Sunday, January 13, 2013

Blog to Book

Saturday: today it´s Daniela writing. I am aware that this is a special honour and great responsibility and I realize that it is not easy to find the right words to describe one of Helder's days.

We (Patricia, Ana Rita, Inês, Nuno and me) came to visit Helder with a special mission: hand over his blog that had turned to paper, becoming a masterpiece of collected thoughts, feelings, reflections, adventures, sensations, emotions, wishes, ambitions, countless moments of joy, laughter, frustration and victories, and omnipresent love and friendship. All this in overwhelming 1500 pages! Holding this huge amount of paper in our hands makes us realize how much happenend during these years in Helder´s, Justyna´s and Oli´s life, thanks to Helders effort and persistence in writing this blog. At first, he did not show much reaction when we presented the 7 books to him. Later, when he was alone with Justyna, Helder expressed his own suprise «All this? Did I write all this?».

Inês had prepared and brought lunch for all of us: delicious bacalhau. Mentioning the bacalhau made Helder smile, but then he did not feel fit enough to eat. In the afternoon, we sat outside for a while, enjoying the sun and a little bite of cake.

Later more visits arrived, Sofia came in the late afternoon. So this turned to be a typical scenario: Helder surrounded by his harem.
Oli and Daniel also had their full day entertainment, even a play session in the park.
Most of the time Helder is resting, though he is restless with uncomfort in the belly. Almost always he seems to be aware of conversations around him and answers back, smiles at episodes from the past called to his memory by Sofia and Ana Rita chatting.
For us who came to visit Helder, it was a good day: we had his company!
Our thanks to the family who always receive us with open arms.
 

Friday, January 11, 2013

1 Corinthians 13

It breaks my heart to see Helder so weak and fragile..  throughout the day different parts of this poem kept coming back to my thoughts, sometimes bringing consolation, sometimes breaking my heart into even smaller peaces..

Gdybym mówił językami ludzi i aniołów,
a miłości bym nie miał,
stałbym się jak miedź brzęcząca
albo cymbał brzmiący.
Gdybym też miał dar prorokowania
i znał wszystkie tajemnice,
i posiadał wszelką wiedzę,
i wszelką [możliwą] wiarę, tak iżbym góry przenosił.
a miłości bym nie miał,
byłbym niczym.
I gdybym rozdał na jałmużnę całą majętność moją,
a ciało wystawił na spalenie,
lecz miłości bym nie miał,
nic bym nie zyskał.
Miłość cierpliwa jest,
łaskawa jest.
Miłość nie zazdrości,
nie szuka poklasku,
nie unosi się pychą;
nie dopuszcza się bezwstydu,
nie szuka swego,
nie unosi się gniewem,
nie pamięta złego;
nie cieszy się z niesprawiedliwości,
lecz współweseli się z prawdą.
Wszystko znosi,
wszystkiemu wierzy,
we wszystkim pokłada nadzieję,
wszystko przetrzyma.
Miłość nigdy nie ustaje,
[nie jest] jak proroctwa, które się skończą,
albo jak dar języków, który zniknie,
lub jak wiedza, której zabraknie.
Po części bowiem tylko poznajemy,
po części prorokujemy.
Gdy zaś przyjdzie to, co jest doskonałe,
zniknie to, co jest tylko częściowe.
Gdy byłem dzieckiem,
mówiłem jak dziecko,
czułem jak dziecko,
myślałem jak dziecko.
Kiedy zaś stałem się mężem,
wyzbyłem się tego, co dziecięce.
Teraz widzimy jakby w zwierciadle, niejasno;
wtedy zaś [zobaczymy] twarzą w twarz:
Teraz poznaję po części,
wtedy zaś poznam tak, jak i zostałem poznany.
Tak więc trwają wiara, nadzieja, miłość - te trzy:
z nich zaś największa jest miłość
.

Thursday, 10 January

We had a difficult night. When the morning came we both felt like to shoot our eyes again and try to catch up on some sleep.
Helder managed to escape the reality from time to time, but for me the day was busier than normally, full of medical visits and practical things to be sorted out. In the morning we had the visit of physiotherapist who came to see how we could help Helder to be more comfortable and safe. Meanwhile Helder´s uncle brought for him the hospital bed with adjusted back- and leg-rest space, which was organised by the hospice nurses. All the family had a lot of work with re-arranging the space in our little ´appartment´ in order to fit in the new bed. In the right moment came around Helder´s cousin, Julieta, the heavens have sent her to give us a helpful hand and good advice ;) While Helder´s parents and Julieta were struggling with the furniture, me and Helder had another guests, firstly came our hospice nurses loaded with equipment sent by a physiotherapist and few minutes after arrived also doctor Paulo, our family doctor, who came to check how Helder is doing. For the first time since long time we had a good news, the antibiotic did its work, Helder´s lungs are clear and the level of oxygen in the blood have risen a bit! :) there are no words to describe surprise, relief, happiness and gratefulness in my heart after I heard that at least this is better.. :)

Evening brought again more stress and worries. It is not easy to respond to Oli and Helder in the same time. It must be so hard for Oli to witness Helder´s suffering and in the same time to be put aside while I am prioritising her dad´s needs over her´s..

In all of this we almost forgot that we meant to fly back to London today..

Wednesday, January 9, 2013

Loss and relief

After yesterday´s storms today everything was more peaceful.
There is no more decisions to make, no more crossroads, no doubts..

yesterday it felt like a loss.. it was hard to accept that we just cannot do more... the trip to London appeared for us like an opportunity for everything to still change for better, it was very painful to let go this last chance to try in some way take control over the things which are happening to us.. to loose the right to make a choice.. even if this choice was only an illusion..

today came the relief.. there is no more fighting, no inner struggle.. what we hoped to escape from by going to London is unavoidable, we cannot runaway from our destiny, whatever it is.. We tried to run away from it already earlier, by coming to Portugal, we hoped things will improve in here, we believed a miracle could happen.. and it still might.. and might not..  nobody knows what is awaiting us..

I am now close to Helder, over the noise from the oxygen machine, I can here Helder´s breath..

Tuesday, January 8, 2013

Difficult decision

It was a very intense day, too much to describe in here and too difficult to talk about... What is important is that we finally made the decision regarding our return to the UK, we are going to stay in Portugal. The journey to London would be very difficult for Helder at the moment and the risk is just too great.  

Monday, 07 January

It was a day to make a change, as soon as Helder woke up he decided to ...shave himself! ;) And it was not a normal shave, it was a whole ritual.. Helder didn´t have the need to shave since his second chemotherapy session in October, as all his hair fell off then. It took all those time for the hair to regrow. Today Helder´s dad proudly took the role of the traditional barber, all the family gathered on the patio in front of the house, Helder sat patiently in the chair with a towel around his neck and sun worming up his cheeks and Oli took care of the pictures. There was something very beautiful and touching in the whole scene, something very simple about love between father and the son..

Sunday, January 6, 2013

Cheese toastie

The Sunday brought more dear visits. Before lunch came again Helder´s cousins, Ana and Nini with their tiny princesses, Ana Luz and Maria Ines. This time they have been able to see Helder and Helder himself enjoyed a lot their company. He become a big friend especially with little Maria Ines, for a long time she sat happily on Helder´s lap and, whenever the smile has left Helder´s face, she kept calling his attention with the sweetest smiles possible until he cheer up again and gave her a smile back :)
After the lunch time we had the return visit of Suzanna, Carlos and Alexandra, who this time brought with them also Suzanna´s brother, Rui Miguel with his wife and little Matilde. We all made a trip to Albandeira and had a short bath in the truly summery sunlight. After that we said goodbye to Helder´s friends and went with all the family to Benagil. We sat on the beach watching Olivia and Daniel playing with water and sand. We soon learned that it was not an innocent trip, Helder had a secret plan in his mind, as soon as we arrived on the beach Helder asked for his favourite snack from our summer-time holidays - cheese toastie :)
Since we returned home, Helder is resting on the sofa, his body is very tired, but he doesn´t want to go to bed. Like yesterday, when his friends have been around, Helder keeps drifting away for a while and then coming back into alertness. Even if he doesn´t have energy to engage with anyone and anything in particular, Helder seems to really enjoy just being where all the family is and being a part of everything what is happening.

Saturday, 05 Jan

Last night, after everything was settled and Helder and Oli were resting in beds, I didn´t have anymore energies left to write the blog. The first thing that Helder asked me in the morning was of course: ´Did you write the blog?´ (!) :)
He is right, it was a little crime not to write the blog yesterday, as it was really lovely day, filled with joy and beautiful moments. Helder´s parents house become invaded again by an army of friends. Firstly arrived Ana Rita, Daniela, Pedro and Filipe. Not long after them came Jaime with his wife and son. And if that was not enough of friends, soon arrived Suzanna, Carlos and Alexandra. Quickly our quiet house was vibrating with good energy and laughter. Helder was surrounded from every side by people who love him. Even thou Helder was very weak, he refused to go to rest in the bed, he spent all afternoon and evening sitting in between his friends.  We all went for a while to the beach (something we haven´t been able to do for a week), we sat for a long time together in the patio, we chilled out in the front of TV, had dinner together and when it was time for them to go, we hugged and hugged and hugged.. :)

Friday, January 4, 2013

Oxygen

Nothing is permanent! After few very difficult days suddenly we had a better night followed by peaceful morning. Helder managed to sleep without waking up from 10pm to about 3am. Even thou after that started usual trips to the toilet, which kept Helder awake until morning, he started the day feeling really rested and having more strengths. The first good sign was that today Helder himself asked for the breakfast! :)  After lunch all three of us sat together in the patio worming up in the sunlight, it was really special and made us feel for a moment again like a normal family :)

The place where we are is amazing, it is like a little paradise. But the things are not perfect even here, everyday our patience and sence of security are shaken by the obstacles we encounter on the way to provide Helder with a minimum of medical support. Our staying in Algarve made us aware that the things we simply took for granted in the UK are not easily available in here. 

Thursday, January 3, 2013

Doctor´s visit

No energy tonight so will be very factual:
The doctor came today to see Helder at home. It was a big relief to have him around and see that someone is taking a good care of Helder. He found that Helder is fighting an infection, probably in the lungs, we got strong antibiotic to help with this. The bottom part of Helder´s lungs are filled in with something and not working, because of this Helder has very little oxygen circulating in the blood, tomorrow we should have the oxygen tank to help Helder breethe properly. The pain is causing Helder more discomfort so the doctor advised to increase the dose of the morphine patches and see if it helps.
Soon after doctor arrived, came also the nurses. It was great to have them all in the same time. Both parts decided to work as a team from now on to keep Helder as comfortable as possible for as long as possible away from the hospital. We will still have to go to hospital in Portimao on Tuesday to see specialist in paliative care and to be registered within the system, but it is more precaution and making sure that we do what is best for Helder. That´s it for now. Goodnight everyone...

Wednesday

We had a very difficult night, Helder had a lot of pain and discomfort which didn´t allow us to sleep. For most of the day Helder was trying to recover from difficulties of the night and spent many hours resting in bed, it seems that with every day he needs more and more of it.
In the last days Helder have to cope with more disturbing symptoms and since Monday we tried to arrange a home visit of the doctor. Today we encountered another failed attempt to find someone who could do it. The nurses from the paliative care are truly amazing women, they are so gentle, kind and supportive. They really want to help, the problem is they don´t have many available resources to use. It was very frustrating and also worrying to hear that the only way to see the doctor is to call an ambulance and go to the hospital in other city. It is not easy to get used to another system, the things in here are very diferent from how it is in England, it doesn´t mean that it is worse, it´s just very different and we didn´t work out yet how to manouvre well in this new reality. I don´t want to complain cause in the end Helder´s mum phoned a doctor, who is also a family member, and he voluntarily offered himself to come tomorrow to see Helder at home, so slowly things are moving on the right truck, in ways we didn´t expect.
To finish with a really good feeling I will show you a lovely pictures of Helder and his parents. Before lunch Helder managed to stand up from the bed and we all shared few wonderful moments in the sun ;)

[sorry everyone, picture have to wait, problems with computer :{

 

Tuesday, January 1, 2013

Lucky 2013!!!

 Whether we want it or not, for the next 364 days we will be living in a year with ´13´ in it! Lets only hope it will be a lucky 13 ;)
The first day of the year brought us a lot of farawels - in the morning we said goodbye to Shubhi and Tom.
They brought us so much peace and love, since they arrived in Algarve last Friday we shared so many wonderful moments together that it feels like we spend with
them much more than just four days. And yet it will never be enough of their company and we are already missing them.
In the middle of the day we gave a big goodbye hug to our Portuguese amigos - Daniela, Filipa and Luis who came yesterday to welcome with us a New Year.
They managed to awake in Helder very well hidden resources of energy and humour. After midnight they all had a great time :)
The rest of the day we spend within the family circle, we all had a lovely lunch together - Leta keeps surprising us with marvelous meals coming out of her hands.
It was great to see Helder today with more strenghts, enjoying his meal and spending more time of the day awake and out of the bed.
Now in the evening Helder is again more tired and with a lot of discomfort in the belly, hope he can have a good sleep.
 

Last night of 2012

 
(By  Daniela, Luis, Cristina and Filipa)
Helder asked us to write a few words on this blog. To end 2012 in a special way we had the entire Assuncao Family, Shubhi and Tom welcoming us to share a wonderful meal prepared by Julieta and Rosinda. Helder has spend this pleasant evening with all of us, between laughter and good food.

Olivia and Daniel also had a good time after a session of face painting.

To greet 2013 everyone joined on the Casa da Luz top terrace to watch the fireworks. Helder, full of energy shouted out loud: "Que desperdicio de dinheiro! (what a waste of money this is!)

Happy New Year to Everyone!