Minnestund i Norge

Det blir en liten minnestund for Jan Arne på Oa ungdomshus søndag 12. juni kl 13.00. De som ønsker å delta kan gi beskjed til en av søstrene (Gro Anita Erve, Linn Therese Erve eller Elisabeth Jeanette Lid) eller foreldrene til Jan Arne.

There is a small memorial service for Jan Arne in Oa ungdomshus (in Norway) on Sunday the 12th of June at 1 p.m. Those who wish to participate can let one of Jan Arne's sisters (Gro Anita Erve, Linn Therese Erve eller Elisabeth Jeanette Lid) or his parents know.

The funeral

Thank you everyone who participated in the O'Connels "Irish wake" on the 8th, the funeral in the church on the 14th, and the memorial service afterwards. I am sorry I could not invite everyone to the memorial service, and I am sorry that some of you I invited didn't understand you had been invited. I guess something was bound to go a bit wrong as there was so many things to arrange, so many decisions to make, and so many people to be in touch with. I also want to apologise to all those who have contacted me if I haven't been in touch with you, there's just been so many things to do and it's been a bit difficult to concentrate. So, sorry, nothing personal.

Music often plays a big role in grieving and it was also important to me in the funeral. I wanted the music not only be beautiful but to have some meaning. I ended up selecting music from Norway, Finland, and Sweden. The Grieg song was suggested to me by the singer who sung in the funeral, and it was very fitting as the lyrics tell about how a spring seems to someone who realises the spring may be the last one they see.

I wanted to share the music from the funeral here in the blog, of course a bit different versions and a different singer, just what I managed to find from Youtube, but I hope you enjoy them.

Oskar Lindberg: Gammal fäbodpsalm från Dalarna (Old Pastoral Hymn from Dalarna)



Grieg: Våren (Spring)



Armas Järnefelt: Berceuse (Lullaby)



Here is the song where the memorial verses were from in the death announcements in newspapers in Norway (first verse) and Finland (last verse).

Thank you

Thank you all our friends all over the world again for all the supportive messages and beautiful flowers the kids and I have received.

There's so many things I have been thinking of adding to the blog, to tell you a bit more about what happened this spring, as Jan Arne's death seemed to happen so fast. But for now our older kid is sleeping next to me on the couch because he had a sore stomach, so it's not the easiest to concentrate, so I just say at least what I need to say, about the funeral.

Jan Arne's funeral will be here in Tampere on the 14th of May at 10 a.m. There will also be an "Irish wake" the previous Sunday in a pub, also here in Tampere, first chatting and reminiscing Jan Arne and then we will hopefully see Manchester United beat Chelsea. This was an idea I discussed with Jan Arne just about a week before he died, that wouldn't it be a good thing to do after he dies, to gather friends and just chat and watch a ManU game.

Many of you have probably received info about these events before already, via email or friends or Facebook, but if you haven't I hope I am now reaching the rest of the people I should, I am very sorry if there's someone out there who is now being forgotten, I simply don't seem to be able to concentrate well enough to remember everything and everybody. He had so many friends...

It's not only lack of concentration, also the kids and daily routines now take more time from me, Jan Arne was so much help at home until the very end. That's actually something I wanted to share with you, he really was in a pretty good condition up until he had to go to the hospital. On Tuesday he still got up 15 minutes before me to prepare breakfast for the kids before I took them to the daycare. On Wednesday he had two friends over for lunch while I went to get new car tyres. When I got back I took the younger kid to a hobby, Jan Arne sent my parents home to rest, I got home, put the kids to bed, and then Jan Arne and I watched some TV (American Idol I think?). His legs were getting worse and worse during the last weeks but he was still able to walk. On Monday we even went to a supermarket to do a little bit of shopping, Jan Arne said he wanted to buy some shampoo but then he said that maybe he can manage with what we had as he felt he was not going to have a long time left. What cheerful conversations we had! I bought him shampoo anyway but he never used it in the end. So as hard as it was to had to let him go, I guess we could not have wished for a better way for him to die, in that he really got to stay at home until almost the very end and in a reasonably good condition. It is still somehow incomprehensible though how fast it all happened in the end. I have been so calm about things that maybe I don't still quite get it. Of course, for the kids as well it has been important to keep the routines, like Easter and First of May celebrations, so I have maybe been too busy to think about... well anything.

Anyway, if you would like to attend either the funeral or the wake and need more information, please send me email to mkuusto at gmail dot com. Just to make sure though, I would like to say here already that in case you come to the funeral, we discussed with Jan Arne that we did not want people to bring any big flower arrangements. If you wish to bring flowers, then just one flower per person. Sorry flower shops, we just would prefer the money to be donated to e.g. cancer research.

Now I'd better try to carry the kid downstairs to his bed...

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!