Meet Derry, 20, Brain Tumour

Meet Derry, 20, Brain Tumour

I was diagnosed with a brain tumour at the age of 20.

At that time, I was 6 months into a Building and Plumbing Apprenticeship, I was ready to start my driving lessons and ready to move into a studio flat.

I had a hospital appointment at the North Middlesex for an ongoing issue with my kidneys. (A rare kidney condition, I have had since the age of 6). The night before the appointment, I had been suffering from a really bad headache my head felt like it was in a vice. I told my Dad I was going to cancel the appointment and was going back to bed to sleep the headache off. He insisted that I go, saying he would take me as he could see I wasn’t in a fit state to go on my own.

I’d seen my Nephrologist as normal. He could see that I wasn’t looking well so he pushed me nearer the front of the queue in A & E.  I asked if I could lie down to try to relieve the headache a bit. That was the last thing I remember.

I woke up to see my family members and friends around my bed (I’d only usually see that many together at funerals or family parties).  I was told by a nurse that I was in the National Hospital, Queens Square, that it was Thursday evening and I had been in a coma for two days.

The doctor came to speak with me and my immediate family explaining that there had been a build-up of fluid on the brain & that I needed a biopsy to see the cause of the blockage.

After the biopsy, I couldn’t walk properly, my balance wasn’t right, and my eyesight wasn’t great. While physios were trying to get me up and about, I needed extra help washing, cutting up food, and holding things. The Doctors and Nurses explained I had now been experiencing side-effects of the biopsy. I needed a wheel chair to go to the hospital canteen and outside for fresh air.

It took a week for the biopsy results. The doctor sat us down and broke the news that I had a brain tumour. It felt like I had been kicked between the legs.  The doctor went on to explain that the “good news” was it was a benign tumour and it was caught early. It was treatable. They said that it was lucky that I collapsed in a hospital otherwise I wouldn’t have been sat in front of him now.

The doctor went on to explain that if the tumour hadn’t been disturbed, it would have grown bigger. I spent the next few nights in hospital crying myself to sleep.

I was transferred UCLH where the consultant explained that I would receive intense radiotherapy to my head and spine. She explained that I would lose my hair and feel tired, that I may feel hungry but not be in the mood to eat. She said that the radiotherapy was better than operating on the tumour as there was a possibility that would leave me wheel-chair bound permanently.

I had been taken out of HDU & put on a normal ward for a further week for observation before being allowed to go home. When home, my Dad put a bed downstairs as I couldn’t manage the stairs.

To cheer me up, my Dad took me to a North London hotspot known for traditional Irish pubs with Live music. The doorman thought I was drunk. My Dad had to explain that I had a brain tumour, that my walking and balance was affected and that I’d been drinking Fanta all evening!

I spent two months at home before my radiation treatment started. A few weeks before, I had to go for numerous blood tests, sperm banking, and have my mask fitted.

The next 6 weeks, were the roughest of my life. I wasn’t eating, all my clothing was hanging off me, my size 32” jeans kept falling down. I was given more medication to help increase my appetite.

Two weeks into treatment, I woke up to find clumps of hair on my pillow. I asked my sister to walk with me to the barbers to have it all shaved off.

I started Physiotherapy, twice a week.

My Clic-Sargent support worker rang me to tell me about a charity that supports teenagers & young people my age with cancer -Teens Unite!  I thought at first “great that’s all I need… listening to a load of teenager’s moan about their problems!”     After, I thought it wasn’t so bad!

So, the next day, I got on the phone to my physios and asked them if I could come in more times and for them to take me walking in the street to practice stairs, slopes & curbs. I started going to the local supermarket or corner shop on my own. It took the best part 12 months to learn how to walk, and get used to stairs & escalators again.

By July 2015, although my walking and balance was improved, my short-term memory and fatigue was still a problem. Still feeling ill and not being ready for work I spent much of the time at home trying to keep busy or just watching telly.

I contacted my support worker and she suggested applying for a college course. I checked with my Doctor who said that I should not return to construction.

My Dad joked with me “you’ve watched enough of these cookery shows since you went into hospital, why don’t you train to be a chef?”. So, I started a Hospitality & Catering course.

I am now finished the 2nd year of the course & really enjoyed learning new things, although there is still a lot of things I don’t remember off the top of my head.

I have been with Teens Unite for 5 years now. If it weren’t for Teens Unite, meeting young people in a similar situation to me and listening to their stories. Watching them improve their health, I wouldn’t be where I am now.

Teens Unite makes you feel like you are part of a family, making sure you don’t feel ashamed or embarrassed to share your thoughts and emotions. They have been really supportive and encouraging. They have given me the strength to not give up but push myself and carry on.   I am happy to share my story and hope that it helps others.

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