Our Stories - Graham
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Graham - Short History - November 2012

At the time of writing I am waiting for my next scan. On the day before Christmas I'll see my oncologist and check the

results. If it's clear then in another three months I'll have another scan and the process will be repeated. And so it will go

for the rest of my life

The first one My first tumour appeared in late 2005. I had been getting headaches, which progressed into migraines and dizzy spells. They felt like they were growing in frequency. During an 'attack' the only thing I could do was sit or lie still, and the following day I would be fine. Eventually I saw a GP, and was referred for a scan. The scan revealed a large tumour growing near the occipital (eyesight area) at the rear of my head. A week later I was in surgery. This was all a bit quick and I was probably in shock by what was happening. The post-operative infection After a long and technically difficult operation, I started to recover, only to wake up one night with this gooey pussy and bloody ooze saturating my pillow. The wound had burst and I had a raised temperature. I was whisked back into intensive care where I grew weaker. At some point I was told I had an infection, clostridium perferingens and there was a need for a second operation. Things were a bit grey, and I felt I was dying. Because of the infection I was last on the list, but eventually I had the operation, and woke the next morning feeling alive again. And that was how it felt, I could see, hear, taste and smell life again. I was told the tumour was a meningioma, a relatively common slow growing tumour. Upon removal it would be gone, and life would soon get back to normal. Soon after, a follow up scan revealed a second tumour. Despite my initial shock and the gnawing anxiety of something growing in my head, it was small and there was no need to have it removed immediately. I was still unwell, and my constant coughs and flu were a more pressing issue. After seeing various doctors, someone picked up that a part of my immune system was compromised. And between infections I had a second op to remove the new tumour. Again I drifted off to sleep and then woke opening my eyes and feeling groggy. The worst thing was that back in the ward the fellow next to me snored really loudly throughout the night. The following day I got up, negotiated my way down to the café, stood in the sun for a while, and with a coffee and a very sugary cake in my hand wandered back to the ward. My surgeon let me 'escape' several days afterwards. Another surprise When the pathology was checked, the tumour revealed it was not a meningioma, but a haemangioperictoma, which resembles a meningioma, but quickly recurs and is known to spread or metastise. Since then I have had two other tumours removed. Earlier this year I also undertook a course of radiology. This means I lay immobilised under what appeared to be a giant microscope, which then irradiated specific area's where the tumours had grown. There was minor hair loss, and some localised burning, but I worked through the whole period. In fact I have been able to live a relatively normal and active life throughout this period of brain tumours. Much of my success can be attributed to excellent health care during my periods of hospitalisation. My preparation for surgery has been to gain a relative level of fitness, and to eat healthy, mostly organic and more recently vegetarian foods. I also have practiced meditation for a long period of my life. To combat the infection, I had a huge amount of penicillin, which seems to have affected my ability to maintain an immune system. One side effect that treatment seems to be a secondary condition known as common variable immune deficiency (CVID). So now, I get an infusion every 4 weeks of what is sometimes referred to as 'golden juice', technically known as an Intragram. This is a human blood product, and without those wonderful people donating blood, I probably would not be here writing this note. As an ex blood donor, perhaps its good karma. So if you have been recently diagnosed with a tumour, or know someone who has, it doesn't have to be the end of the world. I have avoided general internet searches, but spent a bit of time working through medical library journals reading up on my condition. Having haemangiopericytoma is like Damocles sword hanging over me, but I still approach life smiling, with both eyes open, daring what comes my way to …'bring it on'. - Graham