New Surgery Update
August 25, 2008. I like to thank my sister and ‘brother’ for their great support. They had to support me for so much longer than I first expected. They collected details on my status, translated the bits with value and published it. They processed the your feedback and published it. Thanks a lot guys!!
And then there is you, visitors, that use this Weblog for reference and to publish your supportive messages. Messages that often reached me in my most stressful hours, printed and read to me by my sister. Thank you very very much!
I have decided to take resposibility for this blog back (as of today). I will continue at https://cranius.wordpress.com. Thanks again caretakers!
July 24, 2008. For exact 3 months ago Peter has his first medical surgery. On Sunday 20 April Peter asked us to continue his blog during his stay in the hospital. We knew how important this blog was for him and of course we accepted this request. In the past three months we have supplied information on the situation of Peter. In this period we were anxiously and desperate because he needed four operations instead of one. Also we are happy that Peter is, in spite of all medical surgeries, the same nice person. This week we have asked him to reflect concerning the future of this blog. Peter has decided that he will continue this blog by himself. This is a huge step forward. We look forward to his personal texts, just like you.
(Marjolijn and Peter)
July 20, 2008. Today we have spoken Peter. Gilbert and I reached, after this conversation, the conclusion, that the last radiotherapies have had very much impact. And they still have influence on his physical and mental situation. It will require some time for his recovery. Except fatigue, he also must get used to his new situation. It’s only four days since he left the RCA. The coming week has Peter on Monday and Thursday therapy.
July 17, 2008. Yesterday Peter could definitively go to his own house. He gets an outpatient treatment in the RCA. Today Peter has had his last medical treatment in the VU. He is overjoyed but is also very tired … he reaches again a new phase. Now he can concentrate on his convalescence. The expectation of the doctors is, that in a couple weeks his ability to find words will improve. The small wounds on his head are closed. We have bought a book for Peter of David Servan-Schreiber. This psychiatrist has developed a very own theory of healing strength of the brain. He had a brain tumor 15 years ago. Soon we visit Peter and give him this book. We have drunk Prosecco on Peter’s progress.
July 13, 2008. We have good news: this week he will have his last radiotherapy. Lucky, because his head skin is very thin. Even water on his head is painful. With Monling and his cats Peter had a free and easy weekend. I have called up him today, but his talking was not successful. His inability, caused by cerebral dysfunction, to communicate in speaking must be frustrating for him. Friday afternoon Peter rang me at my work and spoke fluently and he was very charming. Each day there are unexpected changes. Peter says in these cases: “such is life”. And that is a good state of mind.
July 10, 2008. Peter is very tired of the treatment by X-rays, which take place each working day. His head skin reacts and also he is losing his hair. After tomorrow Peter and Monling only have to go seven times to the VU for the radiotherapies. Then at last he succeeds in getting the full treatment of radiotherapies. Peter dedicates himself fully to his therapies in the RCA. He takes part to a discussion group. He practices writing to improve the movement of his right hand. Next week Peter will stay also in the RCA, because the small wounds on his head are still a point of interest. Lucky he is able to go this week end to his home.
July 6, 2008. Today we telephoned him to get some information. He is so pleased to be in his own home. He is relaxing this week end. He went with Monling to the latest movie of Harrison Ford “Indiana Jones and the Kingdom of the Crystal Skull”. He reads regularly his blog and his vocabulary is growing. Hopefully this week the doctor team will decide when Peter can leave the RCA. Still 12 irradiations … fortunately, because his head skin becomes very thin. In spite of the treatment by X-rays, eating zucchini and tomatoes makes him happy.
July 3, 2008. Tuesday there was a meeting in the RCA concerning the convalescence of Peter. The small wounds on his head are still a point of interest. The doctor team decided that Peter is able to stay this week end in his own house. The doctors and therapists are contented with the situation of Peter. He is still progressing. Mother Teresa said: “To keep a lamp burning, we have to put oil in it”. Each day we come near the day of his last radiotherapy.
June 29, 2008. Today we have celebrated the anniversary of my mother with Peter and Monling. We got delicious truffle chocolate cake with tea. It was sociable. Tuesday morning the doctors, therapists, Peter and Monling will have a meeting concerning the progress of Peter in the RCA. Then Peter and Monling will hear if Peter can go from his house to the therapies. The emphasis of its convalescence lies on talking and finding words. His healing is unpredictable because of the radiotherapies. We must have patience. There are fortunately two matters where on we can focus. Peter shall probably rapidly go home and he has his last radiation treatment on 22 July.
June 26, 2008. Yesterday we visited Peter in the RCA. The most wonderful news what he had for us, was that the therapists will examine next week or Peter can definitively go to his house. Then he must go with a taxi to the RCA and VU for therapies. Waiting for the radiotherapies and the other therapies makes him tired, the radiotherapies worsen this. He can stay again Saturday and Sunday in his own house. His hair falls out, but he told us: “I do not bother”. It frustrates him, when he is not able to find the correct words to make clear what he means. He lives with the idea: It is better to light one small candle than to curse the darkness.
June 22, 2008. It is simply great receivig all those wojdreful signs from all ovet ths world. Thans everyon for the crsds, letters, baleoons, cats, faxes! I suffer froa m dooudle vision so I keek this shrt. Bye, Pater.
We are proud on Peter, because it is very difficult to write the above words, if he sees everything twice. And what a courage, to contract the confrontation with yourself, if typing does not go easy anymore. Today we have spoken with Peter and Monling. They have had a nice week-end. Saturday Peter has slept for a long time. Afterwards they went to an indonesian shop. He has taken in his house the staircase. So they ate together upstairs in the kitchen. In all rest they were able to talk about several themes. In the RCA goes everything well. In the Vondelpark Peter goes for Nordic Walking with his physiotherapist. For the coordination of his arm and hand he has exercises. Wednesday evening we will go on a visit at my tough brother, we all look forward to this.
19 June, 2008. Wednesday was Peter as sick as a cat. That morning in the VU an examination has taken place of this small inflammation. Peter and Monling had to wait a long period, but the result made us happy. It was only a superficial inflammation, which must be treated with antibiotics. We are back and forth swung by several emotions and that makes it heavy. Each Tuesday they have a meeting with the neurochirug dWH, who wants to be informed every week. As control freak it is for Peter cumbersome, that he cannot influence the situation himself. Two weeks ago Peter went to the RCA and now he can stay Saturday and Sunday in his own house…that is extraordinary news. If you take into account everything what the last months have happened, his return to health will take some time.
15 June, 2008. Yesterday we arrived late in the afternoon in the RCA. He slept in his chamber because he no longer expected us. The therapies of the RCA and the radiotherapy make him tired. He progresses enormously. Of course Peter wants a still faster progress. Next week Peter gets a fixed schema, in the morning radiotherapy in the VU and in the afternoon therapy in the RCA. Peter found it pleasant to be at home with Monling and his cats. By removing the stitches in its head a small inflammation has arisen. Tomorrow the doctors in the VU will examine this small inflammation.
12 June, 2008. The rehabilitation of Peter in the RCA goes successfully. The therapists in the RCA are extremely friendly. Also at the radiotherapy in hospital VU he gets much support of the doctors. Tuesday evening Peter has got authorization to eat outside the RCA. Peter and Monling have eaten at an Italian restaurant near the RCA. He has to come to like normal food and enjoyed his pizza gorgonzola. Next Sunday Peter is allowed to go for one day to his own house. What a great news! This is the next progress toward his recuperation.
8 June, 2008. Today we visited Peter in the RCA in Amsterdam. This rehabilitation centre lies in the middle of in Amsterdam, near the Vondelpark. It goes well with him. Each working day he becomes radiotherapy. Such a therapy lasts a couple of moments. Sometimes, he and Monling have to wait an hour for the ambulance which transports them from the RCA to the hospital VU. Peter gets 33 radiotherapies; therefore the last radiotherapy will take place on Monday 21 July. We find that he talks clearer and his moves are enormously better. During his stay in the hospital VU, there was only one huge problem for Peter: “Will I continue to live?” Now in the RCA, he is a phase further and he is faced with the question: “Shall I be able to do everything such as I did for my operation?” And on this question nobody is able to give an answer. The coming days Peter will have a fixed schedule for: radiotherapy, physiology, speech therapy and occupational therapy. We regularly print for Peter the blog and the comments. Because his health is stable now, we will inform you every Sunday and Thursday by means of this blog. If there are important developments, then we will communicate this immediately.
3 June, 2008. It goes very fast. Yesterday and today Peter got physiotherapy. Today Peter walked alone with his therapist flat beside him. Each day his talking is improving. He goes tomorrow to the Rehabilitation Centre Amsterdam (www.rcamsterdam.nl) for intensively therapy. His admission into the hospital VU will be ended tomorrow. A heavy time, in which we extremely worried. In the RCA the talking and moving of Peter will improve. Thursday the first radiotherapy will start in the hospital VU. He is nervous about this radiotherapy.
1 June, 2008. Today my mother and I visited Peter to check his health. The situation of yesterday gave us no satisfaction. The first words what he said to us was: “My back is dry”. And afterwards: “I have had breakfast”. Fortunately, it goes today well with him. Tomorrow, after for a long time he gets therapy.
31 May, 2008. Yesterday the drain was removed. And everything was all right and this situation remained the complete day. My mother, Monling, my aunt and Marcus, they all saw that my brother was doing well. This morning the wound in his back leaked, which has been made by the drain. The whole day he was not allowed to lie on his back and he was not amused. With large eyes, full of misery, he looked at us. Peter didn’t want to eat or drink. We hope that this does not will last too long. As soon as the wound heals, it will go better with him.
29 May, 2008. Wednesday morning the compression bandage was removed. It was very emotional, because Peter and we were anxious that his head was leaking Liquor cerebrospinalis. This is a clear bodily fluid that occupies the subarachnoid space and the ventricular system around and inside the brain. Essentially, the brain “floats” in it. But that did not happen fortunately. Also this morning his head was dry. The next phase is reducing the liquid by the drain. This reduction causes, however, head pain, but this is a step forward. He is very tired, but four operations and four narcoses have demanded much of Peter.
27 May, 2008. Still we don’t know the effects of all four operations. Dr. B. and Dr. dWH visited Peter yesterday, but so briefly, that they didn’t explain his situation. My brother is confused about all those operations and it makes him uncertain. For this reason we have an appointment with dr. dWH for Thursday afternoon. The compression bandage will be perhaps removed tomorrow. Then Peter has probably less head pain and we know, at last, if the head wounds are healing.
25 May, 2008. We, Gilbert and I, checked Peter’s health this afternoon. Of course today I had several talks with my mum about my brother. We have a close cooperation, we girls, and that is also necessary because Thursday my father will have a medical surgery to his knee. Peter was able to say a few short sentences. He indicated that he is concerned about the operation of his father. Peter has head pain by the compression bandage. Fortunately he has now a single room for him to recover. Tomorrow Dr. B. will visit him, so we will hear more details about the effects of the operations. In spite of the previous days we left with a good feeling.
24 May, 2008. To the third operation Peter reacted insufficiently. The complete day he had headache and was not responding to Monling and my parents. The doctors decided, after studying two CT scans, to carry out a fourth operation. At 15:45 this afternoon the collection of blood was removed, between the skull and the membranes that surround the brain. The membrane has been now attached to the skull, so there is no space for accumulation of blood. At 21.30 this evening Peter has been brought to the High Care, after this he is transmitted to the Medium Care for extra medical control. We will visit him tomorrow.
23 May, 2008. Each day there are unexpected changes. Wednesday we all were so pleased, because finally his head was healing. But yesterday morning his head was leaking and a nurse gave alarm to Dr. B. and Dr. dWH. They decided that Peter needed a third operation. So they put Peter’s name on the Flex list and he had to wait for the operation. Thursday afternoon he had a claustrophobic experience at the appointment with the radiotherapy specialist. He had to wait for the operation of Thursday morning up to Friday evening. At 20:30 this evening he was brought to the operation-room. We are nervously and must wait for the result. Tomorrow we can supply new information on this blog.
21 May, 2008. It is going well. The wounds on his head are dry for the first time. Dr. B will be just after three days satisfied that his head wounds are dry. Therefore he must endure this drain for two more days. When Peter finds out this night, that his head is healing, he was so excited that he could no longer sleep. Tomorrow Peter and Monling have a meeting with Super Nurse and a radiotherapy specialist. We, Gilbert and I, hope that he will stay a few days longer in this hospital. Here he gets the best medical care and becomes more stable. But we are certainly of it that he starts next week with his rehabilitation in RCA in Amsterdam. We hope to be able to tell you more Friday.
19 May, 2008. It was a terrible morning. My parents and Monling were in the hospital, when Peter was suddenly in great pain. He had pain in his hips and legs. For this pain the doctor prescribed a morphine injection. What a difference with yesterday. We all become confused of these changes. Gilbert and I went in the evening to check Peter’s state. He had still pain in his hips and head. It was difficult for him to find the correct words to explain his situation. He told us, that he wants tomorrow gladly some action during his physiotherapy. He is tough.
18 May, 2008. The drain didn’t work. So the ward doctor removed the first drain and placed a second one. We saw that the clear liquid went through the tube. He ate his daily bread with honey and chocolate. He uses so often chocolate, because the cheese is too salty. After his meal suddenly the drain caused a terrible headache. Although his head exploded and he was in pain, he was able to smile when we were leaving. We admired his courage.
17 May, 2008. Yesterday evening Dr. B. concluded that Peter needed a drain to remove some liquor cerebrospinalis. We hope that the head wounds will be dry and close in a few days. By this drain Peter had after a while less pressure in his head. We had been surprised that he could talk so good and made clear what occupies him. Tomorrow we go on a visit at him and are curious how we find him.
15 May, 2008. Peter had its second operation in the night of Tuesday on Wednesday at 04.30. The wounds on its head did not heal sufficient. So dr. dWH decided for the second operation. Risk existed that this operation would have a negative influence on his recovery. When we visited him yesterday he was only tired and spoke laboriously. Today he was not in a good mood. We hope that he will find the strength to fight and to realize that his illness goes in ups and downs.
12 May, 2008. My big bother is watching us. We saw a computer near to his dormitory, so we were not surprised when Peter told us that he had looked twice on this page. It is difficult for him to find the right characters on the keyboard, but he is trying with help from Monling. So every time we met Peter, he is doing better and he can deal a little better with his situation. The small wounds on its head do not want close. Maybe you had drawn your own conclusions when we wrote a few days ago that radiotherapy will be necessary. Peter needed some time to realize and to accept the result of the bioption, grade 3. This worse result will change the plan of treatment. So we have to wait…if we have further information than we will communicate that on this blog.
10 May, 2008. This afternoon he said “Write something on the blog” when we visited him. So now you know that he is recovering. His body reacted better and he walked almost alone. Peter was also able to speak more words and complete sentences in his conversation. He does his best on the exercises of logopedics. Maybe he will be moved towards soon from the Neurosurgery ward to another department in the hospital. His convalescence goes successfully. He ate all his bread with paste of chocolate and enjoyed it. After eating, my parents came with brownies…still more cocoa for our chocoholic.
6 May, 2008. Everyday he got more control of his muscles and his talking. He understood all we said, but we have to talk slowly. During the physiology he walked alone behind a rollator. It was good to hear him laugh loudly a few times. Dr. dWH told Peter, Monling and my parents yesterday that he believed in a quickly recovering, but radiotherapy is necessary to treat the tumor. For that a plan is drawn up. It is difficult to see Peter worrying about the future.
4 May, 2008. My parents and we visited Peter this morning. Monling was this morning free. According to me this the second time that she was absent since the operation. I think that my brother will be proud of her. We, Gilbert and I, saw my brother after two days, incredible…what an improvement. He could move his leg and pressed his hand. He shaved without help. He had independently prepared his breakfast. He had no patience, like always, and he trained his muscles to get his arm in form. My parents helped him to make a choice for the menu of tomorrow. We had printed the comments on his blog, he was affected by the pleasant words.
May 2, 2008. Today Peter had his first therapies: physiology, speech therapy and occupational therapy. We were pleased that he was able to move his right hand Everyday there were little improvements, but it is going very slow.
April 29, 30 and 1 may 2008. He looked better and also he is feeling better. He remembered names, what he had for dinner and smiled about some jokes. He worried a lot about the right side of his body, because his arm and leg were paralyzed. We drove Peter in a wheelchair though the corridors of the Neurosurgery ward, like a school-journey. The speech therapist told Monling, that Peter should practice more. So we tried to asked more, but that made him tired. So it’s going better.
April 28, 2008. Always this pain. Like everyday, he had a terrible headache. No wonder if you could see the wounds on his head. He got painkillers. He ate well today, this afternoon he had a homemade tomato/mozzarella salad. When he was awake, he is trying to find words to tell us about the visit of three doctors. He cannot form words and that made him sad. Everyday he is doing better, but it is going slowly. Peter and we are extremely worried.
April 27, 2008.Today he is a little better. Today a CT-scan was made, because Peter was not responding. He drew with his mouth several little twitches…. maybe a small epileptic attack. So he got medicine and this evening he was sometimes awake, ate some fruit and said some words, because he recognized Monling and my parents.
April 25, 2008. Sleeping Beauty. Peter is moved from Medium Care to the Neurosurgery ward. A MRI has been made and Dr. dWH told us that much of the tumors were removed. He expected that Peter will recover soon, because he is responding well to the tests today. His head was hurting and he got medicine for this. He was sleeping a lot, only Monling was able to keep him awake to give him some fruit. We hope, that tomorrow he is awake.
April 24,2008. The surgery has taken place, shorter than we expected. The Neurosurgeon gave us the information that a part of the tumors had been removed. A biopsy of the tumor will tell us what grade of tumor it is. So we have to wait … Peter has been taken to medium care. Monling and my parents visited him shortly this evening. Everybody was surprised that he was able to speak some words and to move his arm and leg.