Nic’s blog – What hospice support for young adults looks like

Nic is 23 and has been part of the Chestnut Tree House family since he was four, so there’s no better person to tell you about what life is like when you need hospice care. Despite having had three kidney transplants and severe osteoporosis in his bones, Nic is one of the most upbeat and funniest young men you will ever meet and a bit of a celebrity at the House.

In his blog, Nic talks about his condition and the difference Chestnut Tree House has made to his life over the years.

Nic’s blog:

I’ve been coming to Chestnut Tree House since I was four years old. That’s 19 years of my life which means I probably know the place better than anyone!

If you’ve met me, you’ll know I like to have a laugh and that I’m mad about football. If I’m not watching it, I’m playing FIFA on the PlayStation, listening to football songs, or kicking a ball down the corridor at Chestnut when I’m not supposed to! There’s no better team than Tottenham Hotspur, and Harry Kane is a legend.

Nic and Jack playing playstation at the House

The last time I stayed at Chestnut, I timed it so the World Cup was on. I got up a 7am every morning and watched all the matches in the group stage tournaments. It’s more fun than being at home because there’s always someone to have football banter with. One evening I asked to go to the pub with the nurses to watch England play USA. I can’t go out on my own because of my medical condition, so it was really fun. I like to have a beer, but only occasionally and I limit it to just one. I have to be really careful because I don’t want to damage my kidney, I’ve only got one.

You see, I’m just a normal 23-year-old guy, but in a different body.

Nic smiling into the camera at the House

I was born with kidney problems and I was put on dialysis whilst I waited for an emergency kidney transplant. They had to put the new one in upside down because my body was so small that it was tricky for them to put it in the right way. I don’t make things easy for people!

I’m now on my third kidney transplant. The first two didn’t work because I had a virus which attacked them, but this latest kidney seems to be the best. My life is much better now I don’t have to go to the hospital all the time or sit on a dialysis machine for hours.

I still have to take lots of medication and drink loads of water, but it means I can do more things and see more people. I’m really social which is why I always look forward to coming to Chestnut. The staff are so funny. They are always happy, even in the morning! And when they are doing night shifts I like to stay up late and keep them entertained. Sometimes one of the team will take me to get a Subway or a McDonald’s if I fancy one. That’s one of things that’s good about being a bit older, I get to do my own thing. I can even watch my favourite soaps and stay up late watching Waterloo Road. I love the drama!

Usually you can find me chilling in the computer room, but if it’s nice weather then I like to play football, quick cricket or rounders in the garden. I have to be careful when I’m doing activities because I have osteoporosis, which means the bones in my legs are weak and fragile so they can give way. I need to have surgery on them but it will take four or five years to do and surgeons will need to break most of the bones in my legs to straighten them.

One of the things that helps the pain in my legs is going in the hydrotherapy pool at Chestnut. The water is much warmer than other pools which is good for them. There’s a net and I play volleyball with Jack from the Activities Team. I like it when I’m with Jack because I can annoy him! He has to watch out as I hit the ball really hard. It’s funny when his hair gets wet.

Nic at Worthing Football ground

Jack also comes to see me at home for my community visits and we have a lads day together. We go out and do stuff that wouldn’t be possible on my own and it’s nice to give my Mum a break so she can do her own thing. Jack loves football too and he’s taken me to see Worthing play and we also saw a brilliant game at Crawley Town Football Club. Sometimes we’ll go to the driving range to play golf or to the cricket nets where I practise my batting against Jack. Other times if I’m feeling tired, we’ll just go out for pizza and hang out. When we meet up next, we’re going to make my favourite meal – mac and cheese!

I’m also part of the Chestnut Social group for teenagers and young adults. Because it’s not just me that needs support, there’s lots of others too. We’ve been to a board games lounge (I’m very competitive!) and one evening we went to a bar in Brighton for a night out. But my favourite was a comedy evening because it was so funny. I just sat there thinking, I’ve heard it all now!

I’m happy I’m well enough to do all this cool stuff with other people. It’s a good thing because I know that I can’t have another kidney transplant because you only get three. If this one fails, I’d have to go back on permanent dialysis. But for now, I’m just enjoying life and a big part of that is thanks to Chestnut Tree House.

Can you help young people like Nic?

Since opening in 2003, children with certain conditions are living longer than ever expected. We need to ensure that children and young people continue to get the best possible care and support, in an environment that meets the high level of clinical complexity while supporting their social needs. Extending our outreach with activities and therapeutic services to young people like Nic, who we have supported for many years, is an important part of what we do. But this is only possible thanks to your generosity and support.


Find out more about our services

Get to know more about activities we have at the hospice

Jack and the rest of the Activities team have written some amazing blogs about their work, why not also check out: