I am a Brain Tumour Survivor. Diagnosed in 2006 with a Benign Meningioma which was surgically removed successfully. Author of the Ebook - My Brain Tumour.
I live in Cyprus now with my husband and life is certainly good. My life was rocked when I was diagnosed and I was scared but I am an optimistic person and believed it could be overcome.
Life Is Worth Living! Check out my beautiful visitors while I was living on the paradise island of Magnetic. These two and their friends visited daily and their favourite nibble was green grapes.
So I left that lovely island to return home to my lovely island of Cyprus where it is hot, hot, hot.
Having just spent a lovely 6 months living on a paradise island in Queensland I truly appreciate the sayings 'Life is for living' and 'Live life to the full because this is not a rehearsal'.
Loved it, Loved it, Love it!
Now back home in Cyprus where the sun is still shining and life is on a go slow because of the heat - suits me just fine!
Enjoy summer everyone!
If you want to read more about my experience with meningioma symptoms, diagnosis and surgery, pick my book up at:
Any news regarding clinical trials anywhere in the world is always welcomed by any brain tumour sufferer or family of one, especially if that person is suffering one of the most aggressive forms i.e. Glioblastoma Multiforme (GBM).
Glioblastoma Multiforme is one of the most common types of primary brain tumours and also one of the most aggressive. In the UK, the present time of survival following diagnosis is between 12-18 months, a sentence no one wants to hear!
In the US, this trial has already been undertaken and it has shown to significantly extend the life of the patient, without any toxic side effects, to an average survival time of 3 years. Not much more I hear you say but still progress. Any extra time to do what you want and to be with who you want to be with for that extended period will always be a bonus to me if my quality of life can also be sustained.
A leading Neuro-Oncologist from Kings College Hospital will be undertaking these trials and what they entail is using the patients tumour to develop a personalised vaccine that is then injected into the patients arm. In the case of Glioblastoma Multiforme patients, they usually undergo surgery to remove as much of the tumour as possible and then the removed tumour is used to develop the vaccine.
Great news for the UK and for the fight against brain tumours. More research is still required for trials such as this and as we can see from the Brain Tumour UK site, more action is required from parliament as brain tumour research is badly underfunded in the
UK.
For more information on the 'Brain tumour patients and carers join mass lobby of Parliament' story from Brain Tumour UK, visit:
Today, six years ago, a fabulous neurosurgeon was delving about in my head. He successfully found my brain and removed the intruder camping out on top completely.
Six years on, my head still itches continuously and my hair grows thicker on that side of my head but I have no side effects that I know of that I can put down solely to the removal of my meningioma brain tumour.
Can I please ask that as many of you as possible please sign Bill Tarmey's e-petition.
Brain tumours kill more people under the age of 40 than any other cancer, including more children and life expectancy for people with brain tumours has not increased for 40 years; they are responsible for an average loss of life of over 20 years.
This petition calls on the UK Government to take action to:
Improve brain tumour diagnosis.
Enforce best practice in brain tumour care.
Increase the proportion of cancer research spending on brain tumours.
To make a real difference we need over 100,000 people to sign the e-petition.
Please sign Bill’s e-petition here and spread the word.
I just got this news from a friend of mine. If you feel the same way that I do about it, then please post about this to your friends too.
There's no doubt this money can be raised, and all you have to do is pass on this request for people to visit the site and consider donating to this poor little girl - thank you.
The new study suggests that performing frequent X-rays may expose patients to unnecessary risk.
So far, we are told that the biggest known risk for meningioma brain tumours (non-malignant) is exposure of some kind to ionizing radiation of which the most common source is found in dental X-rays.
Now, no one is saying stop going to the dentist but the professionals are suggesting that maybe we have too many unnecessary X-rays as part of our annual check-ups.
Lead researcher and neurosurgeon Elizabeth B. Claus, MD, PhD, of Yale University School of Medicine and Boston's Brigham and Women's Hospital says, " it appears that a large percentage of patients receive annual X-rays instead of every two to three years, which is the recommendation for healthy adults".
This is yet another area where many of us will say, "Hmmm. I had a fair few dental X-rays in my life for one reason or another". So maybe now is time to be cautious. If it's not necessary, why have one? I discussed this with my dentist when several smaller studies were undertaken a few years ago and although she felt the risk was very small, I decided to take the stand that unless it was an emergency then I wasn't having them. The findings of that time were inconclusive but I always feel there is no smoke without fire so decided to leave them out!
This new study, which dealt with a larger group was undertaken between 2006 and 2011 and included at least 1,400 meningioma patients of all ages. It was found that when comparing dental histories between adults of similar characteristics within the group, lifelong exposure to panoramic dental X-rays was significantly associated with the risk of meningioma and interestingly, to me, the risk was shown to be higher in those who received the panoramic X-rays under the age of 10.
The findings were, according to neurosurgeon Elizabeth B. Claus, MD, PhD, that meningioma patients were more than twice as likely as the adults without brain tumours to have had dental X-rays at some point during their lives.
The study appears in the April 10 issue of the American Cancer Association journal Cancer.
I would welcome any comments on a recent post that was reported in the Huffington Post, UK, in January.
The article was about a 18 year old student who was suffering incredible migraines which were so debilitating that she was experiencing problems with her mobility functions i.e. she was having a problems walking and cutting up food.
The migraines became so severe on several occasions that she attended her local hospital only to be told that her headaches were probably the result of study stress, partying too hard or simply being homesick!
After 2 months of repeated visits and increasing problems a golf ball sized tumour was discovered and this female student was finally diagnosed with medulloblastoma - a malignant primary brain tumour.
This young lady had emergency surgery, followed by chemo and radiotherapy. She knew something was very wrong with her body but was having a devil of a time convincing others because of her presumed lifestyle.
Interestingly, the Teenage Cancer Trust also recently revealed stats showing that a quarter of young people who visited GPs with un-diagnosed cancer had to return four times or more before their symptoms were taken seriously.
The Trust's researchers said their findings highlight "the serious issue of delayed diagnosis" in the age group.
I have been on my travels again and pretty bad about updating my blog but, as I have always said before, silences can also be a good thing because it means you are getting on with life and not worrying about the future.
I'm pleased to report I am back on Magnetic Island in Queensland, Australia with my husband who has been invited to do some speaking. I'm beginning to feel like this is my second home. I have never been anywhere that is so quiet and peaceful, lots of wildlife and minimum traffic! This is my latest wildlife photo of a possum that visits most evening and certainly enjoys a banana.
Brain Science Foundation Patient Education Event for Spring. In April, the 5th Meningioma Awareness Day is scheduled for Friday, April 27 and Saturday, April 28, 2012 at the Joseph B. Martin Conference Center at Harvard Medical School.
The event features a full day of educational presentations, lectures, and opportunities to meet others. The Friday evening program will provide one-on-one discussions between patients and medical experts who can answer their questions.
Meningioma Awareness Day brings together physicians and other health providers, researchers, Meningioma patients and their families/friends for mutual learning about the causes, detection, and treatment of the disease. This completely patient-centered event provides information and strategies for coping with this most common form of primary brain tumor.
While the exact program is still in its design phase, some topics covered will include the following themes:
Latest epidemiology research — what causes meningiomas and why? Patient stories and experiences. Treatment options. Complete care—your path to wellness. How the latest advances impact patients. Managing symptoms. Rehabilitation.
Meningioma Awareness Day aims to be a completely patient-focused event that covers all the key topics for patients and their loved ones. Time will be set aside for participants to meet and discuss issues with each other as well as with medical experts.
Online registration is currently open, and more information available by clicking here:
One of my friends half-jokingly estimated that brain tumour symptoms account for far more medical problems than actual brain tumours. As a neurologist, he was referring to the volume of patients who come in afraid for their lives as soon as they get what they think is a symptom of brain tumours. The problem is that almost any complaint, from a headache to partial paralysis of the body and beyond, can be a brain tumour symptom.
Nonetheless, there are many brain tumours symptoms, he explained, that should cause concern. If, for example, you suddenly start to have chronic and unexplained headaches, it is a good idea to see a neurologist. Although there are many things that can cause severe headaches besides tumours, still, they are one of the most common of brain tumour symptoms. Out of all the things that cause headaches, brain tumours rank towards the low end, so you do not need to panic. Nonetheless, it is always better to be safe than sorry. A neurologist appointment will calm your fears, and help you to get rid of your headaches.
Paralysis, trouble swallowing, troubled vision, seizure or other problems like that are much more common as brain tumour symptoms. You see, a tumour can affect any area of the brain. Usually when it does, it will cause some kind of functional impairment. That means that if you are suffering from brain tumour symptoms, you will not be able to do something that you could do before. Perhaps you will have trouble recalling things all of a sudden. Perhaps you will have trouble speaking. Perhaps you will have trouble moving your body. No matter what the issue, all of these can be signs of brain tumour symptoms. And even if they are not symptoms of brain tumours, they are obviously serious enough problems that you should go and seek medical attention.
The thing about brain tumours is that they do have a way of making their presence known. Brain tumour symptoms are generally things that are severe enough that you would go to a doctor anyway. You don't need to worry about brain tumours per se. You just need to be willing to go to a doctor when you start to feel bad, sick, or abnormal. All the studies indicate that, whether it is brain tumours, cancer, or flu, early diagnosis can be a great big help. Make sure that you get treated as soon as possible if you feel unhealthy or have abnormal symptoms. Listen to your body!
For more facts and information on my meningioma brain tumour symptoms, visit:
Hope you all survived the festive season! I would like to share a story with you about a truly inspirational friend of mine; Alison.
Alison and I go back a long way to when we were both bank clerks in Newquay Cornwall and struggling to prove ourselves career wise. We were both pretty strong women trying to make our mark in what was a very male dominated profession.
We became good friends and share a very similar sense of humour and dogged determination. I eventually moved away from Cornwall but we always kept in touch so I was in shock and very sad to hear this time last year (Jan 2011) that she had had a Christmas and New Year in pain, eventuating in hospitalization, to be informed that she had cancer of the lymphatic system and that the mass was too large to be operated on and removed.
Surgery did however follow to decrease constriction of lower organs and this surgery was then followed by 6 months’ worth of chemotherapy.
During this time Alison was stoic in her fight to beat this situation and continued her work as Area Fundraising Manager with the East Anglian Air Ambulance. Alison went through good, positive days and bad, dark days when she felt like she had been swallowed into a black hole.
Chemo was undertaken but unfortunately showed little results and this was followed by high dose chemotherapy, drugs and then further surgery to enable these drugs to be administered. All in all this was a harrowing time for Alison and her family but she battled on using all that determination she used to show in her twenties.
Alison had to go through the trauma of hair loss also but she was not prepared to let this get her down. Determined to make the most of the situation, she warned all her friends that if she was going to have to wear wigs, they were going to be outstanding! So, for Halloween she did her bit.
Good News was the headline for seeing out the Old Year and welcoming in the New Year! 31st Dec 2011: PET scan negative meaning the cancer is no longer active and she is in remission for the moment! The road ahead is still a long one as far as treatment goes but they can now use her own stem cells for a possible transplant and Alison now starts on a rigorous regime of treatment throughout this month (January 2012) to harvest stem cells and continue with high dose chemo.
Alison you are an inspiration to anyone going through a gruelling time and fighting cancer. I am so proud of you and I'm glad you are made of good old Cornish Granite. Don't quit my friend and remember the anonymous quote I forwarded:
"I wish I was a glow worm, A glow worm's never glum.’Cos how can you be grumpy when the sun shines out your bum!" ~Author Unknown~
I wish you a more peaceful 2012 with less pain and fear. Believe in yourself - You are truly a phenomenal woman!
