What have I forgotten to do?

Is the constant message going round in my head..
I'm sure I've covered everything.. anything I've forgotten can be sorted easily, of that I'm sure.

It's been a hectic day, Starting at 7am with the trip to pick up the shipper from IRL. Once again thanks Marc for your assistance with filling and priming it.

From there I took it to Wgtn hospital and the onslaught of paperwork began.
I found out today that this is the first time someone in Wgtn has privately organised and shipped their own stem cells overseas. I'd just figured it was what you did in these circumstances.
The head of Haematology came up and wanted to have a word with me.
He asked that I sign a letter stating that the cells were now in my care and that I understood and accepted all risks in transportation. This was fair enough I thought.

One thing that really worried me was his concerns that the shipment not be X-rayed while in transit. This had never occurred to me, apparently it will render the cells useless. At that point we all drove home the importance to the agent from World Couriers that the container be marked accordingly and all paperwork stipulated the consequences of such. Scary, scary.. imagine the results of having my bone marrow destroyed by chemo and not understanding why the new ones won't grow.

Anyway, I took the opportunity to ask the head of Haematology if there were any other factors other than my weak marrow and low stem cell harvest that could affect the transplant. He said no and repeated what we already knew about slow recovery times etc.
I got the impression he was very positive about my decision, he certainly didn't have anything negative to say and expressed no concerns. It really does make me feel a heck of a lot better.

Loading the bags of stem cells was interesting, there were ten of them in total, looking like small bags of frozen orange cordial. I had purchased a nine blood bag rack for the shipper and we just managed to get all 10 squeezed in along with a couple of tiny test ampules. The bags were kept in a large cryo refrigerator (about the size of a large chest freezer but with pipes and guages) and their location is recorded on a computer system. It was a good thing I was there because half the bags were in the system under Scanlan and the rest under Scanlon. I pointed out the typo on the paper work and the other bags were located. I'm sure they would have found them regardless, but it always amazes me that people just randomly change the spelling of my name. In a hospital enviroment that can be down right dangerous.

All day today I kept bumping into people, my pocket is full of scraps of paper and business cards of friends and acquaintances that want to be kept up to speed and sent a link to this blog.
I've always believed that everything happens for a reason, both good and bad. Bad things that happen may well be the best outcome you could want, only you don't realise it. Like crashing your car and complaining about the dent, when in fact the outcome was supposed to be far worse.
I started to write a lot more... then I realised I'm supposed to be packing.
I'll save it for a quiet day in a week or so.

A huge "thank you!!" to everyone for the kind words, emails, phone calls, texts and offers of help. Sarah and I have been completely overwhelmed by it all, It's just awesome!

Who me a control freak??

Those of you who know me well, will know that I just love techie toys.

The two main things I'm taking with me to Germany are my laptop and my Archos Digital video recorder. The DVR is a small (approx 125x75mm) unit consisting of a 100gig hard-drive and an LCD screen. On it I have amassed a huge collection of many hundreds of full length movies and TV shows. This should give me some respite from the German satelite TV that is in my hospital room. (Can you image anything worse than Dutch or German comedy? do they even do comedy??) It can also record video using a tiny camera, so I might just sneak some footage and post it here.

The other cool thing is what I've done with my laptop. Not only is it my command centre for texting, emailing and blogging but I've also installed software that allows me to take full control of all three my work and home computers. I can even start them up if they are turned off.

The screen on the laptop becomes the screen of the computer I'm controlling, this allows me to review invoices and documents on my work pc for instance as if I was actually there.

Then there is the webcam that streams live video of the workshop directly onto my laptop.

That way I can see at a glance how well the workshop is doing, provide security for Kurt and keep an eye on my race car that sits gathering dust in the corner.

I joked with Sarah that maybe the network at the hospital would block the ports (channels) I need to do all this, but then I do like a challenge.. hacking the hospital network could keep me busy for hours !

Muahaha !

Ooh Pacific Radiology has just phoned, my PET scan is loaded to a CD.. I can go and pick it up.. Catchya tomorrow!

The Countdown begins..

This has become a full time job! The amount of work involved in all this is incredible!
I really do wonder how someone who was not as able as myself would get all this organised.

The number of phone calls, emails and running around has consumed every waking hour for the last couple of weeks.

So lets update where we are at.. The Shipper is currently at IRL (Industrial Research Ltd) where it is settling after having been filled with liquid nitrogen. I really can't thank the team there enough for all their help.
All the customs paperwork for the transportation of the Stem cells has been collected and forwarded on the Wgtn hospital Immunology dept for signing.
World Couriers are primed and ready to pickup the shipper tomorrow at 10am. I'll deliver the empty shipper to Immunology at about 9:30am and the team there will load transfer the stem cells into it at the last minute.

It's then sent on the most direct flight to Munich arriving 5pm at the Leonardis Clinic where they have someone waiting to put them back into cold storage.
The flight for the stem cells taking a lot less time than my own travel arrangements.

I've purchased a set of reading glasses, done at the last minute and within 24 hours by the team at blackeyes.co.nz . I've been using a cheap set from the chemist and they seemed ok, they made things bigger but not much clearer. It wasn't until I talked to my brother-in-law Ken and he told me that cheap reading glasses can actually make your sight worse, that I thought I'd better get it sorted before I leave.
I'll be spending a lot of time on the laptop and the last thing I need is a case of eye strain ! :)

I picked up the glasses yesterday and what a difference! I can read the tiniest of print in crystal clear vision. You don't realise how bad your eyes get with age until you can compare.

I've approached Pacific Radiology about getting the full version of my last PET scan burnt to CD. I have the written result that came with my medical records, but I'm sure the team in Germany will need to see the full colour images from the last scan in order to locate the tumours in my chest to collect cells for the Dentritic cell vaccine . Again the people at PR have been great to deal with.

Lastly I've organised a room to stay in at the Airport Regal Hotel in Hong Kong.
My stop-over there is nearly 16 hours , arriving at 6:45am and departing at 11:05pm. So booking a room to have a shower, a sleep and to use for a base if I decide to venture into the city will be a godsend. The hotel is connected to the airport by an air-bridge so I don't even have to venture outside if I don't feel like it.

Leaving comments: How to (Updated)

There are two functions available below each posting, one is an icon of an envelope. Click the envelope if you want to send details of my blog on to a friend who you think might be interested.

The word "Comments" is clickable and is for writing or reading comments. You don't have to have a Google ID to post.
Just select the "Name/URL" tab below the posting window.
Type in your name and leave the URL field empty. Click "Publish your comment" and you're done!

I review the comments before they are published just in case any spam sneaks in. So it may be a few hours before your comments are visible to others.

It's also worth pointing out that all images are clickable. This opens them full size in a new window.

The other cool thing is that if you click on the Title of a post, it will open in a window by itself and all comments are displayed along with it.

Cheers! ...Ron

Finally we have a shipper!

I'm so glad I made that phone call to the customs agents! Within 1 hour of doing so I was phoned and told it had been cleared and I could pick it up.

Man this thing is huge! I opened it up and even though it was last thursday that Taylor Wharton had tested it for me, it's bloody cold inside! I'd say you'd have frostbite in seconds if you were stupid enough to try and touch the internal workings.. (yeah I figured that one out pretty quick!)

It comes with a special hard-shell case as well which makes the thing look like a nuclear weapon. I wonder what other uses I could find for it? Gotta be some party tricks I can do with such a beast of a toy :>

Frustrating!

I got confirmation last night that the Dry Shipper was on its way. I'd already called my customs agents to let them know the details and to stress how urgent this was.
By 1pm having heard nothing from either my agents or the logistics company that shipped it, I decided to make a call to the person at the customs agency who is handling things for me.
Despite every single document being marked as extremely urgent, and myself having been cc'd a copy of an email that was sent to her by superiors, the woman knew nothing about it and had to rummage through a desk full of paperwork just to find it. Grrrrr!!!!!

She says she's onto it now and will contact the shipping agents. It's so frustrating knowing the unit is just sitting in a warehouse at Wgtn airport and no-one is moving on it.
It must be here by tomorrow or I'll miss the 10am Friday morning pickup from the hospital due to the 2 days required to prime it.

Honest I don't stress anymore... can you tell ? ;)

Just a couple of things..

I fired off an email to friends and family last night pointing them to this blog for updates. (I'm figuring that's probably why you are reading this now)

Thanks for all the replies offering help, support and warm wishes. They are greatly appreciated by both Sarah and myself.

A few people have asked if Sarah is coming with me. She will be travelling to Germany about two weeks behind me. That was my idea, she wants to be with me the entire time.
I think I'll be more relaxed initially if I am by myself. Later when I'm recovering Sarah will come over and bring me home, plus we can have a few days to ourselves sightseeing if I'm up to it.

I had another bout of back pain last night, my system seems to be flawed. I added 2 Ibuprofen to the 2 panadol and 2ml of Morphine and I was asleep and pain free in about 30 minutes. I'll try that again tonight and see if it's the magic bullet this time.

I've lost a lot of weight since having radiation treatment in March and have put none of it back on. In fact I've lost some more. One of the symptoms of HL is weight loss so no surprises there.
For the first time since I was 16 I now weight under 70kg.

I told Sarah I wanted to buy some new clothes and so I dragged her off clothes shopping yesterday. (Now how many straight guys have ever written that line!)
She kicked up a fuss and said I had plenty of clothes and that I'd grow back into them once I got back. I insisted I wanted some new gear for the trip to Europe and to impress the nurses.
Murray had bought me some stylish new jeans and a shirt as a gift while he was in Belgium, so I wanted to buy a couple of tops and a shirt to go with them.

Had to laugh.. When I got home Sarah insisted I try them on, then when she saw how good I looked compared to the baggy rags I'd been wearing she insisted I wear my new clothes all night so she could appreciate me before the nurses did.

Cheap,cheap,cheap..

My good friend Murray O'Neil recently spent 6 weeks in and around Belgium, The UK and Germany. He returned home to find a bill from Vodafone for nearly $1500 worth of txt and voice calls. A text from Germany while roaming will cost you the princely sum of $1. If you group text 20 people to tell them you are now a proud Uncle to a little girl, complete with updates, as he did, that would cost you $20 a pop.
It's not hard to see where the money went. !!

Now other than this blog, and email (yay! the clinic has wireless LAN) I intend to send a lot of texts. But not at $1 a pop!
I fired up Google and went hunting for "SMS software" found quite a few, including some free ones that included advertising messages, not a good thing.

One program that caught my eye was Clickatell's Messenger-PRO.
I tested it out and it looked perfect for my needs. For just $27 I purchased 300 credits which are then used up at various rates depending on where you are texting to.
Texts sent to New Zealand from my laptop will cost the paltry sum of just 8cents each. What's better is that the messages appear to the recipient to have come from my phone, so replies are received as they usually would on my mobile.

Of course the biggest hurdle is the different time zones. I'll be 10 hours behind meaning that most of my waking hours are in the middle of the night NZ time. I suggest you don't sleep with your phone beside the bed if you want a good nights sleep! :->

Things that go thump in the night.

One of the "B" symptoms I get is a pulsing back ache at night.
To stop it from happening all I need to do is take two panadol at around 6pm followed by two more just before I fall asleep around 10:30pm.
This was worked out simply by taking them in that order one evening and having a great night's sleep. I've found that nothing else works. Forget, or take them too late and it's an extremely painful experience.

Last night I took only one panadol at around 4pm followed by 2 more at 11pm. I was woken at 12:40am by this incredible pincer like pain in the flanks of my lower back. It pulses with my heartbeat and is almost unbearable, like someone putting a Taser on my spine and being zapped 70 times a minute. This rates at about 7 on my personal pain scale.

From that point there is nothing I can do for the next 1 1/2 hours except ride it out.
Last night I dipped into my personal collection of self medication drugs and treated myself to 2ml of Morphine. It doesn't really do a lot for the pain initially but after a 30 minutes your so focused on the pretty colours and surreal thoughts sweeping through your head that the pain doesn't really matter anymore.

So lesson learned, stick with what works! If it wasn't for the back pain I'd have no symptoms at all. Symptoms are good though.. you know when you are getting better when they fade away.
Problem is that would involve not taking any panadol... hmmm no pain, no gain.