We came across this fantastic work of art in the Woodhall gardens yesterday (out for a first ride on our standard bikes - so wobbly overcompensating for a lack of weight and length) by artist Tony Gillies (and plus one). All done with plants and totally impermanent. We’re grateful to Tony for the smile it put on our faces that this seemed an appropriate picture to start this post.
We’d just been served coffee by Neil at Sailors cutting when I left off the last Gratitude post, so we’ll continue working our way up the country from there…
It’s always been a bit of an effort to work out how to charge all our devices each night (particularly the sign(s) on the coffin trailer). We brought along an extension cord especially so as long as we have a plug we can run that to the coffin and put everything inside charging on the plugbox where it can be locked away and is safe from the rain. Unfortunately we have a standard plug on the extension cord, not a caravan one which would plug into the camping outlets, so it can take a while to find an out of the way spot to move the coffin to that is close to a standard outlet. Steve, manager at the Duntroon domain, let us plug in to the side of his caravan (and signed the petition) - thanks Steve.
We had another great Top 10 experience at the Timaru Top 10 campground. We really like the little touches such as the planters of fresh herbs outside the kitchens. Despite it being in the middle of town I was surprised at how quiet it was when I woke up at one stage in the night. We’re very grateful to Gordon who didn’t charge us anything for our camping (and showers!) for the night.
It was so nice to meet Paula, the next morning who led us out of Timaru on the back streets. She blitzed us on the uphills but we definitely had the edge with all our weight on the downhills. We managed to get all the way to Temuka with only a short section on SH1 - so nice. Thanks Paula and thanks to the Temuka Pottery shop too, who served us delicious coffee and a delicious muffin (it said so on the sign and it was correct!) for free.
One of our goals for the trip was to get as much media attention as possible (and we were very successful - I’ll post links to all the coverage we know about some other time) but Mick Jensen of the Ashburton Courier really went the extra mile by giving us a place to stay and feeding us dinner. It was so nice to meet, and have the support, of Mick, Eveline and Laura. Mick was even incredibly gracious when he heard we were meeting with their competition the Ashburton Guardian as well. He understood it was all in the aid of a great cause.
Many people have shared heart breaking stories with us but Andre van Rooyen is a bit special. He’s managing to maintain an amazing outlook despite having to find $10,000 (yes you read that correctly I have not added an extra zero) a month to fund his treatment. Andre must be pretty special because it seems like the whole Ashburton community is rallying behind him to help fundraise - actually that must mean the Ashburton community is really special and certainly our experience would support that conclusion 100%. Thank you for sharing your story and your sobering but hilarious story of being in the Southland stadium when the roof collapsed due to snow. Hang in there buddy - we’re still fighting for you.
Greg McCallister (and Gerard), what can we say, you dedicated the best part of two whole days to seeing us safely in and out of Christchurch and you secured the awesome interview we had with Compass FM. You even brought us coffee. We’ll be right behind you when you do the Tour Aotearoa for the Heart Kids. Ha - now we’ve committed you ;-) Instead of saying thanks I will wish that all your winds are tailwinds and all your flats are level ones!
Thanks Martin and Paula for the roof over our heads in Christchurch. It’s always so nice to stay with you, bro, and catch up and it never seems to be a bother despite all you have going on in your lives and in your house. We’re looking forward to the next time (just not the drive up from Dunedin).
We almost cycled past our send off in Christchurch but we’re so glad we didn’t. Thank you Malcolm’s extended family and the Matthews family for being there for us. So nice to meet you and we’re so sorry you had to put up with the petty officiousness of the security guards at the bus interchange.
I’d like to thank Tom Kitchin from the Christchurch press for following up that incident with the city council and letting us know that ‘the security guard "erred" in this instance. The council says people are entitled to peacefully protest in public areas as it "it is an important part of democracy". They've advised the security contractor that written permission is not required for peaceful protests.’ Please can the next group that needs to protest something in Christchurch do it at the bus interchange for our sake so we can check that the message has made it through?
Julie at Red Rock Hats gave Millie “Pickles” the cat (a little broach) which, to protect from the sunscreen we’re always slathering on, she attached to one of the straps holding Hope into her bike seat. Seeing Pickles always brought a smile and the two looked really good together. Thanks, Julie.
We had our first in-studio radio interview with John at Compass FM in Rangiora. What an amazing experience. Your whole team is so caring and so, so professional - exactly what community radio should be. Sorry Radio New Zealand in terms of interview depth and professionalism Compass FM beat the socks off you. John asked great questions from some short research and directed them cleverly so Millie and I didn’t talk over each other. Then later, Steph, without us asking had the kind thought to send through a copy of the interview to us. We were so touched. And then I had a further follow up interview with John from Wellington last Thursday. We’ve been proud to carry your sticker on the front of the coffin from Rangiora to Wellington.
Not only were we very relieved to find camping at Delhaven motels in Amberley, but Sue also let us stay for free. Thank you Sue - such a nice feeling camp with plenty of space.
We then met William and Geoff, apprentice Vintners for Black Estate and Pegasus Bay respectively, at Brew Moon in Amberley. They were so patient with our questions and sharing their knowledge about wine making. It’s a pity neither winery was open when we cycled past the next day (though both William and Geoff would have been working by then). I did look for a Black Estate wine on Friday to celebrate the news that Kalydeco will be funded but it’s not carried by out local supermarket unfortunately (I was on a bike, of course, so it was difficult to hunt further afield).
Rob and Lynn at Great Valley campground, having heard us on Compass FM, offered us a cabin for the night. Due to distances and where we stayed, we couldn’t take up the offer but it was very much appreciated anyway. We stopped by the camp and got to meet Rob who, with a couple of friends, signed the petition and coffin - thank you.
Having the unique Solar Trike across the road from the unique coffin trailer must have been a world first. It was so great to meet David Brandenburger and he kindly sent through this and other photos later on and even happened meet my nephew Josh at the bike park in Christchurch. David, safe travels and good luck with the rest of your journey we did envy both your set up and your tailwind when you went past. It’s such a pity you didn’t find The Staging Post open as we did. Had we camped together I’m sure we would have had so much to talk about.
To Alan, the policeman who pulled us over and all the other boys and girls in blue working to keep us safe on the roads especially during the holidays we are indebted. I know the people you pull over and slow down don’t always appreciate it but we certainly do. Of course, we would have preferred to have been off-road entirely. Bring on a cycle way the length of the country!
The Store at Kekerengu (not a store) is an amazing place to stop. Such a great garden area for resting and spectacular views. Oh, and the free cheesecake you gave us really hit the spot.
The Top 10 and Blenheim may well be one of the best - well away from any State Highway and Mel was so friendly and sharing. Thanks so much, Mel, for the free site.
It was great to see some of the old lunchtime MTB crew at the Ferry terminal in Wellington. Good to see you again and I’m really sorry we didn’t have more time to catch up or go for a proper ride (through the streets to parliament doesn’t count for that hard-core group).
Big ups to Ant and Helen for putting us up and feeding us in Wellington. Even Ant shared his story of how he’ll have to self-fund some expensive medicine soon. I think it goes to show how it’s much more common than people realise.
Michael Woodhouse deserves praise for taking the coffin and showing that at least one of our one hundred and twenty employees is paying attention.
I can’t believe I am saying this but… thank you Pharmac - for funding Kalydeco. The announcement came out of the blue but meant so much to all of us in the CF community. Believe or not we really feel that we’re on the same side as Pharmac. I’m sure they would like to see their budget doubled too. They’re forced into make agonising decisions day after day (which I would hate to have to do) and it is government policy that is the problem, not Pharmac itself. The length of time it takes to make these decisions is a problem, but that wont be helped by having very limited funds to negotiate with.
I haven’t mentioned many of the press I’ve had direct dealings with but to all those media agencies who gave us coverage, that was one of the main goals of the exercise. Thank you. Together we have definitely raised awareness of the issue with Pharmac and the plight of many Kiwis and even educated people about CF. It did make it a lot easier to talk to people when they had seen us on TV, in the newspaper, or heard us on the radio.
To Malcolm and Fiona at Patient Voice, thank you for fighting the good, true and just fight. Even though we’ve only met you the once last Wednesday you already feel like old friends. We look forward to continuing the battle with you and also look forward to the day when we no longer have to fight because the powers that be have heard reason.
To our three girls, we’re so proud of you. Ella, it’s not many people who get the experience you have had at the Youth Winter Olympics but then it’s not many people that put in all that work to get there. Rachael and Nicola, we’re so pleased with how you looked after each other and coped while we were away. You really enabled the trip for us and all the 250,000+ kiwis were battling for. Your halos definitely deserve to be shining.
Last, and most, I have to thank Millie. It takes a special person when their partner suggests it would be a good idea to cycle a coffin 1200Kms to not turn round and say “Ya what, now?” To, in fact, turn around and say “let’s do this” takes an extra special person and you are my extra special person. It’s been such a treat to spend so much special time with you. In the last 20 days we’ve had more ‘dates’ than we’ve had since Rachael was born - literally. I know the trip was far more daunting for you than for me and you had to have complete faith in my driving abilities with no steering, gears or brakes of your own, but despite that terrible first day, together we did it! You have my deepest love and respect.