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

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

hola hup:Big school in my life

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 :)

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

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

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