This is an extract of my diary...More will follow on a regular basis...

Day 1:

Strange to wake up. I felt that it was all a dream and that I had only had an ulcer in my gullet (throat)* and that everything would be ok. That thought lasted for exactly 5 seconds and then I really woke up. I remember looking up at the ceiling and I said aloud: "Søren, you have cancer"..... then the tears came back. And while I cried I prayed to God. As I do believe in God, I have prayed several times. But this one took the prize. I demanded He help me and that he did his part to make me well. I knew it was in his power.

After a quick breakfast, I surfed on the Internet and eventually found a website about some herbs that had a good, sometimes fantastic, effect on cancer and other diseases. I nearly ordered, but decided not to. I wanted to think about it some more.

After some quick shopping and a little computer games (a wonderful world where you're the hero, can do everything, and if you die you just start the game all over again!!!), I checked out the website again. I called mom and dad and they would buy some right away.

I don't know if it was because of panic that I felt I had to do something straight away, but just to DO SOMETHING was a bit of a relief. Before they arrived I rang some friends and explained the situation. Damn tough!......It's not exactly what you want to give people for Christmas. But I think people should know and then we can always talk about it later.

The worst part is my girlfriend, or rather my ex-girlfriend. We decided to break up a couple of weeks back and today was her 27th birthday. I called and congratulated her, but she was more interested in hearing what the test results were. I could feel the tears in my eyes, but I told her nothing other than that they wanted to do some more tests and that she should enjoy her birthday. Never before did I feel such need of a big hug from here.

I have already had the first cup of tea and I am preparing the next one.....then time will tell...

Day 2:

Today has been spent on two things: To make enough tea for 3-4 days and Peter's visit.

I called the tea dealer, particularly to hear about the 6 people in Herlev, who had been cured and the doctors didn't know how. They had all been drinking the tea. We had a talk about the process, the effects of the tea, and good and bad experiences. She sounded really nice and I gave her my phone number. She told me to call if I needed her help. And I think I will. I would like to get in touch with the 6 people in Herlev. I suppose mostly to get a tangible proof of the effect of the tea. But then it's up to them if they will let me contact them.

I also went out to buy some more glass jars. On a Sunday!!!...yes....Christmas is near.

Now all of my colleagues knows that I have cancer. Once again I realized how difficult it is telling people about it. There is no easy way. We'll be seeing each other again on Thursday so hopefully we can spend some good time together then also.

Peter came. Damn good to see him. It turned out he had had a hard time when he got the message. His grandfather died a couple of days ago, so frankly he thought this week had been tough. Vi had - as always - a lot of good talks, both about my situation, but also about so many other things. We also talked about the future. About our trip to Canada next year. I HAVE to go. I have started saving up for it.

It was great talking to him and I also think that it helped him. At least I know that I can count on him when I need to.......a true friend.

Jeppe has returned from Scotland. He doesn't know yet, but called to say that he'd drop by tomorrow. I'll have to tell him the bad news then.

A good day...Peter and I managed to distance ourselves from it by talking, drinking Coka Cola and watching a couple of movies. Great....

Day 3:

Today I went to the hospital to have a lot of blood tests taken...she filled 12 test tubes. I also read my journal, but it actually said exactly what the haematologist had told me last Friday. I just wanted to read it myself.

On the buss on the way back from the hospital I had a strange experience. I don't know if people with cancer all of a sudden get terribly philosophical, but I had some funny thoughts. While I was on the buss, it suddenly made a turn and the sharp winter sun got in my eyes. It was not nice at all and I thought: "Bloody sun"...but then other thoughts came to me. How nice it was to feel the warmth on my face, how bright, not sharp, it was, how very different the street was, depending on whether it was in the sun or not....actually the first time I thought about how often we whine about little things. Maybe, when this hell is all over, this is the moral I have to learn. To see the big picture....that so many small problems really are unimportant.

Jeppe came to visit me today. It was great to see him again. Of course he was chocked to hear what had happened. And that was that. I know he'll be there when I need him.

I finally told Claudia. She practically went into chock and started crying. As she said: "Although we broke up a couple of weeks ago, you're still my best friend"...I had to assure her that she didn't need to come to Denmark. I wanted her to go to Spain and enjoy Christmas and New Year as much as possible. When she comes home, THEN I want to see her.

And I guess that's what it's all about. I don't want people with lugubrious faces around me. I need support and I'll ask for it when I need it...and I know I'll get it no matter who I turn to. But I don't want people to break down because I am ill...what's the use. Sometime in the future, when the chemo starts, I'll need a lot of caring...that's when I'll need it.

Got a lovely letter from Mette and Lars.....that warmed my heart...

Tomorrow it's hospital day and he'll be doing a bone marrow biopsy.

Day 4:

2 big things today. A bone marrow biopsy and visiting Line to tell her the bad news.

The biopsy went without problems, easy and painless. It wasn't until a couple of hours later that I could feel that they had been drilling in my hip.

However, I did have a bit of a chock when the C-doctor told me that he had made an appointment for me to have a ultra-guided external biopsy tomorrow. I did not look forward to that. While studying, I have seen a liver biopsy done and it bloody hurt. But it was necessary to get enough tissue for a histology so that they can find out which type of cancer it is.

He was very honest and said that they had NO idea what type of cancer I have. Some tests showed one thing other tests another thing and yet other tests showed nothing at all.

It was worse with Line. I've had a bad time telling her because I know she's going through some problems too at the moment. But smart as she is, she had figured out that something was seriously wrong. It is VERY rare that we see each other twice within five days...J

But we had a long and really good talk. I know I can always count on her no matter what happens. Like I said to her, I think our relationship will be even closer, if possible, when all this is over. I just know that she means everything to me...

And once again she had made that lovely potato soup and I got 5 portions home with me. Great...

Day 5:

I showed up fasting at the ward at 8 am, even though my appointment for the biopsy wasn't until 1 pm. If there was a cancellation they would do me straight away. Unfortunately, there wasn't one. So I had to sit on my but for 4 hours, have some more blood tests taken, get into the "patient outfit" and finally a hospital porter took me down to have the biopsy done.

Unfortunately, they could not do the biopsy, as the tissue was not easily accessible. So I feared they would open me up and take tissue out, but we decided to do a new gastroscopy with tissue biopsy tomorrow.

This was the first time I really felt like a patient. Very strange....but maybe I shall have to get used to it.....:-)

When I got home I wrote a letter to my ward so they can keep up with what's happening. The plan was to go there tomorrow and say hi.

Day 6:

I slept lousily last night. I had strong pain either in the chest or in the ulcer in my throat so I only got a couple of hours sleep...

Once again I showed up fasting at 8am and was quickly attended to, got some painkillers and for the 4th time they stuffed a tube down my throat. The painkillers were quite efficient though, and I slept for an hour or so afterwards.

The doctor said that he was very satisfied, had taken some big chunks from the gullet, so it'll probably be a week or so before I get the histology results...

Afterwards I went up to the ward. It was really nice to see them again. I felt that they dropped whatever they were doing just to talk to me and I was very touched by that. They were all very supportive and were looking forward to my returning to work as soon as all this is over with.

I was also told that I need not worry about money and salary while this is going on...actually I haven't, but now I don't have to think about it with a clear conscience.

In the evening the staff met at Martin's place for some Christmas beer and rice porridge (Danish tradition). It was a good choice I had made, to tell them before, because we only talked very little about it, and the rest of the time we just had a good time. Had a large portion of rice porridge... with lots of butter...a good feeling...

Those 3 just mean so much to me. We can be serious and we can be totally NOT serious...it was just so nice to push away those gloomy thoughts I had in the back of my mind...I'm so grateful to them...

Hopefully, tomorrow will be the last time I have to go to Riget (Rigshospitalet, a research hospital in Copenhagen)*, this time around. Ear-nose-throat check tomorrow...hopefully quick and easy...we'll see...

Day 7:

A great night as I slept really well...

I showed up at the ward, got the journal and went over to ear-nose-throat check up. They attended to me quickly and the check up was soon over with. I had a swollen lymph gland in the upper part of my chest but he said it was quite normal. He couldn't give me any answers, but then that wasn't his job. It was a standard check up so I went back to the ward.

The head nurse has taken me under her wings and funnily enough she had received "the bouquet of the week" in the programme "The Doctors Desk" only the day before. It had been shown on TV, so while we were talking, a lot of congratulations came in...she seems really nice and I trust her 100%.

She called the histology lady who said that there may be a result on the tissue test later today. THAT started off the butterflies in my stomach!!!...I don't really know why...maybe it's because I had expected to get the results after a week...not after one day!!!

But we agreed that I should go home and the haematologist would call me later, so we could work out a plan.

He did, and the result wasn't ready. So I have to go to the hospital on Thursday to see if they have reached a diagnosis. If not, they will open me up and take out some lymphatic glands, so that they have enough tissue to work with. THAT is something I don't want!!!...I hope and pray they can reach a diagnosis from what they already have, so that they wont have to cut me open.

I slept in the afternoon...some days I just feel so tired...but I had 11 æbleskiver (small cake of batter cooked over the fire in a special kind of pan*) in the evening...lovely...

Day 8 - Day before Christmas:

Today I did absolutely nothing!!!...other than potter around the apartment, do some dishes, tidy up a bit etc. My back hurt the whole day so I had to lie down several times. I think that various lymphatic glands are starting to put pressure on different parts and that that is what I'm feeling.

Several times I've felt like writing people from the children's town and let them in on what's happening, but I think I'll wait until Thursday. Just not to spoil their Christmas. It's bloody tough news.

I also think I'll only write the leaders. And just keep a low profile. Not use ICQ, I'll only risk talking to some of the kids. Not that they're not allowed to know, I'm sure they'll find out. I just can't face receiving letters from 70 people saying: "oh, I feel so sorry for you, Søren"

But let's see when I decide to write them.

Day 9 - CHRISTMAS EVE!!!!!!!!!!!

Weird day today. I've never been any good at buying Christmas presents. Usually, Pernille has bought presents for mom and dad from both of us, and I just paid her half of whatever it cost. Nice and easy. But this year I haven't thought about presents at all....until today. But then I'm filled with a kind of indifference. I don't care whether or not I bring presents...I'll be there...that'll have to do???

At the station I noticed all the people with presents everywhere. People have a twinkle in their eyes on Christmas Eve. It was really nice to see that.

Mom and dad picked me up at Roskilde Station. It was really nice to come "home". A place where you feel 100% safe, everything is well known and for the first time since the news I could totally relax and just be waited upon. Nice - and very needed. And then of course Nadja was there. She can make you forget everything about various illnesses.

I ate quite well, although it did hurt quite a bit. I also had to make some herbal tea during the dinner and unfortunately I cracked a glass because I wasn't thinking. Bloody annoying and something I just DID NOT need. Afterwards I was a bit puzzled about my strong reaction...all I have to do is to buy a new glass. But I think it has to do with a feeling I have that now...right now...and the next couple of days and weeks...I need some PROGRESS!!!!!!!!!!!!

And then we had to dance around the Christmas tree...a funny experience: It wasn't I, the seriously ill, who had to give up because of being short of breath...it was the old man!!! He lost his breath because he was standing too close to the candles. What do you know....J

The presents were quickly over and done with and for the first time in I don't know how many years, I didn't go to church in the evening. And it was just because I didn't want to meet people I know from the YMCA/YWCA and hear them asking me how I'm doing. They can see I look ill and I didn't want to spend Christmas Eve talking about cancer. I shall have to make up for that next year...

I went to bed early, I was really tired. It has been a while since the last time I was THIS social...

Day 10:

Didn't sleep well, probably because it was a new place, a different sofa, but Christ did my chest hurt this morning. I really had to concentrate on breathing deeply, and not just superficially, which I automatically did because of the pains. It got better during the day, but I was a bit groggy.

So I spent the day relaxing, taking a nap and talking a bit. My mom had bought two books about food and cancer, what you have to eat to strengthen the immune system. Quite interesting. Well it has made me take fish oil and garlic capsules. And then of course mom makes some good soups with lots of vegetables, so I had some of that too.

Day 11:

Slept better last night.

Jørn and Gurli came for Christmas lunch today and for the first time I took a painkiller, Pinex as an effervescent, to be able to enjoy some of the food. And I actually ate quite well. Nice feeling.

I went in to the office to rest for a while and Gurli came in. We talked for 10 minutes. It was really nice as she is a retired nurse and I know her. A good mixture...a good talk.

My dad took me home in the evening, that was nice. It was also nice to be home again. Call a few friends and all that.

Day 12:

This morning I woke up with an excruciating pain in the right side of my back, I think it's around the kidney. My guess is that it's a swollen lymphatic gland near the kidney, which is now increasing pressure and complaining about the restricted space. But Christ it hurts when I straighten my back and breathe deeply. If I bend over slightly I can't feel anything...strange...

Peter came tonight, we went out and rented 2 videos, both were disappointing, but it was nice just to be with him and talk about everything and nothing.

Day 16 - NEW YEAR'S EVE:

I have skipped a few days as they are all starting to look alike. It's as if I HAVE to have pain in some part of the body...and I never know where and when it starts. Strange.

Anyway, today was New Year's Eve and Line and I were going to a party with Peter and "the guys from Farum". We had a great time. We showed up at 6pm in our best outfits and saw the Queen's New Year's Speech. I had brought some painkillers so I actually ate quite well. And the food was delicious!

One thing was quite a pain in the ass though...or rather: One person was. There was a guy at the table who constantly had to brag. Every time a conversation was started, he managed to steer it onto him and about how good he was, how much money he earned, how many beers he could drink, etc. etc...perhaps the type of person who appeals to me the LEAST in this world. Later, when we were having dinner, he started to tease me about how I wasn't drinking fast enough (I drank slowly to avoid pain)...I quietly explained to him that I didn't FEEL like drinking so fast and that, no worries, we would both get drunk...but he just wouldn't let go and when later on he called me a sissy I just felt like doing one thing, which of course I didn't do. But I felt like getting up and lean over the table, look him in the eyes and say in a soft voice:

"Listen here you little asshole of a rat with no self-esteem. Keep your bloody low self-esteem to yourself so the rest of us won't have to listen to how much you hate yourself. The reason for me not drinking so much is that I have cancer, a 12 cm long ulcer in my throat, which hurts like hell when I drink beer. But I drink beer, not because I am hell of a guy like YOU, but because I like the taste, and as the doctors have only given me 2 weeks left to live, I thought that tonight, I want to enjoy a couple of beers in good company. But then I have to sit here and listen to someone like you who can only think of one thing, to try to come across as being better than everybody else because you just can't see that you need help and that in reality YOU'RE NOBODY...CHEERS!!!!!!!!

But on the other hand...why should I let such an asshole ruin an otherwise great evening. So I left it at that.

Line, however, got very drunk and I accused her of drinking to forget about my illness. She was put to bed and we celebrated the New Year. At 3am I had had it and caught a train home.

All in all it was a great party, but I was sad all the same. I missed the "old" me, the way I was 2-3 months ago. I didn't dance one single dance - it wouldn't have been any good - but I didn't have the energy for it either. It was sad to remember how before, I could dance 4 hours straight and still have lots of energy left over. But I guess I'll be that way again soon...:-)

Day 17:

Sometimes I'm really unhappy...sometimes I break down and cry...but I need positive people around me who can contribute with a good atmosphere. I do not want to use my precious energy picking people up who can't stomach the news...they have to seek help elsewhere. Tough words, but like I said, I'm a Super Egocentric but with a good conscience. When all this is over I'll pay them back.

Day 18:

Slept like shit last night...probably just a couple of hours. Had excruciating stomach pains and painkillers didn't help at all. Had a little nap later in the day.

Made some tea today, so I have enough for a week at the hospital as I'm being admitted tomorrow.

Hopefully, I can go home tomorrow afternoon and then go back to the hospital tomorrow night.

Today has not been good though....the pain has shifted to my back...damn...

Day 19 - 26: Operation:

They let me go home and I went back fasting at 7am. I wasn't operated until 12 noon and I was surprisingly calm while waiting. I've no idea why, but that's how it was.

I was taken down to have the operation done and all went well...the first thing I remember was that somebody somewhere said: "Søren, it's over. It went well"...I'll never forget those words. Of course you're a bit nervous before an operation, so to hear that as the first thing when you wake up is like sweet music. The person who said that, I owe her a lot...

Otherwise, I think I was a bit drowsy while staying in the recovery room. Lot's of people visited, I can't remember most of it. After 3 hours back at the ward I felt ok. I had had an epi-catheter, which takes the pain really well.

The days went well, I maintained my right to do ALL personal hygiene myself. It was tough, but it was probably worth it...J

The worst day or 24 hours was when they removed the epi-catheter. They gave me morphine, which made me feel really weird, then they tried Ketogan, which I didn't think help. Finally, they gave me Panodil and Diclon, way too little of it in my opinion, I wanted something relaxing - I could feel how I was tensing my back and stomach because of the pain, but this was not discussed with the doctor. In stead, I lied there stiff as a board for 24 hours, not able to move or turn. Christ that hurt. There was probably a lot of gasses in my stomach which couldn't pass on in the system. I went to the toilet at least 20 times during the next 24 hours and boy was I cheering when I farted the first time. What a relieve!!!!

From then on things went fast, walk around with the help of a supporting device, cut down on painkillers, visit the ward (where I work). All so well that I wanted to go home Wednesday.

No problem with that, but before I left the doctor came and told me that unfortunately, they still had no diagnosis...in fact they are even more confused now than before. So from now on they will proceed by a process of elimination and start giving me chemo following that method...I have an appointment for Monday, and a plan will be worked out...

I had lots of great visits while in hospital, even though the day after the operation was almost a bit too much. There was at least 3 at a time between 10am to 10pm...all day. Not much time to rest but it got a lot better the following days...Especially Line and Claudia were faithful visitors every day...that was nice.

It was also nice to see Sten...he came 3 times, knowing how much he hates hospitals....I was really happy about that.

Day 30 - 1st month - Sunday 14th January 2001:

Another month has passed since my life was so radically changed. Tomorrow is "judgement day". I have to go to the hospital to get "the sentence": Either they know what's wrong with me or they still don't know f... all. Either way, we have to talk about chemo and this is where I have my doubts. I'm not sure if I should postpone the chemo and let the tea start working or what. I've thought about it a lot over the last couple of days. Not that I want to prove something with the tea, it's just that I'd like to avoid the chemo...

The doctor talked about "shooting widely" and that doesn't sound nice at all. Anyway, I'm going to wait a couple of days before I decide, although I have a feeling that the doctor already have a bed ready for me. But I am going to wait a couple of days.

Claudia went back to Hamburg today. She has been enormously supportive the days after the operation and I feel bad about not being able to give something in return. On the other hand I have declared myself to be a super egocentric, for the time being, so maybe I should just drop the subject...

Anyway, it has been an enormous help to have her here...we talked about me paying her back by inviting her to the south, to the sun...both she and I could use that...:-) And it was no problem at all being ex boy/girlfriend...it went smoothly...

I also talked to another person who got cancer and drank the tea. Almost given up by the doctors, not given many chances and after 3 months they declared him 100% well...quite amazing...I can only hope that I also fall into that category...:-)

By the way, he told me to contact a healer, whom he had also been seeing. He's supposed to be really fantastic and can "do some amazing things with his hands"...I don't know whether to do it or not. Would rather believe in the tea.

Day 31:

Talked to the doctor today and he did not tell me what I was hoping he would. They still don't know what's wrong with me. In fact they don't have a clue. They think they can use the exclusion method and therefore he will pass me on to oncological ward. I was pissed off, angry, disappointed, annoyed, whatever...I don't think it's fair that I had to go through 4 weeks of testing and an operation and those "clever brains" can't figure out what's wrong with me.

It wasn't nice to be passed on to oncological ward either. It sounds wrong to my ears...no way around it now.

Day 39:

I visited the oncological ward and spoke to the chief physician. Apparently it was a preliminary examination. The doctor was fairly nice and we had a good talk. They think they can exclude cancer of the testicles and lymphatic cancer. But they can't get any closer to what's wrong with me. But at least I now have a diagnosis, even though it's not very uplifting: "Unknown Primary Tumour"...in other words, they know I have cancer, but not which one of the 200 different types!!

We also talked about treatment, which would be chemotherapy. But I had to sign a document saying that I would participate in a test with 3 different kinds of substances, which had shown to be efficient towards unknown primary tumour in the labs. One of the substances had been discovered a couple of years ago. I asked what they used to give the patients before that..."nothing" was the answer. Perhaps life prolonging radiation treatment but not a treatment as such. Which really means that if I had gotten cancer 5 years ago, I would already be dead!!!

I told her that I drink the tea and that I have high hopes for it's effect. That's why I was a bit reluctant to start chemotherapy. She told me I could have a week or so to think it over but she would have me admitted for chemotherapy at the beginning of February...I could always turn it down before that, even though she thought it would be a bad idea.

At home I did a lot of thinking. I've always thought that I can beat the cancer, it's just alt the SHIT I have to go through to get there...chemotherapy being part of it. I feel so bad about having that poison injected into my body. I don't think I worry about loosing my hair and being nauseous etc. but it IS poison, which you accept of your own free will...it's weird.

It was my birthday yesterday. 27...MAJOR step towards 28...

Day 42:

I called the healer today. Jeff Roope is his name and he sounded really nice. He speaks English and we had a talk about my illness. We agreed that I should go see him on Wednesday.

He talked about some pills and gave a lot of examples of what they can do. Let's see...I'm still a bit sceptical when it comes to it. I'm betting it all on the tea.

Broke down this evening. I'm so sick of it all. Not that I'm thinking about ending it all - on the contrary...but I'd like to feel some progress soon...I'm still in pain, I sleep badly at night, I'll soon have to start taking painkillers at night, the wound from the operation has still not healed completely, I still have excruciating pain in my stomach...it's as if everything is an uphill struggle...I'd like to be able to slide downhill soon...

Day 47:

I went to see the healer today. It was fantastic. He lives in an ordinary house and we sat talking for about half an hour first. I was really sceptical and asked him what he really can do...why does he call himself a healer. He asked me if I'd had trouble with my right jaw because he could see some energies floating from that side of my mouth. He also thought I had back pains...there was some energy there too.

I was speechless. I had had a wisdom tooth taken out shortly before I got ill and the wound was not quite healed yet. And I had also complained about back pain because of swollen lymphatic glands. I had a hard time believing it.

Later we went downstairs where he had a couch. He asked me to stand with my legs together and my eyes closed and I could feel him "waving" his hands behind me. After a while he laid his hand on different places on my back and it felt as if it was "vibrating" and got warm. After that I had to lie down and it was all repeated.

It was really weird and I couldn't see the so called energies he was touching. He told me that he felt a lot of "life" in my chest and stomach but that he had stopped the growth now. Apparently he has removed bad energy and added good energy.

Mom and dad, who had taken me, were waiting anxiously in the car and we had a talk before they drove me home.

He gave me a lot of pills for me to take, something called "the Jeff-Diet". Took the first ones this evening and they smell of herbs. The worst is probably the number of pills: 21 per day plus painkillers, if necessary.

All in all, quite an exiting day. The healer told me a lot of stories about people who had survived even serious cancers. I also read some letters from people who were thankful for his knowledge.

Day 50:

Today, while surfing the net, I found something about the health center "Humlegaarden". A health center in North Zealand. They claim they can find out what sort of chemotherapy you need, or rather: Which poisons will kill the cancer. I almost went wild with excitement, as the doctors here don't know whether or not the chemo will work for me.

I called Humlegaarden at once and spoke to the manager of the place, who was a chief physician. He thought it was a great idea and told me that they had just done the same for another young man and that they had found the best chemotherapy for him. He said to send my journal up there and he would have a look at me.

I'm so pissed off and angry about my having to find this info on the net myself??? Why didn't the doctors tell me that, as they don't know what's wrong with me and whether or not the chemo will help, that there are possibilities in the private sector like what Humlegaarden is offering...damn doctors...I'll confront them with this as soon as possible.

Day 51:

Went to the hospital to get a copy of my journal, which was quite a battle. The secretary at oncological wanted a doctor to approve it and that could not happen until tomorrow. I said that I didn't have time for that. They could do that afterwards, by law I do have a right of access to documents. Finally, she rang the gastroenterological ward and a doctor there approved it. After that it was no problem. Annoying that you have to fight for such small things.

Anyway, I went into the chief physicians office and confronted her with Humlegaarden's examinations, and if she knew anything about this. Yes...she did...it had been used for a trial period by Rigshospitalet, but it had never been offered to the patients and now the trial period was over.

I was really pissed off about the doctors here not being able to figure out what's wrong with me, knowing that there are places that may be able to....and then not telling me.

Crap system...

Day 54:

Went to see the healer Jeff again. It went just like last time, except this time I was more relaxed as I knew what was going to happen.

A funny thing was when I asked him if I had to believe this thing about the energies for it to have any effect. You often hear about alternative therapists where the patient doesn't do well and their defence is that the patient "didn't believe in the treatment enough"...I thought this was also the case here.

His answer surprised me. He didn't really care whether or not I believed in the energies or not. They still exist!!!.. and he manipulated them, whether or not I believed in them!!! But it would no doubt help to believe in the treatment...but it was not necessary...From his point of view a very normal answer, but I laughed about it all day...

I've read my journal and one thing struck me. The histology lady, who examines my tissue and tries to find out what's wrong with me, writes as follows:

"Further examinations has been initiated, with the rest of the keratins available to the lab..."

To me it sounds as if other labs have other keratins than what the Rigshospital does. I asked a doctor about this and he had to agree with me, but they didn't usually send tissue to other hospitals. I DON'T GIVE A FUCK WHAT THEY USUALLY DO!!!!!

I'm constantly told that I'm not a standard patient. So don't do just what you usually do!!!!!

Day 55:

Today I had an appointment at the gastroenterological ward because I wanted a doctor do examine my stomach. I've had stomach pains since the operation 5 weeks ago, sometimes so bad that I have trouble sleeping at night. They have to take a look at it now.

And so they did, but when the doctor heard that I was due for chemo tomorrow, he noted in the journal "it was probably due to being nervous, but to eliminate gastritis, the patient is put into Lanzo treatment"!!!! WHO THE FUCK DOES HE THINK HE IS. Unfortunately, I didn't see this until I was on my way to oncological and when I went back, he had left. But at some point I will confront him with this. Nervous!!!...it has nothing to do with that...I've had stomach pains for 5 weeks!!!

But I am nervous about tomorrow. I've bought some visualization tapes, which will hopefully change my attitude towards chemo. I'm not too keen on it.

Day 56 - 1st series of chemo:

Chemo day arrived. It went surprisingly well - much better than I had expected. I didn't feel uncomfortable at all. I'm getting 3 substances: Taxol, Cisplatin and Gemcitabin.

Apparently, Taxol is very poisonous, there is a risk of heart failure and a lot of other stuff, and so for the first hour a nurse was checking my pulse and blood pressure every fifteen minutes. The next poison was Cisplatin. It ruins the kidneys, so they make you drink lots of water before and after, to create a flow through the kidneys in order to limit the damage. This means that you keep running back and forth to the toilet.

Finally, there is Gamcitabin, which gives flu symptoms. But it went surprisingly well. I had made a deal with several friends who came and kept me company as the chemo takes almost 12 hours to do.

Afterwards, mom and dad took me home to Roskilde and the plan is that I'm going to stay here until I'm fully recovered from the chemo. But this evening I didn't feel anything.

The other day Susanne visited me and she told me that I can get a 60% subsidy from the state on Nutridrink...so instead of costing 22 DKK a piece they only cost 9 DKK. So I asked a doctor of he could do me a so called "green prescription" and he did that at once.

WHY HAVE MY DOCTORS NOT TOLD ME ABOUT THIS SUBSIDY??

WHY THE HELL TO I HAVE TO FIND THAT OUT FOR MYSELF???..I'M THE ONE WHO'S SICK!!!!!!!!

Day 57:

Now I can feel it. I'm extremely tired and now I have a fungal infection in my mouth. I feel strangely unwell and have just a touch of nausea.

Day 60 - 2 months - Tuesday 13th February 2001:

A couple of days have passed and I think I've gotten over the worst bit. I don't feel so unwell anymore and I'm just a little bit tired. The fungus in my mouth is still there.

Actually the last 3 days have been better than expected. I had thought I would have a lot more adverse effects but I think I got away easy. Now I just have to get rid of this fatigue.

Yesterday, we went shopping for new furniture for my apartment. I'm not quite sure what to do as on the one hand I'd really like to get some new stuff, but on the other hand I don't have the energy to think about it too much. But it'll be nice to look at something new.

Day 67:

I thought I would get away with it easy...but the last week has been hell. In short, the adverse effects can be summed up in one word: FATIGUE...

I've never in my life been this exhausted, so drained of strength, as I have been for the last week. Just going to the toilet was difficult and I thought I was going to faint. When I had spoken for a while I found it hard to breathe, I got short of breath already after a couple of minutes. I slept several times a day and the worst part is that I haven't eaten very much for the last week.

My weight is down to 66 kilos, which means I have lost 19 kilos since last summer. I think my body is drained for everything called deposits, so I'll have to do something about that. Perhaps start to drink Nutridrink to get some energy. When I think about it, there have been days when I've only eaten to portions of yoghurt the whole day...and there has been quite a few of those days.

Tomorrow I'm seeing Jeff again....I'm just so tired...

By the way, I had a huge discussion with the doctor, when I was about to have the small chemo last Friday. I explained to him that I couldn't take the medicine Vogalene, which they give you for nausea. I looked it up and low blood pressure is one of the side effects. The other day I felt as if I was going to pass out right after taking them so now I don't want them and asked for something else for the nausea...

Would he give me something else???? HELL NO...he said I could reduce the dose. Then - still calm - I had to explain to him that I wouldn't take Vogalene as they made me feel bad and that therefore I would like to have something else. But no way!!!!!...then I yelled at him and asked him if he was serious, they inject poison into my body, which they know will make me feel nauseous, but they refuse to give me something for it???

To cut a long story short...I left without pills...so I'll just have to not feel sick, I yelled at him...

Crap system...

Day 68:

Went to see Jeff and he could see immediately that something was seriously wrong, as I almost crawled up the stairs to his house. We didn't waste time talking, it was on the couch immediately. He spent a lot of time on my energies and he told me that my metabolism was at its lowest, so now I really had to start eating.

In the car on the way home we decided to stop at the chemist's and use the green prescription to get some Nutridrink. It couldn't go on much longer...so today I've been drinking steadily, although I have tasted better things...but down it went.

Day 70:

Today I feel FANTASTIC!!!!!!!!!! I almost jumped out of bed this morning and I have not really been tired. I can feel that I'm a bit "well done" but nothing in comparison with the last 10 days...it's so greeeaaaat. I'm convinced that it's Nutridrink that has made the difference. Finally, my body has gotten the energy and fuel it has been lacking for the last 3 months.

I should have known better. I have dealt with this illness quite sensibly, but when it comes to eating, my nutrition, I've been too bloody stupid. Everybody, nurses, family, friends have told me to watch my weight and to do something to eat again. I've just taken it easy - too easy - and thought that probably "tomorrow"...Christ I've been stupid!!!

Christ it feels good not to be tired!!!

Day 80 - 2 series:

Haven't written for 10 days, but have actually felt good. Funny how you write your diary when things are like shit...but when things turn around, you sort of "forget" the diary. Probably because it's used as therapy or as a comfort.

Anyway, the second series started today. No problem this time either. I just hope I won't be so tired as last time..see you in a couple of days...

Day 85:

It has been ok. Have been more nauseous this time and have vomited 3 times - twice with blood but chose not to make a big deal of it. I think it's my mucous membrane, which is being rejected and I do have an ulcer in my gullet.

Day 100 - 3 months...plus...Sunday 25th March 2001:

Thought I'd better write a bit on this day of anniversary. In short: I FEEL FANTASTIC!!!!!!!!!!!

I can't begin to describe it. After having felt bad for so many weeks it feels as if I've gotten my "youth" back. I have lots of energy - although I still get tired if I e.g. walk to fast, but just to GET OUT INTO THE FRESH AIR...actually I don't feel ill at all...I can see that my hair is getting thinner, in fact my mom wanted to cut it short so that the hairbrush doesn't look so bad.

Have had people visiting or have been visiting people all week.

Went to see Morten and Martha yesterday...they showed me their wedding papers so I guess I'll have to believe it...:-)...Iben and Sine also came and we watched photos from M&M's trip to the west. It was so nice to be with them again. It's been a long time since I've laughed that much.

Tonight it was also Oscar Night with Jeppe...great to see him again after he has come home. Everything is still the same. Unfortunately, this night I lost the bet. Didn't come home until 8am.

It was Line's birthday yesterday, turned 27. Lovely birthday cake...again...and again...and again...I'm slowly starting to eat more than usual...don't have to think about if it feels as if I'm choking because of the ulcer...perhaps it's healing?

Anyway, we had a really good time and we went to Buddy Holly afterwards, Line's hangout. Danced once for the first time in 3 months. Line and I danced to "I will survive"...I mean, the symbolism here is thick, right???

Was also scanned this week. Will have the result on Wednesday. Exciting...a little nervous.

Day 102:

Went to see Jeff today and he really thinks there is progress. He can't really feel any activity in the chest and in my stomach and my energies are in balance too. He believes the lumps have diminished and would like to have the result of the CT scan when I get it...

We've started talking about me starting to work again. Must remember to talk to the ward about it...

Day 103:

YIEPPPEEEEEEEEEE...THE TREATMENT WORKS!!!!!!!!!!

I'm so happy and relieved. The CT scan showed that the lumps have shrunk about 30%...in one place up to 50%, which surprised the doctors quite a bit. Apparently this doesn't happen often after just 2 series...the pills?

In any case we're continuing this chemo and another scan mid June.

Went to Schultz' and he had the shaver and scissors ready. Off it came. It had gotten too thin. So now I have 1 mm of hair on my head, but at a distance I look balled.

Am thinking about making a homepage and put this thing on the net. Maybe others can benefit from reading my story?

Had a good talk with mom and dad. I'm so damn proud of them. A lot of parents would have broken their neck by now. But not mine. They're keeping their chin up, and let's crawl up this hill...and the next...and the next...it has meant so much to me that I haven't had to use energy on that...on the other hand I've only just gotten the energy to tell them now...but it's probably like that with everybody I know who have supported me...these days I just receive but I'll give it back tenfold as soon as I'm well again...

Day 110:

Had the 3rd series last Thursday and I'm actually amazed. I haven't actually felt anything except a bit of flue symptoms. Jeff had told me to take some extra Linze the day before and on the day of the chemo. And it seemed to work.

However, I've gotten something which seems like a scalp infection. As if I have 50 pimples in my scalp. I think it's a reaction to the chemo and I'm going to see a dermatologist tomorrow. Actually, it hurts all the time, my skin is tense and I have a hard time sleeping because of the pain.

Day 117:

Have had another proof of the effect of the pills. I went to the dermatologist who was convinced that it was another staphylococcus infection and he gave me antibiotics and some ointment to rub on my scalp. I wasn't too keen on the antibiotic, as Jeff from the very begging told me that antibiotics ruins the effect of the pills. And quite right: Today I had some blood tests taken and all blood counts were at their lowest!!!

By the way, I talked to another oncological nurse who told me that when they have children with cancer, the doctors confer with other hospitals, some times even abroad, in order to reach the right diagnosis. I asked a doctor if this was true, which he said it was. When I asked why they don't do the same with adult patients...e.g. me, who has an unknown primary tumour, the doctor admitted that they had limited resources available...i.e. money...

CRAP SYSTEM!!!!!!!!

Day 125 - 4 months - Thursday 19th April 2001:

Today we really surprised Ayoe. All the nurses had gone up to Merete's apartment and Ayoe was lured up there so we could surprise her. It was so nice to see the other nurses again, to feel I was still a part of the ward. A good time, a few beers and great company. What more could you wish for?

By the way, I retain water in my legs??? It's probably because of a kidney damage...probably that bloody antibiotic.

Day 129:

Claudia spent the weekend here and it was probably the best weekend ever. We talked about how we feel about each other...it was a relief...now it's 100% sure that we are only friends and that we will be for a long time...

Should have had the 4th series today but they postponed because of too few white blood cells. I tried to convince them that it didn't matter. I'm taking the pills, but they wouldn't listen. Nothing to do about it. So it has been postponed for a week.

Day 135:

I'm having the big chemo tomorrow and I don't want to do it at all. A whole day wasted at the hospital with all the discomfort that follows. I have to see if I can catch Jeppe tomorrow so he can keep me company.

Talked to mom today about her back and after her visit to Jeff her back has not hurt at all for 1 ½ day...and it wasn't back to normal until 3 days later...it's almost the opposite of religion: I believe in God but I don't know if he exists. And the other way around: I know that what Jeff does works, I just have such a damn hard time believing it...I hope her back stays well.

Molle came by this evening...her stories about Nepal are really exciting...perhaps I should do some good deeds over there at a later stage???

Day 140:

I've gotten that scalp infection again. A lot of pimples on my cranium and it hurts like hell. But I refuse to take antibiotics...so I just have to suffer. Ment to go to Pernille's birthday and to the wine club with the high school, but I think I'll keep a low profile for a couple of days until the swelling goes down and it doesn't hurt so much any more.

Day 144:

Had the small chemo yesterday and it went without problems. But in the waiting room there was an older guy with his wife. He quite obviously suffered from malnutrition and had very little energy. Incredibly thin. It reminded me how far out I was after the first chemo. Down to 66 kg and no energy whatsoever. Scary.

They only gave me half a dose of Gemcitabin...my neutrocytes were juuust below limit value but still rising after the bloody antibiotics. And even though I objected again there was nothing I could do...damn!!

While getting the poison, I was talking to one of the nurses, what it was like to be a nurse and also a patient and stuff like that. Interesting.

Went to work and we agreed that I could start slowly on Thursday the 10th. I really look forward to it but it'll be interesting to see how much strength I have. How tired I'll get. But it'll be nice to get some patients between my hands again. I'm a bit nervous that I won't be able to take a broken shin seriously again. If I think that "that is REALLY nothing to talk about...some people have cancer you know!!"...but I hope I'm professional enough to separate the two things...if not I'll soon find out.

And we had our great staff meeting again at Schultze's...you just crack up and end up with tears of laughter running down your face, it's worth gold...

Day 147:

I WENT TO WORK YESTERDAY!!!!!!!!

Believe it or not, but I had my first day at work yesterday. I can't begin to describe how it felt when I got up this morning. I have NEVER been so happy to go to work. I just flew onto the bike (and I didn't loose my breath - am getting into shape...)

And the feeling of getting into the nurse uniform was fantastic. Sweet colleagues who knew how important this day was to me...Damn, it was great. And just talking to my patients again...once again being the professional rather than the patient. I have been to the hospital at least once a week for the last 5 months...yesterday was the first time I wasn't there as a patient!

I can't begin to describe it..I know I'm not home free yet, but it was really nice. Everybody should have the opportunity to try that at least once. The plan is that we agree on a weekly basis when I should come, depending on chemo etc. 3 days next week...looking forward to it already...

Had a good talk with Merete about our mutual expectations and thoughts about me being back in the group. Both management and staff are so supporting...it's amazing.

And now to something completely different: A couple of days ago I was surfing on the net and found an article about something called: Positronemissionstomography or PET. It's a diagnostic examination where you inject a radioactive substance, which then concentrates in areas with high metabolism...e.g. cancer cells. You can read more about it here. Among other things it says that it can be used for assessing how much the cancer has metastasised and - this is the fun bit - 45% of unknown primary tumours can be diagnosed via PET!!!

Have talked with nurses and they have the machine at Rigshospitalet and it's used for cancer patients...

I know fuck all about it, but I'm going to ask my doctors why I wasn't offered this??

:-)

Day 150 - 5 months - Monday 14th May 2001:

Can you imagine...5 months...unbelievable. It feels as if it's something that happened years ago in spite of all the shit I've been through for the last 150 days. It feels like a different life. The neighbour??..weird.

Otherwise, I don't have much new to tell other than that I've been to the summer house with Line last weekend. Nice to get away. Lots of sun, lots of laughs, lots of safety...a believe in that things will work out...and knowing that we will always be there for each other...so I just have to live with that...the most important was that I DIDN'T snore...so perhaps we can sleep in the same room next time also...

I think I'll start to exploit the summerhouse a bit more, because it's a marvellous place to recreate.

Still have pimples on my face...doesn't hurt so much, but it reminds me of my teenage years...and that was no fun at all...:-)

Tomorrow: Blood tests, WORK and Jeppe...good night

Day 157:

A few things have happened the last few days...Schmidt and Pernille came by, Jeppe had his birthday party and fortunately, I was well enough on both occasions. I was meant to have chemo today but it was postponed because of a too low neutrocyte count, something I have been trying to fight since I took that damn antibiotics. I was really pissed off with the doctors because their procedure says that they should postpone the chemo for a week. But look at me!!! I'm feeling great and could easily take the chemo after 4-5 days...but it has to be exactly 7 days because that's what it says on their paper. It doesn't fit in with my trip to Canada at all and now I'm going to miss out on the small chemo in the 6th series for sure. Once again I've become a standard patient..."we do like we've always done"...

Anyway...today the doctor gave me her word that she had never before seen a patient being this well while taking this treatment...that was nice to hear...even better was that the CT scan showed that the lumps had shrunk. How much I still don't know, they'll let me know in a couple of days.

I also had an answer regarding the PET scan...due do where the cancer is situated, they apparently know for sure that I only have cancer in the stomach...so there can't be cancer in my right big toe or anywhere else. And the doctor guaranteed that I had the optimum chemo treatment. I choose to believe that for now and try to let the matter rest...So now the plan is blood tests on Sunday and then hopefully chemo.

I've had a few funny experiences lately: When I meet people who haven't seen me since I got ill, and I tell them that I actually feel great and that mentally, I know that I have a deadly illness, but that I have now gotten used to the idea and therefore ignore it a bit and just think about it in a positive way...they look at me as if I'm nuts...almost as if they expect me to break down in front of them...but after all, I've had 5 months to get used to the idea and to make peace with it one way or another.

Oh...and the ticket to Canada is bought and paid for...heh heh

Day 161:

Mom came with me to Jeff's the other day and he took away her pain again. Unfortunately, it only worked for a couple of days this time, but he said that she could always call if it got too bad and he'd squeeze her in between two patients. He says that for each time it should get better and better and Ezlink should also start to kick in now.

Went to work again today. Damned tired when I got home. But a nice natural tiredness. It'll be some time before I'm back in again.

Lise went to Jeff's today and she had a bad cold. Nose running, but after 4 pills of Ezlink the running stopped and she felt better. I don't get it...but it works...

There was a lot of us from school gathered at Iben's yesterday. I laughed until tears were running down my face several times. Those people simply make my world glow. My stomach's been hurting from laughing so much today. We've talked about going to the summer house in August...don't know if I can take a whole weekend, what with all the stomach pain I get when being with them...heh heh

The other day Jeppe, Sten and Ane came by to watch football. Lots of Coca Cola and a great time. But my weight is getting closer to 76 kg. Am still 9 kg away from my champion weight but I'd like to stay where I am. I don't get enough exercise so it's all on my stomach. Have considered some weight training but I'll wait until after my trip to Canada. But several people have told me to keep the bald look instead of the long hair that I used to have. Funny thought...I've shaved it all off now...I think I've proven my point now. My eyebrows are growing steadily though.

Peter has an exam on Monday. I really feel for him. Glad it's over. I hope I'm well enough to go by even though I'll be having chemo on Sunday.

Day 172:

I hate computers!! You should just have to plug it in and the damn thing should work. It hasn't been up and running for 10 days because it decided to die on me. Surprising how annoying it is - so dependent I have become. Fortunately, I've made some notes in the meantime so I don't have to rely on my memory only. But of course all the phone numbers and e-mail addresses were lost.

Had the 5th series of chemo 8 days ago. Once again no problems, a bit tired, a bit sluggish, a bit of laziness...wanted to go home already on the Thursday. Just had to help my old man with the computer, which went well. Also had to help Pernille with hers, which didn't go well at all. I can spend days wondering about a solution I can't seem to find. Another example of this week not being a good computer week.

My eyebrows and eyelashes have disappeared now. A shame really. It makes you look more ill than what you really are. On the other hand the hair on my head is growing steady but surely?? And I've gotten those damn pimples on my head again. Am going to Peter's birthday on Saturday and I'd like to get rid of them by then. They're actually what upsets me the most. The way they reappear a week or so after the chemo.

Got really sad the other day. Read the book "Can you die - when you are young?" by Malene Fredsted. She had a boyfriend who died of cancer 10 months after the symptoms showed. I just broke down in the evening. I think I got scared. In the book, he got better for a while and then all of a sudden it turned around. I didn't like that...I'm realistic enough to know that that can happen...but I just feel that...failure is not an option...and then...If people ask me, it should be read by the people left behind and not by the cancer patients...from now on: Books about the ones who survive!!!

Had visits from 2 people looking like dogs, Peter and Jeppe, one day between their visit. They had both been out the night before and were actually quite worn down the next day. It made me think that it had actually been 6 months since last time I had gotten totally drunk. Actually, it was at the ward's Christmas lunch 6 months ago where we drank ævlebævle (a mixed drink) from urine bags...hhmmmm...I'm afraid I'm out of practise, I guess I'll have to do something about that soon.

And Peter qualified as a nurse last Monday, he got a 9 (=B). I could see how much pressure he was under so it was nice...and finally I got to meet his dad...

I have the ticket to Canada in my hand now, but I'm not quite safe yet. The chief physician said that I had to check out about insurance. We have only ordered a standard insurance because we didn't really want to think about it, but she told me that patients had come home with huge bills, so now I have to send in an advance commitment...I just hope they'll insure me.

Day 174:

Today I got the money for my critical illness. It got to 63.000 DKK...I've never carried that much money around ever. They sent a check and I went to the bank and cancelled my loan, which has haunted me for more than 5 years. Now I don't owe them anything.

Day 178:

I didn't have the small chemo last Wednesday. My blood tests were actually ok, although my thrombocytes were right on the limit on the day of the treatment. But to be sure that I'll get the big chemo the week before I go to Canada we agreed to skip this one. I feel better about having the big one just before we go rather than the small one now and then perhaps not the big one.

Speaking of Canada: Peter had a party last Saturday and it was really fantastic. I helped setting it all up, moving a lot of stuff etc. I could bloody well feel it too. And then the party, until 7am, woke up with a hangover and then back to tidy up. It was really nice to get to use my body in an active way again but I also found out where my limit is...for now.

And by the way, I was drunk for the first time in 6 months...Christ that felt good. Even though I regretted it the next day. I went to bed at 8pm on Sunday and got up at 7.30am on Monday...so I was TIRED. But it was worth it...a super party I won't soon forget.

Day 181 - 6 months:

So, six months have passed...6 months, 180 days..and for the last couple of days I've felt a need to take stock some way or another. How am I feeling physically??..mentally??..do I have more joys than sorrows??..am I more positive??..more negative??..Have I learned something??..do I HAVE to learn something??..a lot of thoughts have popped up the last couple of days. It probably peaked last night where I sat down on a bench near Damhussøen at 11pm and was philosophising for a couple of hours. It was bloody cold but it was nice to get a hold of my thoughts...

I can feel that I'm getting tired...tired of being a patient, tired of feeling bad, tired of adjusting my life to cancer, tired of not knowing how it all ends, tired of not being myself...tired of spending time every day thinking about cancer, to be reminded about it EVERY DAY, tired of it not leaving me alone just for a single day...

I envy all others who don't have to worry about cancer every day, I think it's bloody unfair that I have to be the one...

On the other hand I am happy about other things. A hug has more meaning to me, the sun shines, how nice it is to be able to work, the people that I've grown closer to in the process...

But I can't escape the tiredness. My psyche is under pressure every day, not a moments rest. I think it's because of the insecurity.

I've never really demanded a lot of myself. I've always been quite happy with things the way they were. If you ask people who know me I think they'd say that I'm easy to satisfy. Now I'm not so sure. There has to be other things to life than working for 40 years. I've developed a need to see the world, get out of my apartment and see things I didn't know existed. I think that's one of the reasons why I'm so looking forward to going to Canada in 2 weeks.

Attitudes like: "I don't have the time for it" or "I can't afford it"...Bullshit!!! It's a choice, plain and simple...of course within reason. But I think we limit ourselves and therefore we only experience a tiny part of what life has to offer.

I've decided that in future I want to travel a lot. Either through work or in my spare time. Out and experience other ways of life. Not that I have to like it, but I want to know that it exists. I have to get out and experience things...

Day 183:

Had a letter from Gouda travel insurance. Will they insure me???? Hell no!!!!! I called them yesterday and asked for an explanation. Well, they couldn't exactly give me one but would call me back on Monday. Anyway, I've already contacted Europæiske, hope they are more willing...I can't be the first bloody cancer patient who's travelling???

I've had stomach pains for the last week or so, and quite frankly it has made me a bit nervous. I'm thinking of course that perhaps the cancer has started to grow again. As I was going to Jeff's anyway for a bottle of extract I asked him to check. Fortunately, he could assure me that it's "just" an ulcer. I've had gastritis before, after the operation, and Lanzo helped then, so now I'm taking the pills that were left over, probably for the next two weeks or so. It'll be interesting to see if the doctors will make out a prescription based on Jeff's diagnosis. But the most important thing was that he reassured me that the cancer is dead and is slowly shrinking...and that the ulcer is probably because of the general destructive effect that the chemo has on the body...

C-minus 10 days and counting...

Day 187 - 6th series of chemotherapy:

Things have happened. First of all, I had chemo yesterday and now 24 hours later I feel ok. Didn't get back to my parents place until 2.30 am so I'm a bit tired.

Anyway, I've bought a proper back pack, we have the car ready in New York when we arrive, I've had my travel insurance through Europæiske, have bought a lot of Jeff's pills - he's going on summer holiday too...

By the way, Jeff was right about the ulcer. I've been taking Lanzo for 4 days now and there is a remarkable improvement. Even the doctors at oncological said that they often see this type of stomach problems after a tough chemo treatment. So now they've made out a prescription for Lanzo for me - based on Jeff's diagnosis...

C-minus 6 days and counting...

Day 191:

The last 2 days have been no fun at all. Those bloody pimples on my face and scalp, which are responsible for me not sleeping well at all because it hurts so bad just laying my head on the pillow. The last 2 days have been a mixture of sleeping several times a day and then wobble out to get something to eat. I'm seriously considering not taking more chemo...it' bloody hurts too much. I know it's over and done with in a couple of days and then I'll probably change my mind and "forget" how bad it was...

C-minus 2 days and counting...but I just can't enjoy it...

Day 193:

In less than 10 hours we'll be on the plane and I still haven't packed, so this will be the last the diary hears from me in the next month or so. Went to buy souvenirs with Peter, Line and Jeppe today. Great time, was a bit restrained by the bloody pimples though, but I think they are on retreat.

My stomach is actually ok now...Lanzo has worked and Jeff's diagnosis was right. I'm still taking the extra pills to Canada though, just in case.

I'm really looking forward to going now...in 24 hours I'll be in the middle of New York, it'll be so great to get away from it all...fantastic...and I've bloody well deserved it...

C-minus 10 hours...and still counting...

Day 241:

The idea was that I was going to write about the great trip to Canada and USA that Peter and I had...because it was bloody good. But unfortunately, I got ill while I was there and the cancer has grown. The first week was better than expected. We rushed around and I can't remember the last time I had that much energy. But around the 7-8 July my back and my stomach started hurting. Well, I've tried it before and Lanzo helped me, but now I was TAKING Lanzo...and it was still hurting.

I still thought it was bowel problems, which would go away, but after a week of growing pain it got too much. We bought some painkillers (non-prescription), which helped a bit. But not enough. I woke up several times during the night because of pain and therefore I got more and more tired during the day.

Because of - or rather I thought because of - the stomach pains I ate less and less. But when I also had trouble swallowing like I'd had before, I sensed that something was on the way.

To cut a long story short: During the last week I was so drained of energy from not sleeping and not eating that I mostly stayed indoor. I was so afraid of ruining Peter's trip, but we've talked about it and I don't think I did. My mood was lousy for more than half of the trip though, so I haven't been the best of companions. He has patience as an elephant has memory!!!

Well, now I'm home and I've been scanned. And quite right: The cancer has grown and the chemotherapy at Rigshospitalet has finished and they can't offer me more treatment for now. I have to see a professor about some alternative chemo though, but not until 2 weeks from now as he is on holiday.

And so is Jeff...if I need anybody right now it's him. He just have to take away the stomach pain and I'm happy. I take 6-7 showers a day (and night) as the water massages my stomach and actually eases the pain for 5 minutes...and for those 5 minutes it's like being in heaven after 5 weeks of pain, day and night.

For the last week I've been taking Kodein, but I'm probably all out and today I'm trying Temgesic. I'm not too keen on painkillers, so I'm screaming inside. But now I can't take it anymore. Last night I woke up at 2am and didn't sleep after that. Now I need some quiet. I've lost more weight and I'm not really eating at all. So I'm back on the Nutridrink again, but just swallowing is uncomfortable, so I have to squeeze it down.

And mentally?? Well, it's not exactly good news, is it. You feel they've given up on you..."can't be treated" etc. On the paper it's a big step towards the grave. So on the one hand I'm quite shook up and on the other hand I'm relieved I don't have to have more chemo. I was so against it from the beginning and also while having it, and now that choice has been taken away from me - for now anyway. Instead I rely on Jeff who'll be returning from holiday next week. He'll have to do one of his miracles. I'm certainly looking forward to seeing him.

Day 243:

For the first time in 5 weeks I slept for 6 ½ hours straight...Christ that was nice. Temgesic really helps against the pain, but now I don't care. I'm also taking Diclon and Panodil now...don't want to be in pain anymore.

Mom and dad bought some other nutrient supplements...really nice to drink something with a different taste.

Day 250:

I've been talking to a woman who works for Danmarks Radio, the News. She is doing some programmes about men and their needs when they get the diagnosis cancer. Apparently, there is a difference between men and women in that respect and the health system is not geared up for the men. She'll get back to me and talk to me later. It sounds quite interesting and I can only agree with her. When I was told that the cancer had grown it was obvious that the doctor and the nurse expected some sort of reaction. I think I was a bit too "cool" about it...and then you have to explain and assure them that you're not going to jump in front of a train etc....annoying...

I went to see Jeff the other day and he actually managed to take away some of the pain in my left side, where I seem to have a trapped nerve. At least it's better. Regarding the cancer, he couldn't understand at all that it had erupted again. Otherwise he said the 2 things I knew he would say. Eat more Linze, which make me throw up, and eat more than I do in general. Fortunately, I discovered that I can put the capsules in warm tea with lots of sugar...so now I can get them down...then I just have to have lots of calories...don't quite know how to do it. If only my throat would get better I could easily squeeze something down...but it's so hard when you feel that you'll choke on every mouthful...

We also talked about putting a tube down my stomach, and the problem would be solved...I've thought about it for some time, but I'll give it another couple of weeks...

I can feel that people have a hard time figuring out how I really feel. When they call or visit I'm very passive. And I think they find that strange. But firstly, I'm totally exhausted, so just talking makes me tired, which you note on my voice. Secondly, I don't want to repeat over and over what's going on...so now I just refer to the homepage, people just have to wait until I have some more energy. It's not that don't WANT to talk to them, it's because I CAN'T...I'm so tired nowadays...patience...

I've thought about why it took me so long to start taking the morphine...I think that in my head, I had the idea that once you start doing morphine it's one step before the grave. Then there's nothing you can do, you may as well lie down and die. Of course that's crap, I can see that now, but I think that's why I just suffered for so long...

Day 254:

I'm afraid I have to give in and admit that I can't get enough energy down the ordinary way. It is simply too uncomfortable that every time I swallow, it feels as if something has to come back up. So I'm seriously considering having a tube put in or having a gastrostomy done, so I can get some nutrition that way. It's not a nice thought to walk around with a tube sticking out of your nose or stomach, but I have to do something about it now. I hardly have any energy left at all and just talking a few sentences puts my whole system to the test.

Have stopped answering the phone, I can always send people an e-mail after hearing their message.

Jeff suggested I take even more Linze, but I can't the way things are now. Another reason for having a tube put in so they can just pour it down....

Day 260:

Well, things do happen fast sometimes in this little kingdom. This is how my week went:

Monday: Talk with professor Heine Høi Hansen about what to do now, now that the University Hospital can't offer any further treatment. But he did think he had a few questions for the pathologists, so he really thought that I would be able to start another chemotherapy within 2-3 weeks...

????????????????

The biggest problem now is my nutritional state, I weigh exactly 60,6 kg, which is 25 kg less than last summer...I need some energy and fast, but the problem is swallowing. He wanted to look into that too.

Tuesday: He calls me at 2.30pm and says that I have to me admitted to the hospital urgently and they would do 1 or 2 things. Put a "stent" in my gullet, which is a small plastic tube that keeps it open in order for me to be able to swallow or burn off some of the tissue to make a passage. In any circumstance I have to hurry, because they had an opening for me now.

Mom and dad came really quickly and we rushed to the hospital only to find out that it wasn't planned until Wednesday?????? Doctors sometimes have an idea that you have to lie ready in the hospital bed at 7am the day you have the examination. I said "no thanks" and "see you tomorrow"

Wednesday: I came to the hospital fasting and they attended me to quickly. They could see that the throat was actually closed up and therefore they tried to insert a stent, but it was impossible because it hurt so bloody bad when they tried to force it through the tissue. So we made a new appointment. Operation tomorrow with full anaesthesia to insert stent or possibly only widen the gullet.

Thursday came: And once again I showed up fasting and they gave me a bed that I couldn't change the position of the upper part on. Because of the pains for the last MANY weeks I move around a lot at home, showers, electric cushion, rice bag for my back and a lot of little rituals that makes it bearable. But here I had to lie fasting for 15 fucking hours and wait for them to attend to me. I was totally beat at 5pm when it was my turn. I was close to giving up and just go home...I didn't want to do that to myself. In my state of energy and fasting for 15 hours??????

Anyway, I was knocked out, it was quickly over and done with and they have now widened my gullet. They claim that I can now eat thin food, I don't agree, I can actually only feel a little difference. But if it can help my swallowing, it's a step in the right direction.

Friday: I got home from a night in a shitty bed. Christ did I miss being at home. I'm going back in on Thursday when they'll try a stent. What I was saying all the time is that it's no use giving me passage when I have no appetite. This is where I think a tube would help as I can then just give myself the food, regardless of whether I'm hungry or not. Finally I made the doctor see that, so the last chapter of this book has probably still not been written....

Day 268:

Right now...and for the last 1-2 hours have actually been some of the better moments for the last week, so I thought I'd better have a go at the diary.

3 days ago I was admitted again and had a stent put down my gullet, which according to the doctors would enable me to eat 100% normally. I drew their attention to the fact that it was actually the cancer that affects my appetite, so it wouldn't be enough just to make passage. So we agreed to put a tube down my nose so that I could squeeze various energy drinks into my stomach, hungry or not. Everything was done with full anaesthesia as otherwise, it would probably hurt like hell.

So I woke up with a plastic tube down my throat and another tube through my nose. I would rather have had a tube directly through my stomach, mostly to avoid to much irritation of an already irritated throat, but the doctor didn't want to risk sticking into an area with cancer cells which could then spread or it could heal badly or something. This decision was taken 2 minutes before I had the anaesthesia and I'm actually quite surprised about how little people knew about my situation. I often had to repeat answers to questions, they had misunderstood something, drained of energy as I was it was really frustrating...

Anyway, mom stayed with me for 2 nights, I wasn't feeling too well. I could read that with a stent I had to take Lanzo as nothing is stopping acid from my stomach from going up my throat=irritation=vomiting. They just hadn't given it to me. Luckily, I had some left from my trip to Canada, so I started with them. The bad thing is that it takes 2-3 days for them to start working. Which will probably be today...at least my throat feels better.

Apart from that, I produce quite a bit of thick slime and I can feel that the tissue is irritated because of the plastic tube. It has been squeezed down where really there is no room for it, but let's see...

But I can drink better now. Now I don't have to take just tiny sips, I can drink a couple of mouthfuls at a time, which will hopefully make it easier to knock down those damned disgusting energy drinks.

Day 269 - day 291:

As Søren is no longer with us we, his parents, will finish his diary and tell what happened since the last time Søren wrote in his diary.

As Søren wrote previously, he had a stent and a tube put down his throat, but as the tube irritated him too much, he took it out after only 1 ½ days. But without the tube Søren could not get any of the important energy drink. Likewise, he could not take any of Jeff's pills which were very important to get Søren's immunity system up in the highest gear. We could see that he got weaker by the day. On the 24th September at 1.30 pm Søren had an appointment with professor Heine Høj Hansen. After waiting for about 1 ½ hours we asked a nurse if Søren could have a painkiller as he was in pain. She would see too that, but at the same time she wondered why Søren hadn't been in to see the professor yet, as she knew that the doctors at the ward had finished with all the patients for the day and had gone home. In vain, she tried to get hold of the professor, but couldn't find him anywhere. It was terribly frustrating for Søren, but there was nothing else to do but to go home. As Søren has pointed out more than once during his illness - crap system - but now, only in a weak voice. We called the professor the next morning who said that he had waited for Søren the whole afternoon and that he couldn't understand what kept him. But this blunder and others we will be taking up with the doctors at a later stage. Søren was admitted the same day and was put into treatment at once with blood, salt/sugar water. On Thursday 27th Søren had an ultrasound scan and the kidneys looked fine. In the evening Jeff came. He could take away some of Søren's pains and they had a really good talk. Jeff was very concerned about Søren's condition as Søren was now so weak and he couldn't take any nutrition. On the Friday he had to have a gastroscopy done. Fasting and weak as he was, the examination was called off at 10pm. The next day at 1.30pm Søren had this examination done with full anaesthesia and at the same time they put a tube in one side of his throat so he could be given liquid nutrition. The professor wanted to start chemo right away but Søren wanted to wait until the following week, because, as he said, he wanted to have more nutrition before the chemo. But the professor explained to Søren that it had to be now if he was to have a chance to survive. They agreed to start the chemo on the following Sunday. Even though Søren didn't have the energy to have visitors, he really wanted Pernille, his older sister, to visit him on the Sunday. Pernille brought him a red heart from her and from his lovely niece Nadja. This heart was meant to bring him good luck. We came in to see him in the afternoon. At this time we knew how things were probably going to end. His blood pressure was unnaturally low and his kidneys had stopped functioning. There was no doubt that Søren knew how bad it was, even though he would not let on that he did. But he said to us - that he would still fight to survive - . Søren was more quiet at midnight and he went to sleep quietly Tuesday morning at 6.45 am with both his parents at his side. The staff around Søren showed enormous concern to him and to us, his parents. We said goodbye to Søren and also said thank you for the short time we were allowed to have him with us. The loss of Søren is incredibly big. We know that we have had a lovely boy and we have always been very proud of him. The doctors asked us shortly after Søren's death if we would give our permission to an autopsy. We are both against autopsies, but as Søren's attitude, in his too short life, was to always help others, well, we didn't hesitate for one second to give our permission. Just maybe, the doctors will be able to save another life after this.

When you read the diary you will see that there are many things that Søren found very frustrating, which he wanted to take up with the doctors etc. as soon as he got well. Therefore, we will at some stage take these things up, which Søren thought was so wrong in the system in connection with his illness/treatment and make sure that the doctors/staff are told this so that others may avoid what Søren had experienced during his illness.

On Saturday 6th October 2001, a glorious day of sunshine, a funeral service over Søren was performed at Jacobs Kirken in Roskilde, where he is both christened and confirmed. The church and the coffin was beautifully decorated with warm and brightly coloured autumn flowers. An amazing number of people, and especially young people, had come to the church to say their last goodbye to Søren. Of course we knew that Søren had many friends and an extensive network, but we were still surprised at his funeral on Saturday the 6th October. Over 150 people were present, family, friends, colleagues, former class mates, from school, high school and nursing school, from the Church's youth club. It was so nice for us to see that many hadn't forgotten Søren. The vicar spoke very personally about Søren as he had been a leader of YMCA/YWCA for many years and therefore knew him well. We will now give you an extract of what the vicar said standing by Sørens coffin:

"Søren's whole life was very much about helping and comforting others. When he was in high school he worked part time at a home for young mentally/physically handicapped people on Amager. Later he worked at Ringbo in Bagsværd, where he worked with older mentally ill/demented people. It was here he got the idea that he wanted to train as a nurse. Søren also had a great interest in the CISV club where he had been a camp leader at summer camps a coulpe of times and also at a couple of winter camps. Søren was a Christian and he was unshakeable in his faith. He once was responsible for performing a prayer in the youth club where he said:

"I believe we are put on this earth to light a light for each other. This means that we should do things for others to make them happy"

Of course, nobody can be happy all the time. You can have all sorts of problems that makes you sad. But that's when you have to think that God is always with you. No matter how alone you are, sad or down, God will always be there to listen and help you

"light a light for others"

The vicar read a letter from Søren's friends by the coffin. We have made an extract here:

"Søren is irreplaceable. He left a deep impression with all the people he touched. When Søren started to talk he mesmerized people with thoughts from his amazing mind. You just had to listen. And you didn't want to get up and go home. His good mood was unbreakable, he was a super optimist and a warm, charming friend. He blessed his friends with his concern, support and depth. Søren was selective when it came to friends, but once you had a place in his life, he was the best friend a person could possibly want. Søren could be "used" for anything - all moods from deeply serious to hysterical silliness. A friend you could call without checking the watch first - he'd just come by whether you needed to laugh or cry. An Søren's laughter was contagious!!!!!!! He was the friend who was always there and he never gave up on you. Søren's friends were often asked if they were proud of being his friend and yes...Søren's friends are privileged! Søren believed that there is more between heaven and earth. He had a strong faith which has helped him many a time. The good thing about his faith was that he didn't try to convince others - he let people be who they were and believe what they wanted. Søren Nightman could spend the whole night talking to a friend, sleep for ½ hour and then go to work. No problem. His mere existence was a support to the people around him. It didn't matter whether you'd talked to him two hours ago or a month ago. As long as you knew he was there. It was safe with Søren. It was safe because he was Søren and with him you could always find trust. His self confidence was amazing. He radiated the belief he had in himself and in life. In discussions, conversations and conflicts his arguing was always strengthened by this and it became so realistic and true because he seemed unshakeable. Singing was a big part of Sørens life. He loved to sing, both because of the music and the thoughts and feelings the words instilled in him. Søren used a lot of his time exploring the internet and various computer games and he was the only one in his group of friends to have a key board insured against Coca Cola. Even though Søren didn't open many books while training to be a nurse he was an excellent and sought after nurse. Like he said, he just knew his business. When you asked him, how that could be, the answer was: "But I just talk to them"! Søren's capacity, resources and energy was remarkable and THAT was what made him a great nurse, colleague and friend. CISV developed into a central part of Søren's life. His firm commitment made sure he could do what he was best at and what he loved the most:

To spread love and warmth, be serious, play, talk, cuddle, have a good time and make being together safe.

Yes, Søren IS irreplaceable

After that we heard a song by Dionne Warwick: That's What Friends Are For, which Søren was very fond of and which was always sung at CISV meetings.

So this is the last chapter of Søren's diary and we hope that many have benefited from reading it and also from the home page. We all miss Søren terribly, both we his parents, his sister Pernille and his little niece Nadja and not least his many friends.

Once again thank you to all of you who have followed Søren in his diary, which we hope have been able to give help and comfort to others. Likewise, we would like to thank everybody who came to the church and who participated in the memorial service and made the day beautiful and memorable.

If anybody would like to comment or if you have any questions, you can still write in Søren's guest book, but you are of course also welcome to write us, as the homepage will probably be shut down at some point. We may be able to give you some answers, now that we have been through Søren's illness.

Many hugs to everybody
Søren's mom and dad, 11th October 2001
Tove & Svend Erik Terp
Anemonevej 19
4000 Roskilde
E-mail : se.terp@pret.dk

*Translator's notes.