An Impatient Patient

Well, this is about the fifteenth time I’ve started this. It may well end up in the bin, like all the others. The main reason I’ve trashed them is that now, for some reason, I always seem to write about the negatives. Maybe that’s because there haven’t been too many positives. It’s been over a month since my last post and it’s been one of the most difficult times since I started on this journey. I’m absolutely sure it’s been a really difficult time for my wife as well – even though she’s become the very definition of stoic. Me, not being able to drive (double vision) means that she’s doing it all with a grumpy old passenger for company. It also means her social life’s gone way downhill ‘cause she’s taking me to all my appointments. This included a two and a half hour drive each way to Palmerston North for a forty-five minute appointment with a Radiation Oncologist.

So, about that appointment. 

Denise and I sat in a room with this very polite and respectful gentleman while he proceeded to scare us both for what seemed to be an exceedingly excessive period of time. We now know all the things that “could” go wrong with the Radiation Therapy. Best outcome seems to be further damage to my eye – no one knows how much. On top of that I could end up with short-term memory loss. That’ll be fun – I can never find my keys now.

I guess my real problem’s been that physically, everything’s fine - apart from my eye – but everything seems to be taking forever and I’ve got far too much free time. Over the past month I’ve been to numerous appointments with Specialists and Therapists but at the end of each appointment the forward progress seems to be either minimal or nothing.

Reading back over this, I sound petty and ungrateful, don’t I? Hang on a tick. I’ll be back in a minute - I’m just going to wander down to the Supplement shop and get something to sort out my attitude.

So, here’s where I’m at with all the wonderful people trying their best to help me…

The Hand Therapist has been terrific and is happy with my progress. and now she’s arranging for a special sleeve for me to wear. She’s pretty serious about it and she and Denise have come to an “arrangement” to make sure I wear it. Does this qualify as Elder Abuse? It’s to try to reduce the scaring on my arm.

Looking at my arm now, compared to what it looked like two months ago, I realize I should be much happier with my progress than I sound. So, just ignore the moaning, 'cause I think my head’s in a reasonably good place.

Here’s a thing!

When I was in Auckland the Eye Clinic sent a referral to the Ophthalmology Department at Hawkes Bay Hospital. Turns out, this was one of the pieces of paper that I never got to see - not that I think it would have made any difference if I had – although it might have lessened the frustration a little. According to the Booking Office at HBH the appointment was to be at least six weeks after the referral date. It also appears that I was to see a different Specialist to have my eyes “measured” before the ophthalmology appointment. So, after what turned out to be two months, I received confirmation of both appointments, one on a Monday and the other on the following Wednesday. All good – things are starting to move again.

  

On the Monday morning, I get a phone call to say the first appointment has been cancelled and it’ll be rescheduled, but the Wednesday appointment still stands. So off we go on Wednesday to see the Ophthalmologist and one of the first things she says is…

“We need to get you to see another Specialist to get your eyes measured so we can see what’s going on.”

What the…???

Anyway, after a prod and a poke and another look at my discharge summary we all agreed that another CT scan is called for. Hopefully this’ll show if an eye muscle or nerve is being pinched by the tin under my eye. So that’s now on the “to do” list.

YES!!! On the following Wednesday we went to get my eyes measured. Gotta say, over the years I’ve had a lot of eye tests but nothing like this one. The Specialist started off with a black wand to cover one eye, a “ruler” that had different glass sections in it and a normal ruler. After testing each eye about five times each she told us she couldn’t work out what was happening, ‘cause each time I moved my eyes the reading changed – this kinda indicated that my right eye was doing whatever it wanted,  regardless of what I was  trying to tell it to do. 

So, then she sat me in front of a chart on the wall that had a hatched pattern. I was given a green laser light and told to place the green light on top of the red light that she was shining right in the middle of the chart. Then she started moving the light all over the place while telling me to follow along placing the green light on top of the red light.

Well, I gotta say – I thought I aced it. But as we walked out Denise challenged me to a  Target Shooting competition before she told me I wasn’t getting anywhere close to the red light. That was a bit of an eye opener. (Sorry.)

Anyway, now I’ve got a bit more of a clue about what’s going on. It seems when I look up or down, or to either side, my right eye doesn’t travel as far, or at the same speed, as my left so I end up seeing two images. When I look straight ahead both eyes are pretty much looking in the same direction except, my right eye is rotated clockwise about five degrees which means one image is straight up and down and the other is tilted.

And for the icing on the cake… all the Specialists are telling me that my eyesight will get worse with radiation. Something to look forward to.

Yay!!! Finally got the call.

On Monday we’re off to Palmerston North again. This time for a couple of days. The first day is for make-up and wardrobe. Apparently, I’ll be wearing a mask every day to stop me fidgeting.

The second day is for more CT scans and MRIs.

At this rate I’ll be glowing before the therapy even starts.

So, we’ll be spending Monday and Tuesday nights at Ozanam House in Palmerston North.

The Palmerston North facility is run by a Charitable Trust that was established by the St Vincent de Paul Society and the Cancer Society to provide accommodation for patients receiving cancer treatment at Palmerston North Hospital. It’s where we’ll be staying when the treatment actually starts, and you’ll be hearing more about this facility and the work they do in my future posts.

But for now you can see more about this facility at… www.ozanamhouse.org.nz or click on the same link in the website menu on the right.

So, that's us. All up to date. Hopefully the next post won’t be so long in coming.

Till then, take care of each other and remember to be kind.