As I said the other day...

I have started a new bullet journal from this week. That might not seem like a big deal, but when my haematologist told me in November last year that without any new drugs funded by Pharmac and made available through the public health system, I might have only a few weeks — 2–3 months at the most — left to live I looked at the journal I was using and thought, “I’m never going to finish that!” (I hate wasting things but I promise it wasn’t the first thought I had!) However, Pharmac did manage t...

Adding more fuel to the fire on the health funding issues, the government announced today the new Dunedin hospital is under threat of being built in stages or downgraded to the original design. The Government has signalled plans to downgrade the Dunedin Hospital redevelopment after an independent review has found it cannot be completed as scoped within the approved budget. Health Minister Shane Reti and Infrastructure Minister Chris Bishop - who are both in Dunedin to brief stakeholders - are ...

Public meeting on future of Kenepuru A&M service, 6 October Mungavin Hall The future of the after-hours Accident and Medical Clinic at Kenepuru Community Hospital has been under threat for more than a year. When I worked at Te Whatu Ora Capital and Coast last year, it was one of our bigger issues – how to ensure we could keep 24/7 services available for the whole Porirua community; and for people up the Kāpiti Coast who would use it. The alternative to the Kenepuru A&M clinic was peopl...

About 10 days ago I blogged on my new-found appreciation for the accessibility settings in various devices to help me read on screen when my eyesight is poor Blurred vision giving me a new appreciation of web accessibility. My particular problem is a side effect of large doses of the steroid Dexamethasone, which makes it look like I am wearing glasses with very smeared lenses that seriously need cleaning. Or there's a mist or smoke between me and whatever I'm looking at. The devices I use the ...

The PM Christopher Luxon got the reception he deserved when he spoke to the Local Government Association conference yesterday. He (or who ever wrote his speech) trotted out a tired prescription of 'reducing spending' and 'tackling waste' in local government, when the problem for many years is that local government has been underfunded for the services it needs to provide to communities. Local government has been complaining for a long time about how the system works against them and traps them ...

When you're face-to-face with serious illness or death, hope in an unattainable cure or treatment can be very emotionally damaging. I mentioned in a blog post a couple of weeks ago that I was being considered for a newly-funded drug to have another crack at my myeloma. It's now become available and I am into my first round of 21 days on pomalidomide (tradename Pomilide). I've only taken 2 capsules so far, which isn't long enough for any side effects to show up. I also have to have twice-weekl...

I've thought long and hard about posting this, and it will probably get me into trouble or come across as a ‘stop picking on us’ winge. Despite my reservations, here goes! This is a question I often ask myself when I find myself in the uber-liberal technology corners of the internet and social media. I spend my time on the Fediverse, so I don't get this from Facebook and Twitter/X (only because I rarely go there), but I assume it’s similar there. I understand the "all white people are racist" ...

Kate and I had a pleasant time at our sister-in-law’s birthday last night. I met M in the 1970s when she was 15 at Massey University. She was extremely smart and confident and had finished all her high school work, plus some uni papers at Victoria but couldn’t enrol there full time. Their loss, Massey’s gain. She got into a romantic relationship with my younger brother, which lasted long enough to move to Wellington and create a child and she has been part of our family ever since. Family is im...

It's been an interesting and slightly disturbing couple of days. What started as a hospital appointment for a CT scan to plan some radiation on what we thought was 'something' on my lower back that needed a zap turned into an overnight stay in hospital and the prospect of some very complicated treatment in the worst case scenario. A month or so ago, I developed a very sore spot in my spine near my pelvis, where I had a collapsed vertebra about four years ago. Same kind of pain and symptoms. The...

Early this week, Tuesday 20 July, my colleague, neighbour and friend Conor Twyford and I spoke to the New Zealand parliament Finance and Expenditure Select Committee in support of the Pukerua Bay Climate Action Group's submission on community-led climate adaptation submission. 2023 written submission (very comprehensive) From listening to other groups presenting before and after us, the select committee was getting similar messages about communities being an integral part of any changes. Our ...

I’ve had a couple of conversations in the past week with Wellington’s Blood and Cancer Centre about the new availability of pomalidomide. Read Pharmac announcement here I am eligible, given that I relapsed last year and turned out to be refractory for lenalidomide. We had considered trying to get it under compassionate access or self-funding it, but as I had already had a mini-stroke (TIA) last year, we weren’t sure it was worth the clotting and stroke risk. I’ve unexpectedly stabilised sinc...

My back’s been giving me gyp the past few weeks. I have three collapsed vertebrae; the L12, L8 and T4. The L12 is from a motorcycle accident in my twenties (1985) and can ache a bit from time to time, but it isn’t generally a problem. The T8 dates from 2013 and the L4 from 2020, and are caused by damage from the myeloma eating away at the bone. The L4 had the added bonus of crushing my sciatic nerve, giving me painful sciatica down my right leg for many months. After my second stem cell transpl...

When we moved into the new house we built three years ago, I was pretty keen on getting solar panels on the roof and using solar power as much as possible. I knew we could make good use of it, but the cost was pretty high for the potential benefits. Kate was reluctant, partly because of the impact of the panels on the appearance of the roofline. She was also concerned about the cost and wasn't sure they would pay for themselves. However, she recently had a good conversation with our sister-in-...

When my haematologist told me in November last year that, after 13 years of treatment, they had run out of publicly-funded options for treating my myeloma and I had, as a worst-case scenario, a few weeks left to live, it was a bit of a shock. "You could be dead by Christmas," were his exact words. And yet, here we are, officially in the second half of the new year, and I'm still hanging around—a bit slower and shorter than before—but above ground! They did have some older treatments to reuse, w...

The government's announcement of an extra $605 million for Pharmac to fund new cancer drugs over the next four years is terrific news for many of us with relapsed (i.e. come out of remission) or refractory (drug no longer works for us) cancers and no other options for publicly-funded drugs to treat our disease. There is still some uncertainty over which drugs will be funded, but we know it includes some of the drugs on the list of 13 National campaigned on in the election last year. The ones tha...

Reflections on my hometown It is just before Christmas 1988, and you are looking for a nest of your own. You look at townhouses in other parts of Porirua, none of which appeal, and the estate agent suggests you look further north. Somewhere your money will go a bit further to buy something you like more. "I know a house for sale in Pukerua Bay. You probably won't like it, but it has character." And it does: pinex walls, a sheepskin carpet in the lounge, and a water stain on the hall carpet fr...

About three years ago, I got interested in this cryptocurrency thing and thought I would run an experiment to see how it actually works. So I spent a bit of time hunting around to find an exchange that looked like it was reputable and settled on Binance. I also found that the smallest trade I could possibly make was NZ$85 to buy a crypto coin, which I thought was enough to toss away on something it if failed. I was also using the Brave browser, which paid me in a BAT token in the Upworthy exchan...

I had an interesting and intense experience last week when I attended a small church service at my mother-in-law's retirement village. One of the other residents had organised a service for people who were suffering grief or unhappiness in the lead in to Christmas. In a retirement village, with aged people, and many family members to worry about, especially those who are getting older, there are many opportunities for sadness and grief. My mother-in-law asked the organiser and minister whether ...

Well, we finally had that difficult conversation with the haematologist that went along the lines of, “I’m sorry, Iain, but we have run out of treatment options for you and the other drugs we have available in New Zealand aren’t going to stop your myeloma from developing any further. We haven’t been able to access any others through a clinical trial or compassionate access. Your bone marrow is chocker with abnormal plasma cells and you have a few weeks, maybe a couple of months, left to live. I’...

I’m very concerned with the changes to Cabinet that the government might be considering watering down the 3-waters proposal. This will be a serious mistake, given the country's poor record of investment in infrastructure. When I worked for Porirua City Council in 2006, they were concerned that the council was wasting money by spending it unnecessarily on asset maintenance. Their solution was to create a new asset manager position and give the person the job of analysing how effectively the cou...

Situation exposes fundamental economic issues The so-called 'GIB crisis' in New Zealand is significant because discussion of it ignores a fundamental economic issue; far from being simply a supply issue, it is actually a demand issue created by activity in a sector that is outstripping the economy's ability to support it. Anyone who works in the construction sector knows it has been going gang-busters since early in the COVID-19 pandemic. Two years ago, tradies were getting more work than they...

We need to ensure we continue to get it as citizens Thirty years ago I was a radio journalist. I wasn't great at it; competent, but no award winner. I enjoyed being a broadcaster more and the whole process of making radio. But the shortness of the news cycle, the brevity of radio stories and the limited opportunities to dig into issues and stories and explore them in depth were not very satisfying. I lasted five years before going into government PR as a Ministerial press secretary, which was n...

I often try to imagine what an alternative society might look like. A system-wide improvement on what we currently have: a pluralist, multi-cultural, post-colonial society; with a modern, resource-intensive capitalist economy and a welfare state; extensive export-focused pastoral agriculture; and a parliamentary democracy. Looking backwards doesn't really help as historical systems were the products of conditions we can't, and wouldn't want to, replicate. It's not hard to imagine something for ...

I was reading an article in The Atlantic a couple of days ago Community Input is Bad, Actually by Jerusalem Demsas. In it she argues that the process of community input to development projects is fundamentally flawed because: "It’s biased toward the status quo and privileges a small group of residents who for reasons that range from the sympathetic to the selfish don’t want to allow projects that are broadly useful." She describes how the American legal and planning system is full of points ...

Our council is one that government policy is forcing to allow more intensive development, which I generally think is a good thing. We already have two developments planned for the outskirts of the village, which will more than double the number of houses. This isn’t popular. We’ve organised a public workshop with the council to look at their structure plan for the area. However, a few residents have got pretty wound up on social media, and I’m worried locals will turn up with pitchforks and burn...

One of the big problems I often come back to is how to convert campaigns into individual action, and vice versa. Or, even more commonly, how do we make good intentions into actions that have a public benefit? This can be simple when looking at local things, like picking up litter or clearing weeds from a local native plant reserve. We can just go and do that, normally without too much effort. We can even invite some friends to join us. When we come to issues like climate change, the oceans fill...

We've just watched the documentary Burning on the Black Summer bushfires in Australia. It was a terrible reminder of what we saw in person and in the media in the summer of 2019–2020 — Black Summer. We were in Australia on holiday with friends in mid-November 2019 and spent some time in Leura in the Blue Mountains. On one of the days (12 November 2019), as we were walking between the villages of Katoomba and Leura, a fire started in the huge gully below the towns and spread up the hill towards ...

Well, I'm back onto the chemo for my myeloma, after almost 6½ years remission. I can't say I'm not a little disappointed, but I'm not surprised. As myeloma is basically incurable — the best you can hope for is a long remission — I always knew it would be back. I have been very lucky. I haven't had to take any drugs since October 2013. Some of my friends who went through treatment at the same time as me did not achieve the deep remission I had and have been on what is called 'maintenance therapy...

I wrote this shortly after the horrific murders of 51 innocent people and wounding of another 40 at the Al Noor Mosque and the Linwood Islamic Centre on 15 March 2019. I didn't publish it at the time, but I think it is still apposite. What do you think the public reaction would have been if, instead of a white supremacist murdering 51 Muslims on 15 March 2019, a radical Islamist had murdered 51 Christians in a church? The days after those murders were almost free of revenge talk from Muslims, ...

I've been pretty keen on the idea of social media ever since I first started dabbling in it. I admit that the first social media account I got was on Bebo, and that was to keep an eye on my kids when they were young teenagers so they didn't get into trouble. I didn't care if they got up to the usual young kids' silliness, and there was plenty of that, but I wanted to make sure they didn't get into any creepy situations (they didn't, fortunately). Facebook was very seductive initially and I was ...