No!! Not that way - Let's go this way.

Well, this is becoming a real trip. Last week, the Palmerston North (PN) Radiation Oncologist decided he wanted to see me again before the radiation treatment started – so, Tuesday morning, and we’re off to PN – again. We tried to get the Nurse who set up the appointment to ask the doctor to phone us but, he said no. So here we are again, driving for five hours for what’s probably going to be a thirty-minute face to face.

I couldn’t sleep last night. I spent the night composing a rant to deliver to the Oncologist for wasting our time and money. Problem is, he’s such a nice guy, and so well meaning that it’s hard to get upset with him. Anyway, it seems the reason for the appointment was to tell us that there’s no way he could plan the therapy without causing more damage to my eye, so we went over the CT Scans again while he explained why. Then we started talking about options… Seems there’s two…

Option 1 – Take my eye out before treatment starts – which means I wouldn’t be able to start the radiation until I’d healed from the surgery.

Option 2 – Leave my eye alone, put me on pain killers after the treatment, and sometime in the future, when the pain becomes too great, give my right eye the flick.

After a long discussion, that seemed to go around in circles, he rings my Eye Surgeon to get her thoughts. While I couldn’t hear her side of the conversation, from his responses and demeanour, and after quite a short conversation, it seems Option 1 is off the table – the eye’s not coming out.

So, we all agree on Option 2.

But wait – Let’s see what Dr. G has to say at tomorrow’s appointment.

So, next afternoon we go and spend some quality time in Hastings Hospital while we bring Dr. G up to speed and – he rolls out Option 3.

He knows there’s a radiation machine in Auckland that’s way more advanced than the PN ones, and this would be able to target the problem area much more precisely. Then, straight away, he’s formulating a plan. He’s going to talk to “someone” in the HBDHB to make sure it can happen – He’s going to talk to “the guy” that runs it, to see if he’s confident the treatment would be more successful – He’s going to talk to someone in PN to make sure everyone’s happy there – and, next thing, he’s telling us to go home and not worry.

So we do.

Two days later and I get a call from Dr. G. It’s all sorted. The Radiation Oncologist has reviewed all my data and is confident they can protect my eye during treatment, but he wants to see me before the treatment is planned. As Dr. G is telling me this, I’m having a bit of a mental mind explosion and start asking stupid questions. Eventually I get my brain to start functioning again and after listening to me asking questions that don’t really make any sense, Dr. G asks me straight up:

“Do you want to keep your eye, or do you want to go ahead with the treatment plan in PN?”

After me replying with an emphatic “Yes, I want to keep my eye”, he puts on his Travel Agent hat and tells me they’ll sort out all the logistics and call me again early next week. So, then I wander out to the kitchen to tell Denise. Her immediate reaction – a word comes out of her mouth at quite a volume that kinda confirms she’s got a Potty Mouth.

Now, here’s a question…

Suppose your name is Joe Average and you’re in a similar position to me. If you haven’t got someone who knows the “System” and is working in your best interests, how do you find out about stuff like this?

If I hadn’t had an appointment with Dr. G the day after our PN visit, I would have “blindly” gone ahead with the Radiation Technique in PN, never knowing of a better path. And… if Dr. G wasn’t looking after my interests and fighting on my behalf, had I found out about the machine in Auckland, how would I have gone about getting access to it?

So, I guess through next week I’ll find out a lot more. Here’s hoping, anyway.

 A couple of weeks ago I saw an Event posted on Facebook for a fundraiser for the Cancer Society. I wandered along yesterday to have a nosey. What an eye opener.

A group of teenagers from one of the local High Schools had decided to organise and run a fundraiser because cancer had affected a number of them over the past few years, and those not affected wanted to show their friends their support. These young adults, in their early to mid teens, showed those who attended what it means to offer tangible and practical support to those travelling along the cancer road. From the boys and girls cooking the sausages and selling cakes, to the young artists who performed to entertain the crowd, watching you showing your support in whichever way you could was both humbling and gratifying.

And then – some of the youngsters got up on stage and told their stories. This took things to a whole different level and showed a level of courage and strength that I can only hope to emulate. It also reinforced the idea that – no matter how hard your day is, always look for something positive to focus on.

Congratulations to all those involved. Feel proud – because you should.

Now, back to me -

It’s some ten days since I started writing this. I’ve been hanging off posting it, waiting to find out what’s happening. I found out the outline of the plan this morning. Denise and I are going to Auckland on Friday or Saturday to meet the team at Mercy Hospital. This is where the “Flash Harry” machine is located. If the Specialists at Mercy think they can save my eye, they’ll start formulating a plan. This’ll probably take another couple of weeks, and then Denise and I will be staying somewhere in Auckland for about six weeks after that.

If they can’t protect my eye, then it’s back to Plan A and Palmerston North. I wonder if I’ll have to go to the back of the queue? I hope not. It’s already been three months since the operation. According to “everybody” I should be well into my treatment by now.

Anyway, there’s so many unanswered questions now that I’m at a point where I’ve stopped asking. I’m quickly coming to realise that, for a lot of them – no one knows the answers. If I step back a bit and think about this, it’s probably the way it should be. Is it better to wonder what’s going to happen, rather than have someone create an expectation in your mind that may or may not eventuate?

I think in my case, it’s easier for me to not have some questions answered. This lets me twist things in a positive direction in my mind – then if things do go pear shaped, I’ll be able to deal with them from a positive point of view. I realize that Medical Professionals have a responsibility to warn you about all the things that could go wrong, but sometimes, I just want them to stop talking. I think if people keep reminding me of all the negatives, it’ll just do my head in.

See, even now, after knowing just a little bit about Auckland and the treatment plan, I’ve created a scenario in my head about how it’s all going to unfold. It’ll be interesting to look back later to see how my imagination compares to the reality.

But for now – I think it probably time to go and watch one of the British Panel Shows. They’ve become my “go to” when I need a laugh. I think Taskmaster is probably my favourite.

Take care of each other, and make sure to be kind to yourself.