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.