tuesday 29 November

Tuesday Anneke came by and stayed for dinner ( Indonesian food,  he loves that!) After Anneke took him out for a walk and later they came to meet me in the supermarket.

Also Anneke feels very good how to please him as you all can see from the pictures, She is gentle, patient and very sweet with him.  Thank you Anneke, for the nice evening!

That night the new "assistant" came, her name is Augustina. After I introduced her to the whole family we sat down and had a wonderful conversation for an hour or so. I must say that I slept alright, although I woke up early and was restless. I still feel a sort of strange not being next to him in the night time. Panormitis is the same as he was a few days before, no change, also no back drop. Let's hope it stays like this for a long time to come.

Monday 28 November

This morning Panormitis made breakfast, yoghurt with muesli and fresh fruits, chopped very fine by his hands...... delicious! btw, the painting on the back is made by Panormitis exactly one year ago

We went for a walk in the forest, and had soup in one of the petit restaurants in our neighbourhood. After that he went for a sleep. And then......? Surprise, my brother Freek visited us once again. He comes so often and is so welcomed by Panormitis.  Boy, oh boy, how also he knows how to treat Panormitis!!!  It is amazing that some people feel this as a natural thing coming to them, when it is not any more possible to communicate on a normal level, you have to find other sources. Both Josseline and he have this "gift". We feel secure surrounded by his company, we love you so much broertje!! Today they both sat on the canape and Freek made a little game out of nothing, that made him laugh. And these are the moments we treasure, which makes us happy.

Although not a clear pic... it is the moment we treasure!

Wonderful photographs....

We had "kliekjes" (left overs) for dinner and after we looked into the photobook Freek once brought, he loves looking at them.


For today it is enough.... off to bed, kalinichta!!

Sunday 27 November

Today Josseline came again and stayed and cared for us the whole day. Sophia went to a classmate to make homework and Daphne and me made a little walk downtown.  Like always, she knows so well how to be with Panormitis, how to make him feel good. And not only him, she is always there for all of us as well, to listen to my worries, gives me advice when I worry about the girls. She makes me feel that I can open myself completely and let my tears run, We all love her and feel so grateful for her support.

Saturday 26 November....

we went to the sea side and after warmed ourselves up at an open fire place in a "grand cafe" where we had lunch with Daphne and Sophia. It was too cold to walk outside

Our first night "seperate"...

.... was just terrible!! The clock showed 03.00 and I still was awake, crying and felt guilty to have "left"him. That first night when he had to go to the bathroom, I stood behind the door, listening if the nurse was patient and nice to him. And thank God, she was very sweet. I must have fallen asleep around 03.30 having a nightmare that woke me up an hour or so later........ In the morning Magda ( the nurse ) asked me how I slept and I told her how my night was. She said that this was quite normal and that I will sleep better the next night.

Panormitis slept very well in his new bed and he calls Magda " my assistant" . They get along well and as I slept the second night more then 4 hours non stop I gave it another change. Yesterday was the record, from 01.00 untill 09.00 o'clock. As I had "planned" in the beginning to let his "assistance"  come for 3 nights only, now she will come each night. I am sooo exhausted, all my tiredness comes out. Also it is more quiet for Panormitis, he was "leaning" too much on me, 24 hours a day is not nothing.

Now we take a nap together in the afternoon in our bed, which feels good. I can feel that I am able to take  better care of him in the day tim now that I can sleep through the night. You see, it is not only Panormitis that needs to be cared for, we have to teenage daughters as well, and they need also support and attention.

We will see how it goes, we are always in a position to change this program. It is just that in our case we have the highest indication for home care and why not use it ? Magda comes around 23.00 and leaves us at 09.00 in the morning.

Also we have a lady coming (Barbra) who is a volunteer for an institute that helps terminal patients. She is here twice a week, on Wednesday afternoon for a couple of hours and on Friday night so I can take Sophia out after her piano lessons.  What a "blessing" to have all this care!!!!

 

The new bed......

Just woke up......

Een berichtje van Henny........

Hallo dappere Hetty en lieve, dappere dochters, ik had even commentaar gegeven op de blog maar weet niet of ik het goed gedaan heb, daarom nog even via de mail.
Ik denk dat het van jullie een juiste beslissing is om vanaf nu te proberen nog zoveel mogelijk van elkaar te genieten. De momenten zijn er nog, als je de foto ziet thuis terug van de reis naar Amsterdam...een hele mooie foto met die glimlach... en dan de foto bij de piano een en al oor en opgenomen door het spel.
Dat zijn en blijven de kostbare momenten.
Hetty vergeet niet om jezelf af en toe te laten fotograferen met Panormitis.
Ik ben blij voor je dat er nu iemand komt slapen voor een paar nachten, je weet dan tenminste zeker dat Panormitis niets tekort komt en jijzelf in iedergeval in bed kunt blijven om te rusten.
Ik wens je heel veel sterkte en hoop nog even langs te komen voordat ik naar Maastricht moet.(8 dec.)
Lieve groeten voor jullie allemaal, take care Henny

24 November

A

After a short night and after I had lost a bit of my patient in the morning,  Frederike came to give the whole "Gambieraki clan" a massage. The ladies had a chair massage. Ofcourse Panormitis had an extra long massage including footmassage. We all loved it, it was a nice treat,

thanks a lot Frederike!

They called from the hospital in the afternoon asking if we needed help with anything......

well, she really phoned at the right moment so I asked for support. After 45 minutes she called again telling us that if we wish, this weekend we will have a "hospitalbed" brought to us for in the livingroom and each day we can have  a nurse coming in at 23.00 and leaving at 07.00 in the morning. Very welcome, so I can have some sleep, as Panormitis wakes up in the night and keeps me also awake for hours. I need to be strong if I want to continue taking care for him at the house, so I need to have energy. Something that I feel slipping out of my body very fast these days. A lack of sleep can really make a rack out of us.  I do think that it is also the medicine that makes him so restless in the night, we are slowly reducing this medicine, hopefully he will be able to relax a bit more. The nurse will come 3 times a week for now, I thought that would give me enough sleep. Panormitis had a very calm day today, he did not go outside and slept well in the afternoon.

This game was just finished ( Daphne won ) and we are having a cup of tea before we all go to bed. We are so happy Daphne is with us these days. I am also "nursing" her as she does not feel too well, and she entertains her father in between.

Kalinichta for now....

So many different ways of showing love

but love is received all the same.....


Sophia schatje, you give papa ( and me!! ) so much pleasure when you play the piano!

On our way to the hospital together with Daphne and Sophia......



to be short, the visit with the neurologist was good, it gave me a more clear view on our decision. It was in one way, but with different explanations and words, a reconfirmation of the former conversation we had with the neuro surgeon.

Nevertheless, it feels different now.... also Daphne and Sophia share this feeling. This photo expresses how we all feel after we arrived home today from the hospital....very emotional. But look better now....... do you see what I see??? So much love and affection for each other and ..... beautiful smiles....

22 November 2011

The oncologist assistent phoned me today to tell me that the care of the hospital will not end here. They will keep in touch with us on a weekly basis, to see if we need any emotional support, nurses to come to our house to help me out in the near future etc.etc. I got emotional and told her I was afraid to miss out or overlook any other possibility. She told me that she understands and that we could come the following day to speak out my worries to the neurologist, Jaap van Reijnenveld, who is very active in researching and has a lot of knowledge of QOL (Quality of Life) issues. He would come back the next day from a major brain tumor conference in Los Angeles. Hearing this again gives a feeling of confidence about the people who we have trusted Panormitis to. So that is where we will go tomorrow.

21 November 2011

Witt Hamer is the name of Panormitis neuro surgeon. He phoned last Monday the 21st of November to ask us if there was any improvement in his behavior, with the very strong medicine he gave one week before.  Cause if that would have been the case they would be considering another brain operation. But unfortunately, the symptoms got worse, he is more and more apathetic,  living in his own world, has apraxia, not knowing anymore how to act. This means for example, I can give him his clothes to get dressed, but he will not dress up, just sits still without moving, not knowing anymore what to do.
Last week was so very important, in the sense of finding out if there was also liquid in his brain, if that would have been the case, his symptoms would have improved, because of the medicine given to him. But as it didn't, they diagnosed that what they could see on the MRI was all tumor, that has been imbedded inside the braintissue, having made damage to the brain itself. And there is nothing that can fill in this "gap", as Freek said:" no one and nothing is capable of making new brains". The old tumor was located in his right temporal lobe and the new ones are located on the right and the left frontal lobe. This explains also his behavior changes. Many patients do get aggressive when they suffer from this "frontal syndrom" as they call this. But Panormitis is just even more soft, loving and caring as he was before. Two weeks before, when we visited Witt Hamer to talk about the outcome of the MRI ,he said already that an operation would bring many risks and too little improvement( if at all, or even worse damage) as the left side can not take over from the right side and conversely.We also were told that he would not necessarily gain more life time.

Both Daphne, Sophia and myself we have chosen for quality of life, to keep and treasure the little bit of Panormitis that is still here today. Chemo and/or radiation give us too little percentage of succeeding and improving his condition as well. We are supported in our decision ( if one can call it a decision, when the options are so poor?) by our beloved ones.


This all means that there will be no more treatment......... and that means that we are entering his last life stage. The expectations are that he will loose even more of his character, his awareness, he will sleep more and more as time passes by. We are thankful for the fact that he is not suffering any pain and that he is still the kind, loving and caring Panormitis we know. Plus that he has no insight in his own sickness.

It will get very difficult for us, the people around him, who will watch him day by day "slipping away" but if we may keep receiving all of your support, we trust that we will get through this in the best way.

We will give him the care in our apartment in The Hague as long as we can.  I will try to post something small each day..

19 November 2011 visitor....

.....thanks Alex, for the walk, the conversations, your company and ..... your Reiki. Keep sending the good energy over.

Did you know that music.....

......seems to stay longest in our memory, that's why each morning during breakfast we listen to greek songs. Sometimes old songs, sometimes newer songs, he sings the lyrics softly and sometimes he doesn't. But I believe it pleases him.

openend my email this morning....

and among a lot more sweet emails, was this one from a friend in NY . She became very dear to us and I wanted to share it with you:

Dear Hetty;  I am thinking of you and wrote you and family a poem of love to give you faith.

   

 Hard times seemed to have arrived - do not despair

 surrounded by love - no matter what happens

 Panomitis will be blessed - we do not know

the end of our life - but what we know is that

our beautiful spirit will always be around.

Wipe your tears away - be happy having your

beloved near -  celebrate his life - No one knows

the date of our departure - it is possible that

Panomitis will fool us all - miracles do happen

if you just go with the tide and hold your beloved

 who seems in danger close to your heart 

We can pray - but hugging our beloved when he is

 in pain - is the healing medicine for a positive result

Have faith until the end that a miracle will appear

and Panomitis will be better again - he has been down

before and has risen again - therefore, please hold him

tight until the end of a new beginning in his life

Have faith that whatever happens is meant to be and

there is no ending to our lives - we just have to

change our appearance but our eternal spirit will always

be hugging and guiding the family clan.

Be happy while he is near - forget about tomorrow

just remember today when you touch him- he has not

flown away.  Do not mourn what has not happened as yet.

Do not be sad - give your beloved a gentle smile

and an embrace which is the healing salve for us all

With all my heart I wish Panomitis will win the battle

thinking of you forever on.  Fay

To end the day....

a game of ..........memory!!!

and a goodnight hug from Sophia ... Kalinichta!

reiki......

The moment I am writing this I am watchting Panormitis who fell asleep during the reiki I gave him. He is still on the massage table in .....dreamland? Wonder so many times a day, what is going on in his head, what is it that makes us function and at the same time can break us?? Somewhere I read that the brain is the most complicated existence in the universe..... I believe it! Although it sounds strange, but to experience this is like a rich lesson in my life. Ofcourse you wouldn't wish for anyone to experience this in his life, but once in it, one better takes out the most of it!!! It just amazing realizing so intensively that each little movement we make (conscious or unconscious ) from blinking our eyes till breathing, from walking till parachute jumping, ( something Panormitis did as well in his life ,)  from how we place our tongue in our mouth in order to pronounce a word, is coming from the brain. How we produce tears, a smile, how we sense that wonderful feeling of falling in love,  how we sense pain, sadness or happiness.  ... amazing right? The brains are the center from which the functioning of our body is regulated.  But also our emotions are related to the functioning of the brains.
The number of nerve cells in humans is estimated at 1,000,000,000,000 (trillion), not all are used. If we miss some of them, this does not lead to consequences for daily functioning.But if whole parts of the brain is damaged by a tumor, then slowly all the functions will fail. Panormitis tumor is now extended to both sides of his front brain, which brings changes in his behavior.
He is not spontaneous anymore and reacts very slowly, showing little or no emotion and is very passive. His speech is very difficult to understand, as he is confusing the words, (afasia) he does not know anymore how to act ( apraxia) . A great comfort in this situation is that he does not know himself, he has no insight into his illness, ( although some moments I think he still does, but then forgets immediately)  but it makes it ever so difficult for the people next to him ,dealing with this behavior changes. Each day I look at pictures of him from "before" and that keeps me going, I suppose. For me he is still  Panormitis, changed yes, but still the love of my life. Many times I can make sense out of what he is trying to say, and I am grateful for that.


Anyhow, enough for today....

Vasillis left this morning, back to Luxembourg. It was good for all of us seeing him here with his brother l!!

It was a quiet day today with even a bit of sunshine! So Vasillis took Panormitis to the park where I found them later. We even sat down for a little while, it felt good to have the sun on our face . After we went home were the "fasolada " was waiting for us. After lunch he slept for an hour or two and now we are having our diner. Freek ( my brother ) is going to take the "boys" to see football at my other brother's house. Just to change environment a bit..

back from the hospital...

.....where the neurosurgeon explained us very clear the next step. Which means:  a new medicine for Panormitis to see if he reacts well on it and hopefully will reduce the symptoms he has at this moment. If this is possible then they might consider to operate on him again. But we have to be patient for one more long week. I will need to observe him very well in order to give the right information. His brother Vasillis is here for a few days, which makes us very happy. Just now he said " kalinichta adelfouli mou" with a big smile on his face......  and went to bed. It's time for us as well, it has been a long day. Goodnight!

some impressions........

10 November 2011 Yesterday at Kijkduin. Is he looking for .....sea urchins again??

08 November 2011 Happy Name Day Panormitis.......

02 November 2011 at a forest..

31 October 2011 The night before Daphne went back to her College we went out for our dinner...

31 October 2011 Our Reiki table arrived so I will be able to practice a lot and hopefully he can benefit from it ...

29 October 2011 Josseline our dearest friend and Panormitis "one hour wife"...

28 October 2011 Vissershavenweg Scheveningen. We went there for one hour and then we had to return back home as he was very tired... But we had a beautiful day with Daphne who started to sing Greek songs with him about the traditional "Oxi" day. She stayed with us her whole autumn break and stayed an extra week, as both girls had a very hard time seeing their father changing so rapidly, they couldn't concentrate too much on their school work. It was good she stayed, also for Sophia to have her beloved sister around her these difficult days.

23 October 2011 our weekend in Zeist and the Utrechtse heuvelrug met An en Jos. Een weekend waarin wij allemaal zagen dat zijn cognitieve handelingen afnamen.

 21 October 2011 curtains open for:

George Michael, what sweet memories brought us this night!!! While Panormitis was just taken so much by the light effects of this show, I had a lot of emotions. I must say that I realized on this night that his behavior started to change...

20 October 2011 Sophia and Panormitis "connected"on our way to the exhibition of "Masters of Photography" in Leiden Volkenkunde Museum. Great show!! I think this was the last time we had a wonderful conversation about art , he enjoyed so much looking at these photographs...

16 October 2011 The day we all went on our bikes to Scheveningen (8 kilometers going plus 8 coming back) amazing.....

15 October 2011 one day after we arrived in The Hague again it was our 18th wedding anniversary day ( 21 years together) and still wonderful years...

11 October during my last tour to the Monastery Chora, how I miss it, just imagine how Panormitis must miss it!!

02 October 2011 Not to forget his stepmother "to Chriso" a remarkable day with a lot of emotions.. but very sweet

25 September 2011 Visiting his aunty Marina at top Kambos

19 September 2011 On our way back from Marathi with Benetos and Susy, fishing for calamari at sunset... boy what fun and how relaxed was that day, very special!!!

17 September 2011 at our dearest friend Aleka's new house in Chora. She always stand next to us from the very first day of his sickness, we will never forget!

13 September at Diakofti "Stavros party"