Patient Stories
Alexandra’s story:
“Subsequent to this whole shocking episode, we felt so relieved that the tumour had manifested itself in time to be treated successfully.”
In May 2007, all of a sudden one evening, without any warning, I suffered from a series of grand mal seizures. I had never had any epileptic fits or anything like this before so I was rushed to hospital and was put into a CT scan. It was discovered that I had a large brain tumour and I was advised that surgery would be the best option. The next step was to find the best possible person and place to carry this out. After much research into possibilities all over the world, we decided that Kevin O’Neill, a neuro-surgeon from Charing Cross hospital would be the man for the job.
He was outstanding from the start with a very personal and caring attitude, explaining everything frankly but making me and my family feel very confident and positive. He said that we should wait another week or so until this new equipment came through (called the SonoWand) which would help with the imaging during the time of the operation. This would make a crucial difference to how much of the tumour could be removed due to the fact that it is hard to tell the difference between the appearance of the tumour and the healthy brain cells as the two were intertwined.
Without the SonoWand, more of the tumour may well have been left behind but with the instant ability to check if there was anything further to extract it was possible hopefully to remove the whole thing. The results of the surgery were excellent and no further treatment (such as chemotherapy or radiation) was needed at that point.
Subsequent to this whole shocking episode, we felt so relieved that the tumour had manifested itself in time to be treated successfully. Since that day I have been on anti-seizure medication but beyond that have not had any other side affects. I regularly have MRI scans – initially every 3 months but that has recently changed to every 6 months.
I think I am a fairly cheerful person and I do think a positive attitude can make a huge difference when battling something like cancer.
My own father died of cancer when he was just 62, but his ever positive outlook spurred me on when this happened to me and it could have been all doom and gloom. My main feeling is great relief that the doctors were able to find and treat my cancer. Other people can have cancers that are inoperable or the surgeons find that once they operate they cannot extract it all. I am so grateful that this was not the case for me.
This episode has changed my outlook in many ways. Despite a general reliance on wireless networks I have installed a wired telephone in my apartment and I avoid diet drinks or anything with the product aspartame in it (like Lemsip, Berocca, Neurofen Meltlets, Actimel 0% fat drinking yoghurt, sugar free chewing gum, Diet hot chocolate drinks and so many other unexpected items). Before my seizure I would drink at least five cans of diet drink each day, now I watch my diet much more carefully.
I have also got involved with the charity – Brain Tumour Research Campaign (BTRC), a founder member of the umbrella group Brain Tumour Research. My own surgeon, Kevin O’Neill introduced me to Wendy Fulcher who founded the charity after her own husband died of a brain tumour. I felt that it would be fantastic for my own experience to be of help to other people who find themselves in the same frightening situation.
I felt honoured when I was asked to be a trustee as a representative of patients on the board and I would like to help as much as possible to raise finance and awareness so that people realize how brain tumours kill more women under 35 and more men under 45 than any other cancer. It seems to be particularly a young person’s cancer. I myself was only 33 when mine was discovered and a friend of mine was a similar age. I also know of people much younger than me including a little girl who was only 2 years old when diagnosed with a brain tumour.
In 2009 the charity launched the John Fulcher Molecular Neuro-oncology Laboratory and our funds have already been put towards pioneering research. It is exciting how far we have come in such a short time but by spreading the word and making people realize that brain tumours are just as alarming and threatening as other cancers that we hear about all the time. Breast cancer, prostate cancer and cervical cancer are examples of those that hav e the most publicity and whilst they are equally deserving of support, they put other diseases in the shadows. Charities such as Cancer Research UK give the impression that they are representing all types of cancer yet the percentage of money brain tumour research receives is tiny compared to that given to the higher profile cancers.
Our charity has the annual Amber Ball, which is always held in the most elegant venues with a host of interesting people and celebrities kind enough to give us their own support. We have a number of generous sponsors who donate amazing prizes for our auctions so our events are exciting and we are able to raise good amounts of money through these.
Alexandra Drummond – March 2010
