L is for Living

“Live life to it’s fullest’, “Live, Love, Laugh”, “Be present in the moment”….We see these quotes and clichés everywhere. Daily Instagram, Facebook etc are full of inspiring quotes and we all try to live by them or we at least “like” them or share them and think that it resonates with us. But, how many truly live in the moment and grab every minute we have to extract as much out of life as we can. How many think, “I’ll do that tomorrow” or “when I have more money I’ll do that”, “I’ll start that next week” etc etc

I have, for as long as I remember, worried about time running out. I was convinced that I wouldn’t get to do all things I wanted to do and I couldn’t imagine being old. Consequently, I have rarely put things off and I have dived in head first to just about everything I have put my mind to.

So, it is not really surprising to those that know me that this has intensified over the last 10 years since my initial melanoma diagnosis and I now fully push each day to its maximum. “Manic”, “crazy”, “insane”, “never stops” are the recent descriptions of me that I have heard just this week from my friend and my husband as I roller skated through our kitchen – why?....why not? I want to roller-skate along the beach front as part of my bucket list, so I got skates…obviously!

I would like to live without regret and I pretty much do – I will give most things a go, some work and some don’t but at least I’ve tried. In the theme of clichés- I would rather regret something that I have tried that to regret not trying at all. Hence, living in NZ for a start!

My list of “to dos” or “bucket list” is huge and goes from one extreme to the other in terms of practicality and cost! Clearly none of us can do everything we want to do without an endless income and countless days off. However, there are so many ways to live life with whatever time and budget are available.

My cancer has brought my mortality to the forefront of my mind. I remember when I was told the melanoma had returned and all I could think was “but I just got happy” and I truly was – Ryan and Ruby completed me and the area we live is me to a “T”. I had achieved so much to reach that pinnacle of my happiness. None of it was material – my happiness was my tripod family in our beautiful home, living life.

What is happening to me is sad and my life is likely to be shorter than I would like but that happiness remains. I am happy still and I’m living life well. Someone messaged me once and was telling me about things going well, but they ended the text with “I’m sorry I’m going on about how good things are when life is so shit for you”. My response – my life isn’t shit. Yes, the cancer is shit but my life is good, I’m happy.

For info, we are not very well off and we are trying to fund hideously expensive drugs. Any savings I had got eaten into shortly after moving to NZ (cost of living here was nuts before the cost of living crisis!). Even having now requalified and working as a lawyer, my salary doesn’t stretch to the costs we need to cover. We are reliant on fundraising for medication, so as I mentioned before there is a fine line between living life as we’d like to and doing things that cost money when others are donating. It is a tightrope to live life, create memories for Ruby and be respectful.

My medication won’t cure my cancer or save my life but the drugs are working and buying me time so I am fiercely passionate about using that time I have to make memories to last Ruby a lifetime so that if she does grow up without me she will have these moments to look back on. I also want to do as much as I can in whatever time I have.

One of my friends said she was so excited about having a girl as she could imagine all the mother/daughter things they would do as she got older. As she was telling me, she looked at me and I am guessing I was looking a bit pained so she hugged me- in that moment she understood totally that one of my biggest heartaches is that I potentially won’t have too many of those experiences. I can’t tell you how much I have cried over that! So now, a year later, my way to deal with missing out is to make the most of the ones I do get to have.

We have been lucky since my diagnosis, we have got to go to Europe and have had some wonderful trips around NZ. These trips are not normal everyday experiences and came about due to unusual circumstances; Europe was largely planned and booked pre-Covid (and pre-cancer) and one trip was a wedding present, another was a gift etc etc but we do manage to do a lot in our normal lives. So how do we live life while managing expensive drugs, juggling health issues, appointments, work and routine of the day to day existence? How do we approach fundraising v spending our own salaries to enjoy life?

Simply – by making the most of what we have, a lot of planning and careful budgets!

A lot of the things we love as a family are on our doorstep – the beach, the outdoors, the water, the mountains are all within a short distance. I’ve also found things that I love to do to give me experiences and enjoyment that are within my community; sailing, exercise, pilates, yoga, tap dancing, pottery. Socialising with friends in our home or theirs fills a huge part of our time and Ruby gets to be with us. There are very few things we do that don’t include all of us.

I’ve even turned our evening dinners into a hobby – I love spending time looking at recipes for ideas that provide us with good, healthy, balanced and organic meals that fit into our week. I plan our weekly “menu”, shop specifically for that plan using online ordering from organic veg boxes, the local butcher and the supermarket so that I don’t start buying stuff I don’t need because it looks good on the shelf! It saves so much….even given NZ food prices!

Holidays are planned months in advance and a weekly budget set to save for it. I am a huge fan of Booking.com (not an ad!) due to the cancellation policy….I can book trips and work towards saving for them but if we don’t manage to have enough set aside then we can cancel without losing anything. We also always book places where we can cook so that we aren’t spending anymore on food than we would at home. We did the same when we went overseas last year; it’s even more fun to be able to shop like a local and come up with meals that add authenticity to the trip. I enjoy finding things to make on limited equipment and ingredients. A camp ground shared kitchen is always a lot of fun too for a cheap break away.

Everything is fun when it is approached in the right way and with the right attitude.

I think one thing I’ve learned since all this began is that reaction and mental approach is everything.

The small things can bring the most joy; standing on the beach at sunrise with Ryan listening to Ruby laugh and chatter away and feeling the sea breeze on my face brings me more joy and happiness than I can ever explain. Those are the moments that I truly feel I am living. I have really learned to see the positive in any situation….it isn’t easy and trust me there are bad days when I don’t want to get up but I do love life and it is truly is so precious…I don’t want to ever waste a second.

So, to Ruby when you read this - Whenever there is a down, there will always be an up….just look for it, dance in the rain, let the universe guide you…whatever daily affirmation or quote you read – live it.

Keep it legal but live a life without limits. I will be right there with you xx

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.

M is for Motherhood

I thought long and hard about what subject matter my first public post should be on. I have decided to follow the M.E.L.A.N.O.M.A pattern to give some order and plan but to start with “M”; should I start with “Melanoma and Me”, “Mortality”, “Mental Health”, “Menopause”….all very important subjects to talk about but instead I have chosen “Motherhood”. Why? It is probably the most important (and hardest) role I have ever had and it defines how I see my purpose. I also do not want melanoma to be the major factor in my life….Ruby is! Well, Ruby and Ryan are but Ryan will feature in later ramblings.

Ruby was not planned and in fact having a child was furthest from our minds at the time. I had only recently moved to NZ less than 18 months before I found out I was pregnant and Ryan and I weren’t even living together. However, the stars aligned and Ruby came along, defying the odds and perfectly slotting in before cancer and menopause took away any chance of further pregnancy (sorry Ruby I know you keep asking to be a big sister!).

I read once that cancer is tragic for anyone regardless of whether you have a young child or not. This is true; as a person suffering from this illness is always someone’s daughter, son, brother, sister, mother, father, husband or wife and are loved by someone. However, navigating cancer with a young child is difficult in a different way and tragic for what ,I feel, are slightly different reasons.

You do everything you can to protect your child from harm, pain and hurt yet this is something you cannot take away, you cannot hide and you cannot remove it from their world. I am trying to help her navigate the basic emotions that 5 year olds are normally exposed to – you know - hunger, tiredness, the peanut butter isn’t on the right side of the toast and the chip touched the tomato sauce when it wasn’t meant to….. 😊 all the whilst managing the biggest emotions known to humans myself, and worrying about how to explain it to her.

For me, the pain of knowing that Ruby could grow up without me is unbearable (I am not being negative - just being realistic and practical). I don’t just mean that I am upset that I will miss big events, like graduating school, her wedding, waving her off on her OE etc but not being there to guide and comfort her when she has a hard day at school or when her hormones take over and she wants to rage or cry (or both!) is heart breaking.

Knowing the pain she will go through, the grief of living without her mum kills me. I want to hold her, comfort her and tell her it will be ok and that I will be there with her always. Except, I won’t be and how I prepare her for that or cope with it myself, I have no idea!

Ryan and I have tried to bring Ruby up to be confident, happy, kind and anxiety free. Given what has been going on since before she was 3 that has not been easy. We are stressed, we are tired, we are frightened and anxious ourselves. So to not pass that on is tough. Very tough. But we have by and large achieved it (so far!). We are very proud of our strong willed, confident, happy girl who is so far not showing any signs of being anxious (but she is only 5!).

We try to shield her from what is happening whilst being honest with her. She asked me once “are you going to die mummy?”…..My stomach turned, my throat dried and tears sprang to my eyes but I managed to smile and say “we all die one day darling”. She looked at me, comforted and said “ok, that’s ok then” and then carried on talking about something else that was terribly important to her as a 4 year old (some toy I think!)! I was left a little shaken but also I was left with the realisation that if I stay calm, comforting and act as though it's no big deal she will react the same. Had I broken down, sobbed my eyes out and wailed that yes I would and that it would be awful, it would have frightened her.

In life, she will learn that shit happens but that reaction is EVERYTHING! How you react is the only thing you can control.

What is going on for us is shit but I am determined to be happy and to take a day at a time – this helps me cope and to live as if there is nothing wrong with me. This, I hope, I pass on to Ruby; I hope that beyond all else Ruby chooses happiness and positivity – it really does get you a long way.

My approach to Ruby has always been to see life through her eyes but also to think about how she will remember me. Do I want her to remember a stressed, busy, angry mum who is always hurrying her along and never giving her time to learn, play and experiment? – NO!

Don’t get me wrong, I am not a saint and she is a head strong 5 year old so the arguments are fierce at times but on the whole we try to make decisions and respond based on how she will remember me and her childhood. It adds a fresh perspective and although it seems obvious, it is amazing how often things I do automatically, I then change to make more child focused.

We try to give Ruby opportunities and experiences that will produce memories that will last a lifetime – this is hard when balancing paying for medications (see “E” for Expense!) especially when a lot of experiences cost $$$$ so we work full time and try to find a balance.

I really do hope she remembers the walks with me holding her hand, the kayaking when I sat behind her, the skiing when I waited at the bottom of the slope to catch her and the family time we have worked hard to provide for her. How I studied every night (after the bedtime battles- parents you know!) to requalify, to earn more, to provide more….but also to have more time.

Time with our families and our kids is precious. In those moments that my head wants to explode and I just want to have quiet time, I stare into space and remember that I want to hold her forever and cuddle her sleep for as many nights as I can. I want to see her smile and feel her small hand in mine for as many days, months or years as I can. I will remember when we need to get out of the door for school that instead of yelling “hurry up” I will bend down and take a moment to breathe and say “how can I help you?”.

There are times when I wish I could tell her that she may regret telling me she doesn’t like me ( because the ice-cream isn’t the right type and she’s tired) or that when she pushes my hugs away to be independent that one day she will dream of that hug, but I can’t. It isn’t fair – she needs to be a child and to have the innocence of childhood for as long as possible. I just remind her to be kind and to make the most of people when we are with them.

I grew up with an irrational fear of losing my Dad ( no idea why – he’s still here!) but I would (and still do) pace if I know he’s out at night – even when I am 12,000 miles away! I don’t want Ruby to carry this fear.

So at the end of this ramble, how is best to approach a parent’s illness and likely passing with a child without causing unnecessary or premature fears and anxiety – I have no idea!

I don’t have an answer and each child, family, situation is different. In time, the explanations we give Ruby will change as she does but I will always be honest and answer her questions.

Ruby, if you read this one day, my lasting advice to you will be:-

· Be kind ALWAYS

· Be humble

· Make your own way and don’t expect a free ride

· Follow your heart but use your head

· Know your own mind and trust your instincts

· No one else will fulfil you

· Growing up and getting old is a privilege

· I AM ALWAYS WITH YOU

· I AM FIGHTING SO BLOODY HARD

· I LOVE YOU!