June 9, 2019

"I'm Special" - that's what they keep telling me.


I wonder why staff from different DHBs don’t talk to each other when they have a patient in common?

I also wonder why, when you suggest to someone that they do, the person your're talking to can immediately find any number of reasons why they can’t, or why it’s not a good idea.



For a whole host of very good reasons, of late I’ve been involved with three DHBs: Auckland, Hawkes Bay and Mid-Central. At various times during appointments at each of these DHBs, I’ve been asked questions – or I’ve asked questions - about procedures, tests and scans that occurred at other DHBs. In pretty much every case, the question’s gone unanswered. A lot of times, I’ve been very tempted to explain to the person I’m talking to, how phones, texts and emails work. But, to my credit, I’ve held my tongue.

Now, even though I’ve been involved with the medical profession in New Zealand for a long time, my actual knowledge of medical processes, terms and nomenclature is less than zero. I know this ‘cause just about every time I try to use a medical term, the person I’m talking to corrects me. So, not only don’t I know the correct terminology, I use incorrect terminology. I wonder if this is causing me to ask less questions then I should.

Turns out; getting rid of the cancerous tumor in my face was the easy bit. Even though the surgery was a big deal (I was worked on by two surgical teams for eleven hours) all the stuff that’s come after is proving to be much more of a challenge. Both to me and to Denise.

Last Tuesday we had to go to Palmy to have the Radiation Mask made and for a couple of scans – one of which was a CT Scan of my head - and then last Friday, I had to have another CT Scan of the same area in Hastings. Now there are probably any number of good reasons why the same CT Scan can’t be used by both doctors, but I’m buggered if I know what they might be. It’s not that I’m worried about the number of CT Scans I’ve had. According to Dr. Google the compound effect of multiple CT Scans is negligible. It’s more that it seems to point to inefficiency and waste in our medical system.

Listen to me! I wonder if getting my brain fried is leading to me growing a social conscience. Let’s all hope not.

Anyway, I had two appointments last week. The first one was with the Hand Therapist to have a special glove fitted.

Now just to backtrack a bit – it seems you only get to see the Hand Therapist if you are referred by someone. Interestingly, no one’s ever said anything about this, so I can only assume that the referral was done by the Physio from Auckland that fitted me with a wrist support soon after the operation. But if you want a referral apparently you can just ask your GP for it.



It’s basically a compression sleeve that’s used to reduce the scaring and the swelling from the donor site. It does this by forcing the blood and other fluids away from the site. It seems to work quite well. After wearing it for a couple of days the swelling just below my elbow reduced quite a bit.



The Therapist used a special paper “thingy” to measure the circumference of my arm every four centimeters from my elbow to my wrist. This was sent to “Stralia” and a week later the glove turned up.

You can see how the inside of the sleeve has little “bobbley” bits. These apparently do most of the work.



So, then it’s on to the next appointment. This one with the Eye Specialist – and, guess what? We found another Gremlin in the system. Turned out that everyone – the booking clerk, the receptionist, the nurse at the clinic – all knew about the appointment. The only person “they” forgot to tell was the Specialist. Gotta say, she looked a little surprised when she called into the clinic about three-quarters of an hour after our appointment time and saw us sitting there.

Anyway, after a while rearranging some things we got to talk about my eye. Now, to be fair, we actually already knew how the discussion was going to go, ‘cause we’d received the CT Scan results before the appointment. Thanks again to “Manage My Health”. (This really is a great tool for doctors and patients.) It seems one of the major issues with my eye – but not the only one - is that the lower eye muscle is “catching” on the mesh that makes up the lower orbit of my eye – or, there’s scar tissue catching the muscle as it tries to move. Either way, it’s a problem that doesn’t have an easy fix. So, the next step – an appointment with the Maxillofacial Surgeon. Hopefully between the two of them they can work out a way forward.

As if things aren’t complicated enough… I’m supposed to start Radiation Therapy next week, but that might not be a happening thing now. We got a call from the Radiation Centre in Palmy the other day and they want to see me again before they lock in the program. Apparently, the Oncologist is having trouble with the planning – whatever that means. I guess I’ll find out soon.

Hopefully the Radiation Therapy won’t be postponed. Seems it will cause damage to my eye anyway, so, it would be good to get past this so we know how bad things will actually be, rather than just guessing what’s going to happen.




Do you know how confusing it is to buy an eye patch? There’s any number of patches you can buy for kids, from Jack Sparrow types to Frozen types. Not so much available for big kids. I picked up a couple of cheap cardboard ones from the chemists. But seems there’s not much call for them, unless you’re into Cosplay - I wonder if I could get one from the King of Asgard. He probably won’t need it anymore.



Anyway, I think I’ve found one on Fishpond, so we’ll see what turns up. When I’m inside I can use my glasses with the right side covered but when I’m outside, any sort of breeze gives me grief, and it’s looking more and more like it might become a permanent, or semi-permanent, thing.  

So, now looking forward to another big week of appointments. Maybe by the weekend I’ll have a better idea of what’s going to happen. Time to stand tall and just shrug it off. I’ve decided if I don’t have control over things going forward, what’s the point worrying about it.

I know you are already, but remember to keep being kind.

2 comments:

  1. 🥰🥰🥰 big, warm, sloppy hugs

    ReplyDelete