04 July, 2013

Mourning on hold

One week has passed and a new one is started here at Hospice Lovisenberg. We get unwanted insight into the state of "critical but stable".

Finally a well deserved nap.
Anja still breathes deeply. It takes some time between each breath when she sleeps. Although it feels very long when she skips one or two, there is no sign that the end is coming.

We detect small changes. We get detailed explanations. We are looking for shortness of breath. We only find new pain thresholds, they get lowered, as the dining table is on its way to becoming a salt board - cut a little here, a little planing there.

Anja is not often conscious. She can barely speak clearly. It is usually necessary with two heads to understand right and wrong and put it together into something that matches the surroundings and remedies. Or humor.

Hospice Lovisenberg has become a home for us. Our "Hotel Cæsar" [Norway's longest running TV soap ever]. A family drama. It has become so familiar, that Anja sometimes think we are at home in the apartment. Not bad for a 37-year-old. Though insignificant details in the big picture.

The rest of us have begun to "settle in" here. That is, we are no longer so grief-stricken, touched, sentimental. We take longer breaks out of Anja's room. Yesterday, our 13-year-old had to go shopping for a while. Three floors of sales at H & M. Anja wanted us to walk. We drove.

Hannah got a cup of
non-coffee at Starbucks.
When we came back, grandmother and aunt were gone a long while. They came back and reported that they had been out for a walk, including the Karl Johans gate. I had to check, the car keys were in my pocket.

In the evening I had to read new comments from Facebook and the blog for Anja. It was not easy to see her reactions, only when she told of an individual, and when she asked for someone specific. Otherwise, she is somehow slightly done with us who have been hanging here for a week. There is more life and laughter for new faces. It is actually good.

Our grief is on hold. We have vented it a bit from before. Now there are others who should be allowed to see her. We can facilitate, comfort and explain, ensure that there are worse things for both Anja and us than to let her go now. The disease takes its toll, it scares but does not deserve our undivided attention.

There are some good things with this taking so long. Today more visitors come from Anja's native grounds, the tip of southern Sunnmøre, with no connection to the mainland, and with a clear view to Stad. And outside the rain falls in light air.

02 July, 2013

I am still here

This evening Anja had enough energy for some time with her iPad, both for reading and writing.

I sleep a lot now. But I manage to stay awake for a little while. Then we talk about everything and nothing.

I can not walk anymore. Any distance from bed is now impossible since my legs can't carry me. They use a patient lift to move me. I just have to accept it has come to this.
It is good to be in place with good helpers. I also have a catheter inserted so I don't need to rush to the bathroom all the time since I am put on strong diuretic medications.

The popping sounds in my head are still with me, but not as intence as before, and only when I am tired. The seizures and cramps have returned, they also come when I have strained myself. They're just not as strong as they were before I came here, but I am not either.

Tonight I will try sleeping on an air mattress. Hope that will be better for my sore back.

01 July, 2013

Let go



Let me not hold you back
You have other places to go
You must go on your own
It is soon we both know

Let my hand not call you home
You have elsewhere to call home now
Where you will wait in joy
Let your hand let me go

30 June, 2013

Greatness in little things

When you reconcile that life will reach its whole, there are no longer such a thing as a little thing.
Last Friday, the Brystkraft FB-group lit
candles for Anja in a little church in
Kleinkirchheim on their group trip
to Austria. (Photo: Lill Thommesen)

Anja had a waken evening. We talked about little things. Read the comments from the blog and Facebook, and she tells a little about who is who and what. It is touching how many lights are lit for her out there, and we drown in hearts and hugs.

It is not only easy to give Anja a hug. Not from so many people. And not so big hugs as many write about. She wants to be scratched on the shoulders and legs. See, that is something no one writes about!

Today Anja stopped eating solid food. She tried a little tomato soup, very little. But she ate a popsicle. But it had to be peeled of its frozen chocolate topping first.

Yesterday the man was commanded to drop by at home. Hannah has become a big girl, and mom came to think of a nice gold ring Hannah had to get right away, a small one that may suit already.

Mother had put it on the ring finger of her only daughter. Maybe it does not sit properly yet. But on the middle finger, thought Hannah loud. There it fit well.

On the whole, our oldest child has become a lot more responsible and considerate in recent weeks, especially in recent days. Mature. Much use of voice, but suddenly easier to get response when we ask her to save her voice and our ears.

And those that used to be cat and dog, have been sister and brother to a greater extent. It's good to hear for a mother who worries about what will happen when she can not be there and speak up.

It is less than two years between the girl and our oldest boy. He is the quiet and contemplative type. He has the ability to be happy and joking between serious moments.

He is of the opinion that he will not deal with the inevitable. His focus is that there must be a way out, a solution. He is angry, but keeps his integrity. He just wants to be heard, and then he moves on.

Now it was time for him to come home, he found out. With the help of our wonderful neighbors it was possible too. He came from a tent camp on the other side of the country to a makeshift dormitory at the hospital. He needs a day or two at home to let reconciliation sink in.

And Anja still takes each day as it comes, so she almost always ends a blog post. It has no other meaning now, even though everything is all about medicine, relief, sleeping, long-long dozes, obvious steps closer to a blessed end.

It is not for nothing the priest reads at the baptism and burial, "God bless your coming in and your going out." The going out is already blessed. One lives as well as a lifetime before one can come to terms with the blessing. And when it comes, then Anja takes it aswell.

29 June, 2013

A daze

The world stops for a while as a life finds its going out.

Anja is still with us. We thought she was leaving Thursday night when she felt a pressure in the chest and had trouble breathing. She was frightened, but was awake and full of humor when the kids came.

The children were supposed to sleep at home that night, but the two oldest were allowed to choose. They wanted to be with their mom.

The doctors increased the amount of anesthetic and sedative drugs, and Anja were stable. It must be this thing called "critical but stable". She dozes more and more, talks less and sleeps a lot.

When Anja decided to ask for admission to Hospice Lovisenberg, she had seizures with cramps in her face and in her good arm. She was fully conscious and was able to keep up with what happened and everything that was said around her, but had no control over herself. She also had fits of laughter.

The doctors here have not seen such seizures before, but thought it was most comparable with epilepsy. Stesolid stopped the cramps, and now Anja misses her laugh attacks. "No, the entertainment here is pretty bad," she said laconically.

The waking moments with clear voice becomes rarer and shorter. We learn to understand what she says in her daze. It is mostly short messages about what she needs help with, but also practical reminders on agreements.

Today Anja "got up" and laid down in the armchair. One can Clearly see her liver quits working. Now she must also have the strongest medicines for itching. While she has eaten some watermelon and dinner the past few days, the nausea got the upper hand today.

Now, at noon, she also started hearing "plopping" noises inside her head. It irritates her cruelly. She initially thought it was messages on her iPad while I thought it was my phone. Or one of the others, it is more than enough phones, iPads and iPods here. But no one had new messages.

It's been a while since Anja was active on Facebook. She tries to read but have to give up pretty quickly. Says she can not focus. That is understandable. But she does not complain. I give her summaries of comments on our Facebooks, the emails, the blog and my twitter.

Old «Porkka» has seen its last repairs.
I must tell you about what moves her most these days: The last time she was admitted here, the ice machine was broken. She sent an email to the Cancer Society where she explained how important it was for the patients here.

Wednesday came the answer: they had found a sponsor and provided 25,000 NOK for a new machine, thanked her for the initiative, and said that they had already made ​​contact with Hospice.

Yesterday they received the letter, and the head nurse came by to thank Anja that she had managed to get it. Anja cried and said she had hoped to get to see that what she wished came true.

She has managed to get done with many things.

27 June, 2013

Alleviation

Anja is back at Hospice Lovisenberg. She decided early on that this was where she would be at the end.

This time Anja got a big room. Last night our four year old slept on a mattress on the floor in her room, while her sister and mother were mostly awake. My mother, Hannah, Simen and the cousins got to sleep in the large living room.

It's called LDS Hospice Lovisenberg - Centre for relief and life assistance. Anja was admitted on Wednesday.

Now she has a PCA pump and she sleeps well when she sleeps, and is awake and clear when she does not sleep. But she sleeps and dozes off much more than before.

Anja gets a lot of care and she does not need to push her legs to the limit. She should quit walking long ago. Here she can pull the string and hands and aids are at hand.

The children and my mother are now based at our house. Because they want to. And they need to as well. But they are all wellcome at Hospice Lovisenberg.

The staff here were pleasantly surprised that all nine of us followed Anja. The children sound like kids and then some, but all they tell us is that it is as should be.

Otherwise we try to use the time as best we can. There is still life. Still time for goodbyes. Still something left of the end.

24 June, 2013

The end is near

I'm sitting in the living room on my chair. I have my family around me. All that remains now is the end.

I go in and out of life. Sometimes I get lost in a daze. While I'm away, I hear everything that is said. It is weird. Feels like an intoxication, the body is completely gone, I can not do anything, just exist. Sometimes it lasts longer, sometimes shorter. It comes more often now.

The disease is in its final stage. I hurt both mentally and physically. I can take pills for the pain, so I do not hurt. I have family here around me and get the help I need, and that is good.

But the pain in my heart no one can take away. The pain and sorrow because I have to say goodbye to everyone. All those I am fond of pain and grief that no one can understand, no one can take away.

Why! Why me.

23 April, 2013

The Place To Be

It is good to be able to share experiences with people in the same situation as me.

One more Tuesday, one more meeting at Lovisenberg, and today it was a little special to go there. I decided I would tell the others about my situation right now. I would also say something about how it is for me to come to Lovisenberg, and a little about how I feel about how the others receive me.


So I sat down and wrote this letter:

Every Monday before I go to bed, the last thing I think about before I fall asleep is that "tomorrow is Tuesday"!
And Tuesday for me is a lucky day, because I'm going to Lovisenberg.
Here to be with all of you good people.

At first I thought a bit whether I was going to continue to go here
for I am like the little girl here, I'm the youngest.

But it did not take many weeks before I found out that this was the best place to be.
Never before have I met so many great and wonderful people,
and never have I experienced so much care and love.

My health has gone up and down in the time I've been here.
When my days have been heavy, you see me,
and you always come with words of comfort and good hugs.

To me, you all mean very much,
and in the future I know I'm going to need you more than ever. 
On Thursday,
which I thought would be a normal day with consulting my physician and another round of chemotherapy,
did not turn out as I had expected.
 
My physician did not have good news for me,
and then I got the brutal message.
Now it stops,
no more treatment,
Now the disease is in charge.

I do not know how long this will take,
But I choose to live each day as best as possible,
and rejoice that I get to be in fairly decent shape.

I wanted to share this with you today because you mean so much to me,
and I know you're there for me and give me the support I need in the future.


It's not easy to be strong when courage fails.
It's not easy to keep your spirits up when the tears will prevail.
It's not easy to look ahead when you do not know.
It is not easy to find comfort in the positive now everything just looks dark.
- But it's good to know that one is not alone. 
Good to know that one does not need to cry alone.
Good to know that one does not always have to be strong.
Good to know that others can look ahead with you.
Good to know that there is someone who can think about you.
Good to know that you have a shoulder to cry on.
- And the most important thing is that there comes a day tomorrow
- A day to enjoy.

I did not manage to read it myself, but an employee read it for me. It was good to get these words said, and I got lots of positive feedback.

05 April, 2013

A Fairly Good Start

This chemotherapy seems to wait with breaking me this second time. I dare trying a home visit for the weekend.

A sculpture in a niche in the
corridor wall on the third
floor at
 Hospice Lovisenberg.
Weekend. Yesterday I got my second dose of doxorubicin, and my condition is pretty good today. The last few days I have not been able to do much, but yesterday and today I have been in pretty good shape.

Today I managed to do most things myself, and I feel so well, that I chose to go home on leave for the weekend. Of course I want to be with my family as much as possible, so the choice was not that hard.

Before I went on leave I got the confirmation that I have to take Fragmin injection every day for the rest of my life. It's because I'm not as active as before, and the risk of blood clots increases.

Since I do not have two healthy arms, I can not inject myself. I would probably have managed to make it in a way, but I'm really a bit too wimpy.

My husband got a crash course before we left. He put today's injection, and it went very well. I felt nothing. A bit strange with these injections, sometimes it hurts like crazy, and other times I do not notice anything.

We have not made any plans for the weekend, we'll see how my condition turns out, but it would be nice to get out a little.

04 April, 2013

One last chance

One good day was all that was needed to give the chemo one more chance.
Quadrupling the Medrol dose
put a distinct shape of the face.



Thursday again and time for another round of chemotherapy. I have long thought about whether I should have any more, and I got a little extra time to think about it, since I got a week off because of Easter.

The days since the first treatment was real tough. and I thought that now I could bear no more. No one could tell me whether it was side effects or the disease itself that made me got so much worse. I also received antibiotics at the same time, so it was most likely a combination of many things.

I get better pain relief now. On Tuesday I was feeling well until the evening, when I got severe headache and threw up, and Wednesday morning I was not much better when I woke up, when I had an appointment for CT of the lungs.

The CT should rule out a blood clot in the lungs, luckily there was no such thing to be seen. Then I will not have to get Fragmin injection any more, yippee. But I did hear from someone else, that we who have advanced cancer should take Fragmin for prevention every day, I will discuss it with my doctor.

Otherwise, I have a better appetite after my dosage of Medrol is increased significantly. It also seems that it helps against both headache and nausea.

And today: a new round of chemotherapy. I decided to try one more time. I have a feeling that it will go better this time, because none of my worst pains the last week is on the list of known side effects of this chemo.

As I sat and waited for the results of blood tests, I met my oncologist, who wondered how I had been recently. He agreed that it was wise to try once more, but said that if I got the same pain as last time, I should seriously consider quitting.

Now I just hope that everything will go smoothly and that I should not get pain. I hope that I'm able to take all the treatments until the next CT, for think if it is this cure that will work.

01 April, 2013

Fighting uncertainty

It could have been worse. It will get worse. Worst of all is uncertainty.

One day at a time, that's the way my life is now. I can not promise that I will be better tomorrow so I can do what I could not get done today.

Sad it is that it should be like this now, because I had been looking forward to a spring and a summer when I should be full of energy and finally get things done that have had to wait all Winter. It is not certain that it needs to be like this, so I take one day at a time.

I'm here at Lovisenberg a while longer. I have not yet gotten control of my pain. When some pains are gone, new ones pop up.

The last few days it has gotten more heavy to breathe, and I get Fragmin injection to prevent blood clots in the lungs, as a preventive until I have taken CT of the lungs, probably tomorrow.

I think a lot of the week to come. Thursday is approaching very fast, and it is intended that I should have the next dose chemotherapy. I get great support here on Lovisenberg, and I've been told that I will not have to take the big choice alone. Everything will be discussed thoroughly, and the important thing is that I will not be in pain. I am so happy for the great care I get.

Today I also had a visit from my family. It was good to see everyone again, even if it's not so long ago we were all together. I notice that I get tired more quickly than before. It's not so late at night until I find the bed, and usually I sleep well and very heavy.

I hope that the coming days will be a little easier, and that I can recover so much that I'm tough enough to try a new round of chemotherapy.

31 March, 2013

No Easter For A Worn Body

The pain decides most. Fatigue the rest. The decline goes so fast it's scary.

Now I have been here on Lovisenberg since Thursday. It has been good to be here, and I'm getting good help. I did not want to go away from the family at Easter.

I am thinking that this is my last Easter, and I really want to be with my family, but when my form is so bad, and I do not have so much to offer, it's best to be here. I'm allowed to go on leave, and Easter Eve, I was at home. This year we celebrated the day with our neighbor on the first floor.

The kids had a good time with the Easter egg hunt and treasure hunt. Fun to see everyone from the youngest of 4 years to the oldest of 15 worked together to solve the riddles. It was a nice day. Sad that it ended so abruptly for me. Suddenly my body just couldn't keep up any longer.

I just wanted to sleep, even though the time was barely eight. Since then I have almost only been sleeping. I'm all out of energy, and my body is completely exhausted. Last night I could not endure the ride back, so I slept at home. It's not fun to be so tired that I can't keep up with things, and it's scary my shape is declining so fast.

I came back to Lovisenberg at about 12 o-clock. And I slept almost the whole time since. I hope that I will soon have a little more energy, and I also get rid of the pain soon, they come and go all the time. Now I have turned up a bit on the basic medication, and I hope it starts to help.

The next big question is whether I should accept the next round of chemo. We have begun to address the issue with doctors and nurses here. I'm not quite ready to make the choice yet, I need more time.

There are still a few days left until Thursday, and it could be that the form is a little better then. Now I take one day at a time.

27 March, 2013

The Right Place to Collapse

It's nice to get help without having to ask for it.

Yesterday, on Tuesday I was on day ward at Lovisenberg. I was really looking forward to the meeting, and I put all my effort in getting there.

The taxi ride there went fine, but when I came in the door, I just collapsed completely. It was not the worst place to collapse, because I got lots of good care. 

It was the pain that was the worst, and nausea. I was given morphine and antiemetic intravenously, and eventually I was able to recover a bit.

I was way down, and I cried a little. I talked a lot about what I had been thinking about the last few days. I talked about how I was and that I could not bear to have it the way I had it now. And about whether to continue the treatment when it just hurts.

I managed to put into words that I might soon have to make the choice that I no longer want to have more chemo. And I could say that I think it is so difficult that I alone should be facing such a choice. Am I a coward because I do not want any more? Is it just for my sake I suffer through this here one more round? Why should someone be subjected to such an inhumane dilemma?

Sure, I'm tough, and I say to myself that of course I'll stand in it. Shall accept all I can get until the next CT-control, it could be this chemo is working. But at what price? And how long will it prolong my life?

Is it right that I should have such pain and be so tired the time I have left? Is it not better to allow me to drop it? And if I decide that enough is enough, can not all then understand and accept that it is my choice. My doctor supports me no matter what choice I make. I will live the rest of my life as good as possible.

Today I got a call from Hospice Lovisenberg. They offered me to come and stay at the care ward. They saw yesterday that I was in pain, and they wanted to help me. Help me to cope with the pain, and to talk through all the difficult choices I am facing. My wish is that I will feel as good as possible, and it's good when someone offers the care I need.

Most of all, I want to be home, but no one has it good when I hurt. I'll still be celebrating Easter with my family. I get some leave from the hospital at Easter, but I accept to stay where the best help is to be found.

24 March, 2013

Agonizing choices

Now I'm a little tired and somewhat bored. The new chemotherapy begins to show its true colors.


The first few days I did not notice any side effects of doxorubicin at all, and thought that this would just be easy. But as the days have passed the shape is just falling, and I just liked to give up the entire treatment.

I felt the pain for the first time Friday night. It is most joint and muscle pain and headache. It has only increased since. For the first time in a while I take extra painkillers. It did not seem like anything would help this morning, so we called the Cancer Centre at Ullevaal. The best was to combine paracetamol and ibux. In addition to my regular, strong painkillers.

Have I reached the bottom now, or is it going to be even heavier? Of course I hope the side effects are the strongest right now, and that the only way is up from now on. Luckily I have a break from chemotherapy entire Easter, which is a good chance to recover, but what about when I should have chemo every week?

I want so much to be tough and say that I will manage this. I would not say no to something that might work and give me more time, but is it right that I should be in pain, being uncomfortable and not enjoy the time I have left?

The choice is mine, and I can say no. A no from me, then it stops. Everything is my choice. I choose to try, and I choose to hope. Cling on to a last little hope that the chemo is working, but it costs. I try as best I can to be strong, to endure all the pain and accept that I can not bear the same now as before.

22 March, 2013

Poison

Then the new chemo have worked in my body for some days, and I have not felt anything from it before this day.
Will it be the last Easter?

My body felt a bit heavy when I went to bed yesterday, and when I woke up today I had severe muscle and joint pain. Not what I wanted most today.

I had plans for a nice shower before my physical therapy today, but I just had to lie in bed and wait for the treatment. Luckily I managed to get rid of the pain using Panodil and only a little morphine, so it is livable. If I don't get more problems than this I will probably endure this treatment.


Otherwise, we are in the process of decorating for Easter. Trying to make it nice and a great memory. I think probably this is my last Easter.

It's a little tough when the doctor started talking about the rest of my life in terms of months, and that if there was something I would have done, I must do it now and not wait too long. I was a little scared, but I do not intend to give up so easily.

I think I probably have a bit more time to live, and of course we all hope that this new chemo will give me extra time. For a great summer I will have. And that I will enjoy.


20 March, 2013

Tough Hope

What to say? One step closer to death? Or still one more possibility remains.

Red chemotherapy is always "fun".
We all had probably hoped that Afinitor / Aromasin should help and give me a little more time, but it has not helped at all. In fact, the tumors in my liver has only grown, and new ones have emerged.

It's tough getting messages like these time and time again, but I've gotten used to it, if one can put it that way.

Now the doctor has one last card in his hand, Doxorubicin. A weekly chemotherapy reminiscent of Fec. So now we hope that it works. If the side effects is too much for me, it stops. I can only hope.

I got myself an extra stay at Ullevaal Hospital. On Tuesday morning when I woke up and would get ready to go to Lovisenberg, I Became acutely ill. I just threw up all the time. I soon became weak and could not do anything.

I was more or less unconscious and could not make myself understood. I had to go to hospital to get intravenous fluids. And I got better pretty quickly.

The last few days I have also had a pressure in my head, and I have had severe headaches. I even thought that I had sinusitis, and CT of the sinuses and head showed a severe infection, so now I have also started on antibiotics.

I got the first dose of chemo today, soon after the decision was made. I was still in good shape afterwards, so I was allowed to go home. It was good to come home again. For whatever happens, it's best to stay home.

17 March, 2013

Never reached the door

This weekend did not turn out as I had imagined.

I have been completely out of shape, and have not been able to really do anything. I wanted so much to do something.

I had decided that this weekend I would go to a shopping center and look around a bit. It's been a long time, and I had plans to find some Easter decorations. But I could not.

The weekend has been characterized by fatigue, a body that barely managed to stay upright. My head has been absolutely crazy, and several times I have been on the verge of collapsing completely. I slept a lot too. I have not managed to wake up before 11 am and it has been hard to wake up.

I just have to expect days like these, but I do not like them. I get scared and worried too. Does this mean that the disease has progressed further? Have I become sicker? Now I just hope that the week will be a little easier and that the pain and the dizzying feeling I have in my head will be gone.

15 March, 2013

The Waiting

When you live with a serious illness, it is not always easy to be gentle and patient with the loved ones.

"The reason is that I'm waiting"
It's easy to take out all the frustration and anger on those you are most fond of. Afterwards, it's not easy to go back and apologize, "I did not mean it like that. And I did not mean to get angry." And for children, it's not easy to understand that mamma gets mad and yells for little tings.

Then it is extremely important to explain why you did what you did. Tell them that you don't have it easy, and that it is not the child's fault. Explain that you are easily upset and annoyed because you feel sad and maybe a little bit afraid because of the disease.

This is how I feel now. I get angry, I yell and I have no patience. I am not myself. The reason is that I'm waiting, waiting for the results of the last CT scan, waiting for answers that have everything to do with the rest of my life. If the medicine have worked and if I get more time to live.

It is inhuman to wait like this, it shouldn't be allowed. And it's not fair. Who could be her usual self in such circumstances? Could you? Now I just hope this week goes fast.

14 March, 2013

All that is left

Have you thought through everything? Are you comfortable with the economy and insurances? And you know what happens when you are gone?

Not everyone thinks about the importance of insurance and how important they are for yourself and for those you leave behind.

I did not think about insurances, except house and home insurance. When my husband and I refinanced our mortgage, the bank wanted to talk to us about insurance, and we signed life insurance, accident insurance and disability insurance. Lucky for us, because a year and a half later I was sick.

And now I get my disability insurance money each month. When I'm gone, my husband gets the life insurance money. It's good for me to know that the family will not be left penniless.

What many do not know is that the heirs also inherit debt. Student loans are the only debt that is automatically deleted [in Norway] and no one inherit it. It is important to ensure that those left behind do not inherit additional sorrows.

A life insurance policy that covers half of the mortgage loan and then some may be what is needed for the family to manage to live on. It's scary that sheer luck makes the whole difference between haphazard and the certainty that they can keep their home and their own income.

13 March, 2013

Just ask, I won't bite

"Are you okay?" - "No, I can not complain." Isn't it much better when those who ask really mean it, and takes the time to listen.

"How are you?" "Are you okay?" It's usually such questions we get we who are living with a serious illness. And not everyone is thinking about what they really are asking for and they do not always have time to listen to the answer. "Yeah, I'm fine" and "yes, I feel quite well."

Maybe we should answer honestly, say that "no, unfortunately it's not good at all. I feel absolutely horrible, and I do not know what to do anymore."

Some are too afraid to ask. Some are uncertain about how to face a seriously ill colleague. Some seem uneasy, evasive when they meet us. Some people avoid us altogether.

The worst is perhaps those who are not afraid to ask, but who still are afraid to getting answers. Let it be said once and for all: It is not dangerous! It is better to ask or to tell that you do not know what to say, rather than avoiding the person.

I keep getting told that I look so good and it's so nice that I'm up and going. It's nice that people think I look fresh and alive, for it would have been sad if they think I looked dead.

I try to keep up as best I can and keep my mood up. Today is not the best day, and I do not feel completely on top, and yes, I look tired. And people ask how I am. If you really have time, I'll tell you how I feel. If not, then do not ask.

11 March, 2013

Trial by time

Once more there is a «then the day has come». This time it will be longer to wait.

Not only contrast fluid.
Today it was time for CT of lungs, abdomen and pelvis again. I have become accustomed to this examination, and it usually goes smoothly.

The examination itself is over in minutes, but it is what I have to do first that I don't fancy. I have to drink one liter of water in the course of an hour. And I just hate water served in a plastic mug and a disposable plastic cup.

At home, we are spoiled with good water. The water at Ullevaal does not taste good. Usually it is too warm, and I only water when it's freezing cold. As a rule, I manage to squeeze in my 7 dl, and that's accepted.

Then I'm called in for the CT scan, but first I must have an intravenous cannula for contrast fluid. It is not always easy, and there are only a few who manage to get it right at once. Today it went right at the second attempt, and then the whole scan was done within 5 minutes.

Now it is time for waiting. That's the worst thing about the whole thing. Why do I have to wait for many days on the outcome? And this time I'm a little extra "lucky". For 11 days I have to wait. The patience is put to pretty tough tests, especially this time. I do want to know now if the medication has worked. I want answers now. I just hope that the days up to 22 March goes fast.

I have no sense of whether it will be good or bad news, but I of course hope that for once, I might get a happy message.

Otherwise, I got some exercise today. After I had been at Ullevaal, my husband and daughter's had to go to the doctor. Then I could take a walk outside. It was a little scary, too many sidewalks are just slippery ice, but luckily I managed to stay on my feet.