Christos Mouktaroudes (Limassol, Cyprus)

DSRCT Diagnosed 10/03 - Passed Away 02/28/2005

Christos' Story

by Sophie (Christos' sister)

 My brother never thought of anything.  He was enjoying his life to the full with friends, going out to discos, watching football (his favorite team was Liverpool ), he enjoyed every minute of his life.  One day he met Amanda-Jane, his wife from England , got married and settled down.  He owned a restaurant in which he worked in terms with our other brother, George. 

 He never seemed to have problems but of course he never discussed anything with anybody.  He used to keep everything for himself.  He only got stressed with football and it was so obvious that he enjoyed it and got mad at the same time.

 Imagine that his wardrobe was full of t-shirts of Liverpool , trousers, shoes, photos, books, Video-tapes, calendars, a t-shirt with all the signatures of the players...  He loved and adored football tooooo much.

On the 23^rd of September, he had his second baby, our beautiful Rebecca-May.  We were so happy.  His parents in law came to be with their daughter and spend some time with the newborn baby.  On the 2^nd of October, we were having dinner with my family and Mandy’s family on top of the restaurant as my parent’s house is a flat and they lived above.  As we were eating, my brother phoned so that somebody would go to help him because his foot got swollen.  His wife and then my mum went but we never thought that something bad was going on.

The next day, my brother looked like a monkey.  His face was not normal.  He went to our personal doctor and he suggested to go and have an ultra sound on the belly as he felt that something was wrong.  (I should add here the irony of my brother’s answer to the doctor’s question “what is this entire belly?”  His answer was “the enjoyments of life”…)

As soon as he made the ultra sound and of course after the doctor’s shock, he was told to go to the hospital but my brother never got this in serious and went home.  At night time when I found out, I phoned him, I told him to get dressed and at 8 o’clock , night time, we went to the hospital.  They kept him in for three days, discussing what to do because they never saw such a mass before in their life.  They decided to make a biopsy.  (Our first mistake, we shouldn’t have agreed to make the biopsy.) A piece of the mass was send to the Hospital of Nicosia (our capital), to Greece and to Germany .  They all told us it was a desmoplastic small round cell tumour.  The tumour was 20 x 13.5 x 14 (cm).

A specialist in Histopathology – Cytology even asked me how many children he had and when I said two he said: “what a shame…” and when I asked: “Why, is he going to die?” he said:” No, no, I never said that” but that’s what exactly he meant.  The answer from Germany was that we had no options; my brother was going to die.  “All the doors are closed” they said.  (The biopsy and the answer from Germany is not from Dr Zamboglou, it’s from another Hospital, another city and another doctor).  We never said anything to my brother, to my sister in law and to my mother.  All the rest, we knew but not many things.

We went to make chemotherapy.  (Second mistake, the doctor in Germany told us that this tumour is not treated with chemotherapy and of course at the stage in which he was he should have made radiotherapy from the very first moment.)  The doctors in the Oncology Centre of Cyprus never had such a case.  It was one in a million they said and the only one in Cyprus ….  He was admitted for combination chemotherapy on the 3^rd of November ’03 , with epirubicin, ifosfamide with mesna uroprotecion and vincristine.

Day one, two and three: Epirubicin and ifosfamide

Day one: Vincristine

He also had mesna sometimes for uroprotection.  He stayed in for four days and every 21 days he had to return to make chemotherapy again.  At home he used to have:  

1. Granocyte, 8 doses, 1 amp/day
2. Dexamethasone 4mg daily for 3 days
3. Metoclopranide 10mg TDS p.o. for 13 or 19 days
4. Mouthwash 2 tabs TDS p.o.
5. Famotidinc 40mg p.o.

Don’t really know if the spelling is correct or what does TDS and p.o. mean.  Sorry.

He made this therapy 3 times and after making the scans on him they decided to change it as it did nothing to him.

The second chemotherapy was:

1. cisplatinum
2. etoposide

 Don’t really remember for how many days he had this and what he had at home.  I don’t have any notes.  I remember that after having this chemotherapy he needed blood.  He put two bottles.  This chemotherapy was done 3 times again and after making the scans they changed it once more as the tumours had grown and it made a metastasis to the lungs (they never said anything to us about that, I discovered it three weeks before he died by accident). 

The third type of chemotherapy was done only once as they mixed the medicine with other medicine that my brother shouldn’t have taken and my brother was acting like crazy, talking by himself, doing weird things with his hands and his face.  As soon as he left that day, he never went back again. 

He start going on holidays with his wife and kids enjoying every moment of it and in the same time crying of how he was.  He continued working in the restaurant as if nothing was happening; he was enjoying his football matches.  He celebrated his birthday for the first time with the whole family and his best friend Costas in a restaurant.  I won’t forget that night as it was his last birthday to celebrate.  He never made it on this year.  (Before going to Germany for the last time, he told his wife that the only thing he wanted was to celebrate his 31^st birthday in his new house which was on the 22^nd of March.)

I convinced my brother to go and visit Doctor Zamboglou.  We had to go… he was so afraid though.  He quit smoking from October and just a few days before going to Germany he started it because he was in stress, away from his family and his country.  I went with him of course because I was the one who booked the tickets without even asking my parents or anybody else except my brother.  I had to do something to save my brother because I could see that things were not good.  His best friend Costas came with us.   

The doctor in Germany made some new scans.  It took them a day to tell us what we should do.  All the doctors in the hospital made a conference and it was decided that he should take brachytherapy. (The doctors in Germany are about 20 persons.  They all gave up on my brother because they knew they had no chance but Dr Zamboglou insisted that they should try, they had nothing to lose.)  Don’t know if it’s in your knowledge what brachytherapy is.  I will try to explain.  It’s a straw of 50cm I think.  25cm of it is put in the belly (or wherever else you’ve got the problem) and the other 25cm is out of the belly. Radiotherapy passes from these straws for about 45 minutes (this is the strongest one).  When my brother heard this, he got so frightened that he wanted to return in Cyprus .  Unfortunately we did.  He couldn’t decide.  First of all, football was taking place at that time and he wanted to watch all the games.

Then, summer came and he wanted to go on holidays in Italy with his family.  (My mother is Italian and we have many relatives there.)  So, he went there too.  We couldn’t do anything to change his mind so we decided to bring the poison of the blue scorpion.  We had nothing to lose, that’s what we thought but it was a waist of time really.  My brother George went to Cuba and brought it.  (Our third mistake and the last one.)  I don’t know if you’ve heard of it.  Everybody was saying that it made miracles so we run in order to save my brother.  We lost 2 months there…  After having it for one and a half month, he quit on that as well.  It did nothing.

He insisted in staying in Cyprus cause his little daughter was getting baptised.  The situation though was terrible and so I pushed him to go to Germany .  Of course, I went with him and so did my mother.  He did the brachytherapy for 3 days.  He had 4 therapies but he should have made 5.   He wasn’t in pain at all but only the thought of being away from his family was making him nuts.  The exams that he made before the therapy were too many.  I have to tell you that one of his kidneys was totally closed and the second one was about to close.  For us, it was a miracle cause if he stayed some more days in Cyprus , he could have died.  He was saved by the doctors there and it gave him another 6 months of life!!!

I remember that the doctors had to put something in his kidneys from his private organs and he had to sign a form that was saying that nobody was responsible if death occurred.  I remember him calling me inside with him and asking my opinion if he should make this.  He took my hand and squeezed it so much…  I was afraid, but he had to do it for his own good.  I never told or showed him though and I never said anything to my mother that was sitting outside the room and was waiting for the doctors to come.  Thank God, everything went well then. 

 After one and a half week, we went home, to Cyprus .  He was so glad.  He hugged everybody in the family and was crying on everybody’s shoulder.  We made his daughter’s baptism as well.  He was a proud dad that his little daughter never cried in the water.

After six weeks he went back with my mother and his wife.  He should have made 10 therapies then but he only made 6.  He couldn’t stand it.  He wasn’t in any pain at all as I said before; he only wanted to come back in Cyprus .  He couldn’t stand being in the hospitals and missed his children so much.  He came back and after six weeks he had to go again.  We encouraged him to stay there and make all 10 therapies and indeed he stayed and was willing to stay for Christmas time as it was in December that he made his third Brachytherapy.  The doctors said that he didn’t have to stay and that the next time he was going there he was to make operation.

The word “operation” was spinning in his head…  He got scared, frightened, he couldn’t sleep at night, he used to see nightmares, and he didn’t want to go there.  I begged him; his wife begged him, our whole family, his friends…  It was so hard for him to decide.  After 5 weeks that had passed and he had to get ready to go to Germany , he booked tickets to go to Italy again with my mum.  We couldn’t say no.  We could see him suffering.  That trip was his goodbye to all his family there.  Everybody went there to see him.  They were all in shock, everybody was crying…  Everyday they went to see him; they brought chocolates to him, food that he wanted, clothes, and toys for his kids.  They filled his bag with things…  (My uncle told us that he said that he was feeling that he was going to die in Germany .)  He never expressed anything to us about that.  He never showed his feelings about the disease.

 I remember that I used to tell him not to be afraid and not to think that death was coming and what was going to happen with his kids.  He always used to answer me “And who said that I am afraid!!!”

He stayed two weeks in Italy and came back just to stay another two weeks with his family.  He knew…  He knew he was going to die and that’s why he spent this time with the Italians and his family.

Eventually, he went.  After 4 days of staying there and after doing all the examinations, it was decided to make operation on Wednesday.  He phoned us immediately.  He wanted all the family there.  He even wanted his kids but it was impossible to bring them there.  His wife, brother, sister in law and me left on Sunday.  We had some quality time with him.  I mean, we went out to restaurants to eat, went to the centre of the city to shop.   Even though it was snowing, we had to go out to spend some time with him.  In the mornings we went in the hospital so that the doctors could examine him.  He used to take some tablets to get stronger.  Eventually the operation was to be done on Friday and then they just said that they were not ready yet and that they had to do it on Monday.

Christos was so afraid.  I could see him suffer waiting for this operation.  Sometimes, when we stayed in, he used to take his kid’s photos and put them in front of him.  He then listened to music and he was singing to them.  He was tapping his hand on the table and his foot on the floor.  (Oh my God, this is so hard…)  I was telling him “Hey, get up to dance as well…”  He just smiled and I smiled at him. 

Until Saturday morning he was ok.  He was feeling too weak though but he talked to us, we sat together to eat, we made jokes…  We went to the hospital to sign papers…

Again, the same procedure; he had to sign a document saying that the hospital was not responsible for his death as the percentage of living was only 50%.  They explained the whole thing.  How the operation was going to be done, from where they would start cutting, what things they were to put on him and so on.  They even ordered 17 bottles of blood as he was going to lose a lot and they were afraid of that too much.  They even said that there was a chance of opening him and closing him again without touching as his veins and tumour were all together, his organs were all spread in the belly, one of his kidneys was at the back of his body and so on.  He was listening to every word, he asked questions, and he even said that he didn’t like the pipe that was going to be in his neck going down to his stomach…  His hands were shaking, a tear dropped and then another.  His wife on top of him was watching and crying like crazy…  Me… I had to give them strength.  “Go on, sign it” I said “and everything will be fine, don’t worry.  God will watch out for you.”  We went back to the hotel, all three in tears.  At lunch time, we went back again to take some blood and that’s when he found out that the next day he had to put blood.  He disliked that so much.  I knew 3 days before about the blood but I never told him because I knew his reaction. 

 At night time, he was ok.  We talked, I even taped him on my mobile saying about the pipe again that he didn’t like and I told him that he wouldn’t understand anything because he was going to be sleeping.  He laughed and said that he still didn’t like that.  He then remembered my dad.  My dad never came to Germany as he is afraid of planes.  We begged him to come but he’s 57 years old and never traveled with planes, he couldn’t do it.  Christos phoned my dad every now and then, I sent him messages every day saying what was going on.  But that night, he cried saying that we wanted his dad to be near him, he said “I wish my dad was here!” and then said “I wish my dad was here!”  He said that twice…  He then remembered my grandfather who died 2 years ago.  He start crying and telling stories about him.  Then he remembered his friends in Cyprus and the delicious food that they were cooking for him.  The irony is that his friend Costas and his wife were coming to Germany to be with him on the day of the operation.  They were coming Sunday at lunch time… but my brother didn’t know anything as we left it to be a surprise!

At night time, he couldn’t sleep even though he had his sleeping pill.  (He had sleeping pills since he was doing chemo as he couldn’t sleep at night.  He always used to wake up just to see that he was alive.  He knew he was going to die in his sleep, he had the feeling!)  In the morning he was terrible.  Couldn’t open his eyes, his face got weird again just like the first time when we found out about the tumour, he didn’t want to get up, he was falling asleep and when waking up he was only saying that he was afraid.  We all thought that he was so tired of not being able to sleep the previous night and that’s why he wouldn’t get up.  Slowly, slowly we brought him to the hospital and they put him two bottles of blood.  He was sleeping during the procedure.  We went back to the hospital just to let him rest in his room.  He never ate anything that day.  We made him some toasts but his stomach was all upside down.  He was only drinking coke, his favourite drink which was not good for his health but again, he liked it and couldn’t give up on that.  My brother George and I went to sleep as we were a bit tired.

At night time Christos wasn’t well.  I called the doctor and she told us to bring some medicine from the hospital and that he would feel better.  Indeed, he did feel better.  He sat on the bed for some time, he drank his coke again and we brought him some strawberries to eat.  He ate 6 or 7.  That was his food all day long.  He then threw up but it did him good because he wasn’t feeling discomfort anymore.  After an hour, he was feeling some weird pains in his belly.  He told me so and I said “Try to control it.  Another 2 days and all the pain will go away and you will be like before.  Come on, be strong and tomorrow we will take some pictures of you with your belly out so that we can show everybody your 9months pregnancy.  After the operation we will take some more to show everybody that you made twins…..”  We were laughing…  He then went to “sleep”.

I couldn’t sleep.  It was the only night I stayed till 2 in the morning awake, stressed as if something was going to happen.  My brother George used to sleep every night at those hours so we sat outside the bedrooms chatting with some other friends that we met there.  I went in bed; I read my bible for half an hour and then closed my eyes at 2.30.  George entered the room and said that Christos was awake and couldn’t sleep, he was in pain.  I told him that it was from stress and that everything was going to be fine the next morning.  At 2.45 o’clock in the morning my sister in law jumped in our room shouting.  I got up so quickly just to go and find my brother in a state of shock.  His hands were white and had the shape of a fist and his face… his eyes were wide open and his teeth were joined together, as if he was putting all his strength on something.  His eyes were not moving, he didn’t move, his hands closed…  My mum’s hand was in his mouth as she thought that he ate his tongue.  He was biting her!

I immediately called the doctors.  They brought the ambulance and we went to the hospital.  Our doctor, Dr Zamboglou was waiting for us.  It was 4 o’clock .  We were delayed in transferring Christos to the hospital as it was a bit difficult.  At a certain point, I couldn’t’ breathe properly.  I knew the time came for him to leave us.  I went out to have some fresh air and begged God to leave Christos with us.  I phoned to some churches in the Holy Land to pray for him.

I asked my mum what happened.  She said that as they were sleeping, she heard him saying “I’m scared, I’m scared” and my mum and his wife went on his side.  My mum was making massage on his shoulders as he was in pain and his wife was kissing him and hugging him so that he would feel better.  Then he turned to my mum and said “Another 45 minutes…Where is dad, George and Sophie…?”  Those were his last words and then it happened.

At 5 o’clock the doctor came out of the room.  He told us that they took 1 to 11/2 litres of water out of his belly so that he could feel better but he was in comma and he couldn’t understand anything.  Then the doctor continued to say that the metastasis that was made to the lungs was pushing the heart down and the tumour in the belly was pushing the heart up…We were waiting for a miracle to happen.  “Probably he will die” the doctor said.  My mum never heard that.  We moved him in another room and we stayed there with him.  At 6 I phoned my husband in Cyprus to go and find my dad, to be with him when the bad news will come.  So did some friends of my brother George.  I phoned his friend Costas not to come to Germany .  He was shocked as he never expected it. 

My brother’s eyes were open.  He was breathing with his mouth.  His legs were cold.  His hands were freezing but my mum made them warm.  At one point he start “snoring”.  My mum begged me to go and find the doctors because she thought that he was going to choke.  I knew…  At a point, the surgeon (who was a woman; she was the one to operate my brother) she came and told us that my brother was dying…  My mum fainted.  She couldn’t believe her ears.  She never knew anyway…

I was praying on my brother, I was talking to him; I was telling him that he should get up and phone his son as he had his 6^th birthday on that day.  “Hey, get up” I said, “your son is waiting for your phone call.  You have to tell him Happy Birthday…”  His eyes were looking all around and then he start crying…  I could see the tear.  I wiped it once, twice, three times…  He then took a big breath.  My mum went to find the doctors.  She never saw him die.  I shouted “Don’t leave us please, you have nobody up there, your whole family is here, stay with us, stay…Your friend Costas is coming to see you now with his wife and he’s bringing you the latest events of the sports and some Cypriot food…”  but he left.  He was warm, I was kissing him and hugging him and he was still warm. 

 I phoned my husband and send a message to my friends and I phoned Costas (He was already on the plane as he was begging God to come and find him alive).  My dad was a mess, my friends were a mess, all our friends in Cyprus found out at once, our friends in England , our relatives from Italy which came at once in Cyprus , his friend in England found out and came straight away with another friend whom we never saw for 15 years…  We were a mess, all the patients that met Christos were crying.  I cried so much and I’m still crying because I know that I will never see my brother again and this is so hard.

I see him in every corner of my house, I can hear him calling me, and I wait for his phone call as he phoned me every day just to hear my voice or to ask me all different questions…  I can’t believe that my brother is dead.  I think that I will see him again and I convince myself about that.  It’s not true, it can’t be happening to me…  Why didn’t God get an old man, an old woman who made their life?  Why didn’t he get my grandmother who’s 93 years old?  We wouldn’t suffer so much!  Doesn’t He know that my brother has two kids?!! 

Our kids left now.  They went back to their mother’s country.  We lost the whole family!  Of course we will see the kids and Mandy every summer time and every time they can come over to see us and we can go over as well, but it will never be the same.  My brother will never be with me again, he will never shout at me again, he will never phone me to tell me that he wants to eat a sandwich from this place that we used to buy them, I will never see him on the beach again and I will never see him hugging my little boy and saying all this nice words to him.  I LOST MY BROTHER…AND I WON’T EVER SEE HIM AGAIN (!?!)

 Sorry it took me so much time to write this story but I wanted to tell everybody our story and also that you must never give up just like my brother did.  You must fight till the end and know that being afraid will only do you harm.  Believe me on that because as a family we believe that Christos died out of fear…

 If you ever need anything to ask, I am able to answer you.  I was beside my brother in every step of this disease so I have learned a lot. 

 Sincerely,

 Sophie

from Cyprus

www.dsrct.com     desmoplastic small round cell tumor