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Sunday, May 31, 2009

Waste of talent

Again I have the sensation that the things are improving, The pain in the Liver is much smaller, now is more common to feel some hitching in the skin, I presume the Mr Liver is growing well. The morning I spent all the time in bed getting more rest. Only in the afternoon we went to the park, It was necessary to lay down in the shade because the Sun was very hot. Back home I was in a very good mood, A spirit that I miss in myself. But when I am painless it is possible to feel samples of Helder. And the Sun brings all the positive thoughts to my mind. I cannot wait for Portugal, also for the mum's food, I hope I would put some weight on, at the moment I am in the minimums, before operation I had 65.5 Kg and now I am with 60.5 Kg So slowly I hope to do some progress in that area. As you see down I look like Iggy pop performing to Olivia, with the only thing separating us is my talentless and the fact of I still look thicker.


Saturday, May 30, 2009

Olivia in meditation

Again today we could meet with our friends Shubhi, Tom, Rayna and Veena. The day was very warm either because of their personalities and for the weather, We just relax outside, having some ready meals and salads, the typical Summer routine, But what a routine :)

I felt with more energies today, I guess also the friends does the difference. There was a time to watch the FA cup final, to sleep under the trees, Olivia to meditate, to plant a tree to celebrate Shubhi's birthday and our friendship. Now we are all exhausted, time to go to bed.


Friday, May 29, 2009

Theory of conspiration

Today it was the last time I saw the oncologists before holidays, I met a doctor from Tim Meyer team, as himself was in holidays, He also deserves :) This is really liking ass if he would checked this page. Thus, the doctor I saw was not so much inside my case, but was very nice. For her the report about the biopsy shows very optimistic, we all should be very pleased. Regarding to the pain I have when I do deep breaths she told me to do not worry too much as a lot of healing still goes on inside and outside the wound. But if it gets worst I should call their team at any time.
More to come only after the break, In August I will have a scanning and see the surgeon and the oncologist to see the progress.

The weather suddenly improved today, threatening us with a lovely weekend. To start in the best way I decided to cut my hair, Adriano had the machine and scissors to do the job.

In the waiting room for the doctor my brain wondered around the long journey, that most of the time we past in Hospitals since all started, I am not too much advocate of the conspiracy theories but it looks plausible that the system found or told me that I had a terrible cancer that needed to be tackled and treated as soon as possible but in fact was not real, this just to feed all the bureaucracy and medical system and the powerful drugs companies. So, did Man ever been in the Moon? or is it Elvis Presley alive? now, did exist the Neuroendocrine in the Pancreas and Liver's Helder?

Am I with Paranoia? Possible yes :)

Thursday, May 28, 2009

Life as a dog


It could be worst, it is true. It is a sentence that I thought would be a monopoly of the Portuguese but apparently is worldwide used. If somebody have an accident and lose any limb straight somebody would say at least he or she have not died, If somebody dies again someone says at least he has already lived enough.If a dog is homeless at least it is free.

Even in most extreme situations the people tend to find some peace of mind just thinking how much suffering has been saved.
This days I chose to stay at home, to practicing relaxation and to avoid some cold that I feel almost around. Tomorrow I will go out, as I need to see the oncologist. After we all are in the weekend and the weather will help according to the predictions.

Wednesday, May 27, 2009

In the night of London

The pain has slightly decreased and moved from the thorax right inside close to the diaphragm to a place downer. It sounds that should be the pressure of the new sir Liver. Anyway Friday I will see the oncologist, He can give more clues about that. Meanwhile tonight I did my first appearance in the Pub after operation, to watch the champions league final with Mike and Adriano, The game it was far from been brilliant. I admit the pubs with fizzy water it has other seduction and glamour something that loses with beer :) OK, you do not need to agree.

The best to say is we are going back to Portugal again, we booked our holidays for that small place in the shore planted. We will go in 30th of June until 5th of August, Olivia is already very happy with idea of going to the beach and play with her cousin and me to see you all.

Tuesday, May 26, 2009

From park to home

Unexpectedly today I needed to keep myself at home, resting, Since last night I have got a pain that arose and still take me out a lot of energies. The pain is in the thorax, right inside, Probably is the effects of the Liver recovering. The pain is more intense whenever I need to do a deep breath. I hope this will be a matter of days, but I might call tomorrow to the hospital to ask about that. Somebody was teeling there is no lunch for free :)

Monday, May 25, 2009

Home in the park

You all are already thinking does this guys moved to the park, they do not have any other thing to do than to not do nothing, For me perhaps it would applies but not to Justyna, to pass a day or afternoon there it means a big logistic task almost if we were a gypsy family. There is food to be cooked and transported to feed us, there are blanket and pillows that I need for my siesta and others big and small props.

Not only I am with more energies but also the sugars are getting the point of stabilization, I can go for a dessert, a sweet snack without a big problem.




Sunday, May 24, 2009

Smell of holidays









Who did say that there is not one day similar to other one, He or She was completely wrong as I just finished a day copy/past from the one before. The sun was even more bright, the park looked like a beach with the waves bursting somewhere very faraway that I could not listen. My eyes in the end of the day were very tired and Justyna's skin burnt, anticipating already the holidays coming on in Portugal :)

Saturday, May 23, 2009

World in each life

A day to remember, not for nothing in special but just for the trivial things of going to a park, having a sandwich, play hide and seek with Olivia, Such a joy. The portrait were flowered with a beautiful guide dog that was going around with a friendly old women, There was also a man that was playing guitar very near us that we chat with him, his mum was French father German but he grow up in Canada, I suppose he had a long story of life, as he been few years in Colombia, Argentina and Brazil. Also not distant there was two guys and woman who were speaking while drinking even more beers. There was plenty of children playing football and going around within their first bicycle. People were reading. Such a pleasure just lay in grass and close eyes and only listen the background noise.




Friday, May 22, 2009

Team work

Today I promise I will do this page smaller. The day was in same way very gratifying, We went to the UCL Hospital to see our friend Ian Small, as he was there for his regular blood transfusion, Great to see that he looked very well and with a lot of energy. We met each other in first days I arrived in the Hospital, He gave me a lot of support when I needed.


Tomorrow here starts a long weekend and the weather will be good, We are planning to go for a park.

video

Thursday, May 21, 2009

Catharses


The day that I went to the Hospital to be set for the second operation in opposition to the days before I was very thoughtful. Almost a year went by since I laid down in the mattress to expose for an innocent scanning, that came to transform all my life, after there was not any minute or second that could be the same anymore. I knew or I guess that I might have something hidden in the belly attending to the symptoms, but never such a surprise. When the operator of the scans started to call a doctor, after another one, and another technician, I either started also to frozen, and thinking what is going on, my God, and a doctor decided to have a little conversation trying to relax me but rather helped me, just soared even more the panic, She asked where I was from, and if was thinking one day to go back to Portugal, I imagined as she was asking me what would be my last wishes. This was the Time Zero. After in a few days we saw he mountain enlarging and become an Everest, I started to gradually get used with the news until the point when was said to me something that Justyna already knew, The doctors spread that my chances of live would not go further than 6 months, The operation was needles, as this kind of tumour always wins and they did not wanted to me suffer with something that will not improve my quality of life and not extend significantly my life line. Furthermore it was the big surgery that was required that might kill me. Even I was desperately left alone, the chemotherapy what was my only hope was also blown by the doctors. In the time the simple exchange of shift between nurses were always such a psychological pain, it happen two times in a day, they came around to hand over the patient to the next nurse in charge, and I heard often the comments of pity between them regarding to me. It is impossible to describe that days.

Thus run was a proof how we can resist to the worst atmosphere, Honestly before when I was free of Cancer also I was thinking I would never cope to live in the brink of the death, But we do, overall when we have a new born baby at house. But it is good that the run for the next step, surgery to the Liver was close, because now I was very tired of all.

I am happy for all of you as well, because after been diagnosed with Cancer you will have by the theory of probability less chances to have the same type of Cancer as me. They say only 2% of the Cancers are the same kind as mine and even more rare for somebody under 40 years old. Thus I hope I did easier the life for you in the future :)

Around 5 o'clock of 16th of May we arrived in the Royal Free Hospital, I waited for the doctor to speak with him, It came a doctor from Dr Fusai team, the explanation was above our expectations, in fact I needed that. I signed the consent form. There in the form was highlighted the aim of the operation -to cure the cancer, so happy I was with that small thing. He explained the plan A, the Liver should be cut in 60% to remove the tumours showed in the scans, but we should be aware that there is other plans, in the case that they would find something else in the Liver or in other part, This would not be good news but there was that risk.

Afterwards, I faced the bureaucracy side, I asked to a person that was responsible for the allocations of beds to the patients, incredible he refused to tell me because he thought I was not the patient, I explained I was the Helder, only after he made sure who I was he explained me the situation. He did not believe me because I looked too well :)

Before I came to my bedroom in the Hospital we all went for a wonderful meal outside, the chicken and mushrooms pie was great probably the best of my life I thought. After we started the way to the room, firstly I decided to pass in the chapel to have a moment with me and my protector. Around 9 PM I arrived in my bedroom, they gave me a single bedroom, it was good thus Justyna could stay overnight with me, it was the best that could happen. Shubhi went to our house with the rest of the family, included Olivia, It was the first time Justyna slept without Olivia. In the farewell of the day I heard the most beautiful adjective somebody as called me, Samurai, it gave me more courage. Thank you Shubhi.

In the room, in spite of all luxury, even a TV with multi channels, I felt like a prisoner having finished his day out, in the time to came back to the room. Me and Justyna kept almost all night in a warm chat, I slept probably for an hour, because so many time the doctors came around to do questions and set some drips. We felt more rested after the conversation with the doctor, even I felt with courage to do all the operations that would be necessary. We spoke about Patricia & Maria, thinking how much happy they should be that night, My friend Patricia gave birth in that day. This took us to Olivia, she was not there physically but she was occupying at least half of the bed. To see Justyna staying with me in the last night was metaphorical, because she was the person one year ago who said to me We will go through this together and you will be OK, Olivia need you.

The last checks indicated that my weight was on the top for a long time, I was with 65.1 Kg but my height lost 2 cm, I had only 176 cm. I was woke at 6.40 AM, and the secret for the next two hours is do not think about the next two hours, Justyna gave me a shower. Just before they came upstairs to drive me to the theatre, my mum and Filipe arrived to tell me good bye. I was calm, nevertheless when in the march to the operation I could not avoid to cry, it was too strong to say good bye to my Justyna and my mum again. It is harder to clean the brain than the Liver I was thinking to myself. Inside and alone I remember to kept joking with the team of anesthetists and finally feel happier when they asked me if I wanted something to relax and be more out of what was going on, and I said I think I need. Last thing I diffusely remind was to see Dr Fusai asking me if I was ready :)

The operation it was longer then expected, it went from 9 AM until 6PM, the Liver was sectioned in almost 65 %. The doctor explained to my family that fortunately all went very well and they performed the plan A and it was cleaned some liquid around the Pancreas. After I woke up and been told me that news I really felt the happiest man in the World, I was coming out from that tunnel and the pain was not there at all. I guess all the drugs highlighted all that feelings. But what happen after Justyna left me alone in the Intensive Care Unit I do not understand. I dived straight in a deep sadness and depression, all looked dark and irreversible for me. I did not believe in nothing, I thought all were conspiring against me, My mind was telling to me the news of course were the worst, they were not telling me the true, I imagined the cream that my mum made up her face were redness from crying, I could not feel any pain in the Liver, so the doctors did not touch it, the news must be very bad. In the operation they decided to do not use epidural, even that made very confuse. The hours, I felt as I was burning in madness, the seconds looked minutes and minutes looked like hours. So, surprisingly I was with more pain in the brain and soul than in the Liver. The panic only calm down when in the morning Justyna came and reassured me about what she told me in the night before was true, it did happen. It was Saturday but the doctor came around for a short visit, His words were not what a child would like to listen, but essential I was content, The operation was successful, my Liver should regenerate but I need more chemotherapy and he cannot give any guaranty that the tumor could not came back.

Because my body reacted well to the surgery they send me to the normal ward in the same night, and when I arrived there again I came to another bad dream, there was two patients pretty bad, one was breathless, they were trying to resurrect him apparently he was swapping with me in the Intensive Care, The night was not brilliant, my sugar levels were very very high what always increases the hallucinations. I thought it would be a miracle to surpass that night, I thought about N.S.Fatima about everything to bring me the morning. That night was too dark to sleep.

In fact in the morning I felt a different person, at 6 AM I was already listening some music that Filipe left for me and in the best mood that you can imagine. The worst has gone. I was happy to woke up Justyna to tell her how much I loved her and I was feeling great:) the news were to celebrate. Second day and I already went for a tea, toast and at lunch mash and gravy. I was in control of my pain killer, I had a pump that I could trigger the morphine to kill the pain, but the frequency that I needed the drug were longer and longer. The day was perfect with Olivia witnessing the day close to me.

Sorry about been so long, but this is my testimony of my last day with cancer, it also serves to be the catharses and detox of some bad moments from all of us.

Kisses

Wednesday, May 20, 2009

Wide sight




In this days I do not have words to express what is going on in my heart, so I will not even try. Slowly I am coming back from my deep sad thoughts and I am still thinking if all this is real, In the last days my digest has improved, I am eating with more passion, and the strengths are slightly getting bigger. In the afternoon we did a cinema session taking advantage from the visiting of Vasco, We just missed the pop corn to give more drama to Blindness (Ensaio sobre a cegueira). It is also about somebody that his sight turns white as milk but after all recovers the vision.
Thank you Vasco to bring bacalhau, the dinner was great.

Tuesday, May 19, 2009

Party time

19th of May 2009 is entitled to be one of the most important days of this journey, not the single most important because I had this feeling of been in an important day at least for a dozen of times. Before getting in the waiting room for the consultation with Dr Fusai I felt the same as into the others appointments, nervous, anxious, only thinking about the moment of a call for my name, following close all the movements from the doctors.
In the morning I had already left a sample of blood required to do some tests, and after we went for a meal to feed our starvation, the kitchen was crowded with Portuguese staff, so the food was really good, or probably I was desperate to any food as I was fasting for a 12 hours.

But at 14.00 we were back to the hospital and waiting to see Dr Fusai, First it was a doctor from his team that saw me, He examined the wound and told me that all looked very good, very smooth around the Liver and Pancreas, and the problems I have with digest should go for a few more weeks, so it looks is something expected. But for more information we should wait for Dr Fusai that he personally would come to the room to see us, after he has finished to see other patient, So after 15 minutes he came. Anyway at that time I was more relaxed. Dr Fusai when arrived without losing any second, said that the operation was successful, for the results from biopsy The Liver is free of Cancer, the margin given when cut the four tumors from the Liver showed healthy, then and because I had already 6 cycles and not 3 cycles of chemotherapy, I do not need more chemotherapy :) The last decision will be with Dr Tim Meyer, but it is very likely to be like that :) I can start to think about anything but not the disease and Hospitals, this is now my problem, having priorities.

I will see the Operator only in three months time, after a CT scan booked now for August, This routines checks I guess will go forever in my life. The doctor said that they will keep an eye but it is me that I need to keep an eye on Olivia :) When we thanked Dr Fusai for all his commitment he was great and told us that I need to be present and Olivia will need me.

The day must be special and reminded for a long time as also my friend of battle was in celebration of her birthday, Congratulations Shubhi and thank you to cross in my way.

Monday, May 18, 2009

In the Library




Finally today we find a place where Olivia can find some friends of her age, we went to the library close to our house, we only spend few hours but enough to see enjoying in a different environment, she found a new friend and a lot of new toys. The afternoon let us to watch the brilliant mind and read. I am relaxed for another steep in the climbing of my Everest, as somebody once told me. Tomorrow in the morning we will go to the Royal Free Hospital, I need to do blood test while fasting, mainly it aims to check the functionality of the Liver and also to check traces of tumours Neuroendocrines in the blood circulation. This is a routine test. Afterwards already after lunch I will see for the first time the surgeon after the operation. He should have already the results from the biopsy to the Liver, and then they should let me know what will be waiting for me.
Additionally I want to make few questions to him related with some pains and doubts and also to say thank you to him.
Last thing in the Hospital is to speak with a psychotherapist to speak about my fears and see her opinion. The aim is just to speak and see what other patients in the same waters as me feel

Sunday, May 17, 2009

Congratulations Maria

Today we had our first open day to our friends, with the excuse of Maria's birthday we rally few friends at home, they also wanted to see us after the operation. It was a great afternoon, I was energetic and for a day I almost forgot about pains and surgery side effects. Olivia was very happy to see her friends and please for the beautiful present from Jane. A engraving Jane's hand made with the celebration of Olivias birth.
Good to see again all the friends and knowing bit more about what is going on in the real World.








Saturday, May 16, 2009

Worse than being blind


Ola,

Today I have been trying to rest, I was in bed most of the day. This because is where I feel more relax and the digest flows better, whenever I take a walk the digest become more difficult, I am sure this is all normal, only the time will change it. In the afternoon Vasco came for a visit, it was good to chat about Portugal and have a meal.

At the moment we are also looking for some place, like a drop in, where we can take Olivia to find more kids around her age to play. She needs to interact with more children of her age, She has been too long indoors and feeling the stress of all this story.

Friday, May 15, 2009

Jackpot in the pocket


Ola,

It was a long wait today to see doctor Tim Mayer, responsible for the chemotherapy, but also because our fault, for the first time we came late to the appointment, so we were punished and put to wait 2 hours, Olivia took advantage to carry her walks around.

Anyway, my life is already committed to the Hospital along time, so more 2 hours does not mean anything :)

The doctor is always very calm, I like to see him, and now he was again honest, He still does not know about the result of biopsy to the Liver or hepatology, and this results will be discussed only Tuesday with the operator, but he confessed me that for him probably it will not be necessary to do more chemotherapy, I was surprised, and I told him, please I do whatever you think is better for me, I just want to live longer as possible, He smiled and told me of course. He knows and understands all our stress and anxiety. This news would be great to my brain, that I am not sure how the neurones will respond to more chemotherapy. After last chemotherapy I just remind to forget easily a lot of things, that now I been recovering. I really feel my memory again fresher. But the final decision probably will be told to me this Tuesday when I will see Dr Fusai. Anyway the chemotherapy only can starts 8 weeks after the operation, and today past only 4 weeks.
About the problems that I am facing to digest, he told us that I came from a very serious operation, and I am doing very well, there is nothing to worry about, lets give time to recover

The evening I have only one last duty, to check the Euromillions, it is anecdotal, me winning anything, big laugh :)

I am joking, because I am wining a lot of things, principal the beautiful family here beside me.

Thursday, May 14, 2009

Smells tree

I would like to share with you what is my normal daily walk, We use to go around the house passing in Mile line, and is exactly here what we can see one of the most brilliant monuments or street art I have ever seen. All the bridge has been given to a group of very young painters that represented the trees or a forest. It is several pieces of art and also because all are different, it become such a beautiful colourful bridge. We almost can smell the wild forest.

Tomorrow I will go to the Royal Free Hospital to speak with the oncologist regarding to the chemotherapy, is an opportunity to ask him about my lazy digest. Also fortunately is already next Tuesday I will meet doctor Fusai, the operator, this appointment came one week earlier, what is good.