Well, here we are again, I am sorry to keep you waiting so long. I hope that you will still check this blog out. You see, Panormitis is doing amazingly well and that is the reason why I did not "have time" to sit and write. We are out a lot and we are trying to make the most of each day. As I always told Panormitis and our girls: "Carpe Diem" never realizing how important this became to us!!

Ofcourse I also needed some time to help Sophia in her new situation. She went from a high school with 100 students to one with 1200 students!! A different way of teaching, different language, different students (city kids!), without her friends, without her sister!!. Boy, if I think of what she is going through, and looking at her... she is like her father very strong, helping me with her, many times logic advises ( she is only 14 but so very wise). She does not feel that the lessons are difficult, more the terminology and the way of teaching is strange to her and therefore difficult. From next week she is going to follow piano lessons at the Royal Conservatory of The Hague, they say she is a real talent!! Also she want to play volley ball, so we have to look into that as well. I hope that she is gonna make some friends soon and finds her way. I do trust in it that she will, she is like her sister Daphne, a very strong character, thanks God.

Daphne is still trying to organize her daily life and trying to find a routine. Not easy if you think that she "landed" in such an international group of students, so many different cultures, philosophy, traditions, this takes time, she lives like on "cloud nine". For what concerns the way of living together, with so many good kids from all over the globe, they all became good friends. What concerns the school they had some troubles there (principal lost his job!) they are a bit too much left on their own. Which worries me from time to time, as all mothers would? We have seen each other several times now and these times are always nice. She also comforts me a lot, even on a distance. To think that she is comforted by so many children and that she is enjoying all the interesting activities they do, makes us feel good and strong as well. We are lucky with two loving caring girls, that we can call our daughters. We are very proud!!

As said Panormitis is reacting very well on his chemo treatment. He is getting ready for his 3rd block. One week of 400 mg (highest dose) chemo, after that the body needs the following 23 days to recover from this "attack". He is more active, despite the fact that he gets easy tired (no wonder), communicates better, shows much interest in the world around him, is painting, photographing (not enough, he says)going out visiting museums, friends, concerts ( Level 42, Classical Music, Prince and now he wants to go to U2 ). One of the happy moments for me is when I see him enjoying the art in exhibitions, galleries, museums etc.etc. and then having a coffee with me and listening to him talking about what he saw, how he looked at it, and explains it in his wonderful words. He always was a great speaker and he got this back, lately!!!

We just had a nice weekend in Maastricht where we visited Daphne and enjoyed each others company. The weather was also nice, some sun and not too cold, so we could sit outside at the "Vrijthof".

And myself? Despite the fact that I am not "working", days fly by and it seems the day never has enough time!! One week ago I found another apartment, smaller, closer to Sophia's school and her music classes, the center of The Hague and lest but not least,it's not that expensive as the flat we are in now. Thanks to our friend Peggy, who also, together with Josseline, told us about the piano teacher for Sophia. We are lucky to have friends like them.

If I have time, I will put some pictures on this blog.......

p.s. we will be leaving for Patmos on the 17th of December, great..... Xmas at home!!

वही दोएस थिस कोमेस इन चिनेसे???

Does anyone knows why my title comes up in these beautiful but unreadable letters??

Moira

I did something stupid and before I could read your email I deleted it, so could you pls resend me the email??

kisses,
Hetty

Moira and Kevin ,

just received your nice card today, thank you so much. we do not have your emailadress, could you pls send it to me? hettyvermolen56@hotmail.com

love,
the gambieraki clan

some pictures of his exhibition in Patmos September 2010

this one I found and liked it so much. Freek and Panormitis at Kijkduin just before his operation, end of May 2010

sunny cozy weekend!! Daphne came for a few days to stay as both girls have autumn school holiday. So Panormitis surprised her with his first moussaka, very tasty and a lot..... we will have some more today as I froze the rest in. Saterday night we left the two girls on their own as we went to see Ajax in the soccer stadion in Amsterdam. My first time, ( I am not a football fan I am afraid!), but it was quite impressive to share this match with another 51.000 fans!!!

Yesterday morning I had arranged tickets for a "coffee concert" in The Hague where talented students performed (Saxophone and piano ). It was very enjoyable and interesting composers. After we had lunch near the Denneweg in De Bodega, a very old fashion place for journalist, politicians and artists. I used to go there in my younger years. They had some nice live music and we stayed longer then planned. As the weather was so nice we decided to walk in the old center and got home tired, satisfied and happy.

As we had our anniversary last Friday (which we all forgot for the first time!!) I was thinking of what present to bring him. I came back with a real professional easel and this morning when I woke up he started already to paint. He surprises us all the time with his beautiful creations, for me he is a real artist. Not only in his photography but now also in his paintings. And he always made poems. As you understand this all helps him a lot to get through this difficult period, and we are so thankful for that.

Today we brought a bicycle from my brother in law, Bert, for Sophia as she will be needing this to go to school. In the afternoon we went to the park with our dog and had a wonderful walk. They were singing Greek songs and we had a nice time.

I will try to add some photo's soon.

xxxxx Daphne, Sophia, Panormitis and Hetty

Panormitis loves it when people write something on his blog....

Dimitri, thanks for writing on Panormitis blog, if you want us to send you some shells let us know where to send it to, love to Nikos and all the other illegal guides!!

Marianne, lief dat jij ook schrijft, hij vindt het zo leuk!! Ja, laten wij hopen dat het droog blijft deze winter. Alhoewel sneeuw wel weer mag hoor, dat maakt zulke mooie plaatjes!! So far , so good!! kus xxx

delft and olives.....

today Panormitis and I went to the market in Delft. We found a Greek stand were they had olives, greek feta, baklava, etc.. so we bought some and after had a nice coffee outside the beautiful cityhall of Delft.

Sophia is doing well at her school, she loves doing physics, music and ofcourse ancient greek. Latin and German are both new languages for her , but she seems to enjoy that as well. She is complaining that all her classmates are younger, I understand that completely and told her to be patient.

Next week is autumn holiday and then we can try to find a piano teacher for her and .....a bicycle. Daphne is coming as well and we will go out to visit museums and maybe to the Efteling?? a fairytale park, the oldest one in Europe in the middle of a extremely beautiful park. Let's hope the weather will be nice to us in that week, so we can also make nice walks in the park and on the beach/dunes.

that's all for today,
love from all of us

xxxx

after the visit of the oncologist....

The oncologist and the neurologist were pleased to know that Panormitis had such a good time and were happy that we did take an extra week in Patmos. But now back to the difficult part........ the chemo he gets is exactly double the dose that he had back in the summer. But that was in combination with radiation and if he would take that same dose now, it will not be effective enough. He is not expected to get real tired as for the moment, this will probably occur after two or three months. He will not be loosing his hair during this chemotherapy, which will be in six blocs, 5 days chemo pills and 23 days to recover. In the recover period the oncologist and neurologist will not only look at his monthly blood test but also want to meet Panormitis. They are really so professional, polite and sweet, he feels very comfortable with them. Actually he mentioned a few times that he does not mind to be in Holland, he quite likes the cold weather although he realizes that we are very lucky, no rain yet!!! I am curious if he still likes it after having rain for more then two weeks, which is easy to happen in our climate here!!!! He takes tablets against nosiness and thanks God they help. He has been out with me most of the day and did not get sick at all.

In the morning we went with Sophia to visit her new school, met up with her teachers and had a tour through the school. Panormitis was very satisfied with what he saw and liked the teachers as well. Sophia had to make a test of more then two hours in order for them to find out where she will be needing any extra support.

It is all very new and quit difficult for her as teaching will be 50% English and 50% Dutch. I hope she will make friend soon which makes everything much lighter. She is a bright girl and I believe in her, but I do not have high expectations for this year. As long as we can be together and she is doing her best, that is fine with me.

Daphne was came over from Maastricht and we all had a wonderful sunset walk for an hour next to the sea. Panormtis loved it and was picking shells, shells and shells. Regretting he did not take his camera with him as it was a beautiful evening. It is unbelievable how strong he is, I love him more than ever and am very proud to be his wife.

All and all we had a good start being back in The Netherlands.. let's hope luck will stay with us!!!

love to all of you,

Panormitis, Daphne, Sophia and Hetty
xxxxxxx

Back in The Hague since yesterday

Looking back on our stay in Patmos I realize that it was the best thing we could do for Panormitis. He really filled up his "battery" and feels good about having seen all his relatives and friends. The support we received in many different ways is unforgettable and I really would not know where to start to thank everyone personally. But to all of you who were in Patmos and met Panormitis, spoke with him, took us out for dinner, on the boat, came to visit his exhibition, gave him courage, sweet words, caressed him, joked with him , made him laugh, etc.etc. from the bottom of my heart:

A big efgaristo , we love you all,

Panormitis, Daphne, Sophia and Hetty

will write soon

should be laying down myself, but.....

to many things in my mind.

Yesterday my brother sends me an email in where he says that there is a breakthrough in the development for curing braintumors. This research is done by a children oncologist and Panormitis neurosurgeon Dr. P. Witthamer from the VU in Amsterdam. It has to do with enzymes and it will take a few years to complete this research. For patients of today it will be too late, it said in the news. Ofcourse we keep hoping he will make it. Nevertheless it kept me from sleeping all night long and I must admit that I cried a lot. I will contact Dr. Witthamer and ask if Panormitis would be able to participate in a clinical trial in this field .....???


The photoshow is a great succes, but I feel strange when a photo is bought, as I know the stories behind each one of them. They became a bit like " our babies" in one way. He is very happy to be in the middle of this all, meeting relatives, friends and making new ones as well. He is receiving all the good words and compliments about his work and that gives him surely courage. If time let us, we hope with the money raised we can maybe realize to do a show in Holland or anywhere else. If any one of you know his photographs and can help me setting up a show and has the knowhow, please contact me.

I left him in George's Place " on his own ", meaning one of the very rare times that I am not next to him. It feels a bit strange, but I need a bit of time for myself as well. I have " a million " things to organize before we leave Patmos again.

This Tuesday we will have a little private church service in his family church in Kambos at 07.00 in the morning Greek time. It would be wonderful when you people could help us by sending positive thoughts out to him at the same time. It might help, you know!!! Lots of love,

Panormtis, Sophia, Hetty

back in Patmos

How fast times go by??? We arrived in Patmos about ten days ago. The whole plan has changed again, because the oncologist advised to do the six months of chemo near a hospital. They are going to give him nearly a double dose of chemo in the coming months, for that reason they want to follow up his progress from close. I feel at one point relieved that we are going to stay in Holland during this therapy, but at the other hand it is quite difficult looking at the psychological part.

He is so happy here and it is so easy for him to leave the house and immediately finding his friends and beloved ones. Since we came here we have not been able to spend one night in the house!! As in Holland I would spend a lot of effort to get him out of the house. We get up every morning around 08.00 o' clock, go out to a beach and swim for 20 minutes or so, then home for breakfast and at 12.00 we have his daily masseur at our home to massage him for a good hour. This is an offer of Susan and Benetos and we highly appreciate this, he really enjoys it and relaxes during and after the massage. After lunch we take a little nap and go out again in the early evening. We have been going to the Music Festival a few times, I think tonight is the last night, which we also enjoyed a lot. Outside of the Apocalyps in the little amphitheater, a beautiful scenery when you look at Skala below.


As soon as we decided, after the meeting with the oncologist, we would be spending the winter in Holland I had to run after finding a good school for Sophia. As now it is not an option anymore to leave her as the only member of the family alone behind in Patmos!! At first she did not wanted to go at all, but now she realizes that it is better for all of us when we would be close to each other. I did not try to convince her with a lot of words, just told her that we would be needing her around us.

After two days she asked me the name of the school and found their website. it is a very interesting school, bilingual ( half Dutch half English ) and it approaches her profile quite a bit. Her being interested in art, handcraft,music, social life, drama etc. they spend a fair time to these subjects. It will not be easy for her as we will be facing a difficult winter, so I decided to put her back one grade, meaning she will be doing the second class again. Anyhow, she will need some time to adjust to the new school system and the dutch way of living in general, not to forget the weather!! We hope she is going to like it and will soon make some friends in Holland. Good luck my sweet Sophia!!


Daphne left Patmos last Tuesday and is now in the UWC in Maastricht. She is totally absorbed by all the new faces and impressions. She is one of the 50 boarders, coming from 47 different countries. She has been "meeting" most of them on Face book and emailing and now finally got to meet them. They all got a new bike with the logo of the school and biked to Belgium last weekend as an introduction weekend to get to know each other better. If I am not mistaking, school has started from today. As Sophia, we wish also the best of luck for Daphne.

Besides being busy by driving Panormitis around, spending wonderful time with him, I also am trying to organize a small exhibition with his photographs. It is a lot of work and I hope that I will be able to realize this idea. Wish me luck!!

that's it for now, dear friends, I will have some more time free at the end of next week ( I hope ) and will post you then.

lots of love and kisses

we were lost in a maskerade....

but, now it's over. He completed six weeks of radiation and chemo. They asked him today if he wanted to keep the mask that he was wearing during radiation. And ofcourse he wanted to take it home.

I do believe that he is getting a bit better. Especially for what concerns his participation in conversation, his interest in the news, politics etc.etc. He lives less in his own world as he did over the last few weeks. We have had some very good talks over the last few days and he surprised me a lot. Because a few weeks ago he did not showed much interest in anything, he is coming back. Only physical he is not doing as I hoped. His left arm does not seem to do what he wants it to do, his muscles are in pain and he is extremely tired.The tiredness is ofcourse not surprising after this "attack" of radiation and chemo!! I have called a masseur to massage him from time to time, she comes to our appartment, which is very convenient. Now he can recover a bit and I hope that I will be able to keep him interesting in undertaking little "trips" with the car and getting outside from time to time. Just driving to the seaside and sitting on a bench at the boulevard is good enough, I think. Siga, siga, as the Greeks say.

Again I would like to thank all the family, friends, people we know and not even know, for their loving support, care, attention, cards, telephone calls, skyping time, emails, reaction on his blog etc.etc.

And Rania, ..... we got Lydia's pictures today and both Panormitis and me are convinced that this little beauty is exactly like her mom!!!!

for today ....
pola filia

11 august 2010

This was yesterday at a gorgeous lake near Amsterdam where a friend of us has her "woonboot" where she stays as much as she can. I do not blame her, it is so peacefull and beautiful..What a day, what a view, what a friend!! Thanks, for a loveley time in where both you and Panormitis recalled the old days of Patmos. Talking about Willem Nijholt, Mattheo,Tom Stone, Dolly, Kafkalidis house, Panormitis fatherTheologos, the taverna etc.etc. It did him very good. He mentioned while getting into the taxi home that he would love to see you back soon. We will contact you, big kisses.

playing with words

Yesterday when Panormitis walked out of the VU hospital he said :" tumor, only tumor." What he meant was two more, only two more. And he gave me a big smile!!! Is'nt he great???? My hero!!

Jasas,

Just came back from the VU hospital. This morning I brought the grils to the airport , they will arrive in Athens at 18.30 this afternoon.
Departing from their father was very hard and emotional this morning, you can imagine. We were all in tears, he gave them some good advices and courage, I am sure for that.
Despite what some other people think, I am sure it was the right decision to have the girls here at this period and also to let them go again back to Patmos. After all, here they had spend such a difficult and hard time, most of it taking care for Panormitis ( and me). They also felt very supportive to be here and offering us their help, but to spend their whole summer on the 11th floor of a boring appartment building, with none of their friends around, is also not necessary. Life goes on, we have to build up energy to be able to face what will come to us in the near future as well.

Ofcourse we are still hoping that Panormitis will get better as he is today and to be able to enjoy as much he can of life. He is trying very hard. Towards the end of the radiation therapy ( 8 more to go) he gets more and more tired, starts loosing his hear as well. After he came out of the hospital where they kept him for three nights to be able to observe him and to try and find out where the fever had came from, the fever came back twice. But we are really allert to it and try to keep him as calm and relaxed as possible. I think it has to do with his swollen left (!) eye, it is a bit infected and we treat it with camomille baths.

Last sunday two wonderful friends came to see us, Rebecca and Sarai. The former Dutch au-pairs of our girls, the best one can wish for their childeren. They gave them soooo much in the time ( 2000-2001) they were in Patmos. Love for handcraft, love for nature, reading books etc. Their whole family is very dear and special to us. We had a coffee in our house and after we took them to a very small pittoresk village called "Schipluiden" near Delft, 10 minutes by car from our appartment. We walked around a bit and ended up having a nice coffee. I serve lousy coffee in my appartment !! The pictures are from that afternoon.

In the evening my brother Freek, his wife and daughter came to our appartment for an "Indonesian meal". I think they liked it better then most people do my coffee!! ( that is for you Alex, when you come again I promise to cook for you too!!) It all felt a bit like "normal" again. I noticed that it is very good for Panormitis and me to meet up with friends and keep in touch with the outside world. He is watching a lot of television and like this he sets his mind of the TV set a bit as well. Something that pleases me especially!!

Yesterday night we went out to have a meal together with Daphne and Sophia. We went to another small village nearby and had a loveley Italian meal. While eating we were all remembering the wonderful time we spent in Italy and as we walked back to the car, Panormitis mentioned that it was such a privelege to have had these fantastic family holidays together. Something so true. People should not think so much of their work, making more money, but spend some time off with their families, it is of such a great importance to life in general. To be able to look back into good and loveley memories, gives you a lot of strenght to carry misfortunes in life. At least that is what I feel it's doing for me.

I will sure miss the girls, but am so happy to know that they will spend some time with their friends and relaxing. They are so understanding, brave and loving girls. They gave me a lot of support and energy. Also their realistic and logic way of dealing with our situation learned me a lot. Enjoy your time in Patmos and we will see you again soon ( hopefully in about one month from now) Kisses for all,

Dear all,

Panormitis is taken into the hospital because he had high fever yesterday after a cold shiffering. It is not very serious but they have to find out where the fever comes from. I will write again when I have more news.

p.s. It is Daphne's birthday today!!!

Daphne's birthday

27 juli 2010

Daar zit ik dan, Het is Daphne’s 16^de verjaardag . Er staat voor het eerst geen taart in de koelkast. Een taart waaraan Panormitis vast en zeker zoals alle andere taarten ( 15 voor Daphne en 14 voor Sophia) tot soms heel laat s’nachts gewerkt zou hebben, Met heel veel liefde en fantasie zou hij in de weer geweest zijn met slagroom, fruit en de opmaak. Ook zouden wij samen de avond ervoor kadootjes ingepakt hebben waarbij hij dan altijd de allermooiste kaartjes bij maakte. Om dan de volgende ochtend de kinderen wakker te maken en met een camera in zijn hand alle öoooh’s en aaaaah’s vast te leggen met een trots gezicht.

Daar zit ik dan. Met deze herinnering werd ik een uur geleden wakker. Helaas niet naast Panormitis en de kinderen in de kamer ernaast, maar in het gastenverblijf van de VU. Het is nu 08.00 uur en heb geprobeerd nog wat te slapen maar het lukte mij niet. Ik zat helemaal stuk op mijn bed en wilde naar de pc om dit vast te leggen..

Toen ik gistermiddag met Sophia terug kwam op de fiets van de Boogaard, waar wij voor een taart op zoek waren, zag ik de ambulance op de stoep van het Churchill hotel staan. In eerste instantie dacht ik dat het voor iemand in het hotel was. Mede omdat ik Daphne en Panormitis nog niet terug van de bestraling uit het VU verwacht had. Maar toen zag ik Freek bij de lift staan en sloeg mijn hart over.

Hij was gaan liggen en vroeg Daphne om wat yoghurt., zij is toen even bij hem gebleven om vervolgens naar de woonkamer te gaan. Toen zag zij hem ineens met grote stappen naar de kapstok afgaan en riep hij vrij hard haar naam. Hij pakte zijn jas en zei dat hij het zo ontzettend koud had. Daphne heeft hem toen goed ingestopt en zijn rug gemasseerd. Hij lag zo te rillen dat zij er zelf onder is gestopt om hem te warmen. Uiteindelijk via Astrid is toen Freek gebeld en hij belde Daphne meteen terug om te horen van haar wat er aan de hand was. En zij beaamde meteen dat er een ambulance moest komen want hij lag te “shaken als een frappee”in zijn bed.

Ik dacht meteen aan een epileptische aanval toen ik dit hoorde, maar hoogstwaarschijnlijk is dit het niet geweest omdat hij al deze tijd bij en aanspreekbaar is geweest. Daphne is er enorm van geschrokken , maar heeft zo een kalmte over haar en fantastisch gereageerd op deze situatie. Had zelf waarschijnlijk meer paniekerig gereageerd. Van je kinderen moet je het maar hebben. Hij heeft hele koude rillingen gehad en daarna liep de koorts op tot 38.5. De ambulance broeder heeft toen contact met het Vu gehad en die stelde voor om niet gelijk naar Amsterdam te komen maar eerst in de buurt na te gaan waar deze koorts vandaan kwam.

Wat een fantastische dochters hebben wij. Want ook Sophia heeft haar steentje bijgedragen om bij Panormitis in het Leijenburg ziekenhuis naast hem te blijven toen ik met Freek en Daphne naar Rijswijk ging om daar wat spulletjes voor de nacht te halen. Het had haar enorm gestoord dat een van de verpleegsters die wat dingen aan Panormitis vroeg in het Nederlands, daarna zich tot Sophia richtte en haar in het Engels vroeg of zijn gedrag anders was dan normaal, of hij vreemd of gek deed. Dit terwijl Panormitis naast haar lag en hierop Sophia aankeek om te zien wat zij ging antwoorden. Dit bracht haar in een onnodig moeilijke situatie , omdat Panormitis natuurlijk sowieso een gedragsverandering ondergaat vanwege de tumor en zij hem niet wilde kwetsen om deze vraag waar hij bij was met ja te beantwoorden..Daar was zij terecht van geschrokken. De verpleegster had haar even apart kunnen nemen om dit te vragen!

Maar zoals ik al zei, wij hebben twee gouden meiden en gelukkig meldde Sophia dit bij mij zodat ik het ook bij de dienstdoende arts in Leijenburg kon neerleggen.. Ook deze arts vond het slordig en zou de verpleegster hierop aanspreken, op een vriendelijke manier zodat zij er de volgende keer bij een volgende patient rekening mee kan houden om iets tactischer met haar vraagstelling om te gaan.

Na een bloed en urine onderzoek kreeg hij een breed spectrum antibiotica toegediend omdat zijn koorts was opgelopen tot 39 graden. Toen wilde zij hem toch liever in het VU hebben en zijn wij om 23.30 met de ambulance vertrokken.

Ik heb vanuit dit zeer gastvriendelijk, door vrijwilligers opgezet gastverblijf de afdeling waar Panormitis net gebeld en er is vannacht nog een arts bij hem geweest. Daarna heeft hij redelijk geslapen, maar heeft ondanks de toediening van paracetamol en de antibiotica nog steeds koorts, wel iets minder 38.5 . Hij sliep op dit moment weer dus besloot ik om gebruik te maken van het internet hier.

Kreeg ineens een fantastisch idee. Hoe mooi zou het zijn om zoiets in Athene op te zetten voor familie leden, een gastverblijf opgezet door vrijwilligers. Kun je je zoiets voorstellen?? Misschien moet ik hier, als het allemaal beter gaat, mijn target zetten om dit ook te realiseren??

Het is nu inmiddels bijna 09.00 uur en ik mag pas om 11.00 uur op bezoek. Ik wil nog even wachten om de meiden in Rijswijk te bellen, misschien slapen zij nog? Voor mijzelf twijfel ik tussen proberen nog wat te slapen ( lukt waarschijnlijk toch niet) of een rondje buiten te lopen en wat frisse lucht te halen? Ik zie wel..

Besides the care for Panormitis we had another serious matter in our family. One week ago, my niece Chantal( Anneke's daughter ), who was pregnant, had been taken into hospital with terrible pains.  She gave birth to a beautiful girl but found herself into life danger for more then one week where she was taken into IC. We were all worried so much and prayed for her. She is very strong and thanks God she made it!!! What a relief, what a week!! That is the reason I did not feel like writing on this blog as well.

...........

But all is slowly getting better.

Panormitis nearly finished two weeks of therapy chemo/radiation and ........... I really see he is getting a bit better. Although he is very tired ( no wonder!!), he is trying hard to make some progress. He even laughed again these days, something he did not do for a long time. After we had the good news about my niece getting better, my brother Freek took him for a game of biljart yesterday.  The last two years Panormitis organized competition games of biljart in Chris Cafe in Skala. He is a very good player and so he won Freek with 7 to 4. He came home yesterday night and looked so satisfied and happy!! It made us all feel good to see him like this.

Freek also brought us a hometrainer ( bycicle) and Panormitis did 3.7 kilometer of biking today!!!  After this he had a good rest of a few hours and that's why after diner we went out with  P&F's oldtimer the Volvo to see the sunset near the harbour of Scheveningen. He made some beautiful pictures of which we will show you some.

Next week on Friday he will have another MRI taken, as it is halfway radiation. Also he gives blood once a week and we speak to the radiologist Dr. De Haan each Tuesday, so they follow up with his progress. They are all so fantastic, polite and helpful at the radiation department,  wonderful people. Also we are taken to and from the hospital by taxi now, which is making things much easier for Panormitis. The train was too tiring for him and made him restless. 

The other good news is that today was his last day of cortizone!!!!! So if he progesses well, he will not be needing them anymore, or for the time being. Sometimes patients have to return again to cortizone if neccesary.  Let's hope he won't be needing them, as it gives him such an apetite and makes him so restless as well.

Today, on this hot "greek athinian weather" day, Daphne and Sophia came with us to the hospital. They got to see (with me) the room where they do the radiation and saw Panormitis getting ready into the right position with his body and with his mask on, while the nice and polite nurses were explaining us exactly how things work. Before they activate radiation we were allowed to stay with them and the doctors in a room where we could follow Panormitis on the screen. There were about 5 huge monitors where they checked everything very precisely. Looking at Panormitis like that made me quite emotional and sad. It is very confrontating to see your husband laying there with his mask on.

Anyhow, after that the girls were reading  on the hospitals website information on what a braintumor is, treatment, etc.etc. We also showed them the neurologic department where Panormitis stayed before and met up with Annette, the tall nice nurse who made sandwiches for Panormitis in the middle of the night whenever he felt hungry.

 We had a "kroketje" and went back to Rijswijk. As it was too hot to do anything we a sort of relaxed at home. Later in the evening Freek came by and brought us icecreams, what a treat!!

Tommorow some friends we met in Patmos 3 years ago, ( I remember Panormitis was trying to find their weddingring in Geranou which they had lost in the sea. We all ended up snorkeling around looking for the ring, which unfortunatly was not to be found ) will come to see us and they are going to make our life a bit more mobile. As they offered us to use their car for the time we are staying here. What a blessing!!!! Like this I can take Panormitis whenever he feels like it to the seaside, park, exhibition etc. etc. and when he gets tired, back home again. You can imagine how happy we are with this offer, thank you very much Peggy and Ferry. 

I'm a train I'm a train I'm a tracktrack train I'm a train tricketrain yeah......

As you understand we spend a lot of time "training". Each workday from Rijswijk to Amsterdam, takes us about 50 minutes. This first week we walked from the Amsterdam station to the hospital, 25 minutes, this is a very good excercise for both of us, but after radiation we take a taxi back to the station.

Talking about "training"..... yesterday I bought Panormitis "training/sport shoes, to stimulate him to walk a bit more. Let's hope he will do so, as it is very important to keep him on the move. Yesterday night he went for the second time on the bicycle, ten minutes!!

He is trying very hard to do his best, gained a lot of kilo's but now we are trying to control that a bit more. This is all due to the cortizone medicine, it gives the patient a huge apetite, unfortunatly. His physical condition is quite good, considering the whole therapy he is going through. Until now he does not seem to have any side effects from the chemo, it is only 4 days now, but let's hope he keeps on doing well.  Each morning at 6.30 he takes one pil not to get nausia, one hour later the chemo and then he is aloud to have breakfast one hour after the chemo. before that it is not allowed to eat or drink anything. I tell you it is very hard to be occupied the whole day with medicins, therapy, feeling tired etc.etc.  

Last weekend our friend Alex from Munich was here with us , and she had treated us to a wonderful weekend. We went to Delft ( 8 minutes busride) for lunch on a beautiful square, called the Beestenmarkt, full of plane trees and a very nice atmosphere, it felt like being somewhere in France, the only thing that was missing was seeing people playing jeue de boule.

Delft is sooo beautiful it is as Alex said; you step into the 17th century while walking around Delft. It is realy a place that I could live and feel comfortable. Next morning she treated us again on a "pancake birthday breakfast" as her boys became 16 years old that day!! Congratulations George and Johannes and a bit late but............to your health. The girls will be in Patmos in August to celebrate with you again, I suppose. All in all it was a wonderful weekend having her around. Efgaristoume poli Alex, filakia

For all of you who know how to read Greek, Panormitis has his own blog:

panormitispatmos.blogspot.com

He is very active on this blog with many pictures.

This week he started his radiation and chemo treatment. After 3 weeks they will take another MRI scan, to see what the tumor is doing.

At this moment there is not much to tell. I will let you all know if there is any development.

Heinz , Barbara, Gregoris and Jaqueline, thanks for helping us when we were in Kos. Pity we did not meet while you were in Patmos. We appreciate your support very much.

03 July 2010

Hi everyone,

It has been some time again since we gave you some news, but believe me........ we were busy!!! This is Hetty posting and I just got back from Patmos to arrange some things, meeting a lot of people asking about Panormitis ( thanks ) and the main thing....... our daughters. We sat around the table and there I informed them about Panormitis condition, how his behavior and  interests has changed, because of his illness, so they could prepare themselves as I brought them back with me last Sunday.

Panormitis was worried for bringing the girls over because he felt guilty for not being able to go out with them and entertain them, as he always did. But I reassured him that the only thing they wanted is as they told me, to see him, to be with him. And it al works out well as I was expecting. Because of the girls he is stimulated to undertake things, like going to the seaside at 21.00 o'clock at night, just to watch the sunset, seeing Sophia painting made him paint, going to the beach and crash down into a deep sleep for more than two hours, things like this.  My sister Astrid and her husband Bert gave us this wonderful relaxed day at the beach and really spoiled us. Yesterday night my brother ( the saviour ) came by and took him out to bicycle a bit, he did for nearly 20 minutes!!!

And of course I just love having the girls around me, and enjoy each minute with them. They are very helpful and understanding in this new situation we are in and deal great with the whole thing. They love doing the shopping on their bicycles for us and are very patient with Panormitis. What a luck to have girls like that!! 

Today Alex Calas came from Munich to see us ( once again ) and do some Reiki on Panormitis, she has a very good  contact and influence on him. She is as we say a " kali parea", good company, also for me. So after a nice meal we went out for an Italian ice cream and walked  a bit around the old centre of Rijswijk. Now we are home because Panormitis wanted to watch the football match.

All with all Panormitis is doing "fine" . It takes a lot of effort though to make him to do things, as he is very tired, passive , slow, not reacting on things happening around him too much. If I would let him be. he would most probably stay in his bed most of the day. This is not what we want, as he gets to worry too much,which then makes him depressive. It could take him down very quickly, so we have to fight for this not to happen. Not easy I tell you, but also no choice, I suppose.

Monday he starts with radiation and chemo on the side for the full six weeks!!!  I took the medicines for the chemo today and had to hide the bag, such a big amount of pills. It could bring you straight into a depression looking at this pile., such an amount. Hopefully he will not have to much side effects and get better from it.  Let's keep our fingers crossed.

Wish us luck!!!

I am very sorry to let you all wait solong, but some how I could not find my way in my blog.

Thsi problem is solved now, so let me tell you how Panormitis is doing.

Considering his serious sickness he is doing not so bad. He looks at the world cup a lot. we even took him the other day to a dutch pub to see the game Holland - Japan. He looked at all these crazy dutch people all dressed in orange and making a lot of noise. He grabbed his camera and took some nice pictures. I will try to get some of these pictures on this blog tomorrow.

In the meantime we went to the hospital to discuss when to start the radiation. Today they measured on his skull a special mask.

With ink they will put lines and dots on this mask, so every day when he comes to take his radiation, he will have to put on this mask, so they know where to radiate.

Radiation will start most likely on july 1st. and will last for 6 weeks, so we will be mid august by then.

At the same time so starting beginning july he will take his chemo-cure. This means he will have to take chemo-pills for one week, and than 3 weeks nothing. After this period of 4 weeks, they will take his blood, and according to the levels found there, they will prepare a new dose for the next week, than after 3 weeks of rest they will do the same. They will do this round 6 times. So it will last 6 x 4 weeks is 24 week, so he will be finished approx mid december.

Also approx every 3 months they will take another MRI -scan to check.

The whole treatment is aimed to delay the moment for the tumor to start growing again, to buy Panormitis extra time.

After the first 6 weeks of radiation, Panormitis will be able to travel, because the chemo-cure is taking pills only and he can do that anywhere.

Panormitis ofcourse would very much like to come to Patmos, we will see if this is feasable, lets say end of august.

Yesterday Panormitis was at my house all day to see the first world champions game of Holland against Denmark. We won 2-0.

Hetty will come to Patmos on thursday and see Daphne and Sophia. Panormitis will stay in Holland, he is not fit to make such a trip. He wants to take it easy and get ready for the next step of his treatment.

Hetty will stay on Patmos approx one week and than she and the girls will go to Panormitis in Holland.

After more than 2 months the Gampierakis family will than be together for a while.

It has been a week since Panormitis left the hospital. He is very slowly recovering from the havy operation, which took more than 8 hours.

The first few days he rested a lot, was more in bed than he was up. Food is an important item in his live, he writes everyday a few pages, may times about what he eats and cooks.

In the beginning the right side of his head was very swollen, and he had a black eye. At this moment it is still so, but a lot less than last week. Yesterday we took Panormitis out for a little walk in the park, he liked this a lot but was also very quickly very tired.

In the apartment they find the necessary rest.

Last friday it was Panormitis his birthday, which was quietly celebrated with some friends and family. That day he also went to the hospital to have his stiches taken out and discuss the further treatment.

First he has to get better from the operation, than after june 30th they will start a radiation treatment for 6 weeks, after that they will see how things develop and take the next step.

With the world soccer tournament going on in South Africa. Panormitis watches the games and next month he will be the expert on this sport.

Today Panormitis and Hetty left the hospital and came to the apartment that was rented in Rijswijk. The apartment gives them a place of their own, with much needed privacy. At the same time 4 sisters and 2 brothers live within 15 minutes drive. They will not be alone.

Tonight I took some pictures with my mobile phone, not the highest quality, but it gives you some impression.

today It was my first visit to Panormitis after his surgery.

The doctors told him he could leave the hospital and go home tomorrow. Home means the appartment we rented in Holland.

Panormitis thought that maybe going out of the hospital tomorrow already, only 4 days after the surgery, was too soon. So he asked if he could stay obe more day. This wish was granted to him, so he will go home on wednesday.

My impression of Panormitis is that he is doing really good, considering he had a very difficult and 8 hours lasting operation only 3 days ago. He talks, walks, sees and hears well.

We must all realize that the operation is only part of the treatment, six weeks of radiation will follow,and after that treatment with chemo will likely follow. So Panormitis will have to stay in Holland for at least 2 1/2 months. After that we will see.

This coming friday is Panormitis his birthday. So if anyone wants to wish him happy birthday, please be creative. ha Ha

Just talked to Hetty.

Only one day after the operation, Panormitis is already back in his own Hospitalroom. He eats like crazy and is totally off his diet. Right now Hetty is getting him 2 qroquettes, a dutch treat he likes very much.

Tomorrow they will take off his bandage so that he can wash his hair. I would not be surprised if they will let him go out of the hospital by tuesday or wednesday. Than he can recover further at home.

Today an new MRI-scan has been made, that will be looked at by the docters tomorrow, than we will hear what the next steps will be.

will try to keep you all informed. It is very nice of you to comment on this blog, because Hetty and Panormitis will check it every day.

I Just talked to Hetty, the operation took from 8 this morning till 16:30 this afternoon. It went well and less than 2 hours after the operation Panormitis already talked to Hetty, Vassilis and Anneke. Part of the tumor is handed to the patholoog to find out what kind of tumor it is, the results of that are expected on wednesday.

Monday they will do another MRI scan to see what part is left behind, and to determine what treatment they will do next. Probably radiation and chemo.

The good news for now is that Panormitis seems to not have lost any functions due to the operation.

As soon as I know more, i will let you know.

4 June 2010

Yesterday Panormitis broke his biological program ( hurray Maria!) and he eat a cheeseburger for lunch!  After the restaurant where he went with his and my brother he eat another two croquette with a meat filling in the evening with Manders, Josseline and me ( Hetty).  Vasillis and me had the possibility to stay overnight at the hospital in a guestroom, but Panormitis thought it was better for all of us if we would go to Josseline's house in Haarlem ( 20 min away from hospital ).   At 05.45 we woke up this morning and went to see him. He looked very relaxed, did not sleep a lot and was writing when I came into his room.  We talked a liitle, we prayed a little, we laughed a little, we cried a little and then it was time for him to go. On the way to the OR he said to the nurse that he was ...............? hungry!! And that he was going to ask the surgeon for fried eggs before the operation. She said that the surgeon might fry them for him but......after the operation.

......................

Josseline walked her dog in the meantime and took us back to Haarlem. Before going to her house we bought some fresh breadrolls and in opposite site of the bakery there is a large Katholic church. I wanted to go inside to light a candle and after founding out where they were I found myself in front of a Greek Orthodox Madonna !!! It was very touching and also encouraging for me. 

After arriving in  Josseline's place we had breakfast in her garden and listened to Panormitis favorite classical music. Klavierconcert from Beethoven. It feels good to be surrounded by family and friends on this difficult and certainly the longest day in my life. If I think of the fact that on this moment he is in "nowhere land" it makes my stomage turn around.  I have to be patient, the surgeon said it can take at least 6 hours plus about 2 hours for him to wake up. He advised us also not to stay in the hospital and go outside, with the promise that he would call a.s.a.p.. But I do not think I can keep it much longer and want to be going in an hour maximum. Stay in touch through this blog, give a reaction on this blog or send Panormitis an email: panormitisopatmios@gmail.com. He would be so pleased to hear from you!!

Lots of love,

Hetty

just went to the hospital to bring Hetty's laptop ( they forgot it ). I was there when Panormitis talked to the neuro-surgeon. This is a very nice man, that gave Panormitis all the time to ask his questions. At one point Panormitis asked what would happen to the part of the tumor that they are going to take out. The dotor started to explane tahit it will go to the patholoog, to have it examened. Than Panormitis asked if he could have a piece of it. The doctor was a little bit surprised: "You mean you want to have it". "yes" Panormitis replied. Than the doctor said: "I will save it, and will ask you a few days after the operation if you still want to see it, and if you do ? ... well it is yours so than you can have it ".

Later on the day the evening meal was served, consisting of only 3 slice of bread, a very thin slice of cheese, and some marmalade. Panormitis decided to go downstairs and go to the hospital-restaurant, whre he ate a soup and some french fries, rice meat, salade etc etc.

Tomorrow is the operation starting at around 9 o` clock, it will take at least 6 hours, but can also be as long as 12 hours. So late tomorrow afternoon we should know more.

today Panormitis is admitted in the Hospital. He just had a vegetarian lunch and is doing fine. Hetty will be able to spend the night with him, and tomorrow is the operation. We managed yesterday to register them and to apply for the insurance coverage, everything looks fine on that end too.

Today's visiting ours in the hospital is from 16:00 till 19:30.

I will post a new blog as soon as he comes out of the operation tomorrow. We know that all of you are thinking of them.

Today Panormitis' brother Vassilis has come from luxemburg to visit, he will stay till next week thursday ( with a short break in the week-end ).

Things are getting a little bit nervous, now that the operationday is only 3 days away. We know that you are all thinking of Panormitis. If any of you want to send him a card or anything, please send it to my adress:

Populierlaan 1d

2282 KX Rijswijk zh

Holland

Yesterday Panormitis and Hetty went to see the photo exibition called: "Wild Wonders of Europe".

We all think that we have to leave Europe to be able to experience breath-taking wilderness, but Europe offers a great number of wild animals and untouched nature. In the past decades much has been done to safe them. And it works, as 43 top photographers show us in this exibition. The exibition is developed in the spirit of the international bio-diversity year.

As you all know Panormitis is a pretty good photographer himself, so he knows how difficult it is to make a good photo, to choose the right moment to catch the right light.

We could see he really enjoyed it.

There were 100 magnificant pictures, in a beautiful outdoor setting in the town Den Haag.

I ad one example, Dalmation Pelican ofcourse taken in Greece. And the Matterhorn in Switserland

Dalmatian pelican - Pelecanus crispus - GREECE/LAKE KERKINI, MACEDONIA

At 16 kilos and with a 3 metre wing span, the Dalmatian pelican is, together with the great bustard and the mute swan, a competitor for the title "The World's Heaviest Flying Bird". All three species live in Europe. The Dalmatian pelican has made a very successful comeback in the last 30 years, thanks mainly to nature protection measures. Now it is quickly becoming a very valuable nature tourism asset. Lake Kerkini is one of the most productive fish waters in Europe, and supports as well as a vibrant fishery industry also tens of thousands of pairs of breeding cormorants, herons, spoonbills, grebes and pelicans. In 2009 an EU-financed cleanup campaign removed decades of plastic and other garbage from the lake. Can we make a difference? Yes, we can! Nature conservation works!

Today a 3 room apartment is rented for 3 months, so that Panormitis and Hetty can have there own place for a while. It has a fully equiped kitchen. There is room for the girls and if family and friends want to come over from Greece they are welcome to.

To all of our dutch friends we would like to ask for things to furnace the place. We allready have a bed, couch, table and chairs, if you have anything that can be useful, please mail me freek@vermolen.org

Today Panormitis and Hetty went to Amsterdam VUMC hospital. This is the most specialised hospital in Holland for this kind of illness.

Panormitis will be going into the hospital on june the 3rd and be operated on june 4th.

The operation is the first part of the treatment, the docters will get as much of the braintumor out as possible.

Than after the operation panormitis will stay in the hospital for 4 to 5 days. And may go home for another 2 weeks to get better from the operation.

After that the docters will start the 2nd part of the treatment, which is radiation, this is to kill tumorcells that could not be taken out during the operation. The radiation is every day for 6 weeks.

Than after that Panormitis will get chemo-pills. This is the 3rd part of the treatment.

So all together it will take approx. 3 months. With a lot of visits to the VUMC. So if anyone has suggestions to live closer to the hospital, please let me know.

Αυτό το κείμενο είναι αυτόματη μετάφραση από τα ολλανδικά να
Ελληνικά.
Πανορμίτης Hetty και προσγειώθηκε στην Ολλανδία είναι καλή. Τρίτη
25 Μαΐου πάνε στο νοσοκομείο για μια σύντομη έρευνα
Την Παρασκευή, 4 Μαΐου και είναι Πανορμίτης χειρουργική επέμβαση.

23rd may 2010

Panormitis and Hetty arrived in Holland today. They are going to stay in our oldest sister and her husbands house ( Astrid en Bert ). After they rested a little bit, we went to the beach to see the sun sink into the see. ( sunset).

Tomorrow is a holiday in Holland, and so we will do something nice, maybe go to the keukenhof. ( see picture ).

Panormitis really wants to take some pictures himself and send them to his friends and family in Patmos and elsewhere in Greece.

vrijdag 21 mei 2010

Panormitis is fit to fly, will come this week-end. appointment in the Amsterdam VU hospital has been scheduled for this coming tuesday may 25th and operation on june 4th.

Bij Panormitis is de druk in zijn hoofd gemeten en hij kan vliegen.

Zij komen al dit pinksterweek-end, want dinsdag morgen is er al een afspraak voor een intake gesprek in het VU te Amsterdam.

Dan is er ook al een datum geprikt voor de operatie op 4 juni, dat is vandaag precies over 2 weken.

Vanmiddag ga ik een huis bezichtigen in Rijswijk, Steenvoordelaan, op 800 meter van een NS station, en 600 meter van een groot winkelcentrum ( in de Boogaard ). 10 minuten lopen naar de trein en 40 minuten reizen naar VU Amsterdam.

Zusjes, Astrid, Gineke, Hetty en broers Freek en Henk op 15 minuten rijden in de buurt.

woensdag 19 mei 2010.

We komen in een stroomversnelling.

Zorgverzekeraar heeft positief geantwoord. En er is contact met neurochirurgie van het VU te Amsterdam. Hetty is nu druk bezig zo snel mogelijk naar Nederland te komen. Het VU is al aan het kijken wanneer de operatie gepland kan worden. Enige ongewisse is nog of Panormitis kan vliegen. Dit hangt af van de druk in zijn hoofd, en dat kan door een arts via zijn ogen gemeten worden. Dat gebeurt morgen. Is dat ok dan kan het best zijn dat zij al dit weekend komen.

Voorwaarde om verzekerd te zijn is wel dat zij hier moeten wonen en ingeschreven staan bij de gemeente.

Als er in Amsterdam behandeld wordt is het zaak om niet te ver daar vandaan te gaan huisvesten.

Om op zo kort termijn ergens een huis te huren, moet dit in de vrije sector. Er moet huur vooruit betaald worden, het huis moet bewoonbaar zijn en ingericht. En dat allemaal in een heel korte tijd.

Hierbij zullen we allemaal een steentje bij kunnen dragen.

Mail me maar als je ideeën hebt.

freek@vermolen.org of info@freekvermolen.nl

My last post was in Dutch, I was wondering if anyone reading my blog cannot understand Dutch, please let me know.

zondag ochtend 16 mei 2010.

Vannacht onderstaande email van Hetty ontvangen. Het was al mijn streven om binnen één week antwoord te hebben op de volgende vragen:

100% zekerheid over het krijgen van een basisverzekering voor Panormitis.

Hoe snel kan er ge-opereerd worden.

Zaterdag avond 20.00 uur

- geprobeerd de neuroloogchirurg Sioutos te bellen, wordt niet opgenomen

- "scanman" Liberopoulos gebeld, aura's uitgelegd, hij verwees mij eerst naar Sioutos (neemt geen tel.op) en vervolgens naar de neuroloog waarvan ik geen telefoonnummer had. hij beloofde haar te bellen en dan weer met mij contact op te nemen

- 22.00 uur Panormitis verteld dat hij weer een geur (aura) ruikt ( deze "geur" bestaat overigens niet, alleen hij ruikt dit )

- bel met de afd. neurologie in het ziekenhuis Jenimatas waar Panormitis behandeld was en geopereerd gaat worden, kunnen mij geen telefoonnummer geven van de neuroloog en hebben vandaag geen "spoeddienst" dus moet ik het alarmnummer 166 bellen en vragen welk ziekenhuis spoeddienst heeft

- Aleka heeft inmiddels de neurochirurg aan de telefoon gesproken, nou ja, gesproken is overdreven. hij luisterde nog niet eens naar de symptomen volgens Aleka en zei kortaf ons maar bij een spoeddienstdoende ziekenhuis te melden en hing op voordat zij nog iets kon vragen. Deze man gaat dus mijn held Panormitis opereren op 2 juni???

- ik Liberopoulos weer gebeld en verteld dat ik nog geen telefoontje terug had gekregen en dat Sioutos heel kortaf was en of het niet mogelijk was om Panormitis naar een neuroloog in Jenimatas te brengen. dat was volgens hem onmogelijk alleen daar waar spoeddienst is. Ook vroeg ik hem of hij dacht dat het verantwoord was om te wachten tot Jenimatas ziekenhuis dienst had maar gaf mij geen duidelijk antwoord.

- heb uitgevonden dat het ziekenhuis Jenimatas maandag a.s. na 14.30 spoeddienst heeft

- 22.30 heb eindelijk na lang wachten bij nr. 166 ( spoed!!) een spoeddienst ziekenhuis aan de lijn en vraag meteen naar afd. neurologie

daar meld ik een urgent case en vraag naar een neuroloog. deze neuroloog vroeg mij hoe vaak hij die aura's had en wat voor medicijnen hij gebruikt. stelt voor om Panormitis 1 depakin tablet ( tegen spastische aanvallen ) per dag meer te geven , plus een halve medrol tablet ( cortizone ) meer per dag.

- Om 22.45 hebben onze vrienden ons weer naar Maria in Kifisia gebracht en na de extra tabletten eindelijk ingenomen te hebben lagen wij om 23.30 in bed. Mijn held Panormitis heeft wat poezie voorgelezen terwijl ik zijn voeten masseerde en rond middernacht licht uitgedaan. hij kon nog maar net vragen of het door de pillen komt dat hij zo slaperig is en toen viel mijn lieverd als een blok al snurkend in slaap.

- Hij slaat zich er zoooo goed doorheen en ik ben zooooo trots op hem, maar helaas slaan mijn darmen een beetje op hol en heb ik zooo 'n slaaptekort, dat ik heb besloten om morgen panormitis vriend Janis, die hier vlak naast Maria woont, panormitis een dagje te nemen zodat ik een beetje tot rust kan komen.

- kalinichta allemaal, heel fijn om te weten dat jullie in gedachten zo dicht bij ons zijn en Freek, nogmaals ik heb heel veel aan jou recht door zee opinie en support. fantastisch om dit om je heen te hebben, wij houden van jullie

p.s. Janis vertelde mij gisteren dat hij juw site zo mooi vond en ik heb hem net ook gezien en ben het helemaal met hem eens. Dat angstportret had Hetty overigens wel kunnen zijn. is dat van van gogh? xxxxxxx ( nee Hetty van Edvard Munch ).

Saturday may 15th 1600 hour.

Just got a phonecall from Hetty. Panormitis is having aura experiences. He had the same a few days prior to the first epyleptic seizure on Patmos. He experienced strange smells, and is now having the same experience. She just called the hospital and they will get back to her. According to Maria ( the friend where they are staying in Athens, it can take up to 1 hour for an ambulance to arrive. You can understand that Hetty is very nervous.

Inleiding

Epilepsie is één van de meest frequent voorkomende chronische neurologische aandoeningen. Men spreekt van epilepsie wanneer er minstens één aanval op is getreden bij een langer bestaande onderliggende hersenafwijking of twee aanvallen die niet zijn opgewekt (bijvoorbeeld voor een hersenfilmpje)

Soms wordt een aanval voorafgegaan door een waarschuwingssignaal (een 'aura'). Een aura kan variëren van het gewaarworden van een vreemde smaak of geur tot het hebben van versterkte angst- of spanningsgevoelens. Wat voor aura iemand ervaart, verschilt van persoon tot persoon.

De gemeente wet laat er geen misverstand over bestaan:

Titel I. Begripsbepalingen

Artikel 2

In deze wet wordt verstaan onder ingezetenen: zij die hun werkelijke woonplaats in de gemeente hebben.

Dus we huren een huis, Hetty gaat er met haar gezin wonen, schrijft haar in de gemeente in, en is vanaf dat moment ingezetene.

thursday may 13th

Today I flew back to Holland with mixed feelings. Having experienced the Greek hospital for a number of times, I believe that it would be better for Hetty and the girls, if they would come to Holland. The fact that Greek Hospitals are run very chaotic, is not so bad, somehow they manage. But I have seen that nothing is registered, I f you want something done it is more or less a lottery.

And I also believe that the changes that mistakes are made are high.

I have taken CD-roms with all the scans with me. Will try to get them on the internet, sothat professionals that we still may want to contact can download them.

It is my aim, to see if the Dutch option is a possibility.

There are two things to find out:

1. Insurance. Is it possible to move to Holland and get a Dutch insurance, because the Greek Insurance will most likely not pay for Dutch care.

2. Waitinglist, how soon can Panormitis be operated.

On the first question I have already done some research, I have send an email to het College voor Zorgverzekeringen, herunder the text and the answer:

bericht: Mijn zus (nederlandse ) en zwager (Griek ) wonend in griekenkand hadden plannen om naar Nederland te verhuizen, samen met hun Dochter die na de zomer in Maastricht gaat studeren, de jongere andere dochter komt ook mee.
Tot onze grote schrik is er bij mijn zwager een hersentumor geconstateerd, Wij weten dat met de Europese Grondwet ( vrij verkeer van personen ) niet geweigerd kunnen worden ingezetenen van Nederland te worden. Ook weten wij dat zij als ingezetenen verzekeringsplichtig zijn en verzekeraars ze niet mogen weigeren. Kunt u ons garanderen dat zij in Nederland direct verzekerd kunnen worden, zodat de zorg voor mijn zwager die hij nodig zal hebben direct verzekerd is.
Gezien de urgentie van de behandeling voor zijn ziekte beeld zou ik graag snel een antwoord hebben. mvrgr Freek Vermolen

Geachte heer/mevrouw ,

U vraagt of het CVZ kan garanderen dat uw zus met haar gezin, die uit Griekenland naar Nederland gaan verhuizen, in Nederland direct verzekerd kunnen worden. Dit in verband met ernstige ziekte van haar echtgenoot.

Dat kan het CVZ niet garanderen. Dit is namelijk niet iets waar het CVZ over gaat.
Wij kunnen u wel informeren over de procedure. Als uw zus en haar gezin zich in hun nieuwe woonplaats hebben ingeschreven, moeten ze zich melden bij een zorgverzekeraar. De zorgverzekeraar zal moeten beoordelen of zij als ingezetenen van Nederland kunnen worden aangemerkt. Is dat het geval, dan kunnen zij een zorgverzekering in Nederland afsluiten. Als ingangsdatum geldt dan de datum inschrijving in de nieuwe woonplaats.

Wij vertrouwen erop u hiermee voldoende te hebben geïnformeerd.

Vriendelijke groet,
College voor zorgverzekeringen

The big question is when are you a: "ingezetene", because ones you are, you will be able to get an insurance.

Housing for the Gambieraki family is not an issue, I will take care of that.

If any of you have suggestions, please mail me.

Wednesday, may 13th 2010.

We spoke to the man that made the new MRI. He is a nice guy, and explained to us that the size     of the  ' tumor'  did not change. There was however some change in the structure, but that has no significant influence on the situation. It prettymuch rules out the possibility of a herpes, so the best thing to do is to operate.

We than talked to Dr. Sioutos ( he is the brainsurgeon). He had a very clear idea of what he wants to do next, namely a  Craniotomie, which means an operation aiming to take as much of the tumor out as possible,  a date was set for june the 2nd, and in the meantime Hetty and Panormitis will go back to Patmos.

We asked dr. sioutos what the changes are. He told us he has done this many times before ( he mentioned it is almost routine ) . hetty and I still have some doubts and reservations, but Panormitis, fully aware what had been said, has faith in Dr. Sioutos and the hospital. Which I believe we should respect.

So the next important date is june 2nd.

to be continued

   

tuesday, may 11th 2010.

Today the new MRI scan was made. The doctors will need some time to have a close look at them and compare them to those made approx. one month ago. so we made an appointment to discuss it tomorrow 11 o'clock. However the doctor that took the scans already told Hetty there was not much or actually no change.

We think this pretty much rules out the possibilty of a herpes. That together with the analysis of the spectrografy ( probably a GBM) makes things look bad. An operation is needed to see what it really is.

there are basically 2 types of operation the first one is a Craniotomie, part of the tumor-tissue will be taking out for investigation and at the same take out as much as possible of the tumor.

Such an operation is not without risk, but if it goes well, the patient will come out better than he went in.

Second we have Stereotactische Biopsie. They drill a tiny little hole in the scull and take a little tissue out for investigation. If the conclusion than is to take away as much as possible, a 2 operation is needed. So most of the time they do a Craniotomie.

Tonight I had a good talk with Panormitis, we openly discussed all the possibilities, from good to very bad. We did not run around the bush, but called everything by its name. The main thing we agreed on was, that he has the right to get answers from the doctors if we see them tomorrow.

to be continued immediately    

Hello, this is my first blog. Some of my blogs will be in English and some in Dutch. The main reason to start this blog is the fact that I want to inform you about the developments around the illness of my brother in law, Panormitis, who is married to my sister Hetty. 

About a month ago P. had a epitectic attack, and was transported first to Rhodos and later to Athens. They took an MRI-scan and later a spectography. On both of the scans something appeared that suggests a malignent form of braintumor. A date was set for an operation. But the scans were send to several neurosurgeons around the world. And one of them told us that there is a slight change that this is not a tumor, but some sort of a herpes. Now since it is protocol to give medicines against herpes P. has taken these medicines and if it is a herpes, an MRi-scan taken about a month after the first one should show that the 'tumor' has shrunk. So the operation is cancelled and another MRI-scan will be taken next tuesday may 11th 2010. If the tumor has not schrunk a new date will be scheduled for the operation.

In the last weeks a lot of thoughts and questions have come to our minds. What if P. comes out of the operation and needs a lot of care, is Athens than the right choice. And are the doctors in Athens good enough.  One friend even offered to pre-finance an operation in Munich. And than there is the possibility to move to Holland, and enter the Dutch care system.

It has been suggested, that the doctors in Athens are not good enough, but how can you tell. One person compared it with soccer players, the whole world knows Pele as the best soccer player, but that is because everybody has seen him play, has seen his actions, and has seen him score, so it is hard to deny that he is the best. 

But how do you find the best neurosurgeon. Are there statistics, how many times did a doctor perform this kind of operation,  how many times was he succesfull, and how do you measure succes anyways. 

The hospital in Athens has 3 neurosurgeons, we have been told that they are good doctors.

But the care after the operation seems to be less advanced than let's say in Holland. 

And also what is the best location for the family to live together. There are to daughters, Daphne is going to Maastricht for 2 years. And Sophia is on Patmos, she should be joined with here parents, maybe it is possible for Panormitis, Hetty and Sophia to still spend time on Patmos.

to be continued