Happy New Year!

We celebrated Christmas with Marjo's family and one of my sisters and her husband who visited for some days. We had a traditional Finnish Christmas dinner including a huge ham on Christmas Eve. We usually have a Norwegian dinner during Christmas as well and this year my sister and brother-in-law cooked Norwegian-style ribs ("ribbe") for us on Christmas Day. It was all very nice but I was a little unfortunate and suffered from lack of appetite. It has been a problem for a while and seems to go on. I'm down to 75 kg now and need to focus more on eating.

The Santa Claus (Joulupukki in Finnish) visited on Christmas Eve as well. The kids asked many questions ("Is one of your reindeers called Rudolf?"), sang to him, and got a lot of presents, mostly Lego which they both love. I got a lot of presents myself from friends and family (thank you!). The most special one was a blanket knitted by some friends. The colors were red, white, and blue which suite Norwegians very well! I should be able to cope with chills and cold temperatures very well now.

I've recovered from the side effects of the first virus treatment quite well but I'm not in as good shape as I would wish for. Some days are pretty good and I'm able to go for short walks in the woods. Other days I feel just uncomfortable, tired, not able to sleep well at nights, need rest frequently during the days, and like I said no appetite. I've got a fixed doctor at the local hospital in the palliative ward now and she follows me up often and very well. On her recommendation I'm taking pain-killers regularly so I am at least in no pain. My back has been ok recently anyway but I have had some stomach pains. The next virus treatment is next week in the private hospital in Helsinki. The follow up on if the treatment is working is supposed to be after the third treatment, I am not sure if they even take the cancer marker test before that. Before that we won't know if the treatment is working on me. Let's hope the second treatment will be a bit easier than the first one.

Wishing you all a Happy New Year!

Collection for family

Hey, this is not Jan Arne nor the wife writing, but a friend.

A lot of friends are looking for ways to support the family and, since not everyone is able to help in concrete things, many have expressed a desire to offer monetary help. This could also help ensure that Jan Arne get the virus treatments he's started at Docrates, the private hospital specialising in cancer treatments.

A group of us got together to put things in place to make a channel for doing that. We now have permits and an account in place to have a joint friends' collection.

The proceeds of this collection will be given to the family to use for treatments and other expenses at their discretion.

If you want to contribute, send a mail to:
ja_team(at)yahoo.com

and we can send you more details.

In the meantime, one day to Winter Solstice!
Celebrate!

A day at the hospital

I called the hospital in the morning and after some time got a call back and they had managed to fit Jan Arne to see a doc in the afternoon.

Blood tests were all ok, and the doc did not consider the ascites bad even though there was some fluid in the stomach, or whatever the whole cavity area would be called in English. So no need to drain the fluid, she said most of the uncomfort is caused by the constipation (caused by the nausea pills). The plan is for Jan Arne now to take some medicine to ease the constipation, and quit the nausea medication. The stomach wasn't actually that bad during the day today as it was yesterday evening, but good to check everything of course, like that there's no blockage in the bowel. All the personnel in the palliative ward is really nice, we even got offered some juice and Xmas cake. And to top this one of the doctors there is an old dear friend of mine from school I haven't met in years!

They also took some x-rays to check if there's anything worrying anywhere but luckily there was no fluid in the lungs and also none of the metastases in the bones and vertebrae had caused anything "destructive", meaning risk of the bone or vertebrae breaking because of the metastases "eating up" the bone. The doc translated us the results of the Docrates PET-CT and actually the vertebrae mets are quite high up (one somewhere close to the neck, the other in chest area), not in the lower back as we thought. If they start causing pain or risk breaking the bone they will radiate the mets. I'd still feel a lot better if there weren't any mets in the bones and especially in vertebrae :(

Jan Arne also got some new sleeping pills so hopefully he'll be able to sleep better tonight.

Not this as well

There were some better-er days there, Jan Arne even went for a walk the other day. He's also been playing a lot with the kids (no visitors here please as it is impossible to walk because of all the Lego all over the place) and has had some energy to watch TV and other such every day things.

But on the negative side he's had some fever and chills, still no appetite to speak of but at least no nausea as he upped the dose of nausea pills. The most annoying and uncomfortable and worrying thing is that his stomach has been slowly getting bloated. It is probably (and this diagnosis from me, and I am not a doc) the typical symptom of cancer I guess, google "ascites" if you wish. He was supposed to have a doctor's appointment at our local hospital on Monday but this evening the stomach started to be so bloated I think he will have to go there first thing in the morning. I hope they can identify the cause and do something about it. He is feeling quite uncomfortable and it is also difficult for him to sleep.

Again hoping for better days.

Saturday

I wish I could say it is going better, and it is, but I wish it was going... better-er. Today Jan Arne was up most of the day, watching sports on TV (how else) but did not go out because a) lack of energy b) it's pretty cold outside. So the day was a bit better, no fever and chills either, but he still has not appetite, and in the evening he started feeling quite sick again.

I went downtown with the kids today as the younger one had a Christmas party for his music playschool. On the way there he was quite adamant he was NOT going to wear the nice shirt and he was NOT going to go on stage, but when we got there he actually did and didn't even pick his nose too much while singing Xmas songs in front of some 200 people. After the show we went for hamburgers and fries (something we don't eat too often) and stopped by in a pharmacy to get some energy & protein drinks for Jan Arne. They had some that was even described as being meant for cancer patients. Nothing with hamburger and fries flavour though.

I am so worried Jan Arne is not getting enough of energy and proteins. He has not been eating much for the past couple of weeks so of course he is feeling quite weak because of that as well. Good luck the back pain has not been too bad the last couple of days. He said he did have an ok appetite the night before the virus treatment when he was staying over night at a friend's place, hey Juha can you tell me what you cooked for him? :)

On Monday he has to leave the house to get a blood test and to maybe try to discuss with a doctor at the hospital about palliative care and what to do with the metastasis in the hip bone.

Again, hoping for a better (and even better-er) tomorrow...

Day after

The day after the treatment Jan Arne has been mainly feeling like crap.

I went to the hospital in the morning and he had been awake most of the night, some fever, some nausea, just uncomfortable (well, hospital bed too of course). He considered for a while that there's no way he can travel all the way back to Tampere, and maybe he should stay at the patient hotel which is situated in the same building. But he started to feel a bit better after taking a shower so we left for Tampere by train.

Before we left the nurse brought in the blood test results from the morning and she was satisfied with them, changes compared to Tuesday morning as was to be expected: platelets down, crp (infection marker) up etc. He will have to go to a blood test in Tampere on Monday to check how the values are, Docrates then wants the values to be sent to them by fax.

The taxi drive to the train station in Helsinki was quite an ordeal as there was some heavy snow fall on Tuesday evening and the city was in a bit of a chaos still and roads were really bumpy. Not nice to a guy who is nauseous and generally feeling uncomfortable. :(

The rest of the day he has been sleeping or trying to sleep, no fever really but no appetite either. Let's hope tomorrow will be a better day.

First virus treatment

Jan Arne received his first virus treatment today. I took a train from Tampere and am just visiting him at Docrates (or actually this part of the hospital is a ward of a private hospital called Eira). Jan Arne has a private room with a 40 inch Sony Bravia so he'd be happy except no Canal+ = no ManU football match for him today.

First thing in the morning they had taken blood tests and the values keep on amazingly good levels. Then they injected some radioactive stuff in him to take a PET scan, after which they injected the genetically engineered adenoviruses into five spots of the lymph node and liver metastases. He is currently a biohazard and radioactive so I sit on the other end of the room (just kidding). They had seen in the PET scan a bone met in his hip which they had missed in the scans in Tampere, we will have to ask them if it should be radiated.

At night he may start feeling the effect of millions of viruses in his body and may run a high fever so I will escape to my cousin's residence and leave him to more capable hands (nurses). He should be ok enough to get home tomorrow morning when we'll take a train back to Tampere.

So things are looking ok at the moment, please spare some thumbs and prayers and positive thoughts that this treatment will have some effect! Thanks for all the support until now, we have so many friends it seems...