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Kieran's story

Hi my name is Kieran here is my story:

I was at college studying a B-Tec National Diploma in Public Services, as I had a dream of becoming a paramedic for West Midlands Ambulance Service. In late February 2007 I started getting repetitive and very painful headaches, I didn’t like making a fuss so just took paracetamol. My mum had been a single mother for 17 years and had bought me and my three older siblings up on state benefits. This was a good year for her, she decided it was time to change her life, she had started a job as a teaching assistant and had been working for three months when I became ill.

I didn’t tell my family when I went to the doctors, my GP thought I was having migraines as my mum; sister and brother were also migraine sufferers. He gave me Migraleve medication and said if I wasn’t any better in two weeks then I was to return and he would try something else. A week passed and the headaches were getting worse, so whilst everyone was, out I decided to go back to my doctors, this time I was a different GP. Doctor Dorothy Onuwakolam was from the old school but lovely. Dr Dorothy was brilliant; she wasn’t happy with my balance and vision and wanted this looked at further, she tried to get me a bed at Walsall Manor Hospital but there were none available so she did 999 and had me taken in by ambulance straight away.

My brother Ashley contacted my mum at work to tell her what was happening, she was worried and tried to ring my mobile. The paramedic answered and told my mum not to worry and it was just that my doctor wanted me checked out by hospital doctors, he told my mum to meet me at hospital. When I got there they put me straight into a dark room as they suspected I had meningitis (I had a fear of light, a stiff neck and a temperature) so they gave me antibiotics. I was also sent for a CT scan and moved to a ward. A few hours later a doctor came round and told us that the CT was showing a shadow on my brain but they weren’t exactly sure what it was. I was told I needed an MRI scan to give them a more detailed image, the MRI showed more extensive shadowing but was still not detailed enough so I had another MRI but with CONTRAST. When the results came in the doctor wanted the neurology department at the Queen Elizabeth Hospital in Edgbaston, Birmingham to have a look, they tried to fax it over to the Q.E but the fax machine at Walsall Manor wasn’t working so they had to request a biker to come from the Q.E to the Manor and pick my scans up and take them back for a neurologist to have a look at them!

“I still get headaches everyday but it is a side effect which I live with, it may sound silly to most people but I am thankful for each day I live.

Life is only what we make it . . . .”

After the scans had been seen I was told that Q.E wanted me taken there so that they could assess me but I had to wait for a bed to become available in the neurology ward. On the 7th March, just before midnight, I was taken by ambulance from Walsall Manor to the Queen Elizabeth Hospital.

Next day I was taken for another MRI, the scan results came back the next day, I was told that I needed to have a biopsy of the ‘lump’ on my brain. This was going to happen on the following Monday. On the Monday morning I was taken to theatre to have an Endoscopic 3rd Ventriculostomy Biopsy of the Pineal Region of my brain to see what the lump was. My neurosurgeon was Mr G Flint. I was in theatre for just over three hours, during the operation they shaved off all my hair, this was a big shock to my mum when she saw me.

Following my surgery Mr Flint told my mum that he was 96% sure that it was just a cyst on my brain however we had to wait for the histology results to come back which would take around 10 days and I wasn’t allowed to go home until then. Nine days later my results had come back. The doctor sat in the corner of the room looking at my mum (not me)! She was talking in the medical jargon (as doctors do) and we couldn’t really follow what was being said but then she said the word Oncologist. When mum heard that word she asked the doctor to stop and said “Are you actually saying my son has got cancer?” Mum was crying, I was dumbfounded, the doctor walked out of the room, I never saw her again.

We had to ask the Ward Sister what type of cancer it was and what was going to happen next, she told us that I had a ‘malignant pineal germinoma brain tumour’. That was the first time I had ever heard these words.

Straight away I was started on a course of steroids (Dexamesthasone) which was 2mg, four times a day, although the steroids helped to reduce the swelling of the tumour their side effects were difficult to cope with and I developed what was known as a Typical Steroid Rash over my body.

Once home I took the decision not to return to college until I had seen my Oncologist; an appointment came in the April. I was told that the type of cancer I had was quite common in teenage boys and he was 92%-96% sure that he could cure me with radiotherapy; I would have to have 25 sessions of radiotherapy, 15 on my brain and spine and 10 just on my brain. For the radiotherapy I needed a mould mask made for my head so that the radiotherapy would concentrate on the area needed, however I was told due to the radiotherapy and the position of my tumour, my pituitary gland would also be hit by the radiation field meaning some of my hormones would stop working: I had to go to the Andrology Clinic (Fertility) to store some semen in case my fertility was damaged during treatment.

Over the next few days I started feeling ill, I was having pressure headaches, lots of sickness and I was freezing cold even though it was really warm outside, I also kept passing out. I was readmitted onto the Young Persons Unit on the 25th May 2007 for them to investigate the headaches I was having. They upped my steroids from 2mg four times a day, to 16mg four times a day. The increase in does made me gain a lot of weight, I was just under 25 stone.

As I was still getting the headaches a doctor came to see me, she wanted me to have another MRI scan. The results came back and showed that there was something on the left hand side of my brain, the doctors weren’t sure whether it was a fast growing second tumour or something else so I was transferred back to the Neurology Department from the Young Persons Unit for the neurosurgeons to have a look. Mum went and had a word with my Oncologist (Dr David Spooner) and asked to see my MRI, he showed her the scans, it looked like a massive fried egg splattered over the left hand side of my brain.

Back in the Neurology Department the doctor told my mum that they were going to do a Debulking Operation to find out what it was. I was taken into theatre around 9:30am on Monday 5th June and was in there for around 5 hours. After my surgery the anaesthetist told my mum that it definitely was not a second brain tumour but I did have an abscess which covered 80% of my brain. They had to perform a craniotomy to drain the absess and I was transferred to Intensive Care for a couple of days.

Following discharge from Intensive Care I was transferred back to East Lower A ward. For two days everything seemed to be going well, however I on the third day I became vacant and lethargic, another CT scanned showed that I had developed hydrocephalus which meant another trip to theatre to have an external drain fitted (over time I have six external drains and 4 central lines fitted!). After this operation I was moved to the High Dependency Unit (H.D.U) where I stayed for 13 weeks, of these 13 weeks I was bed bound for 10, being unable to move for so long took a toll on my body and I developed Deep Vein Thrombosis, Viral meningitis and C-Deficial (A very severe case of sickness and diarrhoea).

My case was then taken over by a Mr Peter Gan. Not long after he had taken over my care my mum heard him talking to another doctor and looking at me and my case notes. She heard him say that “he didn’t think he could save my life but he would give it a damn good try!” Mum took real comfort in those words, knowing that someone else was fighting for me.

We were told that if I could not get off the external drains I would never go home so the next step for me to have a shunt fitted; this was done and I was transferred back from H.D.U to East Lower A, however just a week later I was waking up with severe pressure headaches which caused me to vomit. Mr Gan came to see me and, after tests, he said that he was sure my shunt was blocked, I was taken back to theatre and a V.P shunt was inserted. Since the insertion of the V.P shunt I have been ok, I only really get pulling pains from it, which I have been told it is scar tissue growing around the wiring.

I was discharged from the Queen Elizabeth Hospital on September 7th 2007 after spending 16 weeks in hospital and having a total of 16 operations. In fact I had had so much surgery that, after being discharged, I had to have another mould mask made for my radiotherapy because of my skull being a different shape! In total I had 25 session of radiotherapy, Monday to Friday, starting 22nd October 2007 to the 23rd November 2007; each day was different, some days I was very tired, other days I was sick and I lost my hair all over.

Cranioplasty (skull replacement), my own skull could not be replaced as it had been out for almost 18 months and my muscle tissue had adhered to my brain, so I had a titanium plate inserted over the gap.

Nowadays I have to have regular MRI scans and blood tests. Because my pituitary gland was affected by the radiotherapy I suffer excessive perspiration (sweating) and many of my natural hormones do not work properly. I have had difficulties with my thyroid and have received treatment for thi, at the moment my testosterone doesn’t work naturally so I have to use a form of HRT. In total I take a list of 20 different medications a day. In December 2010 I had Botox injected in both of my arm pits to help with my excessive sweating, it worked well, I have had it a further three times since then and am pleased with the results.

I also have problems resulting from long term steroid medication. I have been left with a lot of pain in my left knee, the joint keeps swelling and it becomes very hard to walk on. I am using elbow crutches to help me as I can’t bare full weight on my left leg and I have medication to take away the worst of the pain. I recently had my hearing tested as I couldn’t bare loud noises, it was found that I have hyperacusis (damage to the nerves in both my ear canals), and I now have hearing devices that I use daily to retrain the nerves in my ear canals to accept loud noises again. This could take up to two years.

I have been told that there is a 2%-3% chance that the tumour will grow back. There is also a 2% chance that the cancer will occur somewhere else in my body. In total I have had 27 operations:

  • 20 under general aesthetic
  • 7 under local anaesthetic
The side affects of my treatment have been more than just physical, I have been left with Short Term Memory Loss and have been advised not to do any paid work because of this. However I want to work, at the moment I am doing volunteering at Walsall Works Regeneration Process which helps to get 16-25 year olds onto apprenticeships and into long term employment. I also volunteer with The Brain Tumour Charity at one of their Support Groups.As of today I am living well. I still get headaches everyday but it is a side effect which I live with, it may sound silly to most people but I am thankful for each day I live. Life is only what we make it . . . .