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the story of my life: Panormitis

panormitis
Posts: 16
Joined: May 2011

My husband is nearly 46 years old and was diagnosed with gbm grade 4 in april 2010. We have two daughters of 17 and 15 years old. My husband is Greek, I am Dutch and we lived on a small Greek Island ( me nearly 30 years) where there is no medical care, no airport, nothing. We were in hospital in Athens, where they said it was not necessary to operate him as he would not have more then a few weeks to live. This was for me the beginning of a research, setting out his scans on the internet, setting out a network of friends all around the globe to help me in finding a treatment and hope for him.

A close friend of us from NY had found out that in Amsterdam (not because I am Dutch, just coincidentally ) is a very good neurosurgeon, specialized in gbm brain tumors. I contacted him and within 1 week we went to The Netherlands, leaving our two daughters behind with a niece of my husband. They had to finish school, were in the middle of their exams at that time. It was very hard for all of us, leaving not knowing what would be happening. My husband went into surgery on the 4th of June, it took more then 7 hours, the longest day in my life!!

We are all based in Holland now, the girls go to school here. Our oldest daughter had won a scholarship for a fantastic education at the United World College in Maastricht, 3.5 hours away from us by train. She is in a boarding house with 50 students who come from 47 different countries, what a experience for her!! We received this happy news two days primer to my husband epileptic attack on April 6th 2010. So the joy of her scholarship was pushed completely to the background, I could not be supporting her much in the preparation, but she managed and we wanted her not to loose this chance. She tries to come home once a month or so and we love being all together.

So, here we are in Holland where treatment is very successful, he reacted very well on the chemo and radiation and they took another scan on where they found another "spot" 2.5 centimeter big. They say it could be a side-effect from the treatment,called necrosis, so not necessarily a new tumor.
We are waiting now for the new scan at the beginning of June to find out.
All of us are trying to "steer" our thoughts to it being necrosis, the side effect, which is the best of course.

Besides the conventional treatment I also have found a homeopathic treatment for him from Calcutta, India. They have the highest rate of brain cancers there and they book very good results in a clinic with this treatment. It is called Ruta graveolens c6 g and Calcium phosphorica d6 t . I will try and find the link of this clinic later on. My husband's condition is called superb and we can not say if the homeopathic treatment is due to his condition or the conventional way, or both. But it is certainly worth trying it. Wishing you all the best and besides giving all our love, being patient, keeping them away from stress, do not forget one more thing, try and give humor a place in your daily life, either by watching a nice comedy, jokes or silly games. Very very important, just smile. I know it is difficult but life is too short to be sad all the time.

We go back in between treatment to our home on Patmos island in Greece as much as we can, been there in August 2010 for six weeks, for Xmas, for Easter ( my husband is still there at this moment with my brother "watching" over him ) and we been to NY in February where we have been able with a lot of help from our NY friends to accomplished one of his wishes. To show his photographs in an exhibition in Chelsea, after doing several exhibitions in Greece. if you go to you tube and search for " Panormitis Abstracts" you will see him at the openingreception, in a blocked blazer talking about his work, very happy and very proud. Of course we did all the organization, but it was his work, his photographs that were selling.

It feels very odd to be without him as we were constantly together for 1 whole year. But it is "only" for two weeks and I think it did both of us good. Unfortunately I broke my foot and am tied to the house., but the good thing is I discovered this site, that gives me a lot of hope and support. Support I also found in my own family and friends here in Holland. It is very difficult to be back in my home country after 30 years, it has changed a lot. It was hard to find an apartment that was payable, we do have double expenses as we still have our life back in Greece as well. The new school for our youngest daughter, which has a completely different learning system and language, she is passing a tremendously difficult period in her life. Being a teenager, taking away from her beloved island, her friends, her school, a father who has changed because of his sickness. And missing her sister who left for College, they have been always best friends, very close doing most things together in their life. My God I pray for her to manage to overcome all of this and give her all my support. She is helping a lot and giving me many times logic advices, amazing how a child can be in situations like this.

So, as your question was about how it is going back to work for patients like our husbands my answer is a big yes. As much as they feel good about it, they are contributing like this by distracting themselves from their sickness. And all this should be without stress and surrounded by a lot of love.
My husband could not stay at his regular job in Greece,as we were forced to move away, that's is why we found it so important to exhibit. We might go to Paris to do another show, depending on how he feels after he returns to Holland.

Wishing all of you strength, hope and patient.

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