Happy New Year, happy 2018!!!




So that was 2017.

Pfff, what a year it was!

The year without a husband in the house after 36 years of marriage, including 20 years of being the hotelkeeper, if you understand what I mean.
The year sharing a very tiny pension with 4 people.
I got in contact with my university friend again, and we won't loose contact ever again. Got in contact with another one and didn't even hear a thank you after sending a photo of two middle aged men enjoying a beer. Well, we had a nice day visiting. Some nice memories, and the impression that some people never change.

Offline and online some friendships developed into great caring relationships, which prevented evenings of loneliness and enriched my life. The feeling of gratitude for being surrounded by such lovely people is very intense.

I survived another calendar year.
Left the second cardiologist, not knowing how my heart was doing. Asked for the new one, but didn't get a reply in three weeks, so that's one more issue to deal with in the new year.
But I've met my new cardiologist of the other hospital, so in due time I'll go to him.
Also went to nephrology when my kidneyfunction dipped to just above dialysis level and doctors were panicking. Saw two nice assistants which were socially very capable, but still have to learn that a risk factor isn't a cause without any evidence. So next year I'll see the nephrologist herself and we'll be talking about this.
I think tht my heartfailure undermined my kidneys, as the 1st cardiologist told me might happen, and the heartmedication ruined any chance of improvement and ignorance by the 2nd cardiologist lead to deterioration. He even withheld my kidney diagnosis. I was also told the dip was caused by inflammation. Well, at the time I had a kidney echo and it showed no inflammation. Nor did the bloodwork or anything else.
We had double time making the echo, it was a teaching session, so if there had been inflammation we would have seen it.
Often I like my medical background, but sometimes it's a curse. We'll see what the nephrologist says to me. I can always go to the other hospital.
Anyway, my kidneyfunction is deteriorating in a straight line down with dips.
I've decided not to want a life kidney donor, too much of a risk for the donor.

Found no paid job this year, but did a lot of work for the heart organisation.

  • Giving information and talks in hospital
  • Public speaking about the female heart, including TV interview
  • Organising events
  • Telephone service, which was a problem as I don't have the money to pay for a proper app-phone and -service.
  • Representing the heart organisation and the university hospital
  • Representing patients and watching of and advising in care-decisions at university and regional boards
  • Working for the regional magazine
  • Teaching at university
  • Giving workshops to last chance students, which touched my heart and made me feel so at home that I immediately made a job application. Alas, they're dealing with cutbacks and maybe even closure.

It was such a lot of work, that some weeks I felt like being in a fulltime job. But I also was able to see what I like and where my talents can lead me. Using what I've learned during life was a pleasure too.
Wouldn't it be great to use it for a paid job?

I've also faced quite some decisions.
The main one is that I don't want my husband to come home again.
I don't have a choice however. As long as I don't have a job, I have no money, and I can't move out.
With 2 kids who need financial assistance there is no choice.
Halfway this year he'll be here again. I even have to buy a new place for him to sit, as I changed the old large couch into a nice ikea thingy that is OK for us, but not for his weight.
I don't want someone here anymore who just uses my work and attention, and has nothing nice or fun or kind to deliver. Just irritation and stress.
So I'm waiting for the prince on the white horse to lift me out of my simple house and carry me to his castle as his queen (not as his housekeeper, that's another fairytale), compensating for the fact that I never ever sat on a horse. (Yes, there's a silver lining in everything.)
So any scotsman is welcome to beg for my hand. I play the bagpipes. A welshman is OK too, as I love the glowing hills and the accent, but I fear I've forgotten the few lines of Welsh which were taught to me in the past.

Yes, I belong more in an english speaking country. It's the language of my thoughts and the yearning that my visits to his WW2 family and friends brought me. I don't belong here.
I belong to the hills and the coast. The Outer Hebrides will be perfect.
But maybe I'll end up with a friend in Norway, embroidering a national costume for myself, walking the dog through the snowy woods, sheltered in a warm coat, with a sniffing red nose.

Oh I know, it's not about the place where you live, but how you live in yourself.
But when my kind neighbours moved the sounds of the others became worse, the neighbourhood is not as good anymore, the trees in the garden are outgrowing me and I can't afford to have them cut and removed, and I need, yes, need to be in nature.
I've done my bit in life, in the lives of others and although I intent to go on to be an inspiration for others, I also want to be a lot more 'me'.
I often remember how I felt when standing beside the Welsh castle in the grass, high above the ocean on the rocks. The wind blowing through my hair, and yet I had the feeling I was wearing a wide cape with a huge hood. My dad and his RAF friend later told me they had the same feeling, like they went back in time and saw me in a different light.

Well, sliding into 2018 has nothing to do with time travel.
It just happens and we can't resist it.

All I know is that it doesn't help to worry. But I do, money, job, leading my own life.
And I know that my health will go on deteriorating, an I will fight it. But I'm not afraid of dying anymore.
Don't worry, I'm not planning it yet. I want to realise a few dreams, even the impossible dreams.
I still have the feeling something brilliant is waiting for me, so I keep looking for opportunities, doors and a better life.

So all I want from 2018 is a job, preferably in the UK, and I don't mind if I'll be a reporter, journalist, psychologist or university lecturer, or maybe someone behind the counter of a small shop in a small community of island people.
It's that small white house with that loyal dog which keeps in my mind. The walks on the beach with the everlasting sounds.

May 2018 hold a symbol of wellbeing for you too.


Happy New Year!!!!

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Decision nephrologist


From a new one to a new one.
From better to best.




Today I went to see the nephrologist again.
I was very stressed.
I expected to see the nice woman, and it turned out to be a young man.

So I asked him if she was changed into the male version. He looked puzzled and then smiled: 'she's on vacation'/
'Oh, she should have planned her appointments better,' was my reaction, 'I'm very fed up with ever changing faces.'

They don't know what is the matter.
But the echo showed the right kidney is smaller than the other kidney, which wasn't in the past.

Together we agreed part of the kidney problems might be due to my heartproblems, which made my body shut down.
And as I observed a few times that my bloodpressure went down before the kidney's gave symptoms, at least part of it all can be caused by this too.

I asked for the dietician, but the team has a different idea.
So I'm referred to the kidney nurse. She knows a lot about food and diet too. So we agreed I'll try her, and see if she can deal with the other diet requirements.
And I will be referred to one of the staff nephrologists.
I didn't let him speak, for fear I might end up with one of the male ones and asked if I could go to the female nephrologist, as she was the one who diagnosed the kidney insufficiency.
He started to laugh and said that that was what the team wanted too.

They are worried about the whole issue as they consider me far too young to deal with this.
Puh, I'm 61.

I got a compliment that I had refused to stop Fosinopril, even though I hate the stuff, it's good for the kidneys,
We also talked about the new prescription of the cardiologist (Labetalol) and that I want better cooperation between the two disciplines. But first we have to wait to see.who will be the new cardiologist.

It was a pleasant consultation.
And I have to say that I feel a lot more cared for than at cardiology...after my first cardiologist had left. Even though the cardio-nurse has been very kind and nice.

But when going home I got angry.
At that cardiologist. He told me the last time that my kidneys were OK.
Good that I didn't tell the kids or anyone else, because I didn't trust him. It was not up to him to give the result of the echo, and he gave it wrong!!!
Even worse.... he missed an issue in the ECG, or didn't know what it was, or didn't care to inform me.
When my first cardiologist left I was very sad, but now I'm relieved. Better without a cardiologist than with one I've had.

47. DVD of the BBC-series: Great Rift: Africa's Wild Heart





I'm very impressed by the BBC series: Great Rift: Africa's Wild Heart
I love every moment of it.
The way nature is filmed is amazing. The effort the crew took to give us an insight in animal behaviour was huge. But it certainly paid off.
It's one of the few series that keeps me focused from the first second to the last. And makes me dream long after the episodes have finished.

The series is narrated by Hugh Quarshie, one of my favorite players of Holby City.
His voice calms me, and draws me in the film even more.

I think I can see this series over and over again, seeing each time new things, and never ever be bored.

So I think it's wise to have a DVD, so I can watch it when I'm in the hospital or very ill at home.

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Gone and back



So I did the urine collecting a week later.
When I collected the containers I expected one with a liquid or powder and one without. But they were both without.

The first day went OK, the second day my kidneys almost shut down, and as I didn't know if I could take a tablet to keep them going I took nothing. Maybe they can find the reason of the shutting down..

Had to pee in a little pot too. Pity...just a few drops. I was afraid they would tell me in the hospital it was not enough, but the nurse didn't even look at it.
She did the paperwork, and that was it.

Another nurse took some blood and off I went.

Had my eyes checked so I could order new glasses.
When the woman was ready she told me to come back later in the week. The results were so very much different from last time, she wanted someone else to check them too.
So: new appointment: saturday.

The rest of the day I did some chores, but I felt more and more cloudy in my head.
So at last I cancelled tomorrow.'s going with my son to the movieset.
It will be rather hot and I can't risk getting unwell. There's nothing to hide at the airfield.

In the evening my kidneys started to work again.

Pffff.

46. Each time they sound a smile of a friend enters my heart.



Yesterday I was talking with one of my daughters about the new friends online that are such a huge support, just as my offline friends.

Some offered to go with me to hospital appointments, which is very kind.
Right now I don't need a person to go with me to talk to the doc, because going by myself makes me more focused and more critical.

But I don't know what I need in the near future.

I said: 'Sometimes internet is not as good as writing letters, otherwise I could put their letters of support in my bag'.

Don't know what happened, but suddenly I had to think about my charm-bracelet.
I always took it with me when I had to sing solo with the choir. I had a wonderful voice, but I was always third in line because two other girls were far more confident.

Maybe it's a good idea to start a new charm bracelet.
Charms need not to be expensive. I already have a bracelet to put them on.
And each time they sound a smile of a friend enters my heart.

What do you think?



.

Passchendaele 2017





When you died
by the need to kill
and disappeared for forever
in the mud
of war

when you died
a father, a partner, 
a son, a brother,
and a dear friend,
you were just gone
and none even knew at the moment

The hell created by others
because the lives of you all
are just part of a game
of ego
and false power
took all you stood for
and more

And there you are
a name on a wall,
no grave
but you left us far more

You left us our future
our new generations
You gave us peace.



© Syl

So I try



Today I started to feel better.
I'm sure it was due to all the well wishes ( ;)).

My head was not as clouded and my muscles could deal with movement longer and with less pain and tiredness.

I think the shock of being at stage 4 already and the realization that I have to choose for dialysis or refusing dialysis, and that it all means that when things won't improve I'm going to die sooner than later is fading.

Refusing treatment is not an option.
Dialysis at home is not an option. Not enough room for the machine and not enough room for the materials.
So the choice is no choice: hemodialysis at the hospital. My hospital provides the option for the night too. So that's good.

And that I feel a bit better helps too. It means things can improve.
Maybe I need to fight a lot less at the moment.

I'm not afraid to die, it's the road... that bothers me. It's that everything is about money and not about care...that bothers me.
And it bothers me that I'm alone.. no shoulder. Oh, I can do it alone. I know that.

But walking.... balancing...the thin line between being OK and depression... keeping watch I don't drop to the wrong side. Depression, self pity, they're so undermining. I can't let them happen to me.
It's a constant battle.

I love to be alone and do my things, but when I'm alone I feel lonely.
It's for a part because I don't feel happy in this house anymore.
And the spirit of: 'I'm going to survive that overall heart prognosis' is challenged a bit too much by the renal diagnosis. And by thee fact that I can sit on the couch and have great plans to clean and tidy and change things and when I stand up I'm so horribly tired.

With everything that needs to be done around me, and only me to do it, it's a vicious circle that needs to be broken.
So I try to do at least 1 thing each day, even if it's only the dishes.
But it doesn't tidy the house...
and it doesn't ease my mind.


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Admin problems -2-



The appointment for the heart echo arrived.
It's scheduled at the same day as the visit to the cardiologist. So there won't be a written report available during the consultation.

The health insurance was also present in the mailbox. It was agreed I would pay on their site, but  I had to contact them again because there was no payment link.
So I got the bill in the regular mail.
Those people are very very sick!!!

Well, at least I can pay and maybe then all issues will be finally solved. After precisely 6 months of troubles.

Bu I have to solve a problem here at home first: I can sign the card, but it has to be sent in a special envelope.... and I have none.

Now the rent-problem needs to be solved.
I will block payment for the next month tomorrow. I don't want  repeat of the problem.
Something, somewhere has gone wrong.
I paid, like they instructed. My daughter has read the letter a few times too, so we wouldn't make any mistakes.

I've decided that when they persist, I will go to a social worker. Not because I need that, but I want them to know there is some kind of extra eye looking to what they are doing.

Society is becoming more and more anonymous.
We used to be able to walk to the organisation that collected the rent. When something was wrong, we could talk to a real person.
Now we can't go to the office as it's at the other side of the country.

It makes me nervous, especially as they didn't even bother to confirm the emails.
I think it's impolite.
Well, maybe that's my age.... :)

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...and I played calm.



People don't like to read blogs about depression, illness and pain, unless they suffer from the same.
I know that, but I still write about my days, because I think it's important to give an insight what goes on, so people are able to help and support someone to feel better, or live through it too, knowing they're not alone.

No news on the subject of the financial administration. I bugged the organisation that collects the rent to confirm receiving my mail, first by using the regular email account and then I went to the part of the site which is aimed at doing business with homeowners and got a confirmation there. It doesn't mean anything, but I can show I've been busy with them.

Was reading on their site a bit, as they took over the renting out just a month ago, and read we don't have the income to rent in their system. I hope it's for starters. We're in the house over 30 years now.
I want to move but can't find anything I want: a small house near the sea.

Reading this caused a lot of stress.

The past months I've been fighting such a lot, that I'm tired and want some relaxation.
Stress piles up.

This morning my second son came to drive me to the opticien to get my eyes checked.
Before we collected the materials for some tests at the hospital. A cranky nurse gave the stuff.
I've decided to do the urine tests next week. Pity when the results aren't available in time. I couldn't have done it this week.

My eyes aren't checked. There were so many people waiting.
Did some looking around in the shopping center. Found two small books. The covers are of the same fabric and colours as my fabric backpacks. Kind of mexican or peruvian weaving.
Something nice for myself...need that.

Then we went home and when we wanted to leave the car the motor wouldn't stop!!!
My son was completely stressed out, and I played calm.
He managed to stop it after all, and immediately called the friend who is the mechanic.

We need the car this weekend. One of my daughters has to work odd hours at a village that can't be reached by bus in the weekend. And my son needs to go to the airport where they do parachute jumps. This weekend is very important, because they'll work on a movie.

I was glad my second daughter was visiting. She's a very calming person, lots of smiles, and lots to tell. We had a nice time.

In the evening I looked for information about what I can expect from the nephrologist and the preparations for dialysis.

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Intense afternoon



The past days I've been thinking a lot about the implications of the renal insufficiency.
If it's really as serious I might be on dialysis within a few months.
Dialysis is not very well tolerated by my heart, so I will deteriorate fast.
And when it happens there's no escape this time.

It makes me feel sad and a bit depressed.
I've cared for other people all my life. Worked hard to change things for the better in all sorts of areas: political, medical, educational, etc etc..
I'd expected this time would be a time for me, an opportunity to travel, have fun, to live life to the fullest and move to a little house near the sea, or even move to  little house in the UK.
Instead I have to juggle with money and can't even go to town here or get groceries across the border.
It's so sad.

Today a friend fetched me to drink a cuppa in town in his favorite coffee bar.
It was a nice little shop, right near the HQ of the paper I used to run, so I even enjoyed the ride, seeing all those well known places.
The coffee was great.

We talked a lot about the problems we're facing. He's got serious heart problems too.
Gave each other advice.

Telling out loud, what I'm facing, makes it even more real than it has been the past days.
I'm feeling a strong inner feel of wanting to speed my life up, as if I don't have enough time.
At home I want to clean and tidy things, like I want to make the house prepared to be without me.
And I'm starting to feel tired, tired of fighting too.

At the same time I want things to go on the way they are.
So I've accepted an invitation for public speaking for family physicians and one for heart patients at the same day at some kind of information day at a hospital.

It's strange to experience all those extremes of feelings.

For the second time in my life I was asked if I ever find some rest.

The first time was long ago, when a dear friend asked where I had my inner home, by whom I could find it. I didn't have an answer.

Now I had an answer: I find it when I walk near the sea (that's why I want to live there) and I find it with my friend in Belgium.
But when I was at home, alone again, I realized that it's not only about finding rest. When it's about resting my head on another shoulder... there is none.

That's even more reason to move to sea....

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