Wednesday, December 31, 2008

Silvester's day

Finally, again in contact with the world, Today started our connection with the Web, and now I can easily write down my thoughts in the blog from home. In good time the light from the Internet come into our house, giving me a chance to say good bye from this year to all of you and desire the best 2009. It is funny how we get use with this new toys, there was a time when to receive a normal letter in my home, p.e. from the Algarve, from some family, it was a reason to celebrate, few years later it was the time to the phone with wires arrived in my home, Though already more than one hundred years after Bell did his first experiences, it was now, that my family and friends could become closer to us and enjoy the biggest breakthrough from the last century. Amazing how come from a simple cable could pass all our conversations, Hundreds km of distance turned in a short distance between a mouth and a ear. But, in a flash the Internet come and shape a new Era straight pasted all that achievements to the bin, Now we only want to speak by the skype or messenger, nothing but not only a connection with image is tolerated by us :) Also the Net able me to know what is going on in Portugal, even if I am not sure if always I want to know and be update.

By the Way, Mon Amis, Soon We will be in Portugal, It is right in 11th of January I will arrived in the Algarve, And I would love to see all my friends. I should be at 14th in the South of Lisbon and I would enjoy to see the friends, some I have not seeing for a long time. It would be great to be in touch again, And in 16th I might be in Lisbon, I was thinking to have a dinner or a coffee with the friends that can come to join me, furthermore 17th it will be my birthday, so in that way Friday in night we can make already a toast and celebrate one more year in my curriculum, if you do not mind I will have it a juice. I cannot wait to see the Atlantic and Lisbon after few years and Olivia to have her first contact with her own country. Anyway before that I will need to visit one more time the Chemotherapy suite this Monday.

The end of the year it has been a relaxing time, and also a period to enjoy the life, Only yesterday I went for the last scanning of the year, it was a PET Scan-DOTA-TATE, a sophisticated scan that tries to show all the Neuroendocrines, Now is only missing another one to be carry out in the next year, this is a sister of the last one, that calls PET Scan-DOTA-DATE, and is a scan still in the trial process, and in connection with the one I did yesterday expects to bring to the light all the tumours lesions provoked by the degeneration of hormones.

To finish the year I only want to honour a small music to my Love Justyna,

#Justyne, you are my heroine,
Justyne, you are my Insulin,
Justyne, you are my sunshine
With you I will be fine#

Friday, December 26, 2008

The greatest gift

The Christmas and End of the year brought us peace and the pleasure of enjoying the smallest things, company of each other, food, discover the undiscovered. This Christmas year we did not share with the family, something that is happening with me for already three years in a row, but we had the pleasure of been with lovely friends. We hope you all enjoy the season.

Tuesday, December 23, 2008

Christmas day at 23th of December


And the Big Tuesday come, I woke up very nervous, introspective and fearing the worst, It was not easy to maintain all the positive spirit that I showed in the last days. Though I was not 100% positive, I was calm enough, calm from somebody that is waiting for everything, even if my tumor decided to increase size or something like that....
I could postponed this day forever, Just live in the hope and do not face the reality, if possible it was.

Anyway, I went to the Royal Free early to move out from home, as at home without doing nothing it was driving me mad. Already in the Hospital in the waiting room the feeling of not having anything under my feet increase, Actually I think in that waiting room Oliwka was the only person that did not show any signs of tension, probably already guessing what was coming next. So much I would like to be a baby as well.

At the time, I was called to the appointment, The doctor it was not Dr Fusai but some other from his team , what also upset me in the beginning, First of all she told me that all the doctors discussed my case, Dr, Caplin, Dr Tim Meyer and Dr Fusai and they decided that the best to me would be to do two more cycles of Chemotherapy (6 overall) and after look again. Just like that I was disappointed, but only after when I asked about the results from the scanning I have had last week, essentially the CT scan, the good news arrived. She confirmed that my tumor shrunk 20% so far, what is brilliant news. In that way, as my body is reacting so well to the chemotherapy is worth to do more chemo and in March come to see again the Operator and then go ahead for the operation. Later in the appointment I was glad, as doctor Fusai pop in the room to say hello to us and confirm the great news, Not always the people react so good to the treatment as me, So lets carry on with some more Chemo. Also they mentioned that there is other chances of treatment in the future, It could also happen instead of surgery some radiotherapy, this would be with some injections straight in the target, in the tumor in the Liver. For me does not matter the methodology of treatment or either the time will take us, only matter that the tumor now shrunk :) Finally the doctor ask us to relax and wished us a merry Christmas.

We were so happy with the results, the shadow of a dark Christmas just disappeared and now we just want to enjoy the days, Some kg have been taken from my shoulders. For now lets enjoy.

I would like to send lots of love to everybody and wish peace for everyone in this small World

How to relax?

Regarding to 22th of December

Monday, In the eves of the Big Tuesday, very few I can do but wait and try to relax, keeping calm and trying and trying to be positive, even, if I am knowing there is a possibility to come out from this appointment with my chances of lasting until next Christmas very much reduced. But, to be honest I am positive and have a big hope of getting a safe port.

I remember to past through this nervous morning before, either when I was approaching some important test in the school, or either to an interview for a job. Now I realize how needless is to spend energies either with that small things, when the life is not in check is it now.


Saturday, December 20, 2008

Running all the time

I still do not have Internet at home, Just get the occasion now to send a big kisses to everybody and hope I still in contact until Christmas, In case that not get in touch until there, Just a big kiss and hope all of you as a great season. It is a good moment to relax and for a while just think about the best things in life, the love and respect for everybody.
Today I am trying to move the last things to the new house, and it still a lot of stuff to transport. The friends are again helping, Mike, Veena, Rafi and Kaska are giving their hands to the job. I am more in the background, to save my back. Because of that, Justyna needs to use all the time all her four hands, counting with the two that I am not using. She never stops.
See you soon

Countdown for the Big Tuesday

Reporting of 18th December

I become so professional about my commitments related with the disease, that I always managing to be very early in the appointments. Therefore, today I was suppose to be in the Nuclear department of the UCLH to have a FDG PET scan at 9.00 am, but it past only few minutes from 8.00 and I was already there, In good time I come, because all the initialisation for this sophisticated scanning could also started earlier.

First of all they gave me an injection of pure sugars or glucose with some radiation, and let me to rest for an hour, time enough to this compost do the desired effect in my cells. The idea is after to look for the hormones and tissues that are sick, then this ones, because they are sick and weak will absorb all the sugars, now injected, Is in this sugars where they will go to take their energy. After the sugars spread around the body, I was invited to go to this big machine in cylindrical and tunnel shape, and then I past from one extreme to the other one for an another hour, laying down, while the computer is taking pictures of all this cells with problems.

Thus, until the appointment with Dr Fusai next Tuesday, I am free, No more tests or scanning. To celebrate nothing better than a good afternoon of sleep, Also Olywka did the same.

First Stop

Reporting of 17 of December 2008

As planned, 17 of December, In the first stop we arrived. 17 is not only the date of my anniversary in the next month but was also the date of a big day in my life. I went to the Royal Free Hospital, with the sugars high, consequence of all disturbance in my night, nothing to eat for up to 12 hours. The fasting is something that my body cannot cope anymore. Nowadays due of my hormones I become like a flower in a green house, very delicate.

Although the high sugars, we woke up again with a very good spirit, ready to go, and ready for everything, Firstly a visit to the first floor to do a special blood test to check the behave of some of my hormones, After a short trip to the ground floor to be set for the most important images, to the CT scanning (Computer tomography scanning). Long wait for my turn, but meanwhile I drunk a special mix of a colourful liquid, this to highlight a contrast in the scanning. There I used the last half hour to do some meditation, also I initiated visualization of my Liver, I tried to let him come down, and I had also some particular words with him. There in the waiting room we can see people with all sorts of lucky, there was a young woman that specially impressed me, she looked completely lost, laid down in the bed, she was avoiding any contact with the exterior, she had a teddy bear on the top of her head to hide herself from us, the surrounding, And whenever she was asked for anything she could not speak, so nervous and scare she was. Nevertheless, there was other detail that strongly marked that picture, a nurse that was close to this patient, and I will not forget the image, she was all the time passing her tenderness hands through the young lady’s face in a supreme gesture of love and humanity. I guess that woman in the bed was confronted with something terrible in the last few hours.
From what she was living and essential from my experience now, I completely understand the meaning of life and live, Before sometimes I barely could understand why for example some people with some terrible problems such as palsy, or other even worst could live and sometimes enjoying the life, was a concept very difficult for me to understand. But, when I found my life slipping under my feet I realise the meaning of one more hour or year in my life. Even with all the problems, healthy consequences of diabetes and other things that I still do not know, but will face very soon, I can exchange the quality of life for an extension, or quantity of life. Of course I am not considering a person with a persistent big pain. I think the same thing can be transported to any body with severe problems, All the people believe and hope that the future can bring better things.

Is coming more my friends.


Reporting of 16th of December 2008

Definitely if my life in long term is now dependent from the Cancer, that I will difficult get rid off, in the short term it might be the sugars levels the rulers, and this sugars ones will depend from elsewhere, that does not need to be sweet, principally if I am relax and comfort or not. So, yesterday, marked our arriving in the new place, the moving in it was not smoothly, as all our life as showed to the evidence. Without any miserliness, nothing is easy and nothing is guaranteed. The only guarantee is the friendship of our super friends. Again they are everywhere, do not let us have two steps in false. So many times I wanted to gave up with the fight or just stop all and for a while falling down with an unstoppable crying, Either Justyna, sometimes she cannot hide from me, this, only when she is almost knocked down, But it was in this moments that the friends were determinant to made this moments do not prolong for too long. Is like a boat surviving in a temps to almost a sure sunk. Sunday and Monday we found in our new place, so much happiness that we have been missing. Suddenly the sugars levels also come to better scores, confirming the correlation in between the stability and good atmosphere of our house and the behave of my sugars levels (another axiom did by Helder).

We just have been enjoying with Olywka, for the first time we danced altogether in the bedroom some Christmas hits, Good that Oly cannot understand the silly behave of her clumsy father. It is another Helder, completely different from that one has been crossing the painful road of the Chemotherapy, for now with a lot of energy and love for life. If the cancer can by fight by the environment surrounded, family and friends, then to find myself cure would be just a matter of time.

Is coming more

Sunday, December 14, 2008

Happy Sunday

Ola Bom Dia,

I am really exited today, This morning we are moving to our new house, The essential things are already there, Now we are going with Shuby and Thom to drop some other things and after start some cleaning and tide up. The process will be long but I cannot wait to have our space, we could enjoy and relax as a family. I will have a problem for a few days I cannot write here in my blog as I still do not have Internet connection at home. But soon I will be in touch.

At the time I am writing this blog, the unbelievable happen, I received a message in my Mobile phone from the UCL Hospital (University College of London) regarding to a PET Scanning, This exam is now booked for 18 thy of December. On time to the operator, Dr. Fusai looked until 23th of December. It was good news, because in the last appointment with Dr Caplin, he wanted to do only the exam after six sessions of chemotherapy. This test is something very new, still in the trial but apparently has been showing very good results.

Lovely Sunday for everybody.

Saturday, December 13, 2008

Polish steppe


After two days that I only slept and slept, only now I feel slightly better in order to put out some ideas. Yesterday it was not a brilliant day, the appointment with Dr. Caplin frustrated me, as he mentioned that I should have at least six chemotherapy session before any operation instead of three or four as have been told me before and I was prepared. So, after the appointment I was devastated again, also because the sugars still do not calm down, then I am having short nights sleep and feeling tired all the time.
But, this afternoon I am better, Without my help Justyna was moving a lot of stuff for the new house with the help of Shuby and Mike.

Thursday, December 11, 2008

More news tomorrow

The day it was not so bright as it looks in the picture, Today I slept again few hours, Resting and trying to take bon appetite of all drugs that I have had. The image represents the way I will do it tomorrow, the Master Route to the Royal Free Hospital, I will go to see the head of the Oncologists, Dr. Caplin. There is not any scanning yet to discuss but this doctor always brought me some calm and support, so we hope to find that tomorrow again.

big kiss

Wednesday, December 10, 2008

So cold outside

The news are almost the same, this means no bad news. Just I have been with a crises of hiccups, something that appears suddenly and keeps for almost a hour and also goes away when not expected. In afternoon after some rest we all went to take some sun shine in a pond nearby Shuby's house, We spread some bread through the ducks and birds that did came around. The cold that started to frozen some parts of the small pond gave even more beauty to the landscape.

Tuesday, December 9, 2008

Whiter would be impossible


As expected the night it was hard to get rid off of them self, Without sleep the nights are always long. I had only couple of hours sleep, only recovered with some other naps before the lunch and in the afternoon. Not only I felt sick, also the sugars raised and probably made more weak. Nevertheless, I am not knocked down yet, I hope in a matter of days I will be again with all my strengths. For sure I was not in my days, but in compensation Olywka was so much talkative today, unstoppable in her creation of new sounds, even if faraway from been an intelligible words.

Monday, December 8, 2008

Chemotherapy-Session 4 With love


As I promised I woke up full of energy, ready for another battle in the Royal Free Hospital, It was a long day, I was there at 10 AM and left, when my friend Veena came to pick me up at 10 PM. The morning I had the visit of Jane, lovely to update some of our chats, There was only around two hours that I was alone and bored after Jane needed to leave to have a meeting, But, after Justyna came to the ward to bring me and show me Olywka, This it was just for a few minutes, as it is not advised babies to be in Hospital, in order to not catch up any flu. In the quick visit from Justyna, brought me also a souvenir, two beautiful books, passing in review the decade of 40's and 50's with pictures and a small notes about the events, So it was exactly what I needed to distract myself and take me away from the lethargy that was immersed. And this it was also a gift for our first weeding anniversary that has been completed today. I was so stress in the morning that it was Justyna who remembered about the special day that we were living. As my love said, this time will be remembered as How could the love between us kept us together and it is making the fight more easy and the dream tangible.

After become 4.00PM and also Pajo and John arrived then the last hours until 10 PM went very fast and my mood just changed 180 degrees, I was with such a good spirit enjoying the impossible. Justyna and Olywka joined us after 6pm when all the other patients left the ward.

Now back to Shuby's house, we just could not believe, Shuby and Thom prepared such a great reception, For us was waiting a table royally set and when the starters and meals started to come we just could not believe, The feeling of feel special from a special friends is difficult to describe. I was feeling sick but after I just forgot about that. It was a hard day that become so much easy with all the friends that been around since morning until the evening.

Now is time to rest

Sunday, December 7, 2008

Wait, when necessary


There we are, in the eve of another session, that can take me to the doors of the operation, but I am trying to take one day at a time, otherwise all looks so long. Today I am been feeling very tired, but I promise tomorrow I will wake up with all my energies recharged and ready to take it easy the 10 hours session. So, I am planning to have an early night sleep.
Until tomorrow

Saturday, December 6, 2008

Polish angels

A long day we had left behind, At afternoon we went to an already traditional Christmas lunch in Maria's' house, divine Paellas and other sort of food on the table. And of course so many sweaty sweets tempting me and I am sorry I could not resist to pick up some from the Justynas' plate. But of course the occasion was great to review a lot of friends that we have not seen for a long time, Funny that I enjoy very much to have people and friends around nevertheless I do not feel keen on to too much interact and have an active participation in the chats, nowadays I prefer to listen or just be there. Overall in the last couple of days I have been feeling very sad, that ended up in the night with a depression taking part of brain, something that I could not avoid. Is difficult to explain why, fortunately as I said to Justyna, it is not due to any pain, because have been feeling pretty good, I think it is just about the pressure that I am start to go through with another unpleasant chemotherapy session on the way, determinants scanning on the sight and of course the sacred word from the surgeon almost to be known. But, also to the sorry that I am committed to live probably forever regarding to the people that had and been suffering with Cancer. Some examples that I get know in my way I cannot turn my back or pretending that it is not my problem. I feel the Cancer and people fighting against must be part always of my thoughts.

Anyway, I must understand that fact does not mean that I cannot become happy again. I still do not know how I will do it, probably Olywka will teach me.
But for now I just want to cry and I cannot do anything against that, At least what make more calm is to know that to fell more comfortable I just need to go to the bedroom and look for my angels sleeping.

Good night sleep

Hospital's view


Back again this morning to the normal check ups before the next chemotherapy session, Apparently the blood tests gave again green light for Monday's session. In the appointment today with Dr Tim Meyer which was sided by two other oncologist, they made me feeling almost as a case study, they siege me with questions about side effects, they were surprise by the low side effects after my sessions, already long, so far three cycles of chemotherapy. He also examined my tummy, around Liver and Pancreas, and all look smooth and normal. So, now we hope the scanning booked for 17 of December showed that my Liver has had been less tolerating for the drugs than myself as human being (expect Liver)

Before I had my weight weighted and incredible! I put on weight a fantastic 200g, I am now with 63 Kg. I think this week Olywka gain more grams than me :( But at least the weight increased
Afterwards we went to our new flat, it was great to see my new nest, It is a place that need some new decoration, but it has already its own sole. Boring to go to the bureaucratic things, agreeing with a lady that did all the inventory of the house, look for all small details. At the same time deal with George, a nice gentleman who is responsible for all the maintenance of the house. We hope to have some stuff repaired next week, as some walls repainted to deleted the time past by. Nevertheless we decided to not sleep there because it was freezing inside, the heaters did not warm enough to guaranty a good first night in our place.

Thus, we decide to have another gypsy experience and we went for a couple of days to Shuby's house, until they repair this few things.

great weekend

Thursday, December 4, 2008

Larger family


The life of my family it looks more as a Gypsy family because of our nomadic nature, with all the respect and honour for the Romany community. Today it had another chapter, we went back for our house, or better Rob and Sandras' house. It was great also to smell our house and see our friends again. But, for short time, as tomorrow we might start to move to the new accommodation.

This week I took it as a holidays, such was the relaxing time and great to see sister and family. Anyway, they left this morning, Shuby and Thom took them to the airport. And our life here in London is just about also to take off to other dimension. Thus, tomorrow I will see the Oncologist to discuss if I am well to be submitted to another chemotherapy cycle already this Monday, Meanwhile this weekend we will move to our new and permanent place.

I hope next week I will be already settled in my new bedroom to take smoothly the side effects, essentially the tiredness. And after all friends are welcome to visit us, there will be a spare bed awaiting for you.


Wednesday, December 3, 2008

Ruled by a dog, why not

Well, and today it will come to the end the staying of my sister, Paulo and the magnificent Dani, It was an indescribable week, with so much time for our self and at the same time see Dani and Oly together it was another dream that came through. Hopefully we will get more moments like that in the future. Helping to the harmony of this weekend it was the fact to see my sister after almost an year and to view Daniel for the first time, but also the big reason for our comfort was the atmosphere that we found in Shuby's house and the care from all her family, from Thomas, Rayan to Taz, the lovely dog. Taz was a dog abandoned that was rescued by Shuby when he was five years old, luckily Taze in spite of the sadness in its life at least now is a very happy dog that is loved by its owners, but we can feel that because of all the troubles he had it is hard to get is total confidence, Firstly he studies each person and only after opens its heart. He is a superior example of the magnanimity Canine, As Mario de Miranda states to err is human to forgive is canine.
In this way we spent all day at home with all the pleasure, surrounded by kids and love, what else we could desire? I cannot think about any other thing. The warmth indoors balanced the freezing outdoors

Also in the evening I had the visit from a friend I have not seen for a few years, Luis Ganhao, it was lovely from him to came and then know more about how he is and other friends back in Portugal, that I lost track. Thank you for your support friend.



Today, we had an appointment with the surgeon that has been booked quite a long time ago, when I started the chemotherapy. And in that time we thought today I would have been already scanned and it could be decided today if I can go straight away to the operation in the Liver or not, But the things has been delayed and I still have another chemo cycle this Monday and the important CT scanning will happen only at 17 th of December. Even though the appointment with Mr Fusai it went more positive than we expected, as when I got in his room I thought I will come without nothing because there was nothing to discuss, but in the end the doctor booked me already for an octreotide scanning, the one that is carry out in the Nuclear department and shows all the infections made by the Neurodocrine. Thus, next time when I will see Mr Fusai in 23rd of December He will have all the information in his hands to decide the next stage. What made us, special Justyna very happy with this appointment it was the fact that he mentioned again that he was astonished with my remarkable recovery from the first surgery and with the way I presented without any mark of the chemotherapy in my face or body. additionally he mentioned several times about a very likely operation in the end of this process. So, lets keep fingers cross and wait for Christmas eve eve day.

Afterwards we went back to a coffee shop where my sister was waiting for us and together we went back to Shuby's house, In the way I was just relaxing and enjoy all the good thoughts, and the arrive at house brought even more happiness with the good atmosphere that we can feel inside the Shubys house. The dinner it was again a magical moment, Shubys prepared a fantastic Indian food. Veena also come to join us and enlarge the family around the table :) For dessert Thomas introduced me to something that I never seen and heard, the Chocolate sugar free, Cho for a diabetic. I was so glad. The time just flew with a chat in between friends and overall with the communication that we tried to have with Olywka and with Daniel.

Monday, December 1, 2008

Talented friend


Great to woke up this morning with such a sun shine, a light that I have not seen for a weeks, for that also helped the late hours that I woke up. After, there was only time for a quick breakfast and lunch and straight get on the way to the Royal Free Hospital. The doctors came out with the conclusion that I am not allergic to any of the substances tested, this means that the big suspicious still the penicillin for my allergy at the time of the operation, The next step is to test my body to this drug.

Evening we had a great dinner with all the family and the night reserved a unique moment when me, Justyna and baby were laying down in the bed and just enjoy a dream moment of Rayne playing in the keyboards. Olywka was just astonished as us with his masterpieces composed by him. Not often we can see such a talent in a lovely and friendly boy.