Emergency visit at the hospital

We have had various rounds of flu running in the family the last months. Against all odds it has hit everyone else except me. That is until a week ago when I came down with a sore throat and running nose, and a pretty bad cough.

On Monday evening this week I got some fever and had to call the hospital to ask for advice. They have instructed me to contact them if I'd get fever higher than 38 degrees. I was told to check in at the hospital immediately.

I went to the hospital's emergency room and the doctors ran lots of different tests and concluded it most likely was a virus infection. I had chest and sinus X-rays and all was fine. I got antibiotics intravenously and had to stay the night over at the cancer ward. It was a rather sleepless night with diarrhea and vomiting. At home my wife had come down with exactly the same stuff. While she had to manage on her own I was surrounded by doctors and nurses running one test after another. Luckily, in-laws stepped in to help with the kids on Tuesday morning.

Tuesday morning my stomach had calmed down but I still had fever. The doctor said they still needed to find out exactly which virus(s) we were fighting against but the intravenous antibiotics treatment seemed to work as the level of infection in my blood was declining. I was told I may get home today (Wednesday).

This morning the doctor popped in to say that test and blood values all looked good, but as I still had over 38 degrees fever I was not allowed home until tomorrow. It seems they take a regular flu pretty seriously here at the cancer ward.

This evening a friend of mine visited me at the hospital and we played a few rounds of backgammon. That was a nice break from the many poor shows that run on TV.

Results of the November CT scan

On Monday morning we had another exciting meeting with a doctor at the hospital. For the first time after my diagnosis we met a doctor we have met once before. He's a very nice guy and also very knowlegdable in his field. He is actually this one doctor that attended the Nordic conference in September. I was a bit nervous again when walking into his office. Was the fact that they had scheduled me for meeting this particular doctor a good or a bad sign?

He started off quickly saying the results of the scan were good and that the tumours in the liver and in the surrounding lymph nodes had shrunk further compared to the scan in September. This means the drugs I'm on are still effective and will be continued for three more rounds until next CT scan in January. Mr. Big was now down to 7,2 cm x 5,0 cm compared to 8 cm x 5,2 cm in September. I was at first a bit dissapointed hearing the measures as I expected the shrinkage to be much more, especially taking into account the dramatic drop in the CEA value. When we discussed more about this I realised it is not that straightforward as that of course. Our understanding about what he explained is that the bigger tumours in the liver have more connective tissue in them, supporting the structure of the tumour. These are not cancer cells so they won't be destroyed by chemo. The doctor, anyway, emphasized not to worry to much about the measures but focus on the direction which is still good. I figured I should maybe be happy with this as the doctor said these are good news. I may write more details about the discussion and CT results later.

I spent the next four and a half hours in a hospital bed getting the seventh round of IV. They're putting the drugs in faster now. There was a guy in the neighbour bed who was starting his third round. I felt like a senior "drug addict".

Winter has come to Tampere. Lots of snow and exciting days for the kids. We've been on skis and sledge every day.

Riga

A childhood friend of mine from Norway paid us a visit a couple of weeks ago. We have a common passion for playing backgammon. It's a game with a good mix of luck and skill. We spent most of the time in cafes downtown Tampere drinking coffee and battling for the points of the game.

While my friend was visiting us our younger son became ill with what we first thought was a common flu. When we phoned a nurse he said that it sounds like hand foot & mouth disease, there's an epidemic around in Finland. It is a very common children's viral infection where you usually get blisters in your mouth and throat. That explained why he started crying every time he tried to eat! Other than that the disease luckily usually goes over quite fast, but it is very infectious. Our older kid got it on Wednesday. And my wife on Thursday. And I, who was told to be very careful with all kinds of infectious diseases, as with chemo I would have less resistance to infections, didn't get it.

Last weekend my wife and I jumped on a short trip to Riga in Latvia and left the kids home with grand-parents. The old town of Riga is pretty nice with a lot of good restaurants and cafes. We tried out a bit of the local cuisine. One evening we had an exciting dinner in Salve, a restaurant with real Latvian food. We also found some interesting and cheap self-service places where we had lunches, "Sefpavars Vilhelms" served a variety of pancakes and Pelmeni XL served the famous Russian pelmeni.

The weather wasn't too good though. On Sunday we visited the Saint Peter's church which has a tower with a nice view. The only way up (and down) is with an elevator operated by an elevator chauffeur. There was a sign next to the door saying the elevator only runs every 10 minutes. When we got out on top of the tower it was so windy and rainy that people just wanted to get back down. The chauffeur showed no mercy and the elevator was back 10 long minutes later.

On Thursday I had the CT scan. Tomorrow morning I'm off to the hospital to hear the results of the scan and start a new round of chemotherapy.

Home renovations

Lately I've spent some time at home doing renovations that we have kept on postponing for years. We'd like to have the walls of the entrance and hall areas painted. I spent quite some time ripping off the old wallpapers. Then we discovered some damp or possible water damage in a concrete wall. We had to call in some professionals to have it checked. The professional did some measurements and concluded the wall is fine and that the damp must come from the floor. More investigations and measurements are needed so the painting project is on hold.

We started a toilet renovation project instead. I took out the old furniture from one of our two toilets and installed new furniture. I needed to drill quite a few holes in a tough concrete wall so I borrowed a really good drill from a neighbour. The drilling went smooth. Maybe too smooth as my wife discovered the following day I had drilled straight through the wall and decorated the wall in the opposite room with huge holes. Great, now I need to rip off the wallpaper on that wall, fill the holes and put wallpaper back on.

We also want to change some old closets in the apartment. Finding the right balance between solution and price is pretty time consuming. At least for us. Then the challenge of finding time to visit stores with two kids in the family.

We're thinking of outsourcing the hall painting project to ensure that at least something gets done before Christmas.

Round six

I was in at hospital again today to start the sixth round of treatments. We had first the doctor's appointment in the morning. Again, a new doctor. We went through the blood values as usual. They were all fine, some slightly outside the range but still normal for cancer patients. There was a surprise. The value of the CEA marker had dropped from 3482.0 at the end of August to 228.3! That's pretty good news. The doctor wouldn't speculate what this means for the size of the tumours. The next CT scan is scheduled in three weeks and will tell the facts. The CT scan will be a routine full body scan to check if there's any cancer elsewhere than in the stomach region.

We discussed about future treatment alternatives. Nothing can be decided before the CT scan. Surgery could be an alternative but for surgery the tumours in the liver must be small enough and their position in the liver must be suitable for surgery. Doctors also seem to be reluctant to do surgery if there is cancer outside of the liver, e.g. in lymph nodes. So I am not a candidate for surgery yet. Continuing with chemotherapy is possible and more likely in this phase. The chemotherapy I'm on now will at some point of time loose its effect but exactly when is very individual and cannot be predicted. The doctor said some people have been on the same chemotherapy treatment for years. If the chemotherapy treatment has to be changed there are at least four to five other medicines on the market that could be used instead. Different kinds of radiotherapy could also be used in combination with other treatments, e.g. surgery.

The IV chemo took some five hours. On my way home I stopped by in a café close by to briefly celebrate that great CEA value. I ordered tea and a cake with some orange icing. Then rushed to day care to pick up the kids.

A Norwegian professor

Back in September there was a Nordic event in Tampere about surgery of my type of cancer. The exact name of the event was “Nordic post graduate course in colorectal surgery”. My wife found the agenda and participants list on the internet. Looking through the list, she found a couple of interesting names. One of the doctors I've met at the Tampere University Hospital was to attend to talk about use of chemotherapy as additional treatment for patients with cancers that are thought to have spread outside their original sites. She also noticed a Norwegian professor on the participants list. He works at the university that I studied at in Norway (NTNU) and is at the same time a surgeon at the university hospital in Trondheim.

I sent him an email asking if he would have some spare time while being in town to discuss my treatment plan and if there were differences in treatment practises between Finland and Norway with my type of cancer. He actually replied but after the event was over. He had been too busy to read all his emails before the trip to Finland. He explained that guidelines in Norway and Finland are the same and that I would have got the same treatment plan in Norway. He also said I'm in very good hands at the Tampere University Hospital and that he personally knew the very competent head of the department for colorectal surgery there.

Trip to Norway

Since I am feeling fine we used the opportunity to travel to Norway to my parents' farm. My wife and our youngest son stayed for a long weekend, and I stayed for one and a half weeks with our oldest son and came back on Monday night this week. All my sisters and their families visited, which was great. It was a bit exciting to meet relatives and friends at first. I felt many people were a little anxious what they'd see when they met me for the first time after the cancer diagnosis. How does a person that is seriously ill from cancer look like? Hair gone? Brain still working? I could imagine I would have similar thoughts if I were in their situation. However, I more or less look like I used to and I have not lost my hair. Actually I feel pretty good and sometimes I even forget about the entire cancer situation. I think many were a bit relieved.

It's nice to bring the kids to my parents' farm and watch their excitement about small things. The first morning our oldest kid woke me up asking if I heard something outside. Heard what? I asked half asleep. We opened the bedroom window and heard loud and clear one of my parents' roosters. Another morning, we heard the tank lorry that picks up the milk from the cows. Our oldest kid got so excited he ran out in pyjamas to watch, and it was not that warm outside. Yet another morning he complained he was woken up in the middle of the night by a mooing cow. In fact so was I.

My father has a rather new tractor. It's a New Holland and our oldest kid loves going for rides with it. He got very interested in how all the levers and buttons worked. The tractor has high and low gear groups of which have activation buttons and dashboard pictures. The high gear group has a hare symbol and the low gear group has a turtle symbol. He got to press these while we were driving and this way selected hare speed or turtle speed. Quite brilliant and even kids get that hare is for fast driving and turtle for slow driving. He also made bargains with my father, myself and my tractor-driving sisters to take him for rides. My father was rated the best driver while my sisters and myself were pretty good runner-ups.

Once our oldest kid joined my father filling diesel on the tractor. He got very interested in how the diesel tank worked and how the tank was re-filled. We explained my father would call in a tank lorry to do that. He wondered what colours the lorry had. Later we visited one of my uncles and his wife. They also run a farm, and they have four tractors. My uncle started telling about the age and names of the tractors when our kid suddenly interrupted asking where his diesel tank was. Kids are cute.

The youngest loves exploring the surroundings. He fancies anything that can be pulled, pushed, turned and bent, and often subsequently broken. He discovered that he could stop my parents' dishwasher by turning a knob and he wouldn't let go of his new hobby. We had to fix the position of the knob with tape.

One of my hobbies as a kid was climbing trees. I've climbed every single tree in a pretty large radius around my parents house. It was great fun except that one time I couldn't find my way down and had to shout for a long while until my parents came for rescue. I've had this weird idea that it would be nice to show the kids great trees to climb on the farm. However, nowadays the woods there seem to have grown into a jungle and also the amount of ticks seems to have exploded. Possibly as a result of the warmer climate. Some of the ticks could carry various diseases, especially Lyme disease (borreliose in Norwegian), which makes walking in the woods a bit discouraging. It's a pity as I used to love the woods myself. I guess we'll be concentrating on tractor driving in the future.

Some friends of mine threw a party and I got to make the invitation list. We gathered around twenty people and had a great Saturday night. I thought afterwards we'd probably never have done that if it wasn't for my situation.

Today I was forced back to the cancer reality. I had to go to hospital for another treatment round. I had no doctor's appointment this time and was put straight onto another IV. In the blood test they had measured only some very basic values like red and white blood cell count and level of infections which were all fine. We interpreted not seeing a doctor this time so that they believe the liver and body are functioning fine and that they will give Avastin a bit more time to work, until the next analysis of the situation.

Flying high

When I was 21 years old I applied to become a pilot in the military, the Norwegian Royal Air Force to be more exact. I was lucky to pass loads of tests and interviews and was one out of 20 that got sent to actual pilot training at Værnes outside of Trondheim. The training was at the same time a selection process so people got sent home if progress wasn't at desired level. The pilot school was to start January 1992 and I had the previous autumn off. I decided to go back-packing for some months and ended up in New Zealand at the end of the trip. I took a few glider plane lessons with the purpose of getting some flying experience and in particular practising landing. I had been tipped off that landing your plane is the part of flying one typically struggles with in the beginning. I discovered pretty fast that knowing when to start flattening out from the approach to the air field wasn't that easy. I once got a new instructor on board that had misunderstood my level. She let me land the plane without herself touching the stick. I'll be honest. It was a pretty hard hit. Luckily we landed on grass and I think the plane survived. On next round she didn't let go of the stick.

In the pilot school I got to fly 30 hours in a one propeller Saab Safari trainer including two rides on my own circling the air field doing touch and goes. On a day in May 1992 we were seven students left and the management decided it was my and another guy's turn to leave the school. His name was by the way also Jan Arne. A funny coincidence as I think he was the first other Jan Arne I've ever met. After we left, the five remaining students got sent to US for further training. I was naturally disappointed then but afterwards I was actually relieved. The flying part was fun enough but I was close to a very long career in the military and most likely on a military base on the outskirts of Norway. It was one of those major turning points in life. I became an engineer instead.

We have a friend who's into flying gliders and is even an instructor. Last Sunday he took me flying. The air field is located in an area called Teisko roughly 50km north of Tampere. We got towed up by a propeller plane, released at 500m and had a one hour long flight. It was great to be up there again, 17 years since last time. Gliders are really a nice way of flying. No noise from any motor and you gain height by finding thermals, warm raising air. There is a lot of skill and experience needed in finding those. During the one hour flight we had, a junior pilot had done three flights.

I was also flying high on Wednesday last week, but more mentally. I went to see Finland-Germany, football world-cup qualifier in Helsinki with another friend of mine. 37000 people showed up at the Olympic stadium and made a great atmosphere. Finland has a new coach and we were a bit uncertain what he actually stands for. We were impressed as Finland did an amazing game. Good football and they were in lead three times. Germany however managed to equalise them all and the score ended up being 3-3.

Birthday presents

Today I turned 38 and spent the whole day in hospital. We started off with the usual doctor's appointment in the morning. Again a new doctor we haven't met before. She had a title indicating she was a senior with a lot of experience. When we entered the room I was nervous about hearing the results from last week's CT scan. My wife broke the ice by saying today was my birthday. The doctor replied congratulations and that she luckily had good news. The tumours in the liver had shrunk, many lymph nodes had shrunk back to practically normal size (previously described as "pathologically large"), and no new tumours in the liver could be seen. The lungs are still clear as well. The doctor said these were very good results and that this is going to the right direction.

We discussed a while about the largest tumour I have in my liver. I call it Mr. Big. In the CT scan done on June 30th it was measured to nearly 10 cm at its widest. In the biopsy done on July 16th it was measured with ultrasound to be 13,8 cm x 9,5 cm. In the CT scan done last week Mr. Big was measured to 8 x 5,2 cm. We wondered how the tumour could be that much bigger on July 16th, only 17 days after the first CT. The explanation we got was that CT and ultrasound are two different technologies that shows different pictures possibly from different angles and that such deviations could happen. I'm still not sure which is the right measure to compare to but doctor said the important issue is that there is proof the drugs are shrinking the tumours.

There was more positive news. The doctor explained that the most effective drug out of the three I'm on is Avastin. However, Avastin was added just a few days before the CT on September 9th. That is such a short time that the drug wouldn't have had time to make an impact. The shrinkage we now see is a result of the two other drugs I'm on (Eloxatin and Xeloda). Because of this we expect to see more good results in the next CT scan.

I showed the doctor my feet. They have never really been good-looking. The doctor wasn't impressed either but rather because I have some skin and blister issues. She said I needed to treat them better in order to avoid infections. That means more cream and salty water foot-baths. She also lowered the evening doze of Xeloda from four to three and said it will not have an impact on the cancer reduction effect.

I got out of the hospital at 1630 and picked up some pizzas on my way home. Later we went to sauna with the kids. Yes, we took out the "vihta", which is the birch thing used in Finnish sauna. To top things off, after kids were in bed I watched Rosenborg (Norway) beat Brøndby (Denmark) in a UEFA cup football qualifier.

And the birthday presents? In addition to the good news from the doctor, I got for example an electronic photo frame, slippers, lottery tickets to be scraped, lovely warm set of scarf, hat and gloves from wife and kids to keep me warm because of Eloxatin side effects. Last but not least, I got loads of phone calls and messages from friends and family. I have to say it was really a fantastic birthday!

At in-laws

On the way to Kankaanpää, between the towns of Hämeenkyrö and Ikaalinen there's a house situated on top of a hill with a beautiful lake below it. The only thing is that the house is surrounded by thick forest so you can't really see the lake from the house. It always reminds of one of the small differences between Norwegians and Finns. For Norwegians, a good view is looking far away at sea and mountains. For Finns, a good view is looking into the forest. I would have cut down those trees.

I borrowed a bike from my in-laws and set out to explore the town of Kankaanpää. There isn't a lot to explore really. Once you've visited the Reima factory outlet (Finnish manufacturer of quality outdoor wear) and the town church you're done. I cycled past a sign “kids' own flea market” while heading out of the town. There's a lake nearby and I tried to find a way around it. I ended up in someone's garden and decided to cycle through a suburban area instead. The weather was great and I thought this would be a good time to think about greater things in life. However, I couldn't get that flea market thing out of my head. I don't quite get it but Finns are really passionate about flea markets. You find them all over with different themes. Close to where we live there's a flea market where you don't even do your own selling. You leave your stuff in a booth and come back a week later to collect the money. That is, if there's any money left after you've paid the rent of the booth.

Today I had another CT scan of the stomach. I will probably get to hear the result in next week's doctors appointment on Thursday.

Another CT scan

I survived the weekend without any nausea this time. The new medicine I got was really efficient. The only side effect has been my brain, or the lack of one. Been pretty tired in between. My wife found a term on the Internet, chemo-brain.

I got paranoid after reading Lance Armstrong's book. His cancer spread to the brain and one symptom he had was blurred eye-sight. My own left eye has been a bit blurred for the last one and a half years and we've been asking the doctors if there could be something in my brain as well. We've been told that is very unlikely. During last week doctor's appointment we asked if I could have a CT scan done on my head just to have the issue cleared out. The doctor said “let's do it”. The scan was done on Monday this week and a doctor called me back on Tuesday telling me there's nothing abnormal in my brain.

Yesterday we went apple picking at some friends of ours. They give away apples and my wife uses the opportunity to make apple jam. It was cold, rainy and dark and it felt like a day in November. The hot chocolate we were offered afterwards was really needed.

Right now I'm off to parents-in-law for a long weekend with the kids. They live in a small town called Kankaanpää roughly 100kms away.

CEA

CEA is a marker for my type of cancer and the value should be for a healthy person between 0.0 and 5.0. In practise it shouldn't exist in the blood. In my blood test on June 23rd the CEA value was 6257.1! The values are very individual and can't be compared to other persons with same cancer, but it does show that my case is serious. I called the hospital today to check if the value of the CEA in the blood test on August 26th had arrived. It had. The value had gone down to 3482.0! This is at least going to the right direction.

After the IV on Wednesday I've been pretty tired but still waking up at around four in the morning not easily falling back asleep. This morning I woke up at the same time just to hear our youngest kid who sleeps in the same room shout “harepus”, which is Norwegian for “bunny” (English) or “pupu” (Finnish). He went on shouting “harepupu”, combining a bit of Norwegian and Finnish. He was still asleep and hopefully did not have a nightmare about loosing his beloved green bunny. For a change it felt quite nice to wake up at four.

Third round of treatments

Had a long day at hospital today. In the morning we (my wife joined me) were supposed to meet the same doctor we met three weeks ago, but he sent his apologies. He had something else and another doctor stepped in. We have now seen a new doctor every single time we have been at the the hospital. Anyway, the new doctor was very nice and knew my situation. We went through the usual stuff first, how I felt and about the side effects I had had during the second round. I told her about the nausea I seem to get for a couple of days and that Primperan is not helping enough so I mostly just manage to lie on the couch those days. She prescribed me new and supposedly much better anti-nausea medicines. We talked about the sore soles of my feet. They are fine now but she wanted to lower the morning dose of Xeloda.

We discussed the values of the blood test I took yesterday. We were especially excited about finding out the value of the CEA marker, but unfortunately the value was not in the system yet. It seems it takes longer time to analyse than other more usual values. All other values were good. For example, they measure the AFOS liver value every time. It should be within the range of 35 to 105 and my value has been over that since the first blood test in May. The highest value was just before I started treatments when it was 177. After that it has come down and in yesterday's blood test it was 113, almost within the range.

We discussed Avastin. The doctors have not wanted to add Avastin to the treatment as there was some blood in my stool earlier from the rectal tumour, and Avastin should not be given in that case. The drugs I have been given this far have done something to the tumor so that the bleeding has luckily stopped. The doctor said this is a positive sign and decided therefore to add Avastin to the third treatment round. So I'm now on Eloxatin, Xeloda and Avastin. She also scheduled the next CT scan in two weeks. In the CT scan they will see if the liver metastases are the same, growing, or decreasing in size.

The infusion, IV as I've learnt is used in English, took five hours this time as Avastin was added. I tried to finish Lance Armstrong's book. At half past four in the afternoon I got to leave. I left with a pretty positive feeling. At least the drugs I've got so far have had some impact.

Meeting with psychologists

The nausea last week lasted for around three days and Monday evening last week I was starting to feel quite fine again. It is the Eloxatin that is the cause of the nausea and it typically hits days 3-7 after the infusion. I'm considering trying out another medicine than Primperan to cope with the nausea next time.

I was supposed to go and see that Norwegian psychologist last week's Monday but as I didn't feel too well I called him and had the appointment moved till Wednesday. On Wednesday I jumped on the train to Helsinki. I learned first of all that he's a psychotherapist and not a psychologist by education, though for me it does not make a difference. We talked about his education and experience, what services he provides and about my situation. It was good to discuss matters in Norwegian and he made a good impression. However, he wanted a set-up where he'd meet me twice a week for a longer period of time. I said I needed some time to think about that as travelling to Helsinki that frequently could be tough especially if I will have side effects from the chemotherapy every now and then. He said we could try and do some of the conversations on phone. We also discussed the possibility of getting financial support from the Social Insurance Institution of Finland (KELA).

On the train back and forth to Helsinki I read half-way through Lance Armstrong's book “It's not about the bike”. He was a professional cyclist that got testicular cancer that spread (metastasised) to brain and lungs. Against all odds he recovered from the cancer and returned to cycling to win Tour de France seven years in a row. We have found many other against-all-odds stories on the Internet which has helped us keep up a positive spirit.

Yesterday, one week after meeting up with the Norwegian psychotherapist in Helsinki, my wife and myself had an appointment with a hospital psychologist at the Tampere University Hospital (TAYS). This is a free-of-charge service that's included in the treatments I'm getting and we met her for the second time. Among a lot of issues, we talked about how to include children into this process. We have so far told the older kid that I'm sick and need to go to the hospital every now and then. She recommended to be open with the kids and not to create an atmosphere that there's something secret going on among the adults. She also gave us some hints how to tackle tricky questions from kids like if dad is going to die. We could just answer that I'm feeling fine now but I may not become as old as grand-father. She also recommended us to attend a one day family therapy session in Helsinki later this autumn.

Upon my request the hospital psychologist had checked if I would get any financial support for seeing the Norwegian psychotherapist in Helsinki. It seems challenging unless I would get a doctor's referral from the cancer treatment department at the hospital. As I already have this one psychologist at my disposal free of charge it will probably not work out. Anyhow, travelling twice a week to Helsinki would have been too much anyway.

By the way, a new side effect appeared last week. The sole of my feet got sore and I started getting blisters. This is a documented side effect from the Xeloda drug. It is much better now and it seems to disappear.

Second round of treatments

I started the second treatment round on Wednesday. The Eloxatin infusion took only three hours and I was sent home right afterwards. In addition I started the two week period of Xeloda pills. I didn't feel any side effects until Friday evening when some nausea hit. I've had it throughout the weekend and tried to manage it with the Primperan medicine. I've been feeling kind of OK in between but I think I've still spent most of the time on the couch. Hopefully it will pass soon.

Tomorrow I'm off to see a Norwegian psychologist at the Helsinki University Hospital. I've met this guy in a Norwegian children's club but didn't know he was a psychologist until my wife found his web site from the Internet.

Meeting with doctor at Tampere University Hospital

On Tuesday we met up with a doctor at the hospital. The doctor was really good to talk to and he patiently replied to our questions. Guess I have to admit that my wife was the one who was mainly asking and she had a long list of questions prepared beforehand.

We asked if surgery of the rectal tumour would be a logical step but he said that for that I would have to take a break from the chemo at least a month before surgery and a month after surgery, so at the moment it is more important to try to shrink the tumours. They are still considering adding Avastin to the medication maybe next round or the round after that.

We have been wondering why my treatment is called "standard" as most rectal cancer patients are over 60 years old, would I (younger, in good health otherwise) not be able to tolerate something even "stronger"? The doctor replied it is standard because it is the most efficient treatment available at the moment. There is another antibody treatment in addition to Avastin in test phase at the moment but not used for treating patients in Tampere University Hospital (TAYS) yet. Avastin is a bevacizumab drug, the new one is called panitumumab.

The doctor mentioned that calling a cancer incurable means that even though chemo would make all tumours disappear, they are very likely to reoccur. Despite that, even the option of making all tumours disappear for a while sounded really good.

The blood tests that were taken on Monday did not measure cancer markers so we don't know yet how the chemo is working, they were just checking I was in ok condition to start the second round of treatment, but most of the other values (liver values, blood values) that they did check had anyhow improved slightly which sounded good. They will check the cancer markers and take another CT scan probably after three rounds of treatment.

The doctor stressed again it is important not to lose weight, because he said the cancer tumours will always get their nourishment from nearby tissues but if I will lose weight the rest of the body will have less energy in use.

A café experience

I'm now done with the two week period of Xeloda pills and I've felt completely fine for one and a half week. Next Monday I'm going in for a blood test and on Tuesday we have a doctor's appointment at the hospital. We hope to get some more information about the treatment plan and possibly some early indicators if the current treatment has made an impact. On Wednesday the plan is that I'll start the second treatment round. To our current understanding that means another Eloxatin infusion and another two weeks period of Xeloda pills. We don't know yet if or when they'll put in Avastin.

We visited yet another place unknown to me when my sister was here. In Kangasala, a neighbour county, there's a willow farm called Marjamäen Pajutila. A pretty place in the middle of the woods. They had a café with the best cake selection I've seen around here. I'll definitely go back and try some more cakes one day.

We booked a traditional Finnish cruise for the weekend. We'll leave from Turku Saturday evening, sail to Stockholm, then sail back to Turku on Sunday and arrive in the evening. Kids are excited and so are we. Parents-in-laws and sister-in-law will also join.

Tampere United lost to Artmedia from Slovakia in Champions League second qualification round. I went to see it with a couple of friends. First half was excellent.

Summer is here

Summer finally hit Finland. We have had around 25 °C for a few days and been able to do some real summery things. Like putting up inflatable pools in the garden for the kids and go swimming in our nearby lake. The temperature on the beach the other day was officially 18,5 °C and I've yet to go swimming myself.

We've had a good time with my sister and her husband. They've visited us in Finland four times during these years and with that they're on top of the Norwegians-visiting-us-in-Tampere statistics. We haven't been around the town that much but spent most of the time in the home surroundings. They do really well as Norwegian language teachers for the kids.

One of our friends did something awfully nice. She was making lasagne, made two portions and gave the other to us. That was really helpful as we could skip one day of cooking and spend more time just relaxing and enjoying the summer, and that I am feeling well.

The nausea I had in the beginning of the week disappeared on Wednesday and I've been totally fine since then. Haven't taken the anti-nausea medicine (Primperan) since Tuesday either. No other side effects have kicked in yet. I've only a few more days to go with the pills (Xeloda) before the compulsory one week period off drugs.

First encounter with side effects

The drugs I am on currently are Eloxatin and Xeloda. The first one is infusion done at hospital every three weeks. The latter one is pills I have to eat morning and evening for two weeks, then a week off, then back on for another two weeks and so on.

We got home on Friday alright. During the afternoon I started feeling a slight nausea, which grew in strength during the weekend. It started to get difficult to eat and I really had to concentrate hard on getting anything down. I started taking some medicine called Primperan to try and cope with the nausea. It helps but I need to experiment a little more before I know how much I should take and at what time of the day.

Yesterday, Sunday, was my worst day. I had slept badly during the night, and I also noticed I had lost some weight since the first time I saw the oncologist. My wife started to get worried as the doctors told us keeping the weight is very important to have energy for the treatment, and also the drug dosage is calculated based on height and weight. I took some more Primperan and today has been a pretty good day all in all.

For the first time in my life my target is now to eat as much as possible and although food should be healthy it should also contain a lot of energy. I walked to the local store and bought some high-energy drinks, nut bars and other goodies I wouldn't normally buy. One of our neighbours invited me over for coffee and buns. I managed to eat one and felt happy about that. My wife brought me a strawberry milkshake from MacDonald's, but after emptying that I had to lie down on the couch.

Tonight one of my sisters and her husband will arrive for a visit from Norway.

Starting chemotherapy

I'm sitting at a laptop at the hospital and have just started the chemotherapy. First infusion is done and first set of pills taken. I feel good and no side-effects so far. Looking at the long list of stuff I could get it would be a surprise if something wouldn't kick in during the next days. But wasn't the treatment supposed to start next week? Yes, it was and this is what happened:

Yesterday morning I was supposed to check in at the hospital around 10-11 in the morning for the liver biopsy. At 9 in the morning I looked at my phone and had a missed call from the hospital. I called back and the nurse said the lab had wanted me in as soon as possible. I took a tooth-brush, tooth-paste and a Norwegian book and ran to the car. At the hospital they checked me into a single-person room with TV, fridge and a microwave oven. I wondered if they also had a waffle iron so I could make my own waffles. If my wife would bring me some dough, naturally. I was thrown into a bed and moved over to the lab area. I had to wait for half an hour before they pushed me into a room where a doctor was waiting for me with ultra sound equipment and some long needles. I don't need to go into the details but I got some local anaesthetics and didn't actually feel a thing. I was told I couldn't move for the next six hours to let the wound start healing. I would also have to stay at the hospital overnight.

Back at my room, I watched TV for the next six hours without moving. Good luck the Finnish broadcasting company (YLE) has so many great shows on during the day. That was a joke. At least they had Eurosport which sent live from Tour de France. I had the volume muted so I didn't actually realise that a Norwegian won the leg until I read it from text TV later.

In the evening the nurse said doctors may plan to start the chemotherapy already the following day. She didn't know anything more and I would get more information in the morning. The following morning the same message was given and that the doctors were working on getting the drugs ready. My wife who was at work and myself were a little bit puzzled and in the afternoon we asked if there was any specific reason for starting it so soon. There wasn't any other reason than that blood tests were good, biopsy had been good, the calculation of drug amounts had been done and there were spare rooms at the hospital. Simply, there weren't any reasons not to start it right away. Tomorrow morning (Friday) I should be able to get home.

By the way, the book I'm reading is "Circle's End" by Tom Egeland. It was published in 2001 and is in some ways similar to the famous "Da Vinci Code" by Dan Brown that was published two years later. If you enjoyed the "Da Vinci Code" you will definitely enjoy "Circle's End". It has been published in many countries, also in Finland by Bazar.

First appointment with oncologist

Yesterday I had the first consultation with the oncologist at the Tampere University Hospital. My wife was there with me. The doctor seemed very knowledgeable and the meeting was quite fact-based. There wasn't a lot of time to discuss and as we already had seen an oncologist at the Finnish Cancer Society we let her to do her stuff without too many questions. We were told that they would put me on two different drugs starting Wednesday next week. One of the drugs is done as infusion at the hospital and the other is pills I will take at home. The infusions would be given every three weeks for some time. I would not get on Avastin in the very beginning but they would most likely add that drug as well a little later. They would do a CT scan every 3-4 months, analyse the situation and make changes to the treatment if necessary.

They still did not know exactly what type of cancer I had as the biopsy of the colon tumour that the gastroenterologist did had no cancer cells in it. In other words, that was not a good biopsy and for this reason they needed to schedule another one and they would take that of a tumour in the liver. This was the reason why they would not add Avastin to the drug list as it could cause bleeding from liver. They scheduled the biopsy for Wednesday morning.

Then we spent a lot of time with the nurse going through the details of the drugs and possible side effects. Those are all individual so I may or may not get side effects. Anyway, the list was quite long and I would get some additional drugs to manage some of the possible side effects. One common side effect was a strengthened feeling of cold. A bottle from the fridge could feel lots colder than it actually was, even painful. If I would get this stuff I should not drink or touch anything cold. We also got a lot of information about the social security system around this, what my rights are, what I need to do and apply for etc. After that another blood test and a guided tour around the facilities.

There was a note hanging on the doors that a TV crew from Finnish channel 4 is doing a documentary or something during these months so if I manage to stick my head out at the right time I may even get on TV! :)

After the hospital we headed down town to leave some papers at the Social Insurance Institution of Finland (abbreviated KELA in Finnish). I will get a new social security card with which I would be entitled to get these drugs free of charge.

In the evening we actually went to see a football game with my father in law. The local football team, Tampere United played first round qualification to Champions League against a team from Montenegro, FK Buducnost Podgorica. Tampere won 2-1.

House of Mr. Clutterbuck

Last week has passed along pretty fast. I've felt surprisingly good and even slept well. I suspect our two kids have contributed greatly to that as there isn't a silent moment really until they are finally in bed at around half past eight in the evening. We've had a good time and done a lot of stuff together. Our oldest kid is very fond of cycling and we're almost daily around in the woods where we live. Sometimes we take a playground tour and visit one playground after another. At other times we cycle down to the beach which is only a kilometre away and go swimming.

Among the usual places to visit in Tampere, like the amusement park, we've also been to see some places in the district I didn't even know about. We visited my wife's cousin close to Vammala and continued from there to down town Vammala to visit a children's play house called ”Herra Hakkaraisen Talo". I looked up on the Internet and found the English translation to be House of Mr. Clutterbuck. The creator of Mr. Clutterbuck (Herra Hakkarainen) is Mauri Kunnas who is considered the most successful author of children's books in Finland ever. I learnt he was born in Vammala and that's why they've put up this play house there. It was pretty impressive and had rooms with themes from some of his books. Both kids loved it. By the way, some of his books have even been translated into Norwegian.

We also visited the Vehoniemi car museum in Kangasala. The size is suitable for families with children, and there's a café and a tower with a pretty nice view. As many other cafés in town also this café had their own home-made Finnish-style donuts. These were supposed to be made according to a very old recipe. I have to admit that the donuts at the Pyynikki tower are still my favourites.

Tomorrow morning I will have my first appointment with the oncologist at the hospital. Thumbs up!

Meeting with oncologist at Finnish Cancer Society

Yesterday we had a meeting with an oncologist at the Finnish Cancer Society in town. We just wanted to talk face-to-face with a specialist as we had so many questions and there are still some days to wait until my first consultation at the hospital next Tuesday. The oncologist had in the past been working at the Tampere University Hospital and knew the oncologist I'm going to see next Tuesday.

We had all the papers with us and she looked through those. She said chemotherapy is the right treatment in my situation and that she would imagine I would be given a fairly new drug called Avastin (used in Finland for about two years) in combination with some other drugs. My wife had in fact read a bit about Avastin and it has shown good results on patients with my type of cancer. We discussed about the possibility of surgery and that the signal from last week's gastroenterologist was that surgery is not recommended. She was of the same opinion as in my case as the cancer has progressed so far both to the liver and to lymph nodes. Surgery could be an option in future if chemotherapy would give good results and the tumours would shrink.

The issue with surgery is an interesting topic that my wife has looked into as well. It seems liver transplants in general are much more frequent in other Nordic countries than in Finland. We are not sure if the same concerns also using surgery or liver transplants with liver metastases. We understood that the oncologist said surgery is becoming more used in Finland also, but that it seems the overall result in using surgery with metastases in liver are not better compared to chemotherapy.

We told here we had been mailing with this professor at the Helsinki University Hospital and she knew about him. We showed her the mail conversation we had had with him and she said we had been very active. We also asked how Finnish oncologists might feel about patients wanting second opinions. She said that was a very good question and that it may in fact upset some doctors. I asked if a doctor is offended, would they offer worse service as a ”penalty”. She answered that of course that will never be the case. She asked us if it would be OK for us if she contact the hospital oncologist and brief her about our discussion and we said that of course we don't mind. We feel better if the doctors cooperate in finding the best possible treatment right from the beginning.

By the way, she also mentioned she had never heard about a patient getting so fast into treatment as I now had. That was also good to hear, and I guess shows I'm given a high priority at the hospital.

Learning about cancer

We decided to tell quite openly about my situation to relatives, friends and neighbours right from the very beginning. We got a lot of calls and messages back with encouraging words and support. Many started searching the internet or used their personal network to find information about cancer treatment. My family in Norway hooked me up with two persons that had gone through treatment of cancer that has spread from elsewhere to the liver. I've now learnt that this is in medical terms called metastatic cancer. I called them both and had both long and helpful discussions. All this support has definitely helped bringing my thoughts away from the doctor's message on Friday and onto a hope that it is possible to extend my time left to something more than months.

On Monday morning my wife called the hospital to ask what would happen next. We got to talk to a secretary who said I'd been scheduled to meet a doctor (oncologist) Tuesday 15th July. We felt disappointed to have to wait for another week. We did not manage to get in touch with anyone else at the hospital during the rest of the day. We called in my parents-in-law as baby-sitters and on Tuesday morning we drove to the hospital to try and get answers to a lot of questions and possibly an earlier appointment. We spent about two hours there and got to talk to the nurse that had done the arrangements. She was very helpful and understanding, but getting an earlier appointment would be impossible as every hour was booked. In fact, she was happy she had been able to book me in so fast as it was another patient's cancellation. She went to ask the oncologist if she would be able to meet us for a few minutes or if she could give us a call. That didn't work out, but the nurse gave us a hint that we could contact an oncologists in the Finnish Cancer Society if we had a lot of general questions around cancer treatments. She also told us that the treatment would be chemotherapy and that it would start within the next weeks. We felt in fact quite good after the visit to the hospital as we got answers to many of our questions.

In the beginning of the week we were very busy studying the internet to learn about cancer, the combination of treatments that are possible, how they work, and on which grounds different treatments are proposed. As much as this is a journey into uncertainty this is also a research journey. I have to admit that my wife has been fantastic. She's spent hours and hours studying and is already very knowledgeable.

We got tipped off by a friend of mine to contact a professor at the Helsinki University Hospital who is an expert in cancer treatment. As we have a whole week to wait for my appointment, my wife started a mail conversation with him. He said they're cooperating closely with the Tampere University Hospital and that I would get the best treatment that is possible. He read through my diagnosis and lab tests and said chemotherapy is the right treatment for me.

I also called the Norwegian Cancer Society and Radiumhospitalet in Oslo to ask for information. To get treatment free of charge in Norway I would need a permanent address in Norway. We have decided there is no reason to go down that road as I would probably get as good, if not better, service here in town. Norwegian Cancer Society offers a lot of forums for patient with different types of cancer. Those could be useful at some point of time.

I feel surprising well actually. No pain. Some trouble falling asleep as thoughts keep spinning around.

When news are really bad

It was on Thursday last week I met up with the doctor at the university hospital in Tampere. He was a gastroenterologist and I was about to meet him for the second time to learn about the results of my CT scan and blood tests. My wife was home taking care of the kids. The doctor was 15 minutes late and when he arrived there was a shortage of rooms for the consultation as his own was used by another doctor. It took another 15 minutes to get a room arranged. He asked how I was doing. I replied pretty well and that I had the night before returned from a business trip to Bonn, Germany. He had some trouble logging into the system on the computer and tried to make a joke about that. He started explaining the results of the blood tests and that there was a very high value on a protein. After this point, I can't remember more the details of the conversation that followed, but the scan and the blood tests had proven that the tumours in the liver were malignant, i.e. I had cancer. The only thing I remember saying was ”huh-huh”. The diagnosis was however not yet complete but the doctor strongly suspected that the origin of the cancer was in the colon. The following morning I would have to come back for a colonoscopy and he also wanted me to take my wife with me.

I remember the situation in the room with the doctor was so surreal. It felt as if there was a third person to whom the message had been given and that I was there as an observer. I got sick-leave until the end of August as he couldn't give it for a longer period of time. I remember we discussed the probability of me ever returning to work. The probability was very low. I left the hospital, went back to work, put on an out-of-office note in Outlook, gave the sick-leave paper to my boss and drove home. I couldn't understand it but I knew my life had just taken a totally different direction.

The following morning I was back at the hospital with my wife. The gastroenterologist asked if we could have a conversation already before the colonoscopy as the examination room was not free yet. My wife was feeling a bit dizzy and had to lie down where patients normally lie and I sat in a chair. He delivered us some tough messages. The blood test results indicated the tumours in my liver were most probably metastases of a colon cancer, and a colon cancer which has sent metastases to liver and lymph nodes is incurable. He was not a cancer doctor but he gave me an estimate that I would have three months left to live if no cancer treatment would be started, and six more months if treatments would be started. I still felt as being the observer in the room and that the situation the doctor described would be the one of someone else.

With this information in mind, I went through the colonoscopy and the doctor found the tumour he was looking for about 20cm inside.

It was Friday morning and the gastroenterologist had made the diagnosis and said I would now be transferred to the cancer treatment department. We could call there on Tuesday the following week to find out what would happen next. More about that in another post.