our stories

stephen's story

Stephen, aged 36, is very articulate with a great sense of humour. He is interested in politics and enjoys films, computer games, graphic novels and reading. Originally from Bradford, he now lives in Brentwood with his parents and one of his brothers.

His mother is a registered nurse. She first felt that there was something wrong with his health when he was only five.

Stephen explained: “By the time I was seven, I was often very tired. I had a lot of headaches that became more frequent and severe as I got older. I was also quite short compared to other children my age. I saw several consultants but they couldn’t find anything wrong with me.

His health problems continued and he struggled at school because of his poor attendance. His mother was determined to find out what was wrong with him: she was very persistent with the doctors and read a lot to try to find the answer.

When he was about 15, tests showed that Stephen had high levels of prolactin. An MRI scan revealed a benign (non-cancerous) prolactinoma tumour on his pituitary gland and he had an operation to remove it. His severe headaches continued but they were better than before.

In 2008, when he was 26, his mother’s efforts finally paid off. “She suspected that I had a condition called MEN1 which can cause tumours on the glands that produce hormones. I had a genetic test for the condition and it came back positive. It was a relief for us both to finally know what was wrong.”

At that time, Stephen was on a course of testosterone injections, once every three months. He became concerned that the treatment was not working. He explained: “I knew something was wrong - I had my regular injection but I didn’t feel any different. Tests showed that my levels of calcium were raised and I had four benign growths on my parathyroid gland. In 2010, I had an operation to remove them.

Since then, he has also developed polyps on his pancreas and other growths around his body which have all been benign but have caused him some discomfort.

As well as these health problems, I continued to have severe, painful headaches and I suffered from insomnia too so I was constantly tired and unable to sleep. I began to feel socially nervous: I was scared I’d say the wrong thing to people and started to panic when I went out. In the end, I stopped leaving the house on my own. I didn’t miss it - I only went out in the car with my mum once or twice a month.

It was Stephen’s mum who first heard of The J’s Hospice through friends in 2014. The charity supports young adults aged 16-40 with life-limiting conditions across Essex. It provides tailored nursing and emotional care, advice and activities in their home or in the community to help them to live life to the full, however short. Stephen was initially doubtful that The J’s could help him.

When I heard the word ‘hospice’, I wasn’t sure if The J’s was really for me. The first time my Health Care Assistant came to visit, I couldn’t get out of bed but, on their second visit, I managed to sit on the sofa to chat with them. For the first year, we sat in the house talking for a couple of hours each time and then they decided to take me out for a drive.

Now they take me into town once a week, when I’m feeling well enough, and we go for coffee in the High Street or visit the library which I really enjoy. My J’s Nurse advised me to get some noise-cancelling headphones and they do help to make my headaches a bit more bearable but I’m still completely exhausted after each trip and have to spend the next day in bed in the dark - but it’s definitely worth it!

With encouragement from The J’s Hospice, Stephen has also developed the confidence to go the charity’s social groups. He goes to ‘Rockin and Rollin’ in Romford which is run with St Francis Hospice and also to ‘Inspire!’ in Danbury which The J’s organises seven times a year.

I didn’t think I’d fit in at Inspire! but I really enjoy it. I love the social interaction with the other patients and the helpers and all of the activities, particularly painting and the lizards and birds that they sometimes have there. The cakes are delicious - the lady who bakes them is very good! I like the complementary therapies too. The neck massages really help to relieve my stress. The whole thing is brilliant!

Throughout his time with The J’s, Stephen has been supported by his J’s Nurse. He describes the care he receives as ‘brilliant’ and ‘very useful’, particularly when they work with the other agencies involved in his care to co-ordinate the support that he receives.

Now Stephen is looking forward and is determined to build on the progress that he has made with The J’s.

My life before The J’s Hospice was bad. Because of my health problems, I hadn’t talked to anyone outside of the family for eight years, I’d not left home on my own for eight years either and I only went out on a drive with my mum every two to four weeks. Now, I feel more confident in myself and I’m not frightened about meeting new people anymore. The J’s has made my world wider.

The care and support that I receive from The J’s Hospice has motivated me to take more control and plan for the future. I still have extreme fatigue and crippling headaches but I’ve set myself a goal of going out more by myself and I’ve started to catch the bus into town on my own. When I go out with The J’s, I’m unwell for the next day but when I go out by myself, I’m ill for the next three days. It’s crippling - I have to have the curtains closed and can’t even go downstairs and make a cup of tea – but doing something that will make me feel bad for three days is better than doing nothing and going into a slump. Even if it hurts, it’s really worth it.

The visits from The J’s have literally changed my life. If I ever win the lottery, I’ll definitely give a lot of money to The J’s Hospice. They are fantastic!

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