Jus cruisin...

Today's Monday. Friday's MDT meeting day. To be honest, I'm not really too bothered. I don't have much control over my situation and what's going to happen going forward. I know I can ask lots of questions and probably become confused, and maybe even frustrated, with the "doctorspeak" that's sure to come my way. But I know, at the end of the day, I'm going to accept the decisions made by the Specialists and Professionals with regard to the way forward. 

I have to. Because I have to have faith in them and their experience. Of one thing I'm certain. I know that everyone involved with my care will be doing the best they can to make sure I come through this experience successfully, and with the best outcome.

I'm not being fatalistic...

I'm being optimistic.

And... here's why...

Last Wednesday I went for a CT Scan. This was a full body scan organised by Dr. G. Apparently this type of scan needs to be done before you front up to the MDT meeting. Anyway, we got the results on Friday. (This new Manage My Health App is brilliant.) Without too much bother Denise (ex-nurse) was able to work out that the only problems I had were all in my head. (Shut-up!) The rest of my body, including all the lymph nodes, were clear. Great news, so we decided to celebrate.

First was dinner out at a fancy new Restaurant called MALO in Havelock North. Our impressions...

Friendly and attentive staff.

Smallish portions - which we like.

Absolutely delicious food.  

And we thoroughly enjoyed the experience. Even though she polished off two starters, Denise reckons she's just having the desert next time we go.

Then we decided we needed a road trip, so, next morning we jumped in the car and drove to Wellington to see the Terracotta Warriors at Te Papa. Here's how that went...

We rock up at Te Papa at about 2:00 pm. park the car and head on inside. Bit of a crowd, but not too bad. The night before we'd bought two tickets off the website for the 3:00 pm show, so we wandered up to the Fourth Floor - using the stairs 'cause we still can - and kinda drifted into the front of the exhibition. One of the young ladies in a Te Papa Shirt notices us and walks over. She asks us all the right questions, shows us two roped off lines and explains that we can wait in the left-hand line if we want, but we won't be able to go in until after 3:00. Or... we can come back a little after 3:00 when all the lines have gone and just wander straight in. So, we go for option two.

While we're talking to her, Denise asks if we can get Audio Guides to the exhibition? Certainly, says she, but we'll have to take our place in the line of people waiting to buy tickets. Or... why don't you go down to Level 2 and buy vouchers for the Audio Guides from the Reception Desk? That'll save you waiting in line. Great idea! Let's do that.

Because we've still got quite a lot of time before we can go in we decide to have a look at the Immigration exhibition next door. They have an area in this exhibition where, by pushing a few buttons, you can work out if you would be allowed to come to New Zealand as an immigrant back in the day. I tried my luck in 1870 and "Yes!" I would be able to immigrate. I tried my luck again in 1996 and "NOOoooo!!!" Definitely not. 

What??

Why??

It's a good thing I was able to sneak in under Denise's skirt in 1990. 

While Denise is still looking through the Exhibition I decide to go down to Level 2 to get the Audio Guide vouchers - using the stairs of course. I rock up to the desk and face off with a smiling volunteer dude. The conversation goes like this...

It's now about a quarter to Three. We see a bit of a line starting to form, so off we go. When we get to the front, we're told that we can't get in before three because we've got tickets for 3:00 pm. We're then told, we can go in anytime between 3:00 and 4:00

So, with a confused look at each other, we wander out to the foyer again and find a seat - and sit and watch as they let others in who've just bought tickets.

IT'S 3:00 PM. We join the line. One of the lovely ladies assisting people asks if we have tickets. "Yes, we have tickets for 3:00 PM." 

"Great", she says.

"Can we get Audio Guides to the exhibition? asks Denise.

"Yes," says she. Just walk past the queue straight up to the desk and you can pay for them there. So we bought vouchers for the Audio Guides, were told to cut in front of the queue, and - WE'RE IN!!!

The exhibition was very well put together and well worth seeing. We're pleased we decided to go.

 

While there we also took another tour through the Gallipoli exhibition. It's extremely well done, and if you find yourself in Wellington with an hour to spare, go and have a look.

Then we went up to the fifth floor to see the art exhibitions. There were three Goldies on display, so that made our day. 

After all this culture we jumped back in the car and went on a bit of a Tiki Tour to find our Hotel. Nothing much to write about there - very standard - very ordinary. After we checked in we wandered off to find something to eat. That's a whole 'nother story waiting to be told. Two hours to get a hamburger for me and a plate of fish and chups for Denise.

You know that thing you did before... that made you smile?
Well...
Do it again.

Hurry Up and Wait...

When things don't go as planned how do you react? Sometimes I get angry and, if you're in range, you might hear all about the earth-shattering circumstances that have caused my frown, red face and sullen expression. But, I think I'm pretty lucky, 'cause over the years I've been able to develop a few coping skills to deal with frustrations, and as I get older I find myself developing and applying a more fatalistic attitude to life. So now I just shrug my shoulders and think: "Oh well". Then I try to dig the funny bits out of the situation. There's always some to find. Like today, when we had to change an accommodation booking.

To explain...

When your local DHB (in our case Hawkes Bay) arranges a meeting with the MDT (Multi-Disciplinary Team) in Auckland they give you a choice of ways to get there. If you want to fly, they'll arrange and pay for flights. If you want to drive they'll arrange and pay for accommodation and give you a fistful of fuel vouchers. In our case we decided to drive. So, we were booked in to a motel in Newmarket - close to the hospital - for the Thursday night before the meeting on Friday. Great we thought. We can do some other stuff around this meeting. so...

• We arranged a few nights accommodation on the North Shore so we could say Happy Birthday to our eldest daughter and play with the grandkids for a couple of days. 
• We arranged an overnight stay in Tauranga on the way back, 
• We arranged to stay with relies in Gisborne for a couple of days. 

Let's make a week of it, we thought. We locked in all the plans and bookings last night.

This morning, we get a call from the hospital to say our MDT meeting has been postponed for a week because our favorite surgeon can't be there on the 25th. So everything has to go out a week.

Not to much to smile about so far, right?

That changed when we started changing bookings. The accommodation we booked in Tauranga was through Booking.com and it was non-refundable. So, we looked at turning our planned road trip on it's head and doing it backwards so we wouldn't forfeit the accommodation cost. But, we couldn't make that work, so I searched through the Booking.com website but it kept telling me that the only option I had was to cancel the booking, which would cost us the full room rate. Looked like we didn't have a choice. 

Then I thought - let's go old school - and I rang the motel. Amanda, the receptionist was very apologetic and accommodating (sorry) and told us we would have to ring Booking.com and gave us the phone number. She then told us that when we talked to Booking.com they would then phone the motel and ask if the booking could be changed. She would tell them it could, and Booking.com would then make the change and send us an updated confirmation. Wonderful! So I rang Booking.com using our home phone. 

The phone was answered by the amazing Grace (sorry) who was only too pleased to change the booking for us, but before she could she would have to ring the motel and ask them if the change could be made. Could I please  hold while she made the phone call? Sure, I said. No problem.

My mobile rang - it was Grace. 

Oops!!

While Grace was busy being flustered and apologetic for ringing the wrong number Denise was cracking up. I was following close behind and as soon as Grace stopped the call to ring the right number we both had a good chuckle at Grace's expense. Sorry Grace.

So, the upshot of all  this is that everything's been put back a week. Now all we have to do is find something to keep  us distracted. The front fence needs painting. Maybe I'll do that - or not.

Thanks for the laugh, Lee. Keep 'em coming.

Now I think we need a joke from an Owens.

Be kind, and laugh a lot.

How to begin?

I've got Cancer. It'll probably kill me eventually, but not this time. Without knowing, but after listening to past survivors, the outcome of this particular ride will probably result in a fair degree of disfigurement, lots of pain and a necessity to reinvent myself after the treatment's finished.

There's been lots of false starts to this blog. Not sure why. I think maybe because it's important to me that this becomes something that my family, friends and anyone else going down this path finds informative, factual and entertaining.

If I construct this as a Diary I think it will become very emotive, and that's not going to help anyone. If I write it in a "smartarse" way I probably won't be convinced that I'm getting the important messages across. So what to do??

I think I'll probably just wing it and change styles, etc. as the mood takes me. Look at this, three paragraphs in and I haven't actually told you anything.

So... It began about six months ago. I started to get a bit of discomfort under my right eye. I had a small lump removed from my right lower eyelid in 2014 and it was starting to droop and not close properly. My GP referred me to a surgeon at the Soldier's Memorial Hospital in Hawkes Bay who did some great work tightening the eyelid. While there she also biopsied a couple of areas around my eye to check if I had other problems. When the biopsy results came back they were all clear but I was still whingeing, so she referred me back to the Maxiofacial Surgeon who sorted my nose out when I developed an SCC in 2013. (You can read about that journey at www.chrisflaherty.blogspot.com)


Anyway, after a bit of prodding and poking, a couple of MRIs and a CT scan, they found a mass had formed along the Infraorbital Nerve under my right eye. The mass extends along the nerve on both the inside and outside of my cheekbone. So, a biopsy later and it's confirmed as Squamous Cell Carcinoma. Same as my nose back in 2013.


Here's an interesting aside...

The PHO (Primary Health Organisation) in Hawkes Bay are promoting a website called "Manage My Health". You can find it at www.managemyhealth.co.nz They also have an App of the same name that you can download from the App Store or from the Microsoft Store. Anyway, I've been using it for awhile and every time someone adds a report, a lab result or a doctor's comment to my records I get an email from Manage My Health to tell me there are new records. That's how I found out about the biopsy results. I've gotta say, I found it much better than having to present myself to a clinic to have someone try to give me the news without upsetting me, and me wandering off feeling confused and dejected.

Moving on... the wheels are now well and truly moving. Next week we're off to Auckland to meet with a Multi-Disciplinary Team. During and after the meeting they'll be finalizing the plan and locking in the way forward. It sounds as if I'll be having surgery in Auckland, sooner rather than later. Then, after about five weeks of recovery I'll be reporting for radiotherapy. Mind you, this is all subject to change.

How do I feel about all this? 

At the moment, I'm quite calm and, in lots of ways, looking forward to next Spring. I've joined the "Head and Neck Cancer Support Network" and have already received lots of good advice and encouragement from other members. (I've pretty much ignored the negative feedback. Even while I understand why people feel they need to tell me all the bad stuff, I figure I don't need that in my life at the moment.) Denise and I are busy sorting stuff out, to make her life easier going forward, and we're both in a pretty good place at the moment. 

It's the little things. We found a highly recommended lawn mower man today. He's locked in, and it looks like we've found a good gardener as well. We're still to sort out the mail redirection and probably some other little issues that we haven't thought of yet but, in the words of Paul Hogan - "She'll be right"

Thanks for "listening". Looking forward to your comments, and this time I'll try harder to reply to them.