So…What’s Been Going On?

Instead of going in chronological order of my whole history, I’m going to jump to present day happenings. This is what prompted me to create this blog. Many people wanting to know what is happening and many times where I’ve repeated the same information. Don’t get me wrong – I’m happy to answer the questions and I really appreciate the concern. Many of you know that I prefer the face-to-face one-on-one contact, and that I don’t shy away from talking about what’s been going on.

lupine-photo.jpgAbout three years ago or so, David and I decided to take early retirement. This was based on that never-answered question “what if”. What if my health deteriorates? What if one of us is too sick to enjoy retirement? What if things turn out the same as it did for his father (who developed ALS and never made it to his retirement and all the travel plans he had for that period of his life)? So we decided that we’d retire in our late 50s, travel, sail, see the world. And if we needed to, we’d work part time to fill the kitty or get jobs after our travels if we decided that we didn’t want to sail any more. We made a plan. We set a date.

For me, that original notice date was March 31, 2016. The retirement date was set for June 30, 2016. I wanted to give lots of advanced warning. I actually gave my notice about a week earlier than planned because I wanted to time things properly for my manager. We were in the midst of goal setting for the upcoming year and I didn’t think it was fair to set all these goals and then a week later to come back and say that I wasn’t going to be around to do those things.

About a week after giving my notice, the pain hit. Not the pain of quitting. Not the pain of planning for my departure. It was an excruciating pain in my left abdomen, just below my rib cage. So bad that I could barely stand straight. So bad that I could barely sleep. So bad that I could barely focus at work. Bad enough to get me to go to my family doctor. And that HAS to be bad because I don’t like dealing with him. (Stay tuned for more about that.)

Long story short, for the sake of this post and the readers, I ended up going back to my gastroenterologist for a colonoscopy. (Let’s call him Dr. M) Well, a partial one that is, because there was scar tissue in the area where I was feeling pain, and he couldn’t scope any further. I was sent for a CT scan and was told that it showed some inflammation in the rest of the colon. Medication was prescribed. Medication was taken. A follow up was done in March. There were appointments in between those times, but not a lot happened during those visits. (More later on that, too.) Another non-completed colonoscopy and another CT scan later, I was told that I needed to have the section of the colon that was badly affected by scar tissue removed. That turned into a statement that “the whole colon has to come out and it has to come out as quickly as possible”. As you may imagine, that increased my blood pressure, my respiratory rate and my panic. I asked for a second opinion and after much insisting, Dr. M finally agreed to set one up.

I had a third colonoscopy at Mount Sinai Hospital in Toronto on September 1. The good news is that this doctor (Dr. S) was able to complete that colonoscopy. I’m hoping that the dietary changes I made in the last six months factored into that success. (Guess what – there will be more about that in separate posts. So many changes and so much difference in how I feel, I need to dedicate a few posts to what I’ve been doing.) I also know that they use smaller scopes there so that would have also contributed to that doctor being able to complete the test.

And here’s the kicker. In the midst of what feels like a million kickers over the last 16 months. I don’t know the results. I have to wait until the end of November to talk to the doctor to discuss what they found. THREE MONTHS. That’s ridiculous. Absolutely stupid to expect a patient to wait that long to discuss results. When I questioned Dr. S’s receptionist about this, she told me that if there was bad news, they would phone. So not only do I have to wait a stupid length of time to discuss next steps, their policy is that patients receive bad news by phone. OVER THE PHONE. Not in a face-to-face meeting where the person can ask questions, get answers, have support. But in a way where it is more convenient for the doctor to avoid dealing with the warm body and the hot emotions. Coward.

I haven’t received a phone call. I’m looking on that as good news, but it still leaves me hanging, not being able to ask the many questions that I have. Not being able to plan our future. Not being able to know the prognosis. Just hanging on, waiting, wondering, worrying.

And while that happens (or doesn’t as the case may be), we’ve postponed our retirement plans. Twice. No trip down to The Bahamas on our sailboat. No sailing off into the sunset. David has returned to work, although it is at a different company and it is part time.

That’s a quick summary of the last 16 months. The “run into you at the grocery story” version. There will be more details revealed in other posts. Those will be the “let’s get together for a tea and a visit” posts. I hope you’ll join me. The tea’s on me.

 

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