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E is for Expense

A cancer diagnosis as well as being utterly sh** usually comes with a hefty price tag in some form or another. I can assure you it is expensive to have cancer. Everyone has their different reasons for this, but I think for almost all it is costly in some way.

Income for many is affected by taking time off work; whether that is for an extended period of time due to being unable to work or time taken for the endless tests, scans, appointments that we have to endure.

Then there are the actual expenses to pay out; travel costs to get to and from those appointments for a start can be high, care costs if needed and then even the basics like good clean (preferably organic) food costs are sky high.

Finally, like me there are many paying for their actual treatment itself. Oh! the added insult…not only to find out that I have a deadly disease but also, I have to pay the equivalent of more than the average NZ salary per year to try and combat it…. this is something I never even contemplated.

Suddenly I am not just fighting to survive my mutant cells I am also a fighting to maintain an enjoyable, normal and solvent life.

Over the last (almost) 18 months, I have spent more time worrying about the cost of my medication than I have about the lumpy blighters in my heart trying to kill me. The need to pay a staggering $5,500.00 per prescription is overwhelming yet without these drugs I have no chance of holding off the growing tumours.

On any given day in NZ, the newspapers will have a story like mine where the medication needed to save or prolong a life will cost tens or hundreds of thousands of Dollars and there is no help. Give a Little, Just Giving etc are the saviours and sick people are reliant solely on the generosity of others. These stories should be rare, but they aren’t – there are so many people struggling to obtain medications or pay for them. Something is very wrong when this is becoming a common occurrence.

This raises some huge issues for those in need; crowd funding is often the only way people like me can raise that kind of money. Unless you have a significant income or assets then I honestly have no idea how else to do it!

Anyway, crowd funding means putting yourself out there and asking for help. It also means that you have to tell people what you are going through, which for some is the last thing they want to do. It also welcomes opinions, similar stories (good and bad), advice – this alone can be overwhelming for some.

We are incredibly grateful for the help we have received but we are also highly aware that every person who has donated and supported us have taken time out their day to do so and have sacrificed something in order to give us something from their income.

In acknowledging that suddenly a mental load appears; can we live normally? – go for dinners out sometimes, can we go on holiday, can we spend our income on anything other than drugs when others have given to us? In reality, yes – see “L” for “Living” but it is a fine balance and not an easy one.

It is also very very hard to ask for help and even harder to ask for money. It is embarrassing, humiliating at times and upsetting. It can be draining trying to find new ways to pay the next prescription. We have always worked hard and continue to do so to live our lives the way we want to and to have freedom to make choices; so, to now have ask others for help despite always trying so hard to achieve is difficult. We have created a trust so that all raised funds are paid to the trust and not us personally. This keeps us a little distanced from the financial side and allows requests to come from an entity bigger than myself and also prevents any perception that we are spending money that was donated…. our wages fund our downtime 😊. I also hope that in time Melanoma Heart becomes something bigger than me and we can help others so that another family doesn’t have to face this alone.

However, situations like this really do show how wonderful humans can be and how important communities are. We have been surrounded by communities of amazing people both in NZ and overseas. I cannot begin to list out all of those that have helped, supported, donated and joined our fight. Friends, family and strangers. People have reached out and given in so many ways, financially and with time.

Neighbours and friends have cooked for us, looked after Ruby, included us in events we couldn’t afford, paid for accommodation for us to go away, given me fitness sessions for free, arranged parties, donated prizes, written beautiful words to raise awareness…..the list is endless and I want to acknowledge more about this in “O” for “others” because without them we would not be a family for very long and Ruby would be growing up without me. So, to you all THANK YOU doesn’t even really start to express our gratitude.

I could write a whole post about PHARMAC and Government funding, but it is mind numbingly boring and there is a lot already written about the facts and figures but for a quick recap of things: -

  • PHARMAC decides what medicines are funded; how they do so is a mystery.

  • The Government sets PHARMAC’s budget.

  • Both blame the other for the shortcomings in drug funding.

  • NZ spends 1/3rd on drug funding that Australia does (pro-rated) – Australians receive 2/3rds more funding towards their medications.

  • PHARMAC takes on average nearly 8 years apparently to decided to fund a medication (mine was first assessed in 2015….so now its 2023….???? I won’t hold my breath).

  • There doesn’t appear to be much political will to change things meanwhile thousands like me suffer.

  • I pay 15% GST on every prescription……. I really think medications should be exempt especially when they aren’t funded!

So, in summary, things aren’t going to change quickly and if you are caught outside of the publicly funded system there is no help. If, therefore, anyone wants my advice: GET SOME INSURANCE….look into at least income protection and/or (in NZ) non-Pharmac funded medication insurance….it might seem expensive now or an unnecessary expense but believe me if you never need it, it is worth every cent….! Not a professional opinion, just something I wish I had known earlier and something that would have made the last couple of years considerably easier. We can’t reduce our work hours or get any mortgage/refinance options and I am definitely uninsurable now so it's too late!

We are told that my cancer will not go and that these drugs will buy time, but they are not a cure. There is also no alternative for me at the moment. We have, therefore, limited choices.

We could move – the cost of doings so is crazy. Ever moved house? Then imagine moving countries. It cost me $30,000 to move here in 2015 alone without many belongings or any dependents. Visas, flights, shipping……. I don’t need to go on. Plus, the mental side of applying for jobs, schools etc is totally overwhelming and remember I am fighting cancer. That alone is not easy.

It is easy to forget in the middle of all this funding crisis that there is just a girl, standing in the world, trying to stay alive and enjoy life.


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