I Wear My Sunglasses at Night

You read it here first folks — I’m feeling a little grumpy.  As most of you know, I am neither a whiner nor a malingerer.  I tend to put a pretty positive spin on most things, and I’m reasonably adept at finding silver linings.  So when I tell a health care provider there’s a problem, it annoys me when I’m not taken seriously.

Granted, some problems are bigger than others.  Ten years ago, I told my then family doctor that my back problems were going from bad to worse.  She didn’t take me or my physiotherapist seriously, and I ended up losing bladder function because I developed cauda equine syndrome.  This time, the problem is nowhere near as serious, but it is painful nonetheless.

In fact the problem is painful enough that I have taken to wearing my sunglasses in the house, even at night.  For the first week of each chemo cycle, my eyes become so inflamed and sore that I can’t read, watch t.v. or function very well at all.  When I awake in the morning or from a nap, they are crusted closed and have to be pried open.  I mentioned this problem to Dr. L., and asked her if it is possible to develop a chemo-induced conjunctivitis.  She replied, “I’ve never heard of it with these medications,” and suggested that I go to the drugstore to buy some eyedrops.  When I asked if there was any particular kind I should get, she had no suggestions.  I tried the preservative-free type that my opthalmologist had suggested when I was diagnosed with ocular rosacea.  They were no help at all.  I eventually talked to the pharmacist.  She said, “They’re goopy.  You need an antibiotic.”  I have been using over-the-counter polysporin ever since.  It has taken a very long time, but my right eye is fine now, and my left eye is almost better.  Ultimately, I am going to have to ask my (current, wonderful) family doctor to prescribe something.  Fortunately, I’m scheduled to see her in a couple of days for my H1N1 vaccine — thank Goodness!

I am not sure what is happening with Dr. L.  The past couple of times I have seen her, she has been woefully behind schedule, and has seemed so distracted that she can barely remember who I am, much less focus on my care.  On Friday, I went for my CT scan to find out if the chemo is working.  Fortunately, I looked at the requisition form ahead of time.  Dr. L. had requested a CT of my “thorax, abdomen & pelvis”.  I asked the tech if that included my neck, because the cancer started in my neck.  She told me that it did not, but she would call Dr. L, if she was in, to attempt to get the order changed.  According to the tech, Dr. L. agreed to change the order, but stated that “she doesn’t always like to do the neck.”  There have been several other equally fundamental issues, and my confidence in Dr. L. is eroding.

I am not sure what to do about this problem, but Terry has agreed to accompany me to my next appointment.  He will act as my advocate, if necessary.  Wish me luck!  And in the meantime, I’ll be the one in sunglasses.  😉

2 thoughts on “I Wear My Sunglasses at Night

  1. Thank you for providing this blog. It’s a convenient way for you to share your news in your own time frame. Always count on Terry as your advocate! As much as you are a very intelligent and positive woman, you are also a woman who is fighting a difficult battle that tends to suck the “where-with-all” out of your brain and humour. Leaning on your best friend to be your advocate is the answer to perserving your strength and mental well-being when your illness plays it’s nasty tricks on you. I know exactly what it feels like to deal with an oncologist that “drops the ball”. When your knowledge and research surpasses the basic care given to you it becomes very discouraging and disheartening. I know “first-hand” how it feels to sit in your car and cry – feeling like you’ve handed your existence over to a person who isn’t doing their best to perserve it – you (and everyone else in your shoes) deserves the best care possible, yet I’m not at all convinced that it is to be found it Thunder Bay. I share in your frustration and celebrate your content and happy moments while you take this journey. I think of you all the time and will continue to keep in touch.
    Bear Hugs and Kisses XOXO

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