our stories

rob's story

Rob, aged 28, loves photography and watching sport, particularly football, tennis and the Olympics. He lives in Clacton with his parents and has two older sisters.

When Rob was just two, his parents were concerned because he had lots of headaches and was very clingy. Tests showed a brain tumour and he had an operation to remove as much of it as possible.

His family were told that the tumour would not regrow but, when Rob was 13, they received the worrying news that it had grown back. He underwent another operation at Addenbrooke’s Hospital which successfully removed the majority of the tumour and he was told that it was very unlikely to return again.

Rob’s parents are teachers and he decided to follow in their footsteps. After leaving school, he went to university in Southend to study for a degree in Special Education Studies so he could teach people with special education needs.

He had always suffered from frequent, severe headaches. He also struggled with his appetite and, by the time he left university, his diet mostly consisted of bananas, chocolate and junk food.

For six months after his graduation, Rob worked as a classroom assistant at his old school which he really enjoyed. Then he became unwell and was rushed to hospital where they discovered that the tumour had grown back again, causing a bleed on his brain.

He had an emergency operation which successfully stopped the bleeding and reduced the size of the tumour again. Rob seemed to be recovering but then he started vomiting severely and could not keep any food down. Scans revealed that the scar tissue from his previous brain surgeries was restricting the movement of his spinal fluid so he had to have another operation to remove the blockage.

Rob explained: “Before I became unwell in 2013, I felt happy and confident and enjoyed my job working at my old school every day. After the operation to remove the tissue blocking my spinal fluid, my movement and balance were badly affected so I wasn’t able to walk very well and I also had a speech impediment. This left me feeling vulnerable, self-conscious and quite shy. I was not able to go out by myself any more and it was very frustrating - the speech and balance problems are not the most important part of me and I wanted to get back to being the ‘real Rob’ so people could see the whole person.

He was very determined and worked hard at his recovery, gradually improving his balance, walking and speech. His mum looked for some support for him and talked to local charities for people affected by brain tumours who were very helpful. One of them suggested that she should also speak to The J’s Hospice which supports young adults with life-limiting conditions and their families across Essex, in the comfort of their own homes. Rob has now been supported by The J’s for four years.

He has a J’s Specialist Nurse who helps to manage his medical care and the range of support that he receives. “I wasn’t in a good place back then and The J’s Hospice was a breath of fresh air! My dedicated J’s Nurse is extremely knowledgeable and has intervened for me on many occasions. When we’re together in a meeting with a doctor, she asks the right questions for me and checks that I understand what’s being said which is so helpful.

He still has severe headaches but they have improved and he finds that wearing a hat and noise cancelling headphones helps to make them more bearable. They are often brought on by loud and sudden noises and if he jolts his body - so he feels more comfortable at home where he can control his environment. 

Rob has home visits from the J’s Health Care Assistants - initially once or twice a week but now twice a month. “When my J’s carers visit, we go out for a coffee if I’m feeling okay, which I really enjoy. It has helped me to build up my confidence and now I go out more with my parents and occasionally by myself.

One surprising side-effect of the surgery in 2013 was that Rob was suddenly able to eat properly. “I found out that the tumour was on the part of my brain that controls my appetite which is why I was unable to eat most food. Before, it was awkward when the family went out for a meal as I could only eat the base of a margherita pizza - now I can eat any pizza I like and I love pasta carbonara with bacon!”    

Rob also loves going to The J’s Hospice Inspire! social group which meets seven times a year, allowing young adults with life-limiting conditions to try new things that they might otherwise miss out on. He also goes to the TGI Monday group organised by The J’s where he likes to help out.

The J’s Hospice fills a gap - other charities help the very young or very old but The J’s do other things that they don’t. Their social groups have given me the chance to meet new people and enjoy different activities. I like helping the other young people there too. I encourage them to participate and I’ll get the carers a cup of tea. I definitely appreciate the social side.

As Rob’s mobility and confidence have improved, he has set himself new challenges to improve his confidence. “I now volunteer at the J’s Hospice charity shop. I work in the back room helping to sort the stock, hang up the clothes and check the DVDs. My co-workers are very nice and I am enjoying it.” 

He has done some fundraising too. He was one of a group of J’s patients who walked over the roof of London’s O2 arena to raise money for the charity and did an abseil for the Headway brain injury association.

Looking back over the last four years, Rob feels very grateful to The J’s Hospice for the support that he has received. “The J’s Hospice really cares. They see me as an individual and they fit their care to what I need – they’re brilliant! When I first met The J’s Hospice, I was at a low point, looking for a direction. The J’s has helped me to get back on track and I am in a better place than I thought was possible. I enjoy my life a lot more and the future is a lot brighter and nicer. I don’t know what life is going to bring but, since The J’s have been there, I’m feeling more positive!

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