The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

 

 

This year makes 10 years since Helen and I launched the Spinal Cord Tumour Forum. I would like to share our story.

 

I had a benign spinal cord tumour removed back in 1989. I was frequently told by doctors that this was a rare condition and I didn’t come across anyone else who suffered from it. I had no idea if the symptoms I was experiencing were ‘normal’ under the circumstances. Eventually, 15 years after my surgery, Angela Collett of the Brain & Spine Foundation put me in touch with Helen who had also had a spinal cord tumour. Both of us were very happy to be able to talk to someone who had the same health problems as our own, and we’ve been friends ever since. We’d like to thank Angela for introducing us as she was the key to everything that has happened since then.

 

We both found it very helpful to discuss our symptoms and the ways that our spinal cord tumours had affected our lives. We wondered if there were other people living in the UK who also wanted to make contact with fellow sufferers and we decided to set up a small website. We then decided that the purpose of the website would be to offer support to people with benign tumours as there were already several cancer support groups for people with malignant tumours.

 

After a while we began to receive a steady flow of emails from people who were also suffering from the effects of a spinal cord tumour and who were pleased to come across our support group. In 2007 we started a message board on the website and were overwhelmed by the huge response. Suddenly this condition didn’t seem to be quite so rare! We also started a ‘Your Stories’ page where people were able to describe their experiences in more detail than on the message board.

 

Between 2009 and 2012 we conducted an annual survey of people suffering from benign spinal cord tumours. Among the questions, we asked what type of tumour they had, whether they’d had surgery to remove it, if they had radiotherapy, details about rehab and what drugs they were taking for pain. The results can be seen on the website.

 

Since 2009 we have held meetings of the Spinal Cord Tumour Forum once or twice a year in London. It has been really great to meet so many of you at last. The first few meetings were just gatherings of spinal cord tumour sufferers so that we could chat to each other about living with the effects of a spinal cord tumour. It’s amazing how much we all have to say to each other! At our more recent meetings we have also invited guest speakers and have reported what they said on the ‘Presentations’ section of the website.

 

In 2012 we were pleased to introduce David Smith as our patron. He is a Paralympic Gold medal winner and has undergone operations for two separate spinal cord tumours. He is an inspiration as his last operation was in 2014 and he is already back training.

 

Helen is now unable to continue her work for the Spinal Cord Tumour Forum, but she remains in touch with what we are doing and often gives her advice. Since then Catherine has been helping, particularly at our meetings, and I would like to thank both of them for everything they have done. I would also like to thank my daughter, Lauren, for her constant support and help.

 

It’s hard to believe that the Spinal Cord Tumour Forum has grown from such very small beginnings to how it is today. I don’t know what the future will bring us. I would like to find ways to raise awareness of our rare condition and, hopefully, there will be more research into its causes and treatment. I’d like to say how pleased I am to hear from and meet so many of you, and I would like to thank you all for your support.

 

Carole