My journey began on Christmas Day 2012, although things had been building up months before. For months I had been intermittently experiencing vision issues – seeing zig zag lines, Alison (my wife) kept saying they were migraines but we couldn’t understand why I never got a headache afterwards. I also became very aggressive to the point that I made an appt with my GP to see if he could recommend anger management therapy! Leading up to Christmas I lost my balance a couple of times and started slurring, Alison kept asking me why I was speaking funny but I didn’t realise I was. During my Christmas dinner I ‘fell asleep’ but on reflection I now know that it was a seizure plus the left side of my mouth was drooping. My son and daughter took me to A & E at Hillingdon Hospital where the Dr suspected I had had a TIA and was transferred to the stroke unit at Northwick Park hospital. On Boxing Day the Consultant said he wasn’t convinced I’d had a stroke but until I had an MRI he would treat me for a stroke and discharged me supplied with aspirin and omeprazanoles. Two days later I had my MRI and within minutes of us getting back into the house after the scan our Dr’s surgery phoned to say our Dr wanted to see us. The Dr then informed me that I hadn’t had a stroke but I’d got a brain tumour, she said she had already been on the phone to Mount Vernon to seek advice, which was to start me on steroids which would reduce the swelling. Alison could see the radiologist’s report on her screen and she could see the words high grade glioma! The GP then faxed paperwork to Hillingdon Hospital for a referral to the Consultant. Alison phoned the hospital the next day and spoke to a secretary and the secretary said because we already knew that I had a tumour to get our GP to send my paperwork direct to Charing Cross because that is what they would do.
2nd January – I had my appointment with the Neurosurgeon – Kevin O’Neill, they arranged for another MRI with contrast. I was told that my tumour was 5cm and it had to be removed. I was booked in for a craniotomy on 15 January 2013.
15 January – I was first on the list for my surgery, they took me down at 7.30 am, they brought me back to the ward at 4.30pm I was wide awake and pain free and in good spirits. Alison and my son and daughter had been given the devastating results – I had a Glioblastoma Multiforme Grade 4 (GBM4), and was told it was the worst possible tumour to have and it was very aggressive with a prognosis of 2-3 yrs. They had managed to debulk 90% of it but they were told that because this sort of tumour has ‘tenticles’ and are embedded in the brain it will re-grow.
The next day I was sent down for an MRI, in fact I actually went down on my own from the 11th floor to the 1st floor. I was informed that I would require 6 weeks of daily radiotherapy (Mon-Fri), along with chemotherapy every day. On Thursday (2 days after my op) I was discharged.
A few weeks after my surgery I was measured and fitted for my mask in preparation for the 6 weeks daily radiotherapy.
18 Feb ’13 – My radiotherapy begins, I first had to meet with the neuro oncolcolgist who explained everything then he gave me my first lot of chemo (Temozolomide – temodar for short), as this has to be taken an hour before the radiotherapy. From this day until my last day (29th March) I did not have any side effects from the radiotherapy (except hair loss!). I did suffer with bouts of nausea and loss of appetite from the chemo. After I finished the radiotherapy I had a 6 week break. They warned me that for the 1st 2 weeks I would feel dreadful and wouldn’t be able to get out of bed, but luckily none of this happened! I went on for a further 6 months on 5 days of chemo 23 days off increasing to 360gm.
I do experience intermittent partial seizures and I am taking Keppra to prevent a ‘full blown’ seizure. I am still here 3 years down the line to tell the story, with no re-growth. I have recently been ‘promoted’ from 3 monthly scans to 6 monthly. I do get very fatigued but have an afternoon nap each day to give me a boost.
Myself and my family are all of a positive mind and Alison and I live life to the full, and make the most of every day. We have been and will continue to travel abroad.
The main thing is to never give up hope and remain positive, keep strong and be happy.