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The result of my pet scan & my emotional melt down


I’ve been meaning to write a blog about the result from the pet scan, but there has been so much going on this past week that I have been too emotionally overwhelmed to find the moment to sit down and write the blog. The good news is that, there was nothing worst that came out of the pet scan from what we already knew. I still only have metastatic in the liver and nowhere else in the body, thank god for that. The doctor says once my fertility process is over, I will start chemotherapy and first I will have 3 rounds of chemo with 3 weeks apart and then after that the doctors will decide if I have an operation at that point to remove the metastatic in my liver or continue with chemo. 

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At the hospital cancer ward waiting room, waiting for the result from the pet scan

Emotionally I have been in a downward spiral since the annual festival dinner of my search and rescue team the past weekend. My search and rescue team hold a lottery raffle every year at the event and this year, they decided to give all the proceeds toward my cancer battle. Which I thought was so generous of them and I wanted show my appreciation by making my attendance. But maybe battling cancer and being around drunk people don’t mix too well. I was feeling very positive and in the fighting spirit that I have been for the weeks leading up to it and most people complimented me on my strength and resilience. However, sometimes when people get drunk they loose any sense of what is appropriate and there was one such drunk individual, that all though meaning well, said all the wrong things, enough to ruin the evening for me and not just the evening, but the rest of my weekend. There are certain things that you simply don’t say to people with cancer and you can actually find such lists on the internet if you are not sure what that is. The things he said to me, that upset me were that all the people he knew that thad suffered cancer had all died from it, if not straight away, then in 10 – 15 year, once it had return and that he would cry at my funeral. Ravi was furious when he heard what he said and told me that I should have told him back that sooner I would cry at his funeral. This is the reason why I really need Ravi here with me. He is always  ready to fight my corner if I am not able to do it myself and he always knows what to say to make me feel better and to make me smile.

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With my friends at the annual festival dinner of my search & rescue team

The same weekend my family had a another shock that I can not disclose here as it still a sensitive subject and not mine to tell. Following that I started my fertility treatment, which make me hyper emotional and not equipped to handle any stressful situation, like the one with Ravis visa process, which seems to take forever. By the end of this week I was on the verge of having emotional break down when my mother took me out of the city to a cabin in the country side. It was crucial for me at that point to change my environment and get a break from reality. I am feeling much better now and I intend to stay here a little longer.Perhaps I will feel more motivated to write while I am here.

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Enjoying cosy time at the cabin with the people I love

My pet scan trip to Denmark

Last week I had to go to Denmark for a pet scan. Iceland does now have a pet scanner, recently given to us by Kári Stefánsson of Decode. However we have yet to build a house for it and the ironic thing is, that I can literally look at where the building is going to stand out my bedroom window. It will be about 100 m from my house. But it wasn’t all bad having to go to Denmark. I actually enjoyed it, because I decided that I would.

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Map of Copenhagen

Traveling to Denmark just for a pet scan sounded like such a waste of a journey. Denmark is a wonderful country and much worth the visit. So I decided to stay few more days. The pet scan was scheduled for Thursday, so we flew out on Wednesday. Me and my mother that is. My cousin Kristin came with a train from Södertälje, Sweden, that same day and we met at the hotel which the hospital had recommended to us, as it’s just around the corner from Rigshospitalet in Copenhagen.

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The following day I had the pet scan. I have to say, I was impressed with the Rigshospitalet and the Danish public healthcare. I couldn’t help noticing that there were no card machines at the reception when I came. I also like the little touches the hospital staff had done to the pet scanner. They had stuck butterfly stickers inside the scanner, so that the person lying inside it had something pleasant to look at for the 25 minutes the scan took. After the scan I felt really dizzy and weak. It was 16:00 in the day and I had not eaten anything, plus they pump your veins with some chemicals. Thankfully they do stock up on sandwiches and juice in the waiting room, so I could gorge on that while waiting for my mother and my cousin to come back for me. Then we headed downtown and the first thing that I wanted at that point was a McDonalds. Yeah judge me all you want, but I just needed some quick fix energy because I was still feeling so very dizzy and weak and that is what I was craving at the time.  After that we went to a bar and ordered a large beer and they brought us a HUGE beer. It took us 2 hours to drink that thing, but after that I was feeling back to normal. Well they do tell you to hydrate after the scan, I’m sure they don’t mean with beer, but it sure hell worked.

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The next day, Friday, we went shopping because I needed some comfy cloths for chemo…and some cosmetics, girl can never have too much cosmetics ;). Because my energy levels aren’t great, we had to make a lot of stops. By the end of the day I was really dragging my feet and I was pale as a ghost, but I wanted to be sure I had covered everything so I didn’t give up until we were completely done. My mother had to drag me to the hotel in the evening, because I had used up every bit of my energy. It’s kinda of a downer when your 60 year old mother is more energetic than you after a whole day of shopping, but that’s just cancer for you. She had to fight my corner in some of the last shops, because the shop assistants would just walked right trough me, that’s how pale I was. But it was all well worth it.

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On Saturday, the daughter of my grandfathers sister, Friðrika, came and picked us up from the hotel and took us to her home town of Solrød Strand. It was my first time out of Copenhagen and I have to say it was refreshing to experience something different from the city. Solrød Strand is an exceptionally adorable little towns by beautiful white beach. If I didn’t already have such a vivid dream of me and Ravi living in a beautiful villa by the banks of the Ganges, then I wouldn’t mind living by the beach at Solrød Strand. There we also saw the oldest house in Denmark…or at least that is what Friðrika says.

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On Sunday we visited my parents old friends at Roskilde, which is another stunning town in Denmark with a remarkable cathedral, where all the former kings of Denmark are buried. It’s probably also worth mentioning the famous music festival which takes place there every summer…I have yet to go. Never say never they say and I have always thought that was a good advice to follow. We flew home the following Monday. Next time I will visit Denmark, Ravi will be with me. For sure!

Appreciation for all I have received

The past week has been crazy. After I published my last blog post and posted it on my Facebook, my aunt shared it on and before I knew it a journalist had contacted me wanting to do an interview with me. At first I was reluctant to do an interview and I took a day to carefully consider. After a while I though, hell if some should do it, than that someone should be me as I believe I have the strength stand with it. I wanted to do it for us all, all of us that are not only battling cancer but also the financial burden that comes with being diagnosed with a serious illness. Not only is it costly, but because of our illness, we are not able to work and earn regular salary. It is really unfair considering that a large prosentige of our monthly salary goes into paying tax. One should have thought that if getting sick, we would be compensated. But that doesn’t seem to be the case. Because of this, the journalist suggested that we would start a donation for me with the article, to help me with the financial burden. I was  not expecting much. I was certainly not expecting the impact the article was going to have. Many posted it on Facebook and the comments that followed, showed the anger in the society toward the state of our healthcare system. There was an outcry for its restoration. There was even a mention of my interview at the parliament. But that wasn’t all I was surprised by, nor all the financial support a received, which by the way went above my expectation. But also all the amazing energy I received from all the people thinking about me, praying for me, sending me a healing light. I never thought I would actually feel it, but somehow it did. I could feel it prickling my skin and entering me, filling my heart with love and my soul with peace. I have been feeling so incredibly thankful and touched by all the help I have received, some even coming from complete strangers. I am full of appreciation for all the donations I have received and for all the love and all the light. Thank you all so very, very much.

If you speak Icelandic, you can read the interview here.

I have stage 4 primary peritoneal cancer

Four weeks ago the surgeon called me for a meeting to tell me the result of the tests following my operation between Christmas and New Years Eve. It was my 3rd day at a new job and I was feeling positive and excited about my future. This year was supposed to be a new start. I was going to settle down in Reykjavík with my fiancé Ravi, have a steady job and save up for an apartment and for maternity leave, because me and Ravi were planing to start a family within the next two years. The plan was also to get married this summer. I was not expecting the news I got. “You have malignant cancer”. “Say what?!”. I had been told during my illness, last year and during the time I spent in hospital in September and October that I did not have cancer, so this was the last thing I expected to hear. In fact I was so sure that I was OK that I did not even bring anyone with me. I sat there on my own receiving these dreadful news. Of course the doctor who delivered the news should have known to warn me to take someone with me as she knew the severity of the news she was about to deliver. But no, I was there alone and I was neither offered consolation or guidance. I was told that I most likely had a very rare type of sarcoma cancer, one that had never before been diagnosed in Iceland and that my specimen had been sent to Boston, USA, for further diagnoses. All I could do was to wait.

For three weeks I waited for a result from this diagnoses. I was going mentally crazy, it was like torture. It was so difficult to get up in the morning and put on a brave face and face the day. Because I hadn’t been offered any guidance I seeked guidance myself from Kraftur, an organization giving support and guidance to young people battling cancer. This organization is doing an amazing job and they helped me during my difficult wait. They provided me with guidance, consolation, information and more. On Thursday, February 4th I was having lunch with my work colleagues when I had a phone call from my surgeon telling me that the specialist in Boston, who she said were the best in the world, weren’t sure any more if I had that rare type of sarcoma, they weren’t really sure what type of cancer I had and if it originated there in the abdomen as previously thought. I felt like I had been thrown into a black pit. What did that mean? Did I have some type of cancer that they did not know? Did I have a tumour somewhere else in my body they didn’t know about? They knew about the tumour they removed from my abdomen wall and the the one in my liver, but did I have tumours somewhere else? I was left with more questions than answers and feeling completely mentally and emotionally overwhelmed. For a week I could not face real life or speak to anyone outside my family.

Then last Thursday the cancer specialist, Helgi Sigurðsson, that I have been waiting to hear from finally contacted me and invited me for an interview. He apologized for the wait and what I had been put through and for the mistake that was made in the beginning with the wrong diagnoses. He told me that I had stage 4 peritoneal cancer, also a rear cancer, though not as rear as the one they initially thought I had. It was hard to hear that my cancer had already progressed to stage 4, but at the same time I was relieved to know the truth and finally have a plan. The first thing on the plan is that I have to go to Denmark for a pet scan, because we don’t have one in Iceland and then they are doing everything they can to bring Ravi here as soon as possible. Ravi is in India as he had to go back home because he can only get a temporary work visa as a specialist guide. The visa process usually takes 3 months, which would only bring him here at first in mid April, but due to changed circumstances it has become a pressing matter to get him here as soon as possible. Before I can start chemotherapy, I need to fertilize eggs with his sperm and freeze for later use, as the chemotherapy might affect my fertility. I will be damned if I don’t at least get the opportunity to have children that will in some way resemble in appearance the man I love. I have been dreaming about it for too long. Once that is done, the chemotherapy can start, which will be at least a 6 month process, where I will also most likely be operated on at some point too.

All I can say now is let the battle commence! I will fight this and I will survive this. Tough times don’t last, tough people do…and I will last until I’m at least 100 😉

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