He is in peace now

Jan Arne died last night on the 22nd of April right after midnight. In the afternoon I had gone home from the hospital to get the kids to see him at around six and they said their goodbyes. By the time I got back to the hospital Jan Arne was already more or less unconscious and breathing heavily. He was in some pain but the nurses gave him pain killers and he calmed down. After midnight his breathing got slower and slower and he slipped away peacefully. My parents also got to say good bye to him. Later in the evening I had a dear friend, who had also been Jan Arne's doctor in the palliative ward, with me in the hospital as a very valuable support.

I want to thank you all for all the amazing support Jan Arne and his family have received during these tough three years which despite everything are also mostly full of happy memories. Other than that, I am just speechless about the injustice and cruelty of this all. Hugs to all of you all over the world.

Hospital

Last night Jan Arne quite suddenly got some pain in his left thigh. When it didn't go away but got worse I called an ambulance and he was taken to the hospital ER Acuta. We were worried it might be a blood clot. He had to wait until the morning for an ultrasound which did not show any blood clots. Jan Arne sent me a text message that he felt very dizzy and moving his legs was very painful.

I left to the hospital after I had taken the kids to the daycare. By the time I got here they were going to release him and we were going to go to the palliative ward for his scheduled doc appointment but he said he felt really dizzy and I asked them to take his blood pressure which was really low. They immediately started IV fluids on him in case he'd be dehydrated as the fluid is gathering to his legs and stomach, but the fluid does not seem to help too much. Now we are waiting for transfer to cancer ward. The other option would be the hospice but the doc figured that over easter time he would get better care (pain management etc) in the hospital.

The situation does not look too good at the moment. The doctor said that in his condition this kind of a sudden crash was to be expected. I just hope they will manage to manage the pain, the fluid gathering to his legs is giving him quite a bit of pain at the moment.

News and sad news

Since the previous blog update (thanks wife!) lots have happened with me personally and to our family. Last week I started hearing some funny noise from my lungs. I called the hospital the following morning and the doctor ordered me to the hospital for blood tests, x-ray of the lungs and a check-up. The results were, briefly put, that I had got quite a bit of water in my lungs and cancer has spread further so much that it can now be seen in lung x-ray. At least the blood values are still good, and the doctor said the water problem can be managed with medication. The spreading of the cancer in my lungs was no news really, but compared to the pictures taken in January it seems at least to me to be spreading quite fast. I feel like maybe I don't have that much time left now. The doctor also gave me a referral to hospice, and a nurse from there will come visit us tomorrow to explain to us what kind of help they provide.

The liquid-removal pills I've started taking seem to drive down my blood pressure and make me very dizzy. This week I've felt totally out of it and have not had any energy at all. The persistent sleeping problem has probably an impact as well, as well as the entire cancer situation. I got a new "relaxation" drug from the doctor to try out for the insomnia but so far I can't say it has helped very much. And then I still have swollen legs. The doctor now thinks this is related to the overall cancer situation and has got something to do with proteins. I can manage by sticking my legs high up every now and then although it does not take the swelling down completely.

I had a follow-up of the lungs this Monday and the x-ray pictures showed that the situation is better. In other words the medication works. I guess I just have to manage with the dizziness and hope it eases off by itself.

As if my situation is not enough, our family got struck by more sad news. Marjo's sister and only sibling passed away unexpectedly of a sudden illness last week. She was only a bit over a year older than Marjo and generally in good health. It's hard to understand what God is up to now! I'm not very good at finding words in situations like this but may at least God bless her memory.

As Time Goes By

Wifey's turn to update the blog, Jan Arne has been a bit under the weather the past few days so he asked me to fill in for him.

Jan Arne's final radiation treatment was on Friday. The treatment itself has been easy, except for the odd appointment times, mostly at 8 in the evening or 8 in the morning. My dad has been driving him, a couple of times Jan Arne has been well enough to drive himself. The swelling on the legs has been coming and going, mostly gone for today, but it seems to be traveling, and there may be some fluid building up in his stomach as well. Other than that there has been some other uncomfortable side effects, a bit upset stomach, some fever, and quite bad fatigue so he has been sleeping a lot. At this point though it is a bit difficult to know which symptoms are caused by the cancer and which by the treatment. Mostly the radiation is given to ease the back pains but also the swelling hopefully. The doctor said the radiation might initially increase the swelling in the lymph nodes and thus make the swelling in the legs a bit worse but then it might get better. Let's hope this is the case.

The weather here in Tampere area was getting nice and springy last week, snow was getting ugly brown, and the roads have been really slippery. Yesterday morning we woke up to a nice surprise, 10 centimetres of new snow! Bummer, delayed spring, but on the other hand, today has been gorgeous, bright blue skies and all that blinding white snow. Last weekend I thought it's our last chance for a family ski trip but now we managed to fit in another one. Last weekend we were luckier though, Jan Arne was able to join us, on foot, but anyway! Today it was just me and the kids, Jan Arne stayed at home to rest his legs. Since Jan Arne has been mostly stuck on the couch, in the evenings we have been enjoying the As Time Goes By DVDs we ordered. We are quite hooked on the series, great entertainment!

Tomorrow Jan Arne may make a trip to the hospital to have the doc check up on the swelling.

Radiation

I started the radiation treatment on Monday. The treatment itself takes about 20 minutes and is painless. I've got to do 10 treatments in two weeks, which means I'm in for radiation every weekday this week and next week. They're running treatments up until nine in the evening and it seems they've given me quite a few late appointments.

I also saw the doctor on Tuesday and had a blood test done. The CRP (infection level) was 60, which I thought was high, but the doctor said it's caused by the overall situation of the cancer and nothing to worry about, except it of course shows the cancer is quite advanced now. The other values were more or less fine. In addition to radiation I'll be getting a new drug called Zometa as an IV every 3-4 weeks. It is used to treat tumours in the skeleton as well as reduce possible pain. Together with Zometa I've got to eat Calsium and D-vitamin pills. Zometa can have some side effects, mostly headache and other flu-like symptoms, luckily usually short-term.

We discussed the insomnia problem again and as a result we agreed I'd try and take both melatonin together with a sleeping pill. I started this the very same evening and guess what? I slept seven hours straight! The same happenend last night. Today I've been totally out of it though and I've slept several hours on the living room couch. It could be that some side-effects of Zometa have kicked in (tiredness is one) at the same time.

During this winter one of the Finnish TV channels (FST) has been showing both seasons of "Livet på Hvaler", a Norwegian TV-series from 2008 and 2009. In Norway the title was "Hvaler". Both Marjo and I have really enjoyed the TV series. Great entertainment! We have also been watching a lot of British TV-series, we saw all episodes of Vicar of Dibley and this week we ordered three DVDs of As Time Goes By from Amazon.

Wedding anniversary

We had our 8th wedding anniversary the other day. We celebrated a little the day before and went to the movies to see The King's Speech, which I thought was excellent. From there we stopped by in restaurant Heinätori to have dinner. I had mushroom soup for starter and fried liver as the main course and I guess you can call that a quite traditional Finnish meal. We were home by seven as I was fighting to stay awake (because of the insomnia problem) and as the swelling in my legs was a little uncomfortable. On our actual wedding day we made yet another trip to the movies and a restaurant but this time with the kids. We saw Yogi Bear and had pizza and pasta in a nearby restaurant.

I'm scheduled for my first radiation treatment on Monday (March 7th). I really hope it will prevent the swelling from getting worse as I currently feel a bit handicapped. I've been able to move around and make some short trips downtown but when I get home I've got to lie down and keep my legs high up which is the only way to get the swelling down.

Falling asleep at night is still a big problem and I'm not sure what to do about that. I sleep way too little and it has messed up many of the days this week as I've felt totally dead during the daytime. I have a doctor's appointment on Tuesday (March 8th) and will discuss the possibility of seeing a sleep specialist.

Repair

Yesterday (Thursday) before the MRI scan I went to see one of nurses at the hospital to show her my legs. Not that they are good looking in any way, but I noticed in the morning that my left leg was slightly swollen especially around the ankle. It worried me a little. She said she would talk to one of the doctors and that I should drop by after the MRI scan. I had the scan which was a little different than all the other scans I've had. The machine made such noise that I had to wear a radio head set. I got to choose which radio channel to listen to. I picked "957".

After the scan I got to see a doctor who checked my legs and she said I'd have to go to an ultrasound examination to check if a blood clot could be the reason for the swelling. It was already three in the afternoon so I'd have to come back the following morning (today, Friday) and they'd try and fit me in between scheduled patients. Also, if my leg would start to hurt or I'd get problems with breathing during the evening or night I'd have to go to the emergency room, as then the blood clot would possibly have travelled to my lungs which can be life threatening. I was a little uneasy and started wondering if I'm now entering another phase of this disease.

Bad news seldom come alone, isn't that a saying? When leaving the car park the car window on the driver's side broke down. It wouldn't come up and I was forced to drive home with a totally open window in -15 degrees Celsius. Luckily I had a thick winter jacket, hat and gloves on and with the heater on full blast it worked out. It was a little unfortunate though that the window would break down just on this day. Our oldest kid had swimming school and I was already in a hurry to get home to pick the kids up from day care and take him to the swimming hall. Now I wouldn't dare to leave the car anywhere but rather get to a car mechanics' place to have the window fixed. We did it so that Marjo took both kids swimming (even though she had a cold) while I continued to the Nissan car dealer that Marjo had already called. They promised on the phone that someone would be able to look at it.

Well, at the car dealer the people suspected a broken window motor that had to be replaced. Unfortunately, the car repair was so fully booked it could take them over a week to have it fixed. They wanted me to leave the car there for the whole week. Not a good deal at all! Fortunately, a friend of ours working there (well, he actually sold us the car) set us up with another car mechanics' place that could have it fixed today. I jumped on the latter offer and drove off to a super market to wait for the family to finish the swimming. When we finally got home it was six in the evening and -18 degrees.

This morning I tried to cover the car window with some see-through plastic which kind-of worked. We dropped the kids off at day care and were at the hospital at nine. Marjo had to join me in case there was a blood clot in my leg because then I would have to stay at the hospital and she would have to drive the car to the mechanics'. They fit me in the ultrasound before 11 and luckily they did not find any blood clots. The doctor also checked yesterday's MRI and concluded that the swelling is caused by the cancer in the pelvic area lymph nodes which makes the flow of fluids more difficult. There were also a couple of spots where cancer was growing in such places (close to spine) where it can cause back pains, so for the first time during my cancer journey I am now scheduled for radiation treatment next week. Let's hope it will help with the back pains and prevent the swelling from getting worse. The backpains have been quite well under control though for the past few days with the pain killers. I am also not looking forward to the side effects, let's hope they will be on the milder side. The doctor said they are typically diarrhea and nausea but not as bad as with chemo.

After the ultrasound we drove to the car mechanics' place and had a long lunch in a near by restaurant while waiting for them to fix the window. Just in case we will not be opening the window for the rest of the winter though.

So it was a day of pretty ok news: no blood clots and car window working. Oh, and my oldest sister from Oslo came for a visit for the weekend!

Sleepless in Tampere

I had the bi-weekly follow up with the doctor on Friday. All blood values are good except AFOS (one of the liver values) was a bit high at 324. The normal range is 35-105. It has come down a lot since the bile duct operation last month though when it was measured at 649 (on January 2nd). The doctor said this is all good.

The back and hip pains are from time to time still bad and the doctor increased the painkiller dosages. She also prescribed me a new drug used for neuropathic pains and anxiety. It should also make me tired and help with my sleeping problems. They finally managed to schedule the MRI picture and I'll get that done on Thursday this week. Then they'll call me up next week to inform me about the results and see if they could use some radiation treatment on some tumours to ease the pains.

The biggest challenge right now is insomnia. I just can't fall asleep at nights or if I do I wake up shortly afterwards! Very frustrating and something I've never even remotely experienced before. We have discussed this with the doctor several times already. She has prescribed various sleeping pills that I've tried out, but they have unfortunately not helped very much. The back and hip pains could be part of the problem since I sometimes have had to take more pain killers during the night. Maybe the cancer has an impact on some hormone level? We've also discussed if the reason could be mental, in other words thoughts and fear of dying but it's not that either, I'm not going through anything like that at the moment. 

This weekend (Friday and Saturday nights) was exceptionally bad. The increased pain killer dose helped take away the back pains but I still couldn't fall asleep or if I did I would wake up after half an hour. I felt like a walking zombie during daytime especially afternoons and evenings. We did manage to meet up with some friends on Saturday though and that went fine. We placed the kids at grand-parents and had lunch at a restaurant downtown.

Last night (Sunday) I finally got some sleep! I slept for 4,5 hours, then half and hour awake, and then I slept for another 1,5 hours. Today (Monday) I've felt great and even brought and fetched the kids from day care. I haven't done that in a long time. Hopefully my sleeping will continue like this.

The birthday celebration season isn't over after all. The oldest kid came down with a stomach flu on his birthday and we had to postpone the party. Luckily the new time was ok for all, including the magician. Marjo also got the same stomach flu while the youngest guy and I managed to avoid it. Poor kid, he was very anxious the birthday party would get cancelled but we assured him it'll will be fine to tell everyone it is postponed by a week. That means the party is tomorrow but now it seems many of his friends have come down with something and have cancelled. There are quite a few flus going around in schools and day cares these days. Let's see how many will show up.

Birthday celebrations

We are in the birthdays celebration season. Our youngest son turned four yesterday and we arranged a real "friends-only" birthday party for him. Well, I have to admit Marjo and not myself was behind the arrangements. It has been fun time because it has meant a lot to him. He got to decide who to invite himself (they were his daycare friends) and he made birthday invitations and plans weeks ahead. The party went quite fine and they seemed to enjoy themselves. One of the guests refused to leave and Marjo had to carry him out to the entrance to his father who was waiting to pick him up.

Next week the older brother celebrates his birthday and will have his friends over and then we will have a family celebration during the weekend with relatives. There is in other words a bit of birthday cakes to be made and eaten. That may be good also for me and my weight. I am eating much better and have had no nausea for a while. I've been around 69 kg now and hopefully I'll see 70 kg on the scale after all the birthday celebrations are done.

I had a doctor's appointment and blood test done last week (February 1st). The blood values were quite good except the CEA value which had increased to 3200! It was previously measured on December 7th just before the virus treatment at the private clinic in Helsinki (Docrates) and it was then 1700. That is naturally no good news. It probably also means the experimental virus treatment has had no or little effect in slowing down the overall cancer situation. I've decided I will not go for any more virus treatments which is also in line with what my doctor at the local hospital recommends.

The back and hip pains are from time to time quite bad and I've had to increase the painkiller dosage. The doctor is not able to pinpoint exactly where the pain comes from other than it's probably a tumour that is pressing on a nerve somewhere. I'm now being scheduled for an MRI picture. That is a picture they have not taken of me earlier so let's see if it can reveal anything new.

My shape is a bit unpredictable but daytime is still the best part of the day. I've managed some short shopping trips and even had lunch with a friend the other day. Evenings and nights are a bit worse. The insomnia problem is annoying and I sleep very badly even though I take sleeping pills and painkillers.

There is no sign of spring coming to Tampere very soon. The temperature measure showed -20 degrees (Celsius) this morning and we still have snowfall every now and then. The days are luckily getting longer though and right now the sun shines through the snow covered woods. It is really beautiful but I wouldn't mind warm sun, snow melting and spring now.

Family visiting

Again, lots of thanks to my loving wife for taking care of me and the blog. Times have been pretty tough lately but I am definitely doing better now. Appetite is improving though my weight is still under 70 kg and I need to focus on eating as often as I can. At the moment the biggest challenges are insomnia (just can fall asleep at night) and constipation that I'm getting from pain killers and anti-nausea medicine I'm taking. There is a medicine for that as well so at the moment there are lots of various drugs I keep taking. I also tend to get fever and chills during afternoons and evenings but it goes away after a few hours. I've felt quite well during the days though so that's something positive.

Today I grabbed the car and went for a hamburger lunch with a friend. I managed to eat half of it and brought the other half with me home to Marjo. Then I dropped by in some stores and did a little bit of shopping before returning home to rest on the couch.

My parents and my youngest sister visited for a few days this week. We kept the kids home from daycare and had a good time at home talking a lot of Norwegian. It was great to see them all again and equally sad when they left. I was luckily in quite a good shape and able to socialize. Well at least a bit I think.

I do admit I feel grumpier nowadays with all these issues going on for so long so you'll have to excuse me if I don't pick up the phone or return your messages. I still very much appreciate all you support and comforting messages and there's been so many of them.