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Monday, February 28, 2011

Big white



I am finding here the perfect place to know better myself, At home the language still a big barrier and when a visit come I already set up my routine, to run away from long monologues mixed with smiles. I escape to the fireplace, pretending to be in charge of the fire to warm up the house, as if it was a big job and responsibility. Anyway, I always found very peaceful the fire burning and listening the ashes. Olivia has forgotten me, She loves to do things with her grandmother, It is lovely to see how they enjoy each other.

In this way I have a lots of time to me, and to stay with my thoughts that here faraway from London are more positive. All the mornings I go alone for a walk in the field, to stay and feel the vastness of the fields painted in white, It is such a great sensation to stop and just listen our own breath and the cold wind in the face, whispering in the ears to not stay too long.

In the afternoon we went to visit a friend of the family which lives in the former school of Justyna. Olivia did not believe on that.

Sunday, February 27, 2011

Cold as in the North Pole

Outside, for the first time the temperatures reached the Positiveness, but inside still very cold, when there is no heaters, in the church this morning we felt cold as never, close to the point of frozen, even the priest who is a Polish missionary was saying that he has been all over the World including North Pole but never found a church so cold as this one. Nevertheless we survived but my feet at home dived in the fireplace to gain again sensitiveness.

In the afternoon I past few hours in the warm of the bed :)

Saturday, February 26, 2011

walking on the Moon



The days are now to meet family and friends, Today we had the visit of the same friends that been in London 3 weeks ago plus Michael, which we have not seen for a long time. He is a friend from justyna studies, and he is still someone very special for Justyna. I was tired but it was great to have all here. Michael the king of dancing taught us how to dance few steps, The one I most liked was dancing on the moon .

Outside the temperature is arising and the ice is melting. It is time to take the last shots in the Moon.

Friday, February 25, 2011

Great grand mother's wisdom


It was a day of intense visiting, Olivia enjoyed to spend time and a long walk with her great grand mum through the Polish steppe. It was great to see them. I am more materialistic and I took the most from the table full of Pierogi szagowki. I did contemplate the food but also the trip in the car, It is so lovely to see the white blanket covering the fields and the rabbits and deers in the plains. After still time to Olivia play with Eliza.

Olivia is today out of her, happy because of her grand mother has offered her the first school bag. She uses now all the time.

Thursday, February 24, 2011

Winter sports

Plenty of winter sports and also a lot of fun expected us in the Mazurek's retreat. We used a pond in front of Justyna's parents house that is now frozen (alive only about 10 carps under the frozen mirror, according to Justyna's father estimation) to race in bobsleigh and ice skating. We are all very happy with this frozen days, It is also as if we would be frozen in this reality, where there is no hospitals, no early waking ups. It is also true that this resting has been possible with the great love and care of Joana, Justyna's mum.

Wednesday, February 23, 2011

Polish retreat


After three days, I got back to my civil dress. I took out the pyjamas and went outside for a big adventure in the Polish forest. In fact in the beginning I wanted to do a long walk through the field but because of the cold I was outside just for five minutes. In the evening it was -18 what required a lot of protection to do not become with tan skin.

It has been a very relaxing holidays. Olivia loves to play with her grand mum.

Tuesday, February 22, 2011

Going to the bear hunt

Tonight I experienced something that I been forbidden for a long time, Just a long and restful sleep. I do not remember a night when I slept for 12 hours in a row as this, plus the time in bed reading and drawing. I can call this already a retreat. Outside is very cold and inside the atmosphere is calm which, helps me to relax and to my brain find the path and the way to the good and simple thoughts and things.

But tomorrow I will gonna look for more adventures than the ones I am finding inside and in bed, as I promised myself and Olivia that we all will go for a walk in the forest, even if I would need to dress up with 3 blankets over me.

Monday, February 21, 2011

Home in the forest

Very early in the morning we arrived in the Stansted airport. There, straight away we found a climate of terror set up by Ryanair for its customers, after pass through the gates there was a lady with the most rude attitude that you can imagine, with a scale asking people to weight their hand luggage's, in that way looking for some extra coins for the already full pocked of this company. Probably, because of the staff being under distress to deliver more and more money, all of them are rude, arrogant and prepotent. From the scale we pass clear just for few grams. Inside the plane there was another confusion that lead to an argument between the steward inside the plane and a client. I was listening and I just wanted to stand up and speak beside the lady. But for now my bit I think is just giving up to fly with the Raynair and pass my ideas to all my friends to see if a message can be send to more people.

In Polish solo we found surprisingly a very hot temperature, it was a very warm -10 degrees, which left my legs almost frozen, In the afternoon I was in bed sleeping, as I could not sleep nothing throughout the night. After an hour of sleep in the afternoon I am much more fresh and feeling very well. It was very nice to see the family, Everybody looks well, specially Olivia's cousin Eliza. Olivia had her first trip with her grand mum inside the forest, I am sure this should be a great experience for a girl who lives in London.

Sunday, February 20, 2011

On the way to the Artic


Probably because of knowing that tomorrow will be the last day to take the chemotherapy and additionally feeling some excitement from our tomorrow's trip to Poland, today was a good day (finally), I was less tired, with less pain in the Liver and more positive. As I said, tomorrow early morning we will be already on the way to the heart of Poland, this afternoon the temperature was 16 degrees with a (-) before, with -16 it will be a challenge to go outside, I am taking books and pencils to draw. Another challenge will be to speak few Polish words. Anyway, I always can use the old tactic, just smile as if I would understand the language and just ping pong with the head in the sound of the words.
We are a shame of our own selves as we are flying again by Ryanair, We just hate this company and its policies and attitude, If I was not inside the plane I would throw it down. Before, we started our boycott and not flying anymore in that branch, I am really thinking tomorrow to organize something to show my repulse, probably something very coward such as post few bills with messages against that company in the airport, in a very noticeable place. Let see if I will not me jailed :)

At home we did some arrangements for the Spring, we left potatoes in the dark room in order to sprout and go to our garden.

Olivia looks also very excited with the trip, she was in a very good mood, Eating like father as a dog, She is turning up as a good joker, Mediterranean attitude mixed with the more clever north European blood.

Saturday, February 19, 2011

Calling for changes

I wanted to have a day when I would write this blog and I would fill it up with beautiful and positive things, Believe in me, I really wanted so much to see the day again when I will finished this lines good with myself because I did not bother nobody with my selfish complains and tears. But I am sorry, that day it is still not today. It was instead a very difficult day, I was not too bad in the morning and me and Olivia went to a meeting of fathers in a library out of area. But when I came back home I was unbelievable tired and down, I could not feel any point of my body. At least as quick as it come as quick as it gone after some rest in the bed. Justyna brought me today The Guardian to read, I am not sure if it is the best toll to make me relax. The news show some signs of people that want a change, After it is also important to make sure that the promised changes it is not only to see everything at the same. I will wait to see.
Olivia and mummy are very busy packing the luggage to take with us to Poland, It is already Monday morning when we will find ourselves in the hottest stops of East Europe.

I was again tired in the evening, I felt tempted to drop my duty, this evening was myself to do the routine of Olivia's going to bed, But this must be something that I need to hold until I have one gram of energy in my blood. I was very emotional this time, Me and Olivia shared a long hug, and I drooped few tears hidden in her back :)

Friday, February 18, 2011

Cactus

Olivia was very happy today, Mummy went with her to a nursery to ask for a place to start before Easter. We have been maturing this idea and we think it is a good time to Olivia start the creche, She will learn that there is more Life after home and I am sure she will find magic moments among her peers. The happiness is extendable to myself, I am excited to go to pick up Olivia in the school. It was funny this afternoon when she came to me to tell me that she wants a box to take to the school, where she will keep in sandwiches, juice. It was really funny. We are now waiting for response about days available and prices.

The evening was very relaxing having the special company of Veena.

Thursday, February 17, 2011

Meaning of Life

This morning I was very tired and the legs so heavy that were in the verge of the pain, It was difficult to stay alone with Olivia for a few minutes, But it is as everything that we do for pleasure... never gets too tired.
Even my Art lesson I was questioning if I should go or not, But luckily I have a colleague from the course which lives in the end of my road and she told me she would take a car to help me. She is a great neighbour, colleague and friend. Again my path in the class is slowing down, as I did not managed to finish my work, I will try to do it at home.

In the afternoon there was some news that left me sad, With the chemotherapy the brain is weaker and more sensitive to the bad news. I read about Steve Jobs and his precarious health, It shook me, I feel sorry for him. I followed always his situation not because of his mediatic and celebrity status but because of been one of the rare colleagues in the Neuroencrine World. I still hope this can be turned in his favour.

To have Cancer it is not necessary too much, just unlucky, and for who is battling, they maybe lose for the Cancer one day but never lose their dignity. Today when I was reading the news about Steve Job in some of the newspapers the focus it was not about the person but about the markets, and now what will be the future for Apple, The investors already asked for all the details of his health situation. There are so many people that have not understand the real meaning of Life, It is even more sad. Probably it is better to go and find something different somewhere out there.

Wednesday, February 16, 2011

Thinking lesson

The day went well given the circumstances, The body and the head still responding not too bad to the chemotherapy. Olivia today managed to learn how to Think. Yes, because the activity of thinking requires also a ritual, special gestures, noises and a very serious look. In our routine bath we thought about everything, a lot of decisions were made by us during our dream bath. My Olivia it is such a great mate, wonderful daughter.

Now at Wednesday the house become a nursery, Noah comes to play with Olivia. Olivia enjoys very much and it is good for her to improve her social skills. It is very sweet to listen her trying to communicate in English with him, She uses gestures, and pulls him to follow her.

Tuesday, February 15, 2011

Positive balance

Today was one more day of the long waiting, In this country during half an year we wait for the other half. This morning I stood up late and outside the day already looked like night, so I found the perfect day to be indoors and heal some wounds. The liver was more calm today, I just hope that will be like that from tomorrow on when I will need to add another pills and anti sickness. Just five days for the end of this cycle.
This afternoon I decided to go through a leaflet where I was expecting to take more information how to deal and communicated with Olivia regarding to Cancer and chemotherapy. But to be honest I could not bear all the booklet, It made me so down and depressed that I decided to leave the last pages for another opportunity. I still hope that I do not need to read those last pages.

I spent most of the day playing with Olivia, there are always unforgettable moments. Definitely with the Cancer a lot have been lost but for sure even more were gained.

Monday, February 14, 2011

Cinderella

The Cinderella is taking more and more work over her shoulders, Not only the house but also the front door is her space to clean and sweep. She is our best friend and she is always up to help us whatever we do. It is our time to help her more, to have more fun and good moments. All this, that come inside home is not easy to take for any adult and I am sure it is even more difficult for a child, as she does not full understand the reality, she just picks bites and some of them are very hard even if after while she is used to. She needs to know more than ever that there is more life behind the medicines always in the table and constants visits to hospital, plus some conversations that she should never pick up. To give her something different it is now our priority.

With me, its is still the Liver the king, It is bothering me with the constant pain there, I am sure is all the drugs that are giving all that discomfort. The Liver as me should be counting everyday the doses of tablets left, By my counting today I reached half of the way for this course or cycle, so it is only one more week and I hope all become easier, at least for few more days until the next cycle.
video

Sunday, February 13, 2011

Valentine's eve

I confessed that I was never too enthusiastic of the Valentines day, Because of often I did not have the pair which turns this day with sense, but also for the speculation around the day. I do not know the price of the flowers in a normal day but in the Valentines day those could cost few times more, the same with a meal out. Then the family had the Valentines meal today in the pre-Valentine day. It was a very calm and a good time spent around the table, We need to have this meals out more often.
For coincidence I found the place where I sleep better, Since Justyna's friends been here me and Justyna moved downstairs, and since then, in the living room I am managing to sleep better, I did the experience to go back to our bedroom two days ago and I did not sleep well again, So we will keep downstairs for a while. This chemotherapy is already enough unpleasant and if I do not manage to sleep few hours in the night it becomes even more difficult. For now it is the legs where I feel more tired, and also the Liver since few days has been in pain, but I like to think positively, as probably this knife that I feel in the Liver it should be because of the chemotherapy is doing its effect, killing the bugs ans bad cells :)

Saturday, February 12, 2011

Kopernik

Saturday is normally the day for fathers in the child centres, Today the meeting was a bit faraway but nothing stopped us, just me and Olivia went in the double deck bus in the search for the play house. Olivia wanted to go in the top deck and in the front window seat, I asked myself why all the kids love that as I remember when I was kid I also loved to go in the front seat of the buses, probably to watch first than the others one. It was wonderful the time we spent together experimenting the numerous toys. There were toys based in science, to play with the gravity and astronomy. Kopernik I am sure started in the same way and only stopped in the Sun.

Meanwhile, Justyna went to buy flowers, When she smells Spring her brain switches to the flowers. The back yard and the front door are now ornamented with the pots waiting for bloom to colour our lives.

Friday, February 11, 2011

Parents day

This day should be called the Day of Olivia's parents, because we offered each other some time, I will explain: In the morning it was Justyna with time off, I was in charge of Olivia, we went to the library. I am already worried about the passion of Olivia for books, She does not look for the kids, or to play with other things, She must have a book in hands to could breath. It is definitely an addiction.
In the afternoon It was mummy which went with Olivia to shopping, in that way I took a pleasure of diving in a book, as a few weeks I have not. For the first time I felt some nausea, but it did not stop me to go for a short walk to breath and charge energies. Slowly it is increasing my batteries of good energy, we just need a bit more of Sun to be full charged.

It is also the idea of Holidays that is going in my head, a break is necessary. For now, in two weeks we are going to Poland to spend time with the polish side of the family, and after at some point between treatments I hope we can find some weeks to smell the air of Portugal. For now I am happy to draw a landscape which remembers me Algarve.

Thursday, February 10, 2011

Fight in all the fronts

Fortunately in the last days I am sleeping much better, even if with the strong help of the chemotherapy. Thereafter, it is easy to take the pleasure of the things, like today. Since few weeks I was not so much rested and clam in the Art class as I was today. I have not finished the draw of this week in the class, but I will try to complete at home and whenever I do it I will leave a picture of it here. Today the work was with pen, which is the pre-stage to the introduction of the water colours. I cannot wait for that.
In the evening we met with Shubhy and I had her great support, emotional but also some ideas how to carry on this fight in all the fronts. I need to plant trees around me, to be surrounded and protected from the winds and temps.

Wednesday, February 9, 2011

Looking for a draw

Slowly the body is showing signs of fatigue. The head is also very tired, behaving as an island, in some way out of the World. There are moments when it is still difficult to take all this, but I also know the time and my princesses always helped me to arise from this boredom, so for sure this time will happen the same, It will be just a matter of time and patience. This morning I enjoyed another Reiki session and afterwards I took a walk to home, which took me the double of what normally it would take, nevertheless I was still on time for the picnic of Olivia in the Library.

This afternoon the friends of Justyna already left to Poland, just in the last moment I negotiated a draw for the last game of chess, so not all was lost. Often the draw can be also a victory.

Tuesday, February 8, 2011

Another blow


I just dreamt to have a quiet and relaxing day at home, But it was still not today, Our day was passing again through the Hospital to see the surgeon. The appointment did not bring anything new nor better, I came out again with a heavy helmet in my head, disappointment, sadness it is what I found nowadays when I come from the Hospital. Luckily, there is Justyna which after few hours manages to bring again any smile to my face, This is important for Olivia, it is unfair to full share this bad moments with her.
At least, there is no plans to go to the Hospital in the next month, I just need to take all the chemotherapy that I have at home, I hope I will find some peace at home. This evening we treated us with a lovely Bacalhau com Bechamel, It was good to taste again fish.

Monday, February 7, 2011

Not alone


The day was spent almost totally in our home, means in the Royal Free Hospital. Firstly, to see the nurse of diabetes, which it was great, she gave us a lot of tips that can help us to avoid to have such a high sugars, and also now I will be again under surveillance of the Hospital rather than the GP, which is a good thing. But after we were in the hurry as the alarm was ringing for us to be in the Chemotherapy suite, three floors up. We were there just on time, but unfortunately we would need to wait for more 4 hours to have the medicines ready to bring it home. Problems in the pharmacy and with the doses that the oncologist needed to confirm made us stay so long inside the chemotherapy ward. Olivia wanted to be with me, but I was not happy because I think she should not be exposed to all the heavy environment that any of us even adults would find there. I was almost crying and sensitize with the love and care of my princesses, that never let me alone. This is and always will be a job for all our THREE. The drugs that been prescribed for the chemotherapy are to be taken at home this time not in the Hospital. Then, for 14 days I will know very well the effects of Capecitabine, after 10 days I will added to the long cocktail the other very strong drug the Temozolomide.
Anyway, out of the Hospital I could not forget my promise to Oli and we went to the Park to Olivia could enjoy few deserved happy moments. I feel that I am in debit with Olivia with laugh and good moments. I told Justyna today, the first time a Funfair will come around we will spend all the afternoon there, Another promise.

Of course the most important thing that I wanted to tell you today is the fact that Olivia is with 100% sure a Princess, the test of the pea show the Truth. As in the book of the Princess and the pea, Olivia had a horrible night, non of us had sleep well tonight, after I had set up a pea under her mattress.

OK friends it has been a very long day, and just 45minutes ago I had my first battery of pills, it is now time for bed and search for the good dreams, there everything is possible.

Sunday, February 6, 2011

Princess or not?

I am trying to keep myself as busy as possible, at least to not remember about the things that I am not missing and I will need to taste again, such as the bad taste, the drowsiness and tiredness from the drugs of the chemotherapy. I really do not understand why they keep calling this products drugs, For me in my experience, I call drugs when those brings addition and high, but in this drugs that I will have tomorrow there is no good thing or whatsoever in the brain. Also to bee busy nothing better than to go to Camden, and then we all went there. Olivia feels almost at home walking through the streets, here assessing the fashion, there commenting hairstyles, She is definitely already an open mind.

Tonight, I did a deal with her, based in the story that she loves, I put one pea under her mattress to check if Olivia is a real princess. To be honest I hope the test will come negative, otherwise we all will have a bad night sleep.

Saturday, February 5, 2011

Charging batteries

Away from the Hospital, this Saturday has been a much more calm day, Finally I rested few hours in the night and plus some relaxing time in the afternoon, also my asthma problems gave me a rest, I did not have problems with breath this night, and lastly the sugars, I had increased the amount of insulin which showed already a positive result. I need to keep all this under control, as after tomorrow I will have already a battery of chemotherapy that will not help to control or heal whatever needs.
This morning Olivia took us and Bartek to the library to show her second home, It was the they of fathers. Everybody enjoyed the hour.

Friday, February 4, 2011

Black rabbit

The year of the rabbit could have started better, I still hope the Rabbit will bring me something better until the end of its kingdom. You already guessed why is this introduction, it is true, The oncologist let me again with bad news in the arms. Justyna was very disappointed as Olivia, She was in my arms and very sad all the time. The last scan showed the Cancer in the Liver progressed significantly, even if the other lymphoid in the abdomen has decreased, This means that I cannot wait indefinitely for the approval of the radiotherapy. It is necessary action to not lose all the precious time, Then this Monday I will be back to the chemotherapy holidays. I even signed the consent form before I read it. I found funny the rhetoric question from the doctor if I want to go ahead with the chemotherapy. Of course I said: I wanted to do already today, but this was not possible only because they did not have the drugs available.
The news (more the bad ones) are now a routine for me, but what is making me more sad is to see Olivia understanding all this what we are going through, And Justyna today was believing so much in better news. Now, I have the weekend to try to get a lot of rest, and I hope some laugh with a friends of Justyna from Poland that arrived today.

Thursday, February 3, 2011

The Concorde

The night is longer than ever, It is Olivia which often in the middle of the night breaks my process of failing asleep just when I am almost sleeping, I always had this feature of needing a long time to fail asleep, like the former Concorde needed a longer runway to take off. But it is not only that, it is also the sugars, In the last weeks I have too often hypoglycemia during the night. In that way I can stay hours in bed as vegetable, not knowing what is going on, and then do not take any initiative to finish the low sugar levels. Today I spoke with the nurse from the diabetes in the Royal Free Hospital, hopefully we will meet soon to discuss how to sort out this problem that keeps not turning my nights dark as should be. I was today very tired in the Art class, Nevertheless I enjoyed very much.
Tomorrow the airport of destiny is the Royal Free, and there, I will know if I should fly straight to the Radiotherapy or I should do a scale for Chemotherapy before, this depending from the scan of luggage in check in zone. Though, we all are waiting for a very smoothly landing.

Wednesday, February 2, 2011

Noah's ark

It was very worth the session of reiki today, The therapist always spends almost an hour around me, and today's was one of those, when I left I felt my body weighting half of its real weight. Afterwards, it was great to walk home full of good energy and just concentrating in good thoughts.

I still came home on time to take Olivia to the picnic in the library with other kids, later Olivia surprised me positively, by inviting for a first time a friend to her home. Olivia and Noah were shopping, played with toys and even had a meal together. So the date went so well that we all are looking forward for next meeting. Although all this, Olivia still wanted to go to the park when outside was already dark, but we went just to say hello to the squirrels and came back.

After this intense day I had my recharging time with a juicy bomb of celery, cabbage, cucumber, lemon, carrot and ginger.

Tuesday, February 1, 2011

Wait is necessary

The session of pictures is done, now Friday we will collect the results from the Oncologist, The technician was great when in the end he told me that I could go home, We have a lovely pictures here, in his words :) Of course those words does not mean anything but brought a smile to my face, I really appreciated the joke. But for sure with the intoxication of fruits and veges that I am going through the results must be very good.

The day past but left a heavy print in my mind, I have been tired and hollow, The fault is also from the diabetes and hormones, Always the hormones, nowadays I do understand the women so well. The best point of the day was a bath with fizzy soap that I offered myself and Olivia was invited.