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Sunday, August 31, 2008

Brightness behind the darkness


Ola,

Another weekend left behind, and another week is ahead, even if I am not working at the moment but for me also the weekend means more relaxing and resting time. The week means not work but exams, visits to doctors and troubles. Tomorrow I will need to go to the UCL Hospital to have a regular appointment with the diabetes team, time to discuss and see what is the appropriate levels of insulin I should administrate to myself. Afternoon I am planning to go to the nurse to remove three stitches in my leg, related with the biopsy to the skin to check from which substance I had allergy. More forward in the week I will meet again with the surgeon probably to speak about the last operation and I hope to set a date already around this month for the next surgery.

This afternoon reserved us such a great surprise and honour, having the visit of my lovely friends Ian Small & Renee in our house to share the lunch brilliantly cooked by my mum, a delicious Caldeirada de Peixe (Fish Stew). Ian as I told to him already was my inspiration for all what did come after they diagnosed me with the terrible Cancer in a time that I was not still prepared to manage with that concept. The first day the nurse dropped me in the room where Ian was, I was alone and just remember to cry like a child perhaps 5 minutes if not for sure 2 hours, I could not understand the world any more, at that time I was convinced that address would be my last one.

But if I went deep in that day I also found the structures that would helped me to turn over the situation afterwards. I remember that I desperately needed to speak with some friend, and fortunately I had the visit in that afternoon of Sofia, Patricia, Filipa and Marta, what did not allow me to go even deeper. At the very beginning I did not imagine the high calibre of human being was beside me, only after a couple of hours I realised the intensity and love that was irradiating from the other bed where was Ian and Renee. The atmosphere that I was expecting to meet in the room of the Hospital it was not there, instead of the claim and cry was there the laugh and the positive attitude, instead of selfish was there the constant worrying about you and an advice and an unexpectable and friendly word that never allowed you to go downer. He is a person who taught me how to live the day, with the lesson of his small chocolate bar. Is confuse but Life pass always for our Today.


In the end that room revealed such enrichment for my personality. In spite of the fateful of all who were sharing the room we all saw our family grown with the friends we met there, this includes Richard and Derek. These two friends and family also connected by their father in time hospitalised in the some room and were always ready for a friendly word and to help with anything.

No doubt about that is always possible to discover behind the darkness the brightness.

Today the life paid back us with a great afternoon, after a month it was like a dream that come true facing again Ian and Renee. Now, Ian and myself without the support of any drips and able to share a nice meal on the table in the warmth and privacy of our own family.

Another great day

Saturday, August 30, 2008

Ordinary is also beautiful


Hello,

It is good when after such sinuous and tortuous way we have the opportunity to enjoy just a normal single day. Such a lovely day the Gods offered to us, sun was shining all our spirits, and the river Lee opened its arms to show all its brightness. Even the ducks and swans earned extra food because of generosity of my mum, She brought all bread left over and throw to all birds that come closer.

Together we did a walk along the river only stopping in a sympathetic bar on the way and away from house, it was time to sat down and enjoy a tea, substituted of the beer by long time already. But no complains. After just enjoy reading of a book, like if I was in Fonte da Telha in Portugal some years back. Now with the advantage of be accompanied by my family, Olivia did not stop her complicit smiles with me. If it has been hard for me all this time I have seen her in an intermittent basis when I was hospitalised and also now to take her in my lap or in my arms is something that I am still forbidden, but had been balanced with a small tenderness moments with my love. Sometimes I think we know already each other very well for a long time. She always exchange a laugh and a beautiful expression when I need. She is everything.

It is such a pleasure to could relax and for a while forget the troubles and do not do any plans just take the life and the day as it comes.

I hope that the sun keeps shinning behind the summer that now is about to flying away, for all of US.

Kisses

Friday, August 29, 2008

From where all come from

Czesc Kochani,

For one time before any coment regarding to me, I hope all of you are going very well, taking advantage of the good weather, this of course for who outside of UK. I still chase also the moment I will meet again with the seacoast. Where the horizon is the limit for your dreams.

Slowly I am recovering very well. Today I went to the Hospital to remove the Cramp that persisted in my belly, not without some pain but it comes out in the end. I was already scare that I could not air travel anymore, as always I would pass in the metal detector it would accuse and Bip for that small piece of metal.

Meanwhile in The Royal Free Hospital I saw one of the doctors of the Dr Fasai team and I was glad to see her reaction, She was astonished with my state, colourful, walking slowly but firm. She said rarely they see somebody after such an operation presenting my image. She also explained some doubts I had, saying that all looked OK. The sensibility that I lost in the skin around the pancreas is normal and would come back only in the end. The scar is long but it is healing well :)

But not only what we can see is showing signs of improvement, also the invisible factors are going better. Not understandable but my levels of sugars are keeping strangely downer even if I took the decision to reduce a bit the insulin that I am injecting daily. Seemed that the Pancreas now is producing some more insulin. Please keep this with us, It could be only speculation but for sure is my hope.

In other corner the weight increase 500g since I come home and I still in the run for the food, this even if my figure looks more a person took out from the cartons of Bruno Schulz, The trousers are all under my waste, I am walking with one hand keeping the trousers in decent position.
rain of love

Thursday, August 28, 2008

In the city with l'Angels


Ola,
According to the plans today morning I went to my GP to remove the cramps or stitches of my surgery, but the nurse in service was not strong enough to remove all, leaving one cramp inside the body. In this way I need to back tomorrow to the Royal Free Hospital to get rid of my Last Cramp. They also will look in the scar if it is healing properly as there is a area were also bled a bit.
Apart of that, sugars keep going well and energies growing as well.
Last idea to thank you for all energy that I feel is radiating from all you. Also your vigilant eye is still guiding me. With all of you does not matter when but I will land in bon port.
Big kiss and Miss you all

Wednesday, August 27, 2008

I am running away from this guy


Ola,

Not much I still can do nowadays, Living in between the comfort of my bed and the cares of my love Justyna. Even the most easy activity could be such a challenge for me, standing up from my single bed is something that I need the help of Justa and either the washing and cleaning is another thing that made me a total dependent man.

Today I felt tired after my walk, cause I incremented more km in my small walk. For that ambition I paid with tiredness when I came back home. But all normal. Regarding to good news, today I noticed that I put on weight 200 gr, reaching 63.4 Kg, Olivia is almost competing with me.

Hard to deal for me is to know the right amount of food I should eat, if in one side I need to control the sugars levels and also my body is still not able to absorb big portions but in the other side probably because of the big transformation that my body is still trying to adapt, is asking me for more food, I am writing this lines and I am thinking about a nice meal :)
The environment at home is helping so much, now less frequently the bad thoughts are assaulting my mind, I remember in the Hospital the discomfort and pain in my mind was something that I was used to, for that it contributed fact that in my room were three other mates, all of them with cancer and with very complicated situations. In such an environment it is difficult to build up your own confidence. I hope they will forgive me but rarely I opened the curtains that surrounded my bed to speak with them. One situation was scarily very similar to mine but his prospectives were very low, In this context I refused to know any more things even his journey in spite of he wanted to describe me his details. Please forgive me, I know I was coward and selfish.
Few nights I try to sleep listening the pain and the claiming of others, sometimes their tooth shaking because of the fever. In the first nights I was in panic that some of them in the way to toilets would felt in my bed. After I gave up, I never could sleep any minute in that room.
I dreamt for the day they come and told me that the next and last night they will move me to another ward, more light, Thanks God.
I need all of you

Tuesday, August 26, 2008

Now is my turn, again


Hello,
If there was time the main role was in the doctors side, now after the surgery it past to my side again. Few but big things I need to take in all the days of my recovering. No stress, even if the time is not playing in my favour. It means if the game would finish now I would be defeated. I need to keep a strict control of my sugars levels and then my diet to maximize all the healing process.

With all that in my mind today it was a calm and relaxed day and with a small steps forward, The allergy looked that it improved, the rush is not so intense and I hope that will disappear soon. At the same time for the first time the body showed signs that can start to adapt to the new levels of insulin, since the morning that the sugars levels has been in reasonable levels. This helps me to satisfy my appetite, by the way the appetite is something that I never missed even against the prediction of the doctor.
Additionally I went for my daily walk, and it was quite a long walk and I still had some energies left.
Finally finish with this lines and looking in Olivia.
Hugs and kisses
PS: We see me in my recovering bulb

Monday, August 25, 2008

Theatre of dreams

Ola,

It is so good to be back home, Be surround by family, can kiss and listen Olivia crying and have the cares of the nurse Justyna. But of course the things are not the same as when I left house.

Reflecting the major intervention that my body was submitted, my levels of energy are very low. I am passing most of the time lying down in the bed reading and computing. Consequence of been removed almost 50% of my pancreas, now my body requires extra insulin to face the sugars, and at this moment I am all the time with high sugar levels, This means headache and laziness more frequently. The body still needs to settled down for all this changes.
Another consequence that I still need to adapt is an allergy that I catch and I still did not manage, I have a rush in some parts of my body, what is very uncomfortable and does not allow me to sleep as much as I want and I need to recover. The factor for the allergy could be penicillin but there is not sure about that yet.

At the moment I am trying to take all this very easy, the last thing I want is to stress with whatever, I have already an appointment in 8th of September with the surgeon to discuss the last operation and to set a date for the next one. The last chat I had with surgeon Mr Fasai he told me that the intervention went successfully and all the figures showed that my body copied very well. Additionally in the last surgery they looked already inside the liver and this one presents five metastases that needs to be removed before it spreads to other parts, So with this news there is no time to wait, all must be done quick.

But for sure today the perspectives are much better than a month ago, knowing that still a lot to go but the desire and hope are even bigger.

This evening I finished with a lovely walk around my house to stretch my legs and take some fresh air and to proof that there is live outside the house.

Big Kiss

Sunday, August 24, 2008

Not always the life is like this


Ola,

I know that some of you looked for any news about myself during the period I was in Hospital, But it was impossible for Justyna to write what was going on in the blog, She did not have any time left for that, She was leaving me in the Hospital around 23.00 to comeback in the other day in 8.00 Also in a ping pong between me and Olivia.

The journey started in Wednesday evening, we were back to the hospital, definitely a place competing with my normal address as my regular home. Inclusive I am thinking to give the Hospitals’ address to banks and etc. So, the beginning started with a small confusion, been given to me the wrong bedroom, actually it was more a suite. But after they changed me to a normal room. The two mates in the room they were with diverse problems, apparently one with dysfunction in the kidney and the other with problems in the shoulder, I hope they had a good luck.

If while arriving in the Hospital I was not sure if the surgery was waiting for me, that doubts vanished when we saw my thick folder in the reception. I was in the surgery list for the day after. At around 10.00 pm Wednesday Justyna, Olivia, mum and my cuisines left me in Hospital. I remember when left alone it was only waiting for me a book, a notebook and a pen, but my fears blocked my ideas, I was not able even to describe what was going on in my mind, Just the calm of somebody who must me prepare for everything, there was no guaranties of nothing and that day as today the hope was still faraway from reality. In that night I already did not sleep too much or in fact I did not sleep at all, All the time nurses were coming inside the room for different checks and it was only 4.00am when started all the normal procedures and preparations for the surgery.
Like if in a Ballet it was the scenery, the dancer undertakes a very strict procedures before climb to the stage for his performance, in the surgery all the intervenients also need to follow different routines and rituals, Not only the operator but also the patient. Thus, I was connected to a drip at 4.00am which provided to me some calories, insulin an drugs. Then, I had time to relax and concentrate a bite more in my performance. Around 6.00am slowly I went for a shower, shave myself, time to look for the last time in my face through the mirror and thought-I am ready for this.
Afterwards I move to the privacy of my bed and gently dressed up an apron, pyjama and also a special tight stocks, here not for ballet but for the circulation of the blood, Finally I took out my ring and necklace and I was left for the last time with myself and with my thoughts. It come to my mind the silly thought and, If all this it was a terrible mistake and I did not have cancer. All was an accumulation of errors :)

Before I move to the big stage, or theatre, the name they called the operations room, I realized that the Sun was shinning this morning, what just made me think I need to get out of here as soon as possible to go outside. But I still needed to wait 5 hours until the end of the surgery.

Lastly, I was transported in a special bed until the stage, in the way I meet the Consultant doctor Fasai and I told him Good Morning and he straight come to me with other doctor and in a gesture that I doubt it was to calm me he marked in my belly the way he wanted to be cut my belly, and made sure that the other doctor understood. The incision needed to be in a special way, as they wanted to have a look in the liver and probably to be easier in the time of the next operation. Then I was moved quickly to the stage and meanwhile I needed to say good-bye to Justyna. Few more things that I remember was the anaesthetist that come along had all his body with tattoos and did a small hole in my spine where he dropped the epidural after just time to smell something by the mask and the last complain, vomit, but I was already knocked out.

Afterwards and for at least next 5 days I cannot put all the pieces together, only remember to have pain and fell very frequently syringes plus painkillers. Because of that I was left all the 7 days in the hospital without any sleep, something that I still cannot understand why did happen. All the time I was trying to close the eyes it come to my mind without any exception different pictures, must of them I still keep in my brain, normally some squares, triangles, sometimes some movies, almost sure portraits I had in my depth conscious, and even I remember an image of a baby that was zooming out, which done such a beautiful picture.
Good Night

Saturday, August 23, 2008

Ola amigos

Hello Dear All,

Thank you for all your messages , Just last nigh I come back home, I Still very confuse with all what did happen, It looks like the process of healing will be also painful as the operation in itself. I did the surgery last Thursday, and all the next 5 days pos-operation while I have been kept in the Special Care Unit I still need to put all the pieces together with the help of Justyna. I know that I could not sleep one single minute and I had horribles images in my mind always I was trying to close eyes, I remember to think that I was in the hell, listening screams around, plus pain. My only explanation is that my body had a very bad reaction to all the medications were given to me. Also, the pain could be explained because when they replaced the epidural they set it in the wrong place, so after that I was feeling and I had sensations where I should not, leaving always the "team of pain" that was coming surprised.

But looking for the big picture, reporting what the doctor told us, all the event it did not go only good but extremely good, Went fantastic. According to the plans was removed all the big mass, 50% of the pancreas and also the spline come out smoothly, yet paraphrasing the doctor.

Now the plans is to get on track, recover from mines 64.4kg today, to when the next appointment with the doctor in 1.5 weeks probably set already a date for the next operation. In the last operation they looked already inside the liver and the prediction is to remove 50% of this organ. From what he said the success is possible, He showed very optimistic regarding to the next surgery :)

See u

Wednesday, August 13, 2008


Tonight it’s me - Justyna

Helder is already at the hospital - He cannot write from there so I promised I would do that behalf of Him.

I don’t know what to say..

I would like to write something funny like He used to do, like He be able to look at everything from some safe perspective, and like He surprise you with great picture and enigmatic title.. but I don’t have His skills.

Tomorrow Helder will have an operation, but we still don’t know even what time it will happen.

Please, think about Him tomorrow-He will need all of you :)

I feel so powerless and scare…
miss You so much, Helder..
our little room is so empty without You..
Sleep good, my love, my sunshine, my everything..


See you downstairs

Lovely night, all the family got a restful night sleep, probably to take advantage of this last night altogether and either predicting the hard time that is coming. This includes our sunshine Olivia.

Now I am packing my stuff to leave house after lunch at the same time I am listening a very strong composition from Hendel. Inspiring for a battle. I do not feel to cry, I am almost happy.

In my suitcase I am storing some pajamas, books, notebook to write while I am away from Internet, some insuline in case if necessary, and a big dose of courage and hope.

See you friends very soon downstairs... or more upstairs :)

warm welcome to Dani


Ola amigos

What a cheerful day, this morning, was 11.50 after a long time of labour my sister gave birth Daniel, Both are good and very happy. Congratulations.
Also, what an inspiration for me in a time of such important event for me. Today I did not have any call from the hospital but I called the Royal Free Hospital and they confirmed my booking for tomorrow, I should arrive in the hospital at 5pm to be having the surgery in the day after. I do not know what to think, I am happy, slightly nervous but overall tired of this entire wait. Justyna as me is very nervous and probably scare of what will happen. Tonight was a very difficult time for both. Big kiss and courage for you, my love Justa.

But tonight I saw the moon blinking her eyes to me. All will be all right.

I will get in touch as soon as possible.
Big kiss

Monday, August 11, 2008

I believe in the tomorrow's sun


Boa noite amigos,

In the aftermath of the day before, today I enjoyed another very pleasant and relaxed day, in fact it was a great day :) I went to a healing centre outside London, it was the continuation of a process that I was introduced in the time when I was hospitalised in UCL Hospital in London. It was a session of meditation and relaxation based in a method similar to Reiki, you lying down in a couch and the master through his hands using a gentle and localised massage in some parts of your body past to you good energy. With the help of your coordinated breath you reach a stadium of relaxation. This is used normally in the hospital to deal with patients with nasty diseases submitted to a strong stress. Not only the session but the atmosphere and the landscape were unbelievably beautiful. After we went out and from the top of the hill we could sight some other smaller mountains around, we could imagine how many more paradises it was hidden in the horizon. For our delight and Olivia’s even if the weather was not inviting the birds stubbornly kept sang. In the way back we went to my friend Shuby’s house and enjoyed a calm afternoon with the family under the supervision of Taz.

About the operation I still need to wait for tomorrow to have the confirmation that for sure will gone happen this Thursday. But I was already informed today that in the case that the surgery go ahead I will be admitted in the hospital already after tomorrow to be cut it part of my sausage :) (Julian it was the best description I ever heard for Pancreas).

If the life is something unpredictable that could make us facing some obstacles, the same life could give us the most beautiful thing, another life. This because my sister just entered this evening to a maternity labour, By this time she had started some small contraptions, Good luck for you Leta. And to my mum also my honour, she has been brave all the time, now between the creation of a new life and the save of another one. Kisses for you &

For all of you
PS: picture is in Douro (North of Portugal)
(courtesy from Sofia)

Sunday, August 10, 2008

Olympic Games

Ola,

If yesterday I could not enjoy the day as I promise to the doctor, today I found myself calmer. It helped to relax the walk we did (myself, Justyna, Olivia and my mum) until my friend’s Veena house. It was fantastic to stay altogether in her beautiful house, Sometimes changing of environment helps to reflect and find more peace inside our self.

I kept busy with some reading and watching the Olympic Games (OG). I was observing the games and I stop to think at the moment of celebration of a Gold medal by a British cyclist, I remembered when I was in this things of the sports, doing athletics, I use to dream to one day live the OG, on the stage itself. And why not once there I would battle for a golden medal. However this dream very early I needed to abandon, and today I was thinking, probably the medal that has been waiting for me is not an Olympic one but the medal of the life, for survive the Cancer. Between both the last, is the most important without any doubts for me, and even perhaps more difficult to achieve. Therefore, I will fight for highest place of that podium.

Lots of love

A sentence left behind


Hello dear friends,

Unexpected today and without any reason I felt emotionally very down, fearing that all my effort would not be enough. Probably some anxiety for the waiting of the results of the last exam. Fortunately Justyna was present and pushing for me all day. We are working like a scale, balancing each other. When Justyna notice that I am sad she tries to lift up my mood and transmitting all her good energies and positive thoughts, Sometimes this could be a very demanding exercise, For example in the first days when all this started, it was told terrible things to Justyna, how expectable would be my journey, but the brave Justyna never believed and more never transmitted all this to me. Just looked to me and said to me believe in the future like she was believing, Furthermore, she would go through all this with me.

Going back to the worst days, I need to write this to help me to release that ghost from me. It was some days after the biopsy, It was not necessary to be a doctor or neither have a special powers to know that my case was complicated, however I was expecting news very quick to start also treatment quick, But the worst was just about to happen. A normal day of the calendar the nurse that worked with Dr Webster (Pancreas head doctor) come to speak with me, I remember my mum was sat on my side and cousin in front, This lady took all what I have inside me, after leaving only a big vacuum, I could feel only my soul nothing else, I thought for a while my life finished. This because that lady, even before the conclusive results of the biopsy come to inform me that the Death will be my next station without any doubts. And was the general idea among the doctors.

First she used a current artifice that is asking “you know why am I here?” or “we are waiting for the results from the biopsy and have you got the idea what it could be?” with this she avoided to tell me you have got Cancer, left for me the answer, I know that one of the possibilities is Cancer. Even if not enough she looked strongly into my eyes and made sure that I was right, “Sorry, but the outcome of the biopsy it will be cancer”, After I looked to my mum, and I remember to feel even more sorry for her than for me, she could not understand what the nurse was saying in English to me, but that lady was only sentencing me for an unbelievable and tragic destiny. I tried to kept normal, I do not know how I did, and I said to her OK, but listen I will gonna fight against that and again I looked for her, but from there it was already to late I could not get any hope, she did not believe that I could do anything, She told me “this situation the doctors cannot do to much Helder, there is no operation and probably neither chemotherapy would be worth”, in spite of I showed her, an article sent to me from my friend Filipe, telling cases of people with similar diagnoses to mine and fought it and had improvements.

When she left the room I could not stand without give a big hug to my mum and melt in tears. So many people had passed for these moments and now it was my time. All my hopes and faith that doctors and me could still turn this around had evaporated. In the same day we went to the church and it was the first time I saw my mum crying. I though to myself if a mum cries the son is in troubles. Afterwards, other nightmare was how to say to Justyna the message from that lady, Justyna had gone home to stay a bit with our daughter Olivia.

In the evening we went downstairs in the hospital where there is a canteen that become our space when my numerous visits come and I could not fit all in my room. But this time anything and anyplace could bring me back my tranquillity. Like if was in aquarium and screaming for help and the crowed outside could not listen me. I use to leave close from the hospital and thousands times I passed in the outside of the aquarium and I never imagine the person inside could be me. But this time was myself, So sorry I felt for myself.

After that day the lady of death (I still have a lot of respect for the people that work in the hospital and need to tell this terrible news to the patients, I am sure nobody likes) still come around but all the time I refuse to speak with her, pretending that I was sleeping, so scary I was to speak with her again. Fortunately today my hopes and attitude changed but I will never forget that day.

Today as I told in beginning it was a tough day, only I started to enjoy myself with the meditation lesson, even if so hardly I could relax and focus in what the teacher was telling. To finish the evening Justyna took me for a Japanese restaurant in Soho, it was good to remind the vibrant atmosphere of Soho.

See u soon :)

Friday, August 8, 2008

Something different

Witajcie,

I can say now my principal role is about to finish, starting the medical part in all this process pre- operation. Knowing that the main role will be giving me back later on. Today I finished all exams, tests and whatsoever been required to me. Remaining to the last one the Hulk transformation, consisted in a injection of a nuclear substance- Ocreotide, aiming to search in all body traces of the Neuroendocrine(Nets). So far I have been controlling all my hunger not like the cartoon :)

The results will be only available in the evening and Tuesday be discussed by the Oncology team. Based on the results the decision to go for a surgery next week will be taken, So, I never wanted so much to be found some Nets cells, but of course only in Pancreas and Liver. Pain is something that I am getting use, sometimes I do not know if it is a lot or not, yesterday the discomfort was very much in the liver today it change to the Pancreas, like if you would have a belt around your waist but smaller size.

The days until the surgery we choose to take it for us, going for a park even if the weather is not the best and tomorrow we will start some lessons for meditation in a Buddhist temple. Next week we are also planning to go for a Hindu temple. To be honest the disease makes us closer and more sensible to all the matters related with religion and spirituality. I use to be a rational stubborn. Some people can see this as sign of weakness and I cannot argue.
Something that I never heard that the religion could help is on the game and gambling, moreover apparently god never played dice, but I tried to have a go and I played in the Euromillions however in this case the fortune was away from me this time :)

Dobranoac

Secret spot of my childhood


I am still living in the hangover of the last day. Just has been given to me the right to dream, There is no better sensation. During the morning also the Sun join us to the party of life. So happy to see Justyna happier, in her beautiful colourful long skirt.

I would not mind to live “the today” for more a couple of days, like if the time stopped for a while and I could do few things that I am missing so much and the call of the surgery will not allow me to do in the next months. Should be given that opportunity and I would take my princess to Portugal, to enjoy the presence of all the family and friends. Having a quite evening seeing the sun setting at any beach in Alentejo also will not be missed. Meanwhile we are fulfil with some other small pleasures in the daily basis as sleep and rest a lots :)

Funny that in this days slowly the real Helder that you all know has been arisen and hiding the other Helder that born after the Cancer arrive. I explain, all the time after been diagnosed the tumour and the poor perspectives of live (accidentally, googeling in the internet I found that only 3% of the patients with this cancer lives behind 2 years) I developed an alter ego. This other Helder, rather than the one you know was created and fit to fight the Cancer and the death, Without self-pity but probably more egoist.
But now with the first good news after two months I am scare that the fearless Helder could vanish, as he is still necessary.

Though you do not know the last Helder, you friends, all helped to build up his energies and confidence in a better tomorrow :)

Today I started the procedures for the last test that can open the entire door for a desired operation, It was afternoon and last me only five minutes in a special room from the nuclear medicine department to be injected by the nurse with some special radioactive substance - Octreotide, that aims to be absorbed by the carcinoid tumour and then showing where the Net started and spread. So, tomorrow I will be put forward for a battery of pictures that we hope confirm all what we know already.
Até amanha

Thursday, August 7, 2008

Dziekuje


Viva,

What a day…. I almost forgot what is to feel happy :) So much emotions, but this time me and Justyna repeated again the flavour of exaltation. To do not be exception even my sugar levels persisted in a high levels.

Very early morning put through the endoscopy, I need to confess that I underestimated that operation. Before it starts I thought I even could enjoy the endoscopy, lying down in the bed and watching inside through the screen, but the reality was different. Even with sedative in my throat to helping swallow the Gastroscope, (for us ‘pipe’), it was a nightmare feeling the pipe pass in the throat and go all the way until the bowel. Only the pipe inside avoids me to vomit and scream. Next time for sure, I will ask for general anaesthetic :)

Even though in the end the report was clear, all looked fine, the problems starts only after the stomach, area not included in this examination. It seems that metastases were shy to come up to the stomach and chest. Therefore chest pain that I have sometimes must be for anxiety or for my love for Olivia and mummy.

Although, all looked positive they pull out a sample from my stomach. Have been told me it is a regular procedure. Afterwards I just needed to wait 30 minutes to recover and after have my first meal plus injection of insulin.

If the morning started well the afternoon went even better, I come home to rest and recharge batteries and of course to spend some time with Olivia. After lunch I went again to the Royal free Hospital to see the surgeon, in my first thoughts I was expecting a meeting to discuss a possible surgery and speak with anaesthetist. But this expectation was a pure mistake.

I got inside the ward for cancer consultations, clinic 1, and first floor with a strange feeling of normality, like if I was going to a regular appointment with my GP. In the case that you do not know the first act at any cancer appointment, they always measure your weight and your height. If the weight I understand yet the height I never understood. Apparently, we should get shorter when we have some tumour inside the body? Anyway the updated data at 15:34 is 1.77cm for 67.8kg.

After we waited in a middle of a long corridor having in front all way of the wall a lot of doors getting to different rooms, During the time I tried to guess from which secret door I would be called, what was very entertaining. Only after ½ hour the big moment come, somebody from the left inside end of corridor call for Mr Helder Assuncao, straight me and Justyna went throughout the hall and get inside a room. Even slightly nervous I looked up and saw the first doctor, also looking for me. And I could not believe I was in front of Richard Geere, I said to myself, No, no, Geere is not a doctor, This must be a joke, Only after he start to speak I realised I might be wrong, He conducted a very articulated and very straightforward speech. Dr. Fusai broken all my myths, beauty in the end of the day can be together with expertise.

Mr. Fusai surprisingly for me open all the game and in 5 minutes made clear is options and conclusions, Saying that an operation was almost for sure in the horizon. Very rarely they decided to go for a surgery when the cancer is already out of the Pancreas, as my case. He also explained that this is only possible because the cancer is a low grade Neuroendocriene (Net). In a piece of paper he draw the digestive system and focus in what was important, pancreas and liver. He explained me that it is possible to have a go and trying to remove all the tumours, in pancreas and already the 5 bites of metastases in the liver (only 2 last time). In the conversations between the Dr Caplin and Dr Fusai was on the top of the table an unique and single operation to cut all the cancer in all the corners of my body, but in spit of my fitness and youthful this could become a mistake such a enterprise due to the high risk of post operation complications. Therefore, they decided to do the in two steps, Firstly an operation in the pancreas, removing the 4.5 cm tumour allocated in the tale of the pancreas and representing almost 50% of the size of this organ, Also the spleen will go out for precaution, After I will be in the Hospital 10 days to recover before they send me home to be close to family. And to finish this marathon, after passing 6 weeks I will be hospitalised again, Now to cut a major section of the liver, 80%. Fortunately the Liver can regenerate itself.

This breakthrough is still depending from my Ocreotide scan on Friday, if the 10 hours exam’s report showed consistence with all others tests, then the beginning of the marathon will be already next week, possible next Thursday :)
For me all this story start to have contour lines of a game (if and if, then..) and I start to like to play the russian roulette.

The last comment from this impressive and professional doctor when responding to a question from Justyna, if I should prepare myself in some way for a possible surgery next Thursday He just answer, “Please enjoy as much as you can”. I promise him, I will do it.

Boa noite
PS: Dziekuye means thank you in Polish

Tuesday, August 5, 2008

hola hup:Big school in my life

video

Ola przyjaciele,

Tuesday, 5th August, A different day, been reading and look after Olivia during the time mum went to the town to manage with Polish embassy, actually is better to write quick as possible before Olivia wakes up. I been feeling well, still with good appetite, something that I never lost :)when mum comes I am thinking to take the family and go for a walk to enjoy the wet afternoon.

Today I need to have good meal in the evening, good news (you see…is the second time I am speaking about food) because tomorrow I need to fasting for endoscopy. And in the afternoon also I will see the surgeon in the same Hospital, Royal Free Hospital.

This is our life now, very boring you are saying, and I would agree with you 2 months ago. But after becomes clear with what we are dealing, it is a pleasure to do some adjustments to keep me around for longer, For example instead of go for my jogging or footy in the evening I swap without any doubts to go to hospital and, rather than a friend, meet the doctor or nurse. Nobody will convince me to go to the pub for a pint when I have my sugar levels to measure. In the night this operation is actually my best moment of the day, almost a climax. Forget also my former rich menu when I have my boring diet according to the diabetes table :) Of course as my report in the other day this summer holidays in the bed of home and in Hospital will be captive in our memory for a long, long time…

Buziaki

PS: I have been under pressure from my other half to insert some Polish words :)

Monday, August 4, 2008

Isto de ser Emigrante...

Buenos dias compatriotas

Well, another day and just another day. ufff.

Do you all know the old saying that the troubles never come alone?.. so this is what we are experiencing. If the healthy problem was not enough now we need to sorted out another dilemma with the tax office and meantime we are still without solution to the passport of Olivia. Olivia is so young nevertheless is already in the middle of ping-pong between the Portuguese and Polish embassy to see which one represents the most bureaucratic country in EU. I really start to think that it could be the cause for another cold war.

I have been already in England for six years but just now I start to be confronted with new English words in my dictionary. ‘Cancer’ I heard before but now it is part of my family and I think it will become Olivia’s first word when she starts speaking - even before ‘mum’ & ‘papa’. Additionally with her attendance at hospitals I am sure she will become a doctor.

Another word that I never thought I could need to pronounce in the first person is ‘Homeless’... It looks that my situation, with a life expectation less than 6 months (according to the medicine theory) I am entitled to have a council house, but for that unavoidably I need to become a homeless ( fortunately only on the paper). So, tomorrow we are going to apply for a house and the nurse will come with me to explain my poor medical situation. According with her she needs to come along because the council services might not believe that I am a sick person, if they just look at me - by this time I should look already much thinner, probably anaemic, with jaundice or lymphadenopathy (word to be checked in dictionary) because of the 4,5 cm strange body I am hosting in my pancreas and two liver metastases.

But overall the day brought also good things, the test to the feet was good, no problems in feet and legs, so far. Only to register my embarrassment regarding to the eagle nails in my toes. At least, I washed legs very well :)

Giant Hug

Sunday, August 3, 2008

Am I in the right train?


Olá caros amigos,

This weekend I have been feeling very exhausted, the sugars have betrayed me. Keep going up and down and with that my mood and confidence keeps also changing. Normally, when the sugar level is down I just think about a piece of any sweet and I would run straight for a chocolate. It is the only occasion that I am allowed to have the taste of a sugary snack, So, sometimes it is very welcome this moments, Hypoglycemia :) But in other side when my sugars levels jump to the other extreme, Hyperglycemia it comes the strong headache, nostalgic and often the sad sensation of a not good ending for this story.

Because of the pancreas been hill, it cannot produce enough insulin to cope with the food that I am eating and to help on that process I am injecting two times a day a certain amount of insulin. This is fundamental for the body as other hormones. I can imagine few years ago without the artificial insulin how many people had died with diabetes. Fortunately nowadays a diabetic person could aspire a normal quality of live.

My diabetes would be a normal case if the illness of pancreas would be stable, but apparently the tumour should keep getting stronger, therefore the amount of insulin should be also reviewed in daily basis, but this is not an easy task...

This Sunday I have been hostage of sugars, I woke already sleepy and tired, even to write this few lines was a hard job. But there is nothing that could stop me to speak with my friends. In this situation I am taking advantage to 'recharge' batteries, reading a not recommended book for a sick people :) –Everyman, Philip Roth.

Often also I found myself thinking about friends and even more about my childhood, going to the Fonte da Telha beach hitchhiking, going very early in the morning to buy few carcaças(portugueses bread) to bring to the beach. In other day I will speak about memories, I will not forget :)

Tomorrow will start a very busy week for me, I confess that in the present I preferred the week rather than the weekend (and I am still not insane). Rather than the quiet weekend when I have a lot of time to think about everything the week reserve me busy days, which make me feel the things are move on. For example this week commencing tomorrow, throughout all week I will have a test for my diabetes, check out my feet, and after I got endoscopy, PET scan, and also an unexpected appointment with surgery team this Wednesday.

We presume that appointment with surgeon is to discuss what would happen if they decided to go ahead with operation. I told Justyna how happy I would be if I have that operation soon, as it looks would be the best way to get rid of a big part of the problem. Even, if I have been told it would be something very dangerous. These kinds of surgery we never know in detail were it would stop before they start. But for sure it will be cut it parts of pancreas, liver and duodenum, I can see already a smile in the face of any butcher:)
Nevertheless it will be an opportunity to assume my condition of mutant with super powers, using my special powers of a Latin bear-man, my hairy belly will be there to cover any scars :)
Lots of love

Saturday, August 2, 2008

Get me out of here...later


Hello, dear friends

For who is in holidays, what I suppose is a lot of you, I wish a wonderful time. Please enjoyed for me before I go to Portugal and take all the sun and buy all the beaches and privatise all for me. Never mind I will let in all my friends :)

In fact, several time normally during my worst hours, some thoughts that passed through my mind was me in holidays, in a nice beach in the Algarve.

I remember when I was queuing in the hospital to the doctors take a sample from my liver for biopsy, where the atmosphere and scenery looked more like a airport atmosphere, for example if I would be in Heathrow. Probably because of that I was always thinking about my next Holidays in Portugal :) I remember that I was slightly laughing to my self, but literally to avoid cry.

It was perhaps my first moment of truth in this short story, I was not sure if I would pass through there, I got the sensation that after you get in that room, in that queue, difficult would be to get out of that, meaning be healthy and become normal. The context is really a big test for the common mortal, as you face your self in a big room, very lightly, almost if you are in operation room, and the people is forming a big queue around the room. Uninterruptedly the sick people are called and transported to a specific area in other ward to be done their one biopsy and meanwhile other patients are arriving pulled by an auxiliary. Imagine a normal movement in airport, planes taking off and others landing, so I witnessed the same but with people.

Straight away you realized that you are not alone in that agony, I remember to see a small child in front of me looked with several marks in his head, I presume that lovely human being was fighting against some cancer already for a while, Also I saw a man that was shaking with cold, my wife asked if he wanted a blanket to cover him, in my mind is present another man that was praying and a woman already exasperated of waiting so long for somebody to come to pick her up and transported back to her bed in other floor in the Hospital.

So, from now on I will call this frozen place the Terminal (it is funny the word) of any airport in the world.

Took me half hour waiting to be called for the biopsy and when my nervous start to make me laugh I decided to adopt a strategy: closing my eyes and thinking that I was in Marinha beach in the Algarve with hands held with my daughter and imaging the small waves touching the sand doing a beautiful melody. Such a paradisaical dreaming resulted and I kept using in other disagreeable moments to be relaxed.
Next summer Holidays I will try to not pass, we will meet in that beach or in another one :)

Keep in touch