manage to get up and walk down the ramp to the entrance dragging his suitcase (which was not the right thing to do as we found out later).
The doctors at the Notaufnahme said that they also think it is an obstruction in the bile duct and that they were waiting to do an ultrasound to confirm. And that once it is confirmed, he could go home and return on Monday. But the young doctor who did the ultrasound could not make any sense of what he saw, he admitted that he cannot come to any conclusion and since they could not come to any definite conclusion, they could not let him go. He was moved to the Station M 42 very late in the night. The Bilirubin that was 12 last week had gone up to 16.
On Sunday he was more or less okay, and we went for a walk and had coffee and cake in the cafeteria. The doctors came and made him sign the papers for insertion of a stent. He was very sleepy but still sat on the chair and watched Formula I. I left him after he had dinner. They were giving him infusion with the hope that they could flush out the poison with the fluids. Later in the was moved to the last room along the corridor where there was another patient in the same room. But Stephan hardly noticed him -- he walked from the one room to the other but was too drowsy to be social.
The next morning, Monday, I arrived and saw that he had worn two shirts, one over the other, and was a little confused. The room mate said that he was rather restless during the night but everything was okay. I told him we should have a bath and took him to the bathroom and gave him a good bath. He held on to the rails but did not do very much. He also shaved himself, and combed his hair and asked me to clip his nails. He lay in bed and would very often fall asleep. Not interested in TV. He had to be fasting today because of the ultrasound planned for the day. We did not go for a walk.
The ultrasound happened around 2:30 p.m. The doctor who did it was stunned with what he saw -- he said: this is the liver, it looks like a starry sky, but all the stars are metastases and do not belong there; I would have much preferred to see a dark sky. The liver was completely perforated with the disease eating it up and looked like a holey sponge. That was already a shock but Stephan did not understand it too well. He then looked for the bile duct and found it after a lot of searching -- but it was fine and there was no obstruction. That meant that the high Bilirubin in the blood was being caused by the liver-malfunction. There was a lot of water accumulation in his stomach which was caused by the tumour.
We got back to the ward around 3 p.m. and I gave Stephan some muesli and milk to eat along with an apple. Which he ate happily. He then lay down to sleep again. Soon Dr. Kunzmann came to the ward. I was outside and he said he wanted to talk to me along first. Dr. Kunzmann told me that they had noticed the progressive deterioration of the liver from the blood tests, but did not think that things would deteriorate so quickly. He said that since Stephan was otherwise stable, strong and healthy, they had expected him to last out for a couple more months, perhaps even till Christmas. But the ultrasound today shows that he has only about 5-10 percent of his liver left and even that is slowly giving way...which meant it is a question of days. Just days. I could hardly believe this. He then said that they would stop all treatment immediately and put me in touch with the palliative station of the Klinik so that they can move him there asap and ensure that he did not have pain or discomfort. He also spoke about Ambulant Palliative Care and since I did not realise how serious it all was I did not know what to choose. But Dr. Kunzmann told me firmly that first they would move him to the Palliative station in the Klinik and if he gets better and wants to go home to die, then we can think of it later.
Dr. Kunzmann then went in to speak to Stephan and told him that their hands were tied as far as further treatment is concerned since the liver was deteriorating rapidly. Stephan thanked him for all that he had done for him. When K asked him whether he wanted to stay in the hospital or go home, he said, I want to stay in the Klinik. After he left, Stephan looked at me and said, 'Die haben uns auf die Strasse gestellt!' That was the first time I really heard him admit that he knew what was happening and that he also saw what the stopping of treatment meant. 'They are stopping all treatment because this is the end, right? He seemed to ask me. I did not know what to say. But the news had come so suddenly that even I believed that they are stopping treatment only till his liver recovers and that it is certainly not the end.
Later the lady from the Palliative station came to talk to Stephan. Stephan was sitting up. She asked him: So what are your problems? And Stephan answered: I have no problems. I am fine. The lady was taken aback and asked again the same question: He answered, yes I feel tired and sleepy but apart from that I have no problems. She asked him if he had pain, he shook his head and said No. Then the lady asked him: You tell me you have no problems. Yet you are in hospital, why? That question was too much for him and he said, Please ask my wife, she will explain. And I told her about the jaundice etc.
At some point the usual doctors of the ward made a round with the Oberarzt in the lead. The Oberarzt asked Stephan how he felt (to which he replied that he felt well) and whether he would like to know what they were doing. Stephan seemed not too keen to know but said, if you want to tell me, please do. So the Oberarzt told him that they were pumping a lot of fluid into his body to dilute the bilirubin and flush it out with his urine. Stephan listened without reacting, but for one moment, his face broke down as if he was going to start crying. But the next moment he composed himself and was back to his normal self again. I guess he understood that this was really very serious, if not the end.
Later in the evening, they brought him dinner and I told him that he should eat something before he takes his medicines. He did not want to eat the bread and butter and kept falling asleep even while eating. I asked him if he would prefer some more muesli instead -- he said yes. So I gave him some more muesli which he ate and then also the medicines that I forced him to eat. I asked him: Quaile ich dich? To which he answered: Yes, with a smile on his face. And then I said, But you know, don't you, that I do it only because i want you to get better. And he said: Ich weiss. He was very sleepy but I thought it was because he had not eaten the whole day. When he kept falling asleep, I asked him whether I should go and let him sleep. He smiled and said, you know that I am happy when you are with me, that I don't want you to go. But you should go now as it is getting dark and you have a long way to go. We can talk tomorrow. Go safely and come soon tomorrow he told me, holding my hand. And his eyes followed me to the door as I left the room. That was the last time I saw him awake. That was also the last time he ate or drank with his mouth.
Hans arrived late at night on Monday. Ruth and Benedikta during the course of Tuesday.
On Tuesday morning, I arrived in the hospital to find him fast asleep. His breakfast lay uneaten, as also his medicines. His room mate told me that Stephan was very restless in the night, and had got confused with the stand that he needed to carry with him to the toilet and had pulled the needle out -- thankfully doing it in a way so that the blood did not flow out. He then went to the loo but dirtied himself and stood there for half and hour and refused to come out. His room mate then called the nurse who cleaned him up and put him to bed again. But he was very restless and towards morning (around 8:30 am) they gave him half a dose of a sedative injection Atosil in order to calm him down. The doctors told me that they had to do it only because Stephan was very restless in the night and could have hurt himself; they also said that the effect of the medicine would wear off after a maximum of 6-8 hours and then he would wake up but he never did.
Stephan did not wake up to take even a drop of water all Tuesday.
Ruth and I went to check out the Palliative station on Tuesday afternoon and found it very nice. They moved him there on Wednesday afternoon, still asleep. When he did not wake up on Thursday morning, the doctors came to us and told us that there was no chance anymore that he would wake up, since his sleep was getting only deeper. They also stopped the infusion of water as it was not helping but causing more swelling as the kidneys were also slowly folding up. There was hardly any urine production on Thursday. That from Wednesday had got progressively darker and darker. They also said that as and when they felt that he was in any pain or discomfort they would give him painkillers or sedatives to alleviate the pain. More than that they could not do. At first, he would object to being moved around or if they tried to change his position in the bed, but slowly he stopped reacting to all that. And did not move at all by himself...just lay there as they had put him. Sometimes he stretched his hands and legs on Wednesday and Thursday but that also stopped after some time.
One can stay the night with the patient in the Palliative ward, so on Wednesday night, Bene stayed. On Thursday night I stayed. Uta and Oli came to visit him on Wednesday, Dani and Karin and Sepp on Thursday and Luis and Greiner on Friday. The room also had a huge air conditioner and it was very nice and cool inside the room because outside it was more than 35 degrees.
On Friday morning, around 7 am Stephan had a long bout of deep, loud and irregular convulsive breathing so that the nurse thought he was close to death and asked me to call the others. He also had hiccups the whole time off and on during Friday. But after a while everything calmed down and he began breathing normally again. His hiccups continued through the day and sometimes he was making long pauses without breathing. His lips had got swollen. A few times he clenched his teeth and then slept on again. Around 8 p.m. in the night he opened his eyes and we believe he looked at all of us. When we had finished saying what we wanted to say, I told him to go, and that he should not worry about us and that we shall cope together and that he should go in peace and happily. That we shall always remember him and that we all loved him very much.
A few minutes later (maybe 10-15), I had moved a few steps away from the bedside to find the keys for the car and the parking ticket for Hans to go to pick up Inez from the station. The nurse was there, massaging Stephan's hand after having turned him around. She suddenly called out to me and said that Stephan was dead! I asked her how she knew. She said he had stopped breathing and also that his heart had stopped beating. She knew.
They lay him out very nicely in his night suit, removed all the pipes and bandages and set up candles and flowers in the room. When Inez arrived and she saw him, all his wrinkles etc had disappeared and his face had become soft and peaceful, like a baby, Inez said. So he lay there the whole night.
They also put in a second airconditioner into the room in order to keep the room temperature at 18 degrees. We asked whether we could stay with Stephan the night, as they said they would not move him before Saturday morning. They said yes, so Bene and I stayed. And that was very nice because we chatted with him all through the night till about 2 p.m. Then took turns with two 3 hour shifts to get some sleep. But we really did not sleep and chatted with Stephan most of the time. It was good for both of us.
Stephan is here with us
Saturday went in a daze....we went to Hornung and started the process of whatever had to be done... there were many decisions to be made...where should he be buried, how should we organise the funeral etc etc. We had been given numbers of Trauer-redners who we should contact to get someone to speak during the funeral -- these people were professional speakers, came home, asked you facts about the deceased person and then put them together in a nice speech. Somehow I found the idea crazy.
On Sunday morning, after some long discussion, I went to wash my hair to remove the sindoor from my maang. While I was bathing I suddenly heard Stephan speak to me: Why do we need someone who did not know me during my lifetime get to know me after my death? I agreed but asked him what we should do instead. And he said: Have the garden party that we had planned for last weekend! [Stephan and I had planned to invite the Lehrstuhl home That was it. I heard him no more. I came out of the bath and told the others -- no Trauerredner, no Trauerfeier in the Friedhof, just a garden party at home like other years and whoever wishes to speak can speak! And that is what we did on the following Saturday, 3rd August. It was a lot of work but it was a beautiful event.
Later when we were discussing salads etc. I heard Stephan again while bathing...what about the salads that I liked -- Moehren salat, Chicoree salat, Kartoffel salat ...Why are you guys choosing strange things that I never liked like tomatoes? So that is what we did --- it meant a lot more work at home, especially for Inez. But we did it. And we could see that Stephan was happy. His smile seemed to jump out of the frame that evening...
Around 80 guests came, more than 20 spoke, there was a lot of food and drinks and people stayed till well after 9 p.m. Roger Barnard came from the US, Lisa and Frode from Trondheim, Norway as well as many others from all over Germany including Anita and Heinz Leutwiler, Schmeiser, Sumi and Wolfgang Lauf, Petra, Ruzbeh, Nirodeda and Radhika, Firangis, Barker, Quattali and a few fomer students and the former Rector of Herat University, Dr. Assad. Also a huge group from the Wuerzburg Uni as well as Frau Helmke. We asked people to contribute to OFARIN. Ruth spoke first. Oli and Dani next and Oli moderated the first formal part of the Gedenkfeier. At around 6:30, there was a toast to Stephan's memory and then the buffet was opened. What was surprising was that many neighbours and people from Volkach also came and joined. They wanted to leave after the toast but I asked them to stay, and they stayed till late. It was just wonderful. There were five speakers in the beginning formal part and about 20 later... and they said so many nice things about Stephan. It was really very nice.
Ruth had put some cards and clips so that people could write a wish and hang them on the weeping willow. Many did, with many nice things. In the course of the evening, Hans asked Viola if she also wanted to write something for Opa Stephan. The first card was just random. But in the second she asked Hans to write B-A-B-null-null which reads Baboo, my name for Stephan! Unbelievable!
Ruth and I went to check out the Palliative station on Tuesday afternoon and found it very nice. They moved him there on Wednesday afternoon, still asleep. When he did not wake up on Thursday morning, the doctors came to us and told us that there was no chance anymore that he would wake up, since his sleep was getting only deeper. They also stopped the infusion of water as it was not helping but causing more swelling as the kidneys were also slowly folding up. There was hardly any urine production on Thursday. That from Wednesday had got progressively darker and darker. They also said that as and when they felt that he was in any pain or discomfort they would give him painkillers or sedatives to alleviate the pain. More than that they could not do. At first, he would object to being moved around or if they tried to change his position in the bed, but slowly he stopped reacting to all that. And did not move at all by himself...just lay there as they had put him. Sometimes he stretched his hands and legs on Wednesday and Thursday but that also stopped after some time.
One can stay the night with the patient in the Palliative ward, so on Wednesday night, Bene stayed. On Thursday night I stayed. Uta and Oli came to visit him on Wednesday, Dani and Karin and Sepp on Thursday and Luis and Greiner on Friday. The room also had a huge air conditioner and it was very nice and cool inside the room because outside it was more than 35 degrees.
On Friday morning, around 7 am Stephan had a long bout of deep, loud and irregular convulsive breathing so that the nurse thought he was close to death and asked me to call the others. He also had hiccups the whole time off and on during Friday. But after a while everything calmed down and he began breathing normally again. His hiccups continued through the day and sometimes he was making long pauses without breathing. His lips had got swollen. A few times he clenched his teeth and then slept on again. Around 8 p.m. in the night he opened his eyes and we believe he looked at all of us. When we had finished saying what we wanted to say, I told him to go, and that he should not worry about us and that we shall cope together and that he should go in peace and happily. That we shall always remember him and that we all loved him very much.
A few minutes later (maybe 10-15), I had moved a few steps away from the bedside to find the keys for the car and the parking ticket for Hans to go to pick up Inez from the station. The nurse was there, massaging Stephan's hand after having turned him around. She suddenly called out to me and said that Stephan was dead! I asked her how she knew. She said he had stopped breathing and also that his heart had stopped beating. She knew.
They lay him out very nicely in his night suit, removed all the pipes and bandages and set up candles and flowers in the room. When Inez arrived and she saw him, all his wrinkles etc had disappeared and his face had become soft and peaceful, like a baby, Inez said. So he lay there the whole night.
They also put in a second airconditioner into the room in order to keep the room temperature at 18 degrees. We asked whether we could stay with Stephan the night, as they said they would not move him before Saturday morning. They said yes, so Bene and I stayed. And that was very nice because we chatted with him all through the night till about 2 p.m. Then took turns with two 3 hour shifts to get some sleep. But we really did not sleep and chatted with Stephan most of the time. It was good for both of us.
Stephan is here with us
Saturday went in a daze....we went to Hornung and started the process of whatever had to be done... there were many decisions to be made...where should he be buried, how should we organise the funeral etc etc. We had been given numbers of Trauer-redners who we should contact to get someone to speak during the funeral -- these people were professional speakers, came home, asked you facts about the deceased person and then put them together in a nice speech. Somehow I found the idea crazy.
On Sunday morning, after some long discussion, I went to wash my hair to remove the sindoor from my maang. While I was bathing I suddenly heard Stephan speak to me: Why do we need someone who did not know me during my lifetime get to know me after my death? I agreed but asked him what we should do instead. And he said: Have the garden party that we had planned for last weekend! [Stephan and I had planned to invite the Lehrstuhl home That was it. I heard him no more. I came out of the bath and told the others -- no Trauerredner, no Trauerfeier in the Friedhof, just a garden party at home like other years and whoever wishes to speak can speak! And that is what we did on the following Saturday, 3rd August. It was a lot of work but it was a beautiful event.
Later when we were discussing salads etc. I heard Stephan again while bathing...what about the salads that I liked -- Moehren salat, Chicoree salat, Kartoffel salat ...Why are you guys choosing strange things that I never liked like tomatoes? So that is what we did --- it meant a lot more work at home, especially for Inez. But we did it. And we could see that Stephan was happy. His smile seemed to jump out of the frame that evening...
Around 80 guests came, more than 20 spoke, there was a lot of food and drinks and people stayed till well after 9 p.m. Roger Barnard came from the US, Lisa and Frode from Trondheim, Norway as well as many others from all over Germany including Anita and Heinz Leutwiler, Schmeiser, Sumi and Wolfgang Lauf, Petra, Ruzbeh, Nirodeda and Radhika, Firangis, Barker, Quattali and a few fomer students and the former Rector of Herat University, Dr. Assad. Also a huge group from the Wuerzburg Uni as well as Frau Helmke. We asked people to contribute to OFARIN. Ruth spoke first. Oli and Dani next and Oli moderated the first formal part of the Gedenkfeier. At around 6:30, there was a toast to Stephan's memory and then the buffet was opened. What was surprising was that many neighbours and people from Volkach also came and joined. They wanted to leave after the toast but I asked them to stay, and they stayed till late. It was just wonderful. There were five speakers in the beginning formal part and about 20 later... and they said so many nice things about Stephan. It was really very nice.
Ruth had put some cards and clips so that people could write a wish and hang them on the weeping willow. Many did, with many nice things. In the course of the evening, Hans asked Viola if she also wanted to write something for Opa Stephan. The first card was just random. But in the second she asked Hans to write B-A-B-null-null which reads Baboo, my name for Stephan! Unbelievable!
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