It was one of those “People you may know” suggestions on Facebook that re-connected Vanessa Lee with her intermediate classmate Luke Ashby in 2021, and although their time together was cut short with Luke’s death at only 45 years old, at Nelson Tasman Hospice in November 2023, Vanessa chooses to live in a space of appreciation for it all.

With the support of Luke’s family, Vanessa shared her story with us.

Right from the beginning there were forces greater than us that ensured our paths crossed at precisely this time in our lifetime.

We came into each other’s lives when we least expected it but truly when we were both ready to most benefit from each other’s presence. Luke opened up a whole new way of looking at things for me and helped me find the magic in this amazing trip called life.

Even though we are quite different we had this ability to say exactly the right thing or take the right action at difficult times that ensured we both felt safe, seen and heard from a place of non-judgement. And through this we were able to bring growth, peace, love, joy and understanding into each other’s lives.

It was not always rainbows and unicorns but even when we felt the least connected there was this deep understanding that the other person was there to shine their light on all the unhealed parts of ourselves that we could either ignore or heal together.

Luke loved the West Coast, he had lived there when we were in intermediate, which is where we originally met, and said that he had always felt drawn back to the place. He had a variety of jobs throughout the years, spending much of his 20’s cheffing, he had a time as a beekeeper and then he retrained in his 30’s as an arborist and worked for Nelmac for years until he moved to the Coast. On the Coast gold became his focus and he had just bought a gold claim not long before he got sick. Most of his life he spent in Nelson, his son is now 20 years old and studying at Otago University.

Luke had made up his mind to follow his heart back to the West Coast just before we reconnected. Luke loved living on the farm. From quiet times in the bush to many hours hunting for gold he truly was in his happy place. Luke rescued a paradise duck duckling and he grew into what we liked to call our guard duck. The laughs Luke and “Dockles” gave us all are memories my family will treasure forever. During the many hours he spent in the creek he managed to find a considerable sum of gold and we had this made into rings here in Nelson by Glen James. These are a beautiful reminder of our love and commitment to each other. Our plan was to get married, but time was not on our side.

Luke lived with us, my son Jonty and I, on the farm for about a year before he was diagnosed with bowel cancer in May 2023, but he had already had big drops in energy levels that we had put down to other things before then. It was only 6 months from that diagnosis until we lost him.

Following his diagnosis, due to the weather on the Coast being less than desirable, Luke relocated back up to Nelson and moved into his mum, Ellie’s, place. Luke had decided not to have any treatment, no chemo or radiation. He said “Babe, I’m just going to live my best life until I’m gone” and so this is what we set out to do.

Babe, I’m just going to live my best life until I’m gone. – Luke

These six months were a bit “all over the place” travelling between the Coast and Nelson and still trying to run our family dairy farm.

With the help of the hospice team Luke was able to tick a few things off his bucket list. One major event was when he went heli-skiing at Mt Cook with a group of friends which was a truly amazing experience for him. Knowing you only have limited time left, conversations get real and being able to reconnect with people and find out the impact he had on people’s lives, was so very healing for him. When Luke got pneumonia, he ended up in the Nelson Tasman Hospice’s specialist palliative care unit (SPCU) in Stoke for the first time.

He was a bit apprehensive about going into hospice because of past experiences with the health sector that were negative, but right from the moment we came through the doors, we knew it would be alright. He ended up in the unit three times, with the longest being for six weeks at the end, before dying there on 6 November 2023.

He felt so much calmer and relaxed being in the unit at hospice. He liked to have his own space and he felt that the team at hospice listened to him, and he didn’t feel judged. Everyone was really kind and understanding and he felt seen and heard.

Because he had opted out of any treatment, it was a case of managing the illness and I think hospice were really good at that. Working with Luke, and understanding what his needs were, and what his goals were, and managing the medication to enable him to still be able to achieve those things.

His illness progressed quite fast, we realised he had probably been sick for quite a while before his diagnosis. And although he wanted to get back to the coast, with it being so isolated, it was decided the best thing would be to stay in Nelson. Juliet (Dr Juliet Fleming, Senior Medical Officer at Nelson Tasman Hospice) was great with Luke. He felt that if he didn’t try hard to leave the hospice, he was kind of “giving in” to his illness but she said to him that it wasn’t giving up, it was just about realising the limitations of right now and said that as we were going about our day at hospice to think about “would this work at home”? The reality of both options, the farm, or Luke’s mum’s place, and really thinking it through made him feel at peace with the decision to stay in the unit.

The level of care we received at hospice was what surprised me. Everybody that works there makes a real effort to get to know you and talk. You feel like they are part of your family. Everyone is kind and caring, thoughtful, and helpful. You know that they have done this all before and they are with you every step of the way, but they also make you feel like you are the only ones going through this and it was a very special time.

We always knew what was going on. Luke felt in control over decision making, which is really important for independent people, of which Luke was definitely one. Luke always felt like he had a say, and he wasn’t being dictated to. Luke was very well aware of what was going on with his body. Everyone was really good at listening to what was actually important to us. For example, Luke didn’t want to use a funeral service and the hospice was really good at helping us organise all of those sorts of things.

We also both appreciated the level of humor from the doctors and nurses and everyone there, it’s quite nice. It just makes everything a bit lighter. It doesn’t have to be a sad place.

I stayed day and night for the last three weeks. We made the decision together that he needed me there, we both needed that. This was what was important now and everything else could just wait. I had amazing support from my family for Jonty and from Luke’s family too.

Being able to be in the unit and stay with him was so nice for us both. Sometimes towards the end there are only rare moments for connection and sometimes those moments will be at 2:00am or 4:00am. You can only experience these magic moments if you are there and have that time.

One of the hardest parts of our experience was when Luke died, and we walked out with him. This final journey from the hospice with all the staff lining the corridor to watch us go was a truly beautiful experience that I will treasure forever. I cannot thank the hospice staff enough. They went above and beyond at every moment to ensure that both Luke and my needs were being meet. So many tears of sadness but also appreciation. All the Nelson Tasman Hospice staff are truly magic people.

The whole journey together has shown me we’re here for such a short period of time so live life, do all the things you want to, tell people you love them and follow your joy. This time with Luke has shown me how important this all is, and I will be forever grateful for this time with him. A beautiful man taken too soon.

Vanessa chose to share her story to show what someone’s journey can look like on hospice services and to show how vital the services are for the region. Luke’s long stays in the SPCU are not usual, with 80% of our care happening out in the community in the places people call home. The average length of stay in our SPCU is only 12 days, with 126 being the average number of days people spend on our service overall.

Donate for families like Luke’s here: Help us be there every step of the way – Autumn Appeal 2024 (raiselysite.com)