Rollercoaster ride continues

2014.02.28

Slept on and off from 2 am to 6 am. Hard to get a comfortable position with the neck muscles having been cut through. Who knew you clenched those muscles when sitting up?

Those waken hours between 2 and 6 were used wisely. I chatted with friends and family in the USA who were still awake. Writing instead of talking is a interesting form of communication because you actually have to think before you write. It puts the conversation on a entirely different level. These conversations give me energy and comfort. LOVED.

Eric slept between us last night as he wants to be close to us. His breathing is so melodic. Eric and I got up and made a nice easy breakfast in bed for Peter. He was happy. The other two kids slept on until late morning and missed the fun we had us three, just laughing and talking. It was cozy.

I took the last painkillers and stayed in bed because I could. It felt great just laying there. It was finally time to get up and face the new issue of the bandage and stitches can't get wet. So a shower is first from the neck down and then hair washing in the sink. A pain in the butt because it hurts to lean over the sink while bending my neck.

Peter helped during the hair washing process and my phone rang as I was almost done rinsing but the person had hung up by then. It was a message from the doctor that started today's roller-coaster ride. The results from yesterday's biopsy showed that it is pressing against many major arteries and could lead to the risk of a blood clot forming. (oh shit) So to be on the safe side he had called in a prescription for a blood thinning medicine that is to be injected into my stomach every morning until treatment starts. (oh shit)

My anxiety level rises and we leave for the Pharmacy. We get the medicine and decide to ask the local doctors office if a nurse can inject it for us. Peter is really scared of needles and who likes to put a needle into themselves if they don't have to?

So let me back up a little bit to some important events that happened this week. On Wednesday I received an appointment letter from Taby Centrum Doctors for an appointment next Friday May 7th to have a look at my thyroid. (one day after chemo starts) They had received a referral from the Emergency Room that I visited on February 15th for this lump/clump on my neck. So, I ask myself, what the hell did that emergency room doctor write on the referral and why did it take them 3 weeks to get me a time in the office? I knew I needed the copy of the referral to see how far off the truth she was.

I spoke with a nurse at the doctor's office and said I needed the copy of the referral right now. It took a bit of time but once it was in my hand I said to her that I needed to cancel the appointment next Friday because it is not my thyroid it is cancer of the lymph nodes and the emergency room doctor was clueless. She was speechless.

Now I needed to ask for help with the shot for today and all of sudden there was a nurse available to help me. Luckily my sanity was saved during this when my phone pinged with a text from a 12 year old boy that has been many many times to Creative Brick Zone for camp. He wrote exactly the words I needed to hear at that moment. It made me feel comforted when the stress and worry of a possible blood clot was weighing heavily on my mind. GRATEFUL

The nurse showed us how to do it. Not so painful at all but still not something I wanted to do. Now we were all stressed and needed to do some food shopping. Never the best combination. (note to self: find a way to even out the roller-coaster ride)

Food purchased and mission almost accomplished. The taby doctor would not give out the journal of what the doctor wrote about the visit, I needed to go to Danderyds Hospital to take care of that. I arrived at the Emergency room window and ask politely but firmly for the journal copy of my (useless) visit two weeks ago. They saw how serious I was and said I needed to fill in a form or I should have asked the doctor when I was here. (Yea right, it was the middle of the night, who thinks of those things?) I filled in the form and when I get it I have to report it to the authorities. Most people would have done as she said and waited for the Taby doctors to book an appointment with terrible consequences. I am reporting her to spare other people from meeting this clueless doctor.

I am grateful that I took my healthcare into my own hands and went to some good doctors that Monday two days after the emergency room catastrophe. Because of my own instinct and that I never give up I have saved my ass and now I am going to kick some cancer's ass!

Things are not normal at home if Peter opens a bottle of red wine to drink even though I told him I wasn't having any!!!!!!!!!!! Happy Birthday Peter!!!!!! Our crazy reality for the next 6 months is just starting, welcome onboard the rollercoaster ride of our lives.