Home Lifestyle I’m 34 and terminally ill, but I’m not scared of death anymore

I’m 34 and terminally ill, but I’m not scared of death anymore

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I can honestly say that my life changed when I met my Marie Curie nurse, Jenna (Picture: Jyoti Smith)

I’ve spent the last nine years living with the idea of dying.

In 2015, aged 25, I received my terminal diagnosis.

I had developed a condition called pulmonary fibrosis – an incurable, restrictive lung disease – and was rejected for a double lung transplant due to a lack of motility in my oesophagus, which could cause acid from my stomach to leak into my new lungs and damage them.

My prognosis: three-to-five years. But here I am, almost 10 years on, at 34, and I’m living life to the fullest – if on the edge – and it’s largely down to one thing.

Embracing hospice care.

I had a normal life as a happy and larger than life child, until I was 16. Then my body started slowing down and I was getting all these strange symptoms, like not being able to make a fist. I went to the GP and was diagnosed with arthropathy, a painful joint disease. I developed a high pain threshold but as time went on, my joints started to dislocate and I became slower.

At 21, I met my husband, Dave, when we were working together at the jewellery quarter in Birmingham. We went from work mates to best friends, and romance blossomed from there.

For a while my symptoms were minimal, and I would say that my life was still pretty normal. Unfortunately, two weeks before our wedding in August 2014, doctors said that lupus had started to take over my body and if I didn’t have chemotherapy, I wouldn’t have long left. 

‘Wait two weeks, let me get married.’ I begged. I knew chemo would make me unwell, and I didn’t want to be too ill for the wedding. They agreed, and let me postpone. We never had our honeymoon.

Dave and I have been married for nearly 10 years (Picture: Jyoti Smith)

I started chemo that October for five months. The steroids I had to take made me blow up like a balloon! The chemo suppressed my immune system, which at the time stabilised my disease, but chemo is a bit like a can of worms – once it’s open you don’t know what will come out.

Once I was stabilised and all my internal inflammation was reduced, the real extent of the internal damage and extensive scarring on my lungs became clear.

Eventually in 2015 I was diagnosed with mixed connective tissue disease, or MCTD.

This is an overlap of autoimmune disorders with traits of diseases such as lupus (where the immune system mistakenly attacks healthy parts of the body), scleroderma (which causes the skin and tissue to harden and tighten), Sjogren’s (which affects the saliva and tear glands), and rheumatoid arthritis, all bundled into one.

At the same time I learned about the MCTD, I found out that, due to the impact of it, I’d also developed pulmonary fibrosis.

This diagnosis means that I’m now on oxygen all of the time.

When I was rejected for a lung transplant, my world ended

At home I have my concentrator machine but I have to carry liquid oxygen with me when I’m out. Liquid oxygen leaves a vape as it’s being used, so I’m always being around with security who think I’m vaping inside! I call it my ball and chain, but the pros outweigh the cons. It stops my organs malfunctioning so it’s a catch 22.

For me, breathing is like trying to take deep breaths through a straw while holding your nose. My only hope was a lung transplant.

When I was rejected, my world ended. And for the first two years after that, I was so anxious that I could barely leave the house. I was also deeply depressed.

I had an image in my mind of how I wanted the future to look – I wanted to get a house and have kids, grandkids even. But as things progressed, some of those dreams shattered in front of me. 

When my lungs started declining further in 2022, I started reading about hospice care in a group I’m part of for people with pulmonary fibrosis. That’s when I went to my respiratory nurse, Lisa, and asked for a referral to Marie Curie.

Hospice is only the beautiful beginning to the end (Picture: Jyoti Smith)

I can honestly say that my life changed when I met my Marie Curie nurse, Jenna in May 2022. 

My first appointment with her took place the day before my birthday. I met her with my mum and Dave at home, and I could feel straight away what a beautiful, caring nature she had.

Since then, she has helped me so much with my mental health, fatigue and pain management. She’s helped me access morphine patches that help dull down background pain, referred me for support for my fatigue and breathlessness.

And, as part of the at home hospice care Marie Curie provides, she comes to visit me every month for check-ups. 

The word ‘hospice’ can be scary. It automatically makes you think of ‘the end’. But what many people don’t understand is that hospice care also allows those with life-limiting conditions, like me, to have the best life we can. 

Some days are great and some days are bad, but I think it’s like that for everyone. I have lots of hobbies and I like to keep myself occupied with them. I’m very creative and I do lots of painting and drawing, and I’m a big foodie too. My cakes are legendary.

While I don’t know how long I have left, Jenna’s support helps me feel much more secure about an uncertain future

I also love naps. Naps are my friend. We enjoy days out, but not many places are accessible and my oxygen tank gives me a curfew of five hours so it can be hard to find places that work, but me and Dave love visiting historical spots – and anywhere with good food.

Hospice is only the beautiful beginning to the end. And now, thanks to Jenna and the whole team at Marie Curie, death doesn’t scare me like it used to.

Sure, sometimes I just want the world to stop so I can enjoy it a little bit more, but they’ve helped me embrace what makes me happy. 

I love painting, drawing and spending time with my friends and family, so I always make sure to prioritise these things now.

Dave and I have been married for nearly 10 years; he is my best friend and I love the life we’ve built together. The only thing that bothers me is when he steps on my oxygen pipe and I nearly faceplant on the floor! 

It’s up to every person how they want their final journey to be (Picture: Jyoti Smith)

My Mai (mum) is amazing – she’s very emotional watching her child live with a life-limiting condition, but our bond is special, and she calls me her ‘ray of sunshine’. 

And I’m lucky to have a special relationship with my four-year-old nephew, Alfie – he is my lifeline. And my Jack, who is 1 year old and a foodie like his Uwa (Auntie).

You don’t ever think that someone so little could make you dream again, but Alfie is so thoughtful and always looking out for me. Just recently we went for a family day out at Castle Bromwich Hall Gardens, and while everyone was walking ahead, Alfie ran back and took my hand. With him, I’m never left behind.

While I don’t know how long I have left – it truly is one of the most scary things, not knowing when you’re going to die – Jenna’s support helps me feel much more secure about an uncertain future.

At the end of the day, I know that if anything happens to me, my husband and my mum will be taken care of as the hospice are there for grieving families too. They even offer pre-bereavement care so families are supported through what is to come.

Knowing mum and Dave will have that is a huge relief. It is the best thing I could ask for. 

It’s up to every person how they want their final journey to be. And I know that mine is going to be so colourful and magical.

One in four people don’t get the end of life care they need. Marie Curie’s Great Daffodil Appeal encourages people to donate and wear a daffodil to help the charity continue to support people with any illness they’re likely to die from. For information and to donate visit: Mariecurie.org.uk/daffodil 

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