And so it starts

Thanks so much you guys for all the awesome moral support yesterday!! I am back, my liver is a bit smaller because of the biopsy done and I have discovered yet another big hospital in Norway´s capital city. 

A lot of people asked me whether I was worried or stressed or both for the procedure. And you know what? With everything my Norwegian onco and I talked about just a few weeks ago, it felt like yesterday was a bit of a festive day instead of a stressful day. The day the preparations for the research study have well and truly started. With every procedure that is to follow, I will keep in mind that this is all on the way of getting (even) better. Or at least live longer. Keeping that in mind will make sure I stay as positive as possible during all this. Not that I will consider writing ´having a liver biopsy´ on my list of hobbies now, but it is all for a good cause! 

I got down to Oslo on the, by now, infamous Helsebuss. They dropped me off at Rikshospital where I caught the crowded internal bus line to Radium Hospital. The latter is housed in one of those enormous buildings where you can get lost just by walking in through the main entrance. It took me 4 kind employees and a good 20 minutes to find the laboratory to get my blood tests taken. 

After they had tapped what felt like at least 3 liters of blood, I was checked into the day care unit where they prepped me for the biopsy. A really kind and communicatively gifted doctor led the biopsy procedure and luckily they had the best local anesthesia so during the procedure I felt a minimum amount of discomfort. When we were done, I intended to walk back to the day care unit but they would have none of that. I was installed on the wheelie bed and brought back to the unit for the obligatory 4 hours rest after the procedure. 

As I was the last patient to come back from procedure and with the day care unit closing at 15.30, I got transferred to a regular hospital department for my last 2 hours of obligatory rest. Once there I made 2 new friends, an elderly lady from Ireland who moved to Norway 60 years ago and another elderly lady from just outside Oslo. 3,5 hours into my obligatory rest I was kind of done and felt strong enough to get up and leave. So I did. 

Luckily I had a great friend picking me up for a drive back to Ensby. I was so happy to be back home after a 14 hour day! 

Today my liver feels like it has been in a boxing match but I have enough ´excitement´ to keep me distracted as the car battery was flat as a pancake this morning. Several weeks of temps below -16 Celsius have left their mark and now the battery is officially old. Even though it is only 5 years old. After the cute Norwegian car dude came to revive the battery, I have already been on an obligatory road trip to recharge the battery. 

So the car is taken care of and now I am gonna recharge a bit. 

Oh before I forget: another question I heard a lot is ´when will I hear the results of the liver biopsy?´. Well, that depends on when the IMPRESS research study will actually start. Can be any day or can be after summer. Whenever it is, I for sure will keep you updated! Promise! 

Time to recharge now. 

Shortlisted!

Even though there is no start date for the IMPRESS Norway study yet, they have started a short list with possible candidates for this study and your truly is on the list! I am ON THE LIST people and having seen that in writing has made me even happier than I already was. 

What does short listed actually mean? 

Well, the study as such is in the process of being planned but they just don´t know yet when they will start. Might be this spring, late this spring, autumn or late autumn. Those are broadly the 4 options they are discussing now. When starting such a research study it is of course nice to already have a candidate base at hand instead of having to start looking there and then, hence: the short list! No idea how many other candidates there already are or whether I am the only one. Don´t really care to be honest, as long as I am on the list, I am happy! 

Being on this list also means that my Norwegian onco and me can start the logistics to get the basics in order. For example: I am off to Oslo again on Monday 8 February to get a liver biopsy done. Sounds quite easy and the one I had done in Sweden was easy. Painful (as they messed up with the local anesthetic) but easy, a relatively quick in and out of the hospital. 

Not this time. My biopsy is scheduled for 13.15. I am leaving Lillehammer hospital on the Helsebuss at 08.00 in the morning and I won´t be back to Lillehammer until 22.00 in the evening. Coming back partly by taxi and by train as the Helsebuss doesn´t run that late. 

It is such a long day as, well of course I need to get myself to Radiumhospitalet in Oslo and there I first have to get blood tests, scans and prepared for the biopsy. Then after the actual procedure they want, no let me rephrase that, require me to stay for 4 hours to check whether all has gone well, no unintentional bleeding etc. I told them that I am strong as an ox or a horse, or both, but that didn´t sway their opinion. 4 hours is 4 hours. Well, we´ll see about that. 

The great thing is that things are moving. I have been asking my onco about research studies for months and months and months and now I am actually shortlisted for an international one that shows great promise! I can do 4 hours at the Radiumhospital. Or less. We´ll see, ok?  

Here to IMPRESS.... no not really, just kidding

Yep, it is that time again, once every 3 months. Time for a much asked for update after my latest oncologist visit. 

It was a grey and almost warm Oslo that welcomed me to Ullevål hospital. Seriously, the Helsebus is a great invention. Even though it takes a little over 3 hours, it is a very comfortable ride from Lillehammer hospital to the doorstep of the cancer care center at Ullevål. 

With all the Covid measures, it took a while to actually get into the cancer care center, but luckily I was there in good time. And right on queue, my onco called me in to his meeting room. With a big beaming smile which I took to be a good sign. And yes, I won´t leave you hanging: it was indeed a very good sign! Both the latest CT scans and the MRI´s show that the new chemo we tried for the past 3 months (Eribulin) has done the trick in taming the liver tumours, plus the rest of the tumours have remained stabile. Which is pretty much the best news I could´ve hoped for. 

The onco also told me that he has had mail contact with dear Gabe at the Antoni van Leeuwenhoek in Amsterdam and that he had received great info regarding the IMPRESS cancer research study. So after all these months of badgering my Norwegian onco for research studies I can join, it looks like he (or should I say they..) came through with this internationally recognised IMPRESS research study. The link leads you to info about the Norwegian IMPRESS study or the one that they are currently planning to start some time this year. Internationally they have already done a lot of research into cancer precision medicine. 

Seen as my current chemo and just one more remaining option are the only 2 treatments for my type of cancer left in Norway, it would be so awesome when they could get me into this study. My Norwegian onco is following up with the Norwegian IMPRESS research team as we speak to see whether I am eligible and how the logistics would work. I mean they will need tissue samples, new scans, blood work done etc. 

Can you imagine how excited I was when I left Ullevål yesterday? I mean my current chemo seems to be working (started a new round of 4 months of chemo treatments today) and there is more on the horizon than only the dooming prospect of being done with all possible treatments!

I am telling you, 2021 has already delivered and it can only get even better! 

I sure hope you all are having a great start to this new year too and all of the above: to be continued! 

18 January

Are we going to do something special on 18 January.

I had to think, 18 January, is it a special date? What happened on 18 January? Then it hit me: on 18 January it is exactly 1 year ago that Marco died. 

One year. 

A lot can happen in a year. A regular year already has so much going on and blimey, this pandemic year has been even more eventful. Events in a different kind of category but eventful it has been, if you ask me. 

Don´t worry, I won´t rehash everything we´ve done the past year. I mean, if you´re really curious, by all means check the blog and our Instagram feeds. Mik has his own Insta and a personal social media manager, in case you´re wondering.

But are we going to do something special on 18 January, that was the question. Mik and I talked about it. It´s not like we would like to relive this day, that we would like to remember that day especially as it was not one of our happiest days. To put it mildly. 

There are so many times on so many different days that we remember being with Marco. That we remember how fun it was to go on holiday together. That we laugh out loud about Marco trying to catch our little black cat Bo to put her out for the night. That we reminisce about all the hikes and cross country ski trips we made. I mean, Marco is part of our every day life. We don´t need or want a special day to remember Marco. He is with us. In our hearts and minds. 

So 18 January is going to be a home school Monday, followed by a Hello-Norwegian-Oncologist-in-Oslo Tuesday. We are getting the hang of this, we are a good team: Mik, Ylva and me.