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 😉

image

9 thoughts on “I have stage 4 primary peritoneal cancer

  1. Allyson and Tumi

    Oh Ragnheiður and Bryndís – what awful news – it must be very difficult for you all to deal with this, but you will deal with it, because you are a strong and loving family. Our thoughts are with you. Did you know that Tumi is being treated for bladder cancer but it is in the early stages so we hope that it will all work out. Lots of love from us, Allyson

    Reply
  2. Hrund

    Saga þín snart mig djúpt, enda ekki nema von þar sem systir mín lést nýverið af lungnakrabba. Hún hafði sama baráttuviljann og þú og barðist líka við fjárhagsáhyggjurnar líkt og þú. Ég sendi þér góða strauma og hlýjar hugsanir.

    Reply
  3. Jill

    Im in California. My daughter has this cancer and it spread to her liver during chemo. Any info you can share would be appreciated. She has 11 treatments with Taxol and Carbo. Its not working. They are changing drugs. I hope you are fighting a good fight.

    Reply
    1. Ragnheidur Post author

      Hi Jill. I am sorry to hear that the chemotherapy isn’t working for your daughter. I only just started chemo so I don’t know if it is working yet, although I guess the fact that I am losing my hair may indicate that the drugs are working. I am as well receiving treatment with Taxol and Carbo. My doctor says that usually this type of cancer responds well to treatment. Be careful with advice that random people give you about what to eat and not during chemo. If the diet is all of a sudden too clean, it might flush the chemo drugs out and leave them useless. I allow myself to eat what I want right now and I am leaving the clean eating until I am done with chemo although I am already preparing for it.

      Reply

Leave a Reply

Your email address will not be published. Required fields are marked *