Andy, 56, was diagnosed with a grade 2 meningioma in January 2017. He believes that he received world-class physical care but that emotional support for people diagnosed with a brain tumour is lacking. Andy recently took part in our Improving Brain Tumour Care surveys, to help support others and raise awareness.
“My symptoms had been building up over some time. In the six months leading up to my diagnosis, I had been having mild headaches once or twice a week which were often accompanied by flashing lights in my peripheral vision. I was feeling tired more often and sometimes got lost whilst driving, even on familiar roads. I then developed a bit of a limp and a feeling of intense itching all over my body, especially when sitting or lying down. Doctors repeatedly told me that it was the result of age, a minor back injury and having recently completed a 10km charity walk.
In the 24 hours before I was rushed to hospital, I had intense headaches, I was repeatedly vomiting, I lost my balance and couldn’t control my left arm and leg, I was confused and I lost the ability to talk. My GP visited me at home and he said that I needed to be blue-lighted to the hospital.
I had a CT and MRI scan and I was diagnosed with a large cranial mass. I was given steroids to and I stayed at the Queen Alexandra Hospital in Cosham for five days.
I had six hours of surgery at Southampton Hospital six weeks later. Within two hours, I was texting people to say that I was OK and, two days later, I was back home on a lot of medication. My final consultation confirmed that all the tumour had been removed. I now have scans every two years to monitor for any signs of regrowth.
I can honestly say that I had world-class treatment from the NHS throughout my diagnosis and treatment. There were no delays and no issues with the physical care I received at all.
However, one thing which was lacking was emotional support following my initial diagnosis. My family and I felt very alone in a scary new world which we knew nothing about. The medical teams typically used terminology which was difficult for us to understand or remember.
The excellent Macmillan nurse, Amanda, we were eventually put in touch with was able to provide that emotional comfort and practical support. It was Amanda who told us about The Brain Tumour Charity.
The Charity, especially its Facebook support groups, helped to address my concerns and were a massive help and source of comfort. The many shared experiences provided real-world guidance on what I was going through and what I could expect in the future.
I vowed then to try to help others affected by diagnosis and treatment of brain tumours who, like me, are often looking for more guidance and support. The Brain Tumour Charity’s survey has given me an ideal opportunity to do just that and raise awareness of the importance of providing the right information for people at the time of utmost need.”
You have the power to create change
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences – good or bad, you’ll be helping to ensure that everyone affected by a brain tumour, has access to the best treatment and care available, no matter where they live or their tumour type.