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!!!