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.