Monday, September 11, 2023

What the heck is TNBC???

I am currently at the half way mark of treatment having been diagnosed with TNBC at the end of March.  It's a relatively rare form of breast cancer, which weirdly mainly affects young women of Maori or Asian descent, with just 300 odd cases diagnosed each year in NZ. 

I had what I thought was a pulled muscle from over zealous gardening,  and had gone to the doctor with a couple of other minor niggles relating to women of a certain age ;)  when she mentioned I was due for a mammogram so should add that to my wellness to do list.

It was a massive shock to discover the pulled muscle was in fact a tumor...not least because I found out my role at work was being disestablished as part of a restructure the same week...and in the same few days my dog was diagnosed with heart failure, and I was booked to have a basal cell carcinoma removed following a brush with melanoma a few years back. It was quite a week!

Thanks to having medical insurance I was able to see a surgeon within 48 hours of diagnosis and had a lumpectomy just 3 days after that. What was originally thought to be a garden variety tumour turned out to be triple negative so I then moved to chemo. My mind and body were in shock for sure, and it has been a very hard road with me getting every side effect possible and a secondary infection that landed me in hospital early on.

I'm now 11 rounds of chemo in with 5 to go and the 15 radiotherapy sessions still ahead.  I won't lie, it's been a freaking arduous journey and still feels like I have a mountain to climb ahead of me.  Upon diagnosis, my life literally ground to a halt overnight, as I withdrew from all the things I loved doing to focus on treatment and recovery (and minimise my risk of other infections, including Covid).  

I've had amazing support from my friends ( code named The Boob Tribe) as well as my family and incredible resilience shown by my kids.  For them, this has become normal life as we know it.  Right from the start I took the approach that I would follow the advice of the experts, and not do too much research - and I'm glad for that.  Whilst some days this crazy life still feels like it belongs to someone else (I'm reminded it doesn't, when I catch sight of my hairless head in the mirror), this has given me a measure of control that getting stuck into reading every book and attending every support group meeting might not have done.  I literally start each day with 'what can I achieve today', and in fact at times, 'achieve in the next hour, or the next ten minutes'. 
 
There's been a lot of hard times. I have struggled with the toll this has taken on my appearance and stamina. The damage to my 'offal' has been awful....suffice to say few parts of the inner workings are operating as they should be.  I've gained a lot of weight thanks to treatment, but don't have the energy to increase exercise.  I'm bald, covered in a rash, and have a constantly dripping nose (currently blood noses, good times).    Right now, the fatigue, coupled with insomnia (both side effects of the chemo drugs, and the drugs I have to take for the side effects of the chemo) are particularly bad.  I feel seasick most of the time, and everything tastes weird.  

Some people in my life have disappeared...it's a tricky thing, to be confronted by a seriously ill person. I hope they'll be back one day, but if not, I understand.  Others whom I barely knew have become close friends and confidants albeit at a distance as I find myself really unenthusiastic about having visitors or socialising.   I am a pretty positive person but this has seriously challenged that mindset. Some days are good...especially the ones when I am on steroids, and others are just feckin' awful.  I find myself becoming more reclusive....I'm sick of my own story, sick of  the 'head on the side, how ARE you' comments, sick of the surprised 'oh you're STILL doing that' remarks from people I haven't seen in a while.  

I've had to stop doing a lot of the things I love ...volunteering,  dancing, numerous cafe visits!...whilst neutrapenic, but there is light, I hope, at the end of the tunnel. I have a long road of recovery ahead but firmly believe that mental resilience and ability to "let it be" has helped enormously.    And then there will be bursts of lightness...a walk with a friend in the sun (ooops not meant to be in the sun when you're having chemo), a quick trip to the shops, a visit from someone I've not seen in a while.  A day on the couch with Netflix might be not so fun any more, but the ability to use that as a reason to employ a cleaner kind of is....

I started a new role with the same organisation in the middle of all it all, very glad to have been successful in quite a competitive recruitment process and with an incredibly accommodating people leader who has been happy for me to work from home,,and take recovery time as I need to. 

Mindset really is everything.  I look forward to the day this will be a distant memory.  Fingers crossed. 



Thursday, April 27, 2023

TRON - the Rail Opportunity Network

For posterity, I'm making some notes about how it all began, and attached the original submission I made to last years Select Committee hearing.  More can be found at www.makingrailwork.com and on Facebook (search Making Rail Work)



1.       The start of the dream 2013 – 2016

 

Sitting in traffic in June 2013 on the Southern Motorway, trying to get to Queens St in peak traffic. ‘’This is a nightmare’’, I say to my co-passenger.  ‘’If only there was a train!’’.  We discuss the pros and cons, remembering when back in the late ‘90s there had been a train from Frankton to (we think) the Strand, that for some reason had been cancelled.  Facebook is the place to be, so as we sit in gridlock, I create a Facebook group, imaginatively called ‘We want a commuter train between Hamilton and Auckland’.

I invite all my friends to ‘like’ the page and start engaging with various other groups such as the Campaign for Better Transport.   I attend Regional Council meetings, contribute to council plans by way of submission, and occasionally ring talkback radio.

Three years go by, and I am in a queue at the Pumpkin Festival at the Hamilton Gardens.  Then Labour MP and spokesperson for public transport, Sue Maroney is ahead of me.  We get chatting, as you do, and discover this common interest.  From there, we agree to meet, and following a couple more meetings decide to see if we can form a more formal group to get some solid research and higher profile.  Fortunately, the Railway Union and the University of Waikato agree with us, and we get funding to complete a feasibility study. 

With the numbers in hand, we are finally ready to go public.  It’s great timing, with an election looming and a mayor who at that time was not at all keen on public transport.  We need a better name and ‘The Rail Opportunity Network’ – or TRON for short, is born, and officially launched at a public meeting held at the Frankton Junction Hotel in April 2016.  Attended by politicians, lobbyists, the press, and plenty of others interested in supporting rail between Hamilton and Auckland, we are now really on our way.

 

2.       2016 – 2020: Te Huia Train

With the announcement by then Transport Minister Phil Twyford that there will be a significant commitment and investment in rail, TRON is able to make great inroads.  The steering group dissolves as most people become busy with other projects, but I (Susan) keep it going, using social media and regular spots on radio (and a couple on TV) to keep our story alive. Further feasibility studies are commissioned, there’s more public consultation, and media interest remains strong.  Following further commitment from the Waikato Regional Council, Hamilton City Council, and the Waikato District Council, there is finally a real proposition ahead, and in due course the rolling stock is bought and sent to the Wellington depot for refurbishment.

TRON continues to make it clear that we see the line between Hamilton and Auckland as just the beginning of a wider commitment to rail.  We change our focus from being just about a commuter option to really telling a story of connecting people and places, not only on this line, but across the golden triangle.  One thing at a time though, and despite some delays, the train is ready to be launched, and is given the name Te Huia

The train leaves the new station near ‘Te Awa the Base’ with Prime Minister Jacinda Ardern and others on board.  We are on the 6 o’clock news, and there is much excitement about what the future of rail might look like. 

The future is looking bright – and then Covid strikes.  The timing could not have been worse, with the train having to be effectively mothballed.  The press has a field-day, with naysayers citing the costs of the train as a waste of taxpayer money.  No one considers that it’s not just rail, but we become a visible punching bag for government spending.

This is made worse by issues with the tracks, causing delays and cancellations.  TRON is still advocating for rail as an alternative to cars, and as the conversations around global warming become louder, and the cost of petrol spirals out of control, we see even more possibilities.

 3.       2021 – back on track

I receive a phone call from someone in Tauranga who has heard about TRON’s work and is looking at developing a proposal for a ‘golden triangle’ train service.  It’s great timing, and a group gathers via Zoom to discuss how we could build on the work already undertaken by TRON to grow the vision and bring more people ‘on the journey’ with us.

We have big goals and are fortunate to be a team of diverse people with passion for public transport and a wide range of skills.  More research is needed, we have a goal to get in front of as many politicians as possible, and we need to keep media interest high.   I’m keen to be involved – the TRON project is now mainly just me and a large-ish social media following, supported by one or two people in the media who are supporting our work.

We need a new name though – TRON is not right any more, and one of the group comes up with the brilliant ‘Making Rail Work’.  Further funding was secured via Trust Waikato and Bay Trust, and we were able to set to work on a significant project that culminated in a Select Committee hearing, with all parties and other key stakeholders in attendance, and a record number of submission. The issue of rail was still well and truly alive and had resonated with an enormous number of New Zealanders.

 

4.   2022 – Connecting Communities – public submission and Select Committee hearing

Right from the start of this project in 2013, I have wanted to see people travel by train, explore local culture, and engage with local people. To see connection, responsible and safe commutes for workers, students, and tourists, and find ways to revitalise small towns along the train route.

Having spent my time with TRON focussed mainly on community engagement, I elected to look at this as part of our submission to the government.  Some of the committee asked hard questions, but we were prepared and ready, with facts to back up our claims.  We also acknowledged that there are groups largely invisible in the conversation about passenger rail, including the small towns along the rail lines where public transport is almost non-existent, Gen X, Y, and Z population who is motivated to use sustainable, climate-responsive, and accessible public transport, and iwi, whose very land and people are directly affected.

Connecting people is at the heart of our purpose and is the very essence of community rail. With a network that is at the same time national and local, rail can have a wider social impact. We identify the need to look beyond the people and groups who have traditionally been involved with the railways and be open to everyone; involving a wider mix of people it can play a valuable role in building and supporting integrated communities.

Creating submissions and watching the live submissions on the Select Committee hearings were exciting.  Making Rail Work was determined to be well prepared (we were!), and well received by the committee (we absolutely were).  We were fortunate to get time to speak individually, and I was thrilled to be able to outline the background to MRW, and where we saw the potential for rail to positively impact isolated communities along the proposed rail corridor, as well as tell the story as the importance of rail for the economy and wellbeing of ‘the golden triangle’

Some of the committee asked hard questions, but we were prepared and ready, with facts to back up our claims.  We also acknowledged that that there are groups largely invisible in the conversation about passenger rail, including the small towns along the rail lines where public transport is almost non-existent, the gen X, Y and Z population who is motivated to use sustainable, climate-responsive, and accessible public transport, and iwi, whose very land and people are directly affected.

We want to encourage individuals, communities, voluntary organisations and businesses to take responsibility for the issues that matter to them and their communities. The voice of community is a crucial part of this success, enabled by drawing on local insight to understand and function as an advocate for local people’s views and needs and inform decisions about services and infrastructure to improve local transport provision.


https://www.stuff.co.nz/national/92630903/missing-link-on-passenger-rail-service-wades-in-with-strategic-plan

https://www.rnz.co.nz/news/national/397378/waikato-wide-train-service-campaigners-new-dream-after-hamilton-auckland-rail-route

https://www.stuff.co.nz/national/115263837/what-happens-in-auckland-will-impact-hamilton-commuter-rail-service


Last week my daughter started work on Te Huia - the perfect ending to this project for me. 

NB I wrote a 3000 word contribution to the next stage of planning for MRW but as it is unlikely to be included I am not attaching this here.  I do hope though that one day my kids will read this, and realise what a big project it was. 



Tuesday, February 15, 2022

I want the truth (how I came to handle the truth) Pt 2

Following on from the post yesterday, which was shared on social media, I was asked if I could provide further background and pointers on how people can support those down the rabbit hole, and hopefully encourage them back out.


This is my response:

The change for me came through personal life experiences. As I started traveling and thus my world view grew, as I raised kids, as I saw shitty stuff happening in the world and could no longer justify it with blind faith, I became more open to other views (or at least, became more open about my inner views...).

I now find any dogmatic view very uncomfortable. In terms of pointers, I think those responses like 'that's interesting, I'll consider it' and so forth, give people with strong views a sense of validation, but you are also keeping boundaries around what you will and won't' take on. Moving from a strong view comes with grief as another poster mentioned. In the case of deconversion from Christianity, (there's more on this elsewhere on my blog - search 'Christianity') I have heard this described as more painful than a divorce (from people who went through both). Understanding that a belief system, be it a religion, a mindset, or subscribing to a particular conspiracy theory comes with its own culture, language, and community will help. 

The person who is embedded in these things is being challenged on every level and that is scary. If it's faith-based, then showing science won't make a difference - it's more likely to push the person further towards their belief, regardless of it's through fear or actual believing. As in any cult-like behaviour (and yes I am aware that there is a very wide spectrum, I'm just generalising for simplicity), a gentle, prolonged, and non-judgemental approach is the only way to move people from one belief to another. And they need to have a personal interest or impact to want change, such as (in the case of Covid say) getting sick and experiencing 'the other side'. 

Hope this helps. 



Further reading:


https://www.rnz.co.nz/summer-2020/unprecedented/we-were-there/when-a-relative-falls-down-a-rabbit-hole/

https://ericgeiger.com/2021/05/how-do-i-pull-my-friend-out-of-the-rabbit-hole-of-conspiracies/

http://voicesofdeconversion.com/

Monday, February 14, 2022

I want the truth! (You can't handle the truth)

 Many years ago...more than 35...I was deeply involved in an evangelical church.  I desperately wanted to be part of the community. I wanted to feel what I saw other people feeling on Sunday mornings. I wanted to be a living example of the things that were being preached.

This church, like many others, taught that there was a special prayer to be said, that would ensure entrance to heaven on death. It required, essentially a kind of personal sovereignty (is that expression sounding familiar!?!) that led to sacrifice and quite possibly persecution for holding on to certain beliefs. We were beseeched to go tell it on the mountain and pray without ceasing.  It was particularly important to ensure everyone we knew - especially family - heard this message, and had the opportunity to accept it for themselves (there's that personal sovereignty thing again).  After all, if they didn't, they would be in eternal torment and it would be MY FAULT if I hadn't told them the Truth.  We were reminded that we were a minority, but that this was normal...most people wouldn't listen, and part of being the bearer of this news would include feeling separate, perhaps even mocked or ridiculed. In fact, that was probably part of the deal.  But continue we must, led by faith (because well, you know, faith). 

I didn't even really know if I believed all I heard - there were certain things that I secretly didn't agree with - but boy oh boy, I was not going to take the risk.  And so, at the peak of my quest for devoutness, I was telling ...preaching....to everyone I could.  I was petrified of eternal damnation for my family, but also smug in the knowledge that at least I was right, and would be saved from doom.

There were things I didn't understand, but I turned to the voice of others with more charisma and those with spiritual knowledge. I closed my friend circle, choosing only to socialize with people of similar mindset (it was safer that way anyway, lest I be tainted by another view). I immersed myself in Christian literature, studiously avoiding anything that might challenge what I was hearing and reading.  The fact that the majority of what I read didn't stand up to scientific scrutiny, and was not accepted by the general population was irrelevant.   I had answers for those people anyway...because... faith. 

There was a bit of a problem as time went by. I discovered that there was an outside chance that whilst what I was following was A truth, it might not be THE truth.  There were just as many fallible people within the group as outside - charlatans and liars, the gullible and lonely, and many many genuinely kind people who truly believed what we were being taught.

What I'm seeing now, as the pandemic continues to rage, is a similar thing in the right-wing /anti-vax/pro-Freedom movements.  By and large, these are good people - they are standing up for what they believe in. They are desperate to ensure that their message gets to as many as possible.  They are looking for leaders, and signs and wonders, to support their beliefs.  For some, the lure of being a martyr for the cause is attractive. Social media has given many a platform that my teen days of street preaching could only have dreamt of.  

I see so many parallels.  It's given me a fresh insight and deeper sympathy for those who have ended up down the current rabbit holes that are overflowing with conspiracy theories and self-righteous anger. 

Noone wants to be told they're wrong. No one really wants to admit they might have got it wrong.  And generally no one wants to be told that the truth they have believed in for a very long time, might not be so true after all.  

One can only hope that for many, there will be, if not a revelation, a slow awakening.  There can be many truths.  Choose yours wisely. 








The Annual Family Poem 2021


This sure has been a heck of a year!
How can Christmas already be here!
Even so it's probably time

(Traditionally I'd be making this rhyme)


Read on for the highlights of our family's year
Omitting the Covid's, and my fast greying hair
Dancing got squeezed into weeks with no lockdowns
- including my sister's wedding

 (Hurrah! A magical day)

Did a trip on the first Te Huia train - lobbied 8 years, shed a few tears
Even got a few days away, in Wellington (one of my favourite towns)
Never so much time spent on Zoom and the phone!


Susan changed jobs to an English Language school -
a change from the orchestra which is pretty cool
Couldn't quite give up music though - wrote another children's show
Had to do it 'online' though - musicians a yes, but the audience no!


Reinstatement of The Village Messenger - so happy to start it up again
I do so love the power of my pen
Son Joseph won the year 11 Hospitality award, even cooks dinner for me
- if he's bored (hurrah for Hello Fresh!)


Time for change for Niamh too - moving out of home and a new career doing
Making cocktails and pouring pints for Good George Brewing
At home learning and working most enjoyed by the pets (woof woof!),
and we loved no early morning alarm going off


Susan joined Waikato Refugee Forum as Advisor to the Board
- a privilege to work with such extraordinary people
Please stay safe this summer - mask at the ready!
Our summer will be spent at the beach and Lake Taupo (just for me!)


Even if you're just passing through, do drop in and visit for coffee...or cake

Merry Christmas from us! Enjoy your break!

Wednesday, December 23, 2020

The annual family poem 2020 - Fairytale of Pirongia

 

FAIRYTALE OF PIRONGIA

The Annual Trodden Christmas Poem 2020

 

It was Lockdown Eve,

Down the Five Stags

A young man said to me, won't see another one

And then he played a song

‘You Can’t Touch This’ I think

I turned my hands away, And put them in the sink

 

Got on the bike again, Didn’t care about the rain

I've got a feeling We needed to get out the house

So happy Christmas, I’m glad we made it

I can see a better time, When all our dreams come true

 

We had masks in the parks, We had queues up wazoos

But the time went quite quickly with 1 pm news

When we first locked the doors at the end of the spring

We conquered the Covid and handwash was king

 

We got fat!, We got thinner

We had salad for dinner

When the lockdown was over, We didn’t want more

I went back to dancing, But Joseph quit Fencing

Niamh learned how to barber, And we shopped through the night

 

The orchestras kept going and They played their hearts out well

And the bells were ringing out For Christmas day

 

I’m the mum! He’s the kid! She’s the one chucking junk

Cleaning cupboards and drawers like tomorrow won’t come

You cook and I’ll clean, What? The dryer’s on again?

Then Christmas came fast The year’s done at last

 

The orchestras kept going and They played their hearts out well

And the bells were ringing out For Christmas day

 

The year was tough for us, Well it was for all of us

We kept our dreams alive, In hope of better times

We made a list of things, That turned out in the end

We’ll put it on the fridge, And be glad for them

 

The orchestras kept going and They played their hearts out well

And the bells were ringing out For Christmas day


Listen to the soundtrack so you can sing along:)