Kieran's story

Diagnosed 2007 with malignant pineal germinoma 

I was at college studying a B-Tec National Diploma in public services,  as from 10 years of age I had a dream of wanting to be a paramedic for West Midlands Ambulance Service. My mum had been a single mother for 17 years and had brought me and my three older siblings up on state benefits. This was a good year for her as she decided it was time to change her life, she became a teaching assistant and had been working for three months when I became ill.

Diagnosis

In late February 2007 I started getting repetitive and very painful headaches, I didn’t like making a fuss of it and just took paracetamol which helped. I didn’t tell my family when I went to the doctors, my GP thought I had begun having migraines as my mum; sister and brother were also migraine sufferers. He gave me medication and said if I wasn’t any better in two weeks he would try something else.

The headaches got worse so I went back to my GPs. I saw a different doctor who wasn’t happy with my balance and vision and wanted this looked at further straightaway, so called 999 and had me taken in to Walsall Manor Hospital by ambulance.

My last school photo, this was taken at the start of 2006

My brother contacted my mum at work to tell her what was going on, she tried to ring my mobile, the paramedic answered my phone and told my mum “that she wasn’t to worry, it’s just Kieran’s doctor wanted him checked out at hospital”. Mum found me in a dark cubical. I had a fear of light, a stiff neck and a temperature so they suspected I had Viral Meningitis, and gave me antibiotics. I was sent for a CT scan, CT with contrast, and then MRI scan before being moved to a ward. My scan records had to be biked over to the Queen Elizabeth, Birmingham, for analysis, and they were positive that the right thing for me was to have me transferred to their hospital for any more investigations and/or treatment.

I was told that I needed to have a biopsy of a lump on my brain and this was to happen on the next Monday. That weekend passed very slowly.

I was in theatre for just over 3 hours; my mum was anxious as she knew nothing, she wasn’t allowed to be with me before I went into theatre and the last time she saw me I was a strapping young handsome lad with a full head of hair. She was shocked to see the surgeons had shaved my head and all she could see was the two scars from the biopsy.

After the biopsy the surgeon said he was 96% sure that it was just a cyst on my brain; but we had to wait for the histology results to come back.

After my biopsy

Nine days passed and on the 21st March a doctor came to my bed and said my results were back but I needed my mum at my bedside before she could give us the results. By the time my family could get to the hospital we were told that the doctor had been called away to theatre, as soon as she had finished she’d come and see us. Hours passed - me, Mum and her fiancé were anxious for the histology results, finally the doctor had come out of theatre and saw us.

She sat in the corner of the room looking at my mum, talking in a lot of medical jargon, Mum then heard her say I would get an outpatients appointment to see an oncologist. I was dumbfounded, so was my mum. She then asked the doctor “Has my son got cancer?” The doctor replied with “Yes” and walked out of the room. We never saw her again.

I burst into tears, my mum and her fiancée were crying too. We had to ask the ward sister what type of cancer I had got and what was going to happen next. We were told that I had got a Malignant Pineal Germinoma Brain Tumour...

Back home pre-treatment

I was discharged on the 22nd March 2007; while at home I decided not to return to college until I had seen my Oncologist to know what was going to happen.

On 19th April, he told me that the type of cancer I had was common in teenage boys and he was 92%-96% sure that he could cure me with 25 radiotherapy sessions, 15 on my brain and spine and 10 on my brain as my tumour can regrow on my spine.  It all seemed to be going as well as it should have done, I was being kept up to date with what was happening and what had got to happen, I was told that I would have to have regular blood tests and scans for the rest of my life and due to me having radiotherapy on my Pineal Gland where the tumour was, they would not be able to protect my Pituitary Gland which controls the body’s hormones and I may suffer damage to my hormones long term but they weren’t 100% sure. I had started my first session to have my mould mask made for me to have radiotherapy.

Readmission

Days passed by I was having pressure headaches, lots of sickness and I was freezing cold even though it was really warm outside. Radiotherapy treatment still hadn’t started, on 25th May 2007 mums fiancé found me passed out on their bed, he rung mum who was at work, she got home and saw how bad I was and got straight in touch with the hospital and was persistent until they readmitted me.

My sister’s boyfriend took me back by car to the Young Persons Unit and they were unsure what was going on with me so they upped my steroids. This made me gain a lot of weight. I went to just under 25 stone.

As the May bank holiday of 07 approached I was still getting the pressure headaches, a locum doctor came to see me and wanted me to have another MRI scan. The results came back and showed that there was shadowing on the left hand side of my brain.

Craniotomy and more

No-one was sure what it was so they decided to take me into theatre and do a de-bulking operation to find out exactly. I was so weak I wasn’t able to sign the hospital consent form for the operation I just managed to put a cross there. I was in theatre for around 5 hours and it turned out to be an abscess which covered 80% of my brain. They had to perform a craniotomy and they took part of my skull away to relieve the pressure. Coming out of theatre I was taken into Intensive Care where I spent a few days with round the clock 24 hour care.

As days passed I was sent back to the neuro ward where everything seemed to be going well. A few more days passed and I became vacant and lethargic, so they did another CT to find a reason why I had deteriorated, the scan showed that I had got hydrocephalus. I was rushed back into theatre to have an external drain fitted, and was then moved to the High Dependency Unit. I was kept on this ward for 13 weeks. I had to have another 5 external drains fitted to my brain and 4 central lines fitted into my neck, I was bed bound for 10 weeks which gave me: deep vein thrombosis, viral meningitis and the C. difficile diarrhoea infection. Problem after problem.

A new surgeon was taking over my case. Mum heard him talking to another doctor and repeatedly looking at me and my case notes she heard him say to another doctor he didn’t think he could save my life but he would give it a damn good try...

The surgeon told my mum that if I could not get off these external drains I would never go home as they were something that can only be looked after in hospital because of medically adjusting them. So the next step was another operation to have a shunt put into the back of my brain - a tube which runs from the back of my head, down into my stomach carrying away excess fluid. I needed more surgery a week later as the first shunt became blocked.

Me on the steroid increase with the weight gain. I was also on a morphine pump.

This is showing my skull after the craniotomy and after the swelling had gone down.

I was like this for 18 months.

Home at last

I was discharged from the Queen Elizabeth Hospital on September 7th 2007 after spending a total of 16 weeks and having many operations there. I was sent home with a massive bag of medications that I was using, but I didn’t get any information on support groups or any literature on benefits, or about brain tumours. Mum's life had changed forever, by now she was not only my mum she was also my full time carer she was also my rock, no matter what I needed she was able to do it for me.

Radiotherapy and repair

I had to now start my Radiotherapy which I was meant to have had in April/May of this year, I had to have another mould mask made for this because of having the craniotomy and my skull being a different shape.  I started the radiotherapy over 5 weeks Monday to Friday from 22nd October 2007 to the 23rd November 2007. Every day was different for me, a lot of the time I was sick and also very tired, other days it was like nothing had happened, though I was also losing all of the hair on my head.

 

It was over a year later that I could finally have my skull ‘repaired’.  On November 27th 2008 I had what is medically known as a Cranioplasty, the piece of skull that was removed couldn’t be refitted due to infection in the bone so I had to have a titanium plate inserted.

Fighting on

After over 30 operations to date I have been left with short term memory loss and epilepsy, causing complex partial seizures, which means I have to take anticonvulsant medication. Due to the steroids I was on when diagnosed with the brain tumour, my last body scan showed I have the starting of osteoarthritis in both of my hips and I also have dysplasia of my left knee so I can’t bear weight through my left leg and have to walk with elbow crutches. I have chronic pain syndrome for which there isn’t a cure I just have to keep taking medication.

As a result of the radiotherapy both my pituitary gland and my adrenal gland have failed, affecting hormones and testosterone and putting me on still more medication for the rest of my life. I am on growth hormone replacement injections each day because of the damage to my pituitary gland, and daily steroids as my adrenal glands have packed up on me and if I don’t take the steroids I can go into what is medically known as a ‘crisis’ which can be life threatening.

I have hyperacusis - damage to the nerves in both my ear canals – which affects my hearing and I can’t bear loud noises. I have also been diagnosed with chronic widespread fibromyalgia and prostatitis. So I rely on a huge amount of different medications to manage these various medical problems and just cope from day to day.

I also have to have regular MRI scans and lumbar punctures (in order to monitor the pressure of my shunt and make sure it is working correctly) as requested by my neurosurgeon and oncologist.

Although I know I will never make it as a paramedic which was my childhood dream for life because of my severe memory loss that I have, I hope that over the past ten years I have proved that having a brain tumour does not have to hold you back.

Importance of support

After the first three years from diagnosis where I had the amazing support from my mum and close family, and I wouldn’t have got through without that, we then had the first point of contact in 2010 with Brain Tumour Support which allowed my life to really change for the better.

The charity listened to my story and they gave me the option to start supporting others who have been diagnosed with a brain tumour through volunteering. Volunteering gave me my confidence back and it started to open up my pathway to get into employment.

Between 2013 and 2015 I started doing 1 - 2 hours a day, one day a week volunteering with Walsall Council then over the 3 years ended up doing 3 days a week on the Walsall Works Programme. I met new people, learned new skills, and in 2015, thanks to my line manager, I even got a day’s volunteering at the West Midlands Ambulance head office in Brierley Hill, listening in to calls to see how ambulances are dispatched – taking me back to my dream to be a paramedic.

In March 2015 I also had the honour to be nominated, and win, the Walsall Mayor’s Award for Civic Duties. I had been nominated by our local councillor to recognise everything I’ve faced and overcome and for work with Brain Tumour Support and the local community. I received the award from Bob Warman from Central News at a gala dinner ceremony, and was also then invited to be interviewed on local TV to talk more about my illness and giving support back to others.

Present and future

Just a few months later in August 2015 I interviewed successfully for a paid job at Walsall Council and was very proud to start paid work on the council’s Recruit-Ability programme – and following that in 2016 I became a business support officer with the council. I would never have thought I’d be able to achieve full time work but in November 2018 I was offered full time hours in this role.

Kieran has been a key volunteer at our Midlands Support Groups

Volunteering at Walsall Council

Receiving the Mayor's Civic Award

I’m honoured also to be an ambassador for Brain Tumour Support, contributing to campaigns and events, and also still helping run the Facebook support pages for the Midlands support groups and attending meetings whenever possible.

I still face medical issues every day, have had further operations and am on a huge amount of medication, but with the support that I’ve received and my own determination my life has really moved on.

I hope I can continue to inspire others to do the same.

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