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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Do you have a beard?

I did not think that women had a beard, but boy I was wrong.

I've got a beard! I often say that I should let it grow, so I can be Santa next Christmas.

The secret lies in a pill called Medrol, a cortisone / steroid we get, we who have cancer of the head. If you are so unfortunate that you forget to put it in a gelatin capsule, you have a metallic taste in the mouth the rest of the day. Heavy!

The drug is on the WADA doping list, and is probably not used in the sport, because here is revealed, out of the side effects, it is a known phenomenon that the hair grows in the strangest places, and your face will swell. Cool, huh?

Since I find it a little embarrassing to walk around with a beard, it was now time to remove it. Again. I found a cream that is quite gentle on the skin. An affordable, pink box from Vita, "Andrea Visage Clair - Gentle hair remover for the face." In the picture you can see how beautiful you have to be in 8 minutes while the cream works. Gorgeous!

But if you need a Santa, so remember to speak out in good time, because this beard does not grow very fast.

Have no fear

This blog post will be about death. If you do not want to know, you do not need to read further.

My previous blog post was well received by many, and I am touched by all the good words and support.

Death is a difficult subject, and not everyone thinks it's appropriate to talk about, often because the fear of death.

For me it was important to know. Get to know more about what is coming and how the time before death will be.

Most often you get time to prepare for death when you know that you are seriously ill, and you will feel it in your body that it becomes weaker.

I was afraid of death, but that was before. It was before I learned about what happens when death is coming. Fortunately, I met people who took the time and listened to me and gave me answers about the things I was wondering about. I said I was scared and I wanted to know.

"How is it to die? Will I be in pain? Will it take time?"

Then I got answers, You should not be afraid that it will hurt, because you get medication, and for the most part you will sleep. The body is in a way outside of yourself. And then one is awake sometimes. You do not need food when you die, not intravenously either. There are many families who think that you are starving to death then, but it hurts worse to be nurtured.

But it is important to moisten the mouth and give good oral care. No one knows how long death takes, it can take anywhere from days to weeks.

There is a special tranquility around the dying, and usually one just "fall asleep". And life is over.

"Where shall I be when I die?" many think. In the hospital? Home?

Hospice Lovisenberg is a great place to be staying those last days. They have long and good experience with caring for patients and their loved ones in this phase. And I want to be there when the time comes.

Cancer Gladiators

Why are so many blogging about their lives as cancer patients several years after they are cured? As if nobody are living with cancer today and no one dies of cancer.

Amazons were notorious archers,
and they removed the right boob
to clear the path for the bowstring.

On Tuesday when I was at the day unit at the hospital, we talked about death. Yes, because all of us who are there on Tuesdays have cancer, and we can not be cured.

Everyone of us knows that we are going to die soon, and that we do not have much time left. All of us who are there on Tuesdays, get there in a taxi, because we can not get there on our own and we are not able to get home on our own either.

About Death: What do people think it is like living like this? Knowing that no doctor nor any medicine can heal you? Do you think we sit depressed? Do you think we sit and feel sorry for ourselves and say that life is unfair? Sure, some of us cry sometimes, and some of us look tired, but we do not complain. But we understand, we understand how the others are.

We also understand that someone who has recovered may complain that the new reconstructed boobs does hurt a little, or that scar looks a little ugly. It is also understandable with a celebratory blog post when it is five years since you were declared cured. But you can not forget for five long years to change the name of the blog, "my life as a cancer patient."

Remember, there are still many people who die of cancer. Also of breast cancer. Unfortunately this serious fact drowns in the loud displeasure of the cured who complains about tits and reconstruction.

While today's cancer patients are fighting an uneven battle, as gladiators greeting Caesar, "we who shall die salute you."