2000 hadn’t been a particularly great year health wise. I seemed to be in constant need of the doctor’s attention; niggling headaches; loss of hearing and earache; sudden vacant spells and feelings of de ja vu. The diagnosis was usually,
“Stress brought on by the demands of a teaching job.”
It took a routine visit to an optician at the beginning of 2001 to find out that the problems were actually caused by pressure on my brain and the optician told me that I either had a blood clot or a tumour. That was on a Saturday and, by the Tuesday, I had been scanned, correctly diagnosed at put in a hospital bed.
My first hospital was The Royal Sussex Eye Hospital where I was given drugs to try to reduce the pressure on my brain before surgery could be performed. It wasn’t long before I was moved up to Hurstwood Park in Haywards Heath where I met my surgeon and the team he would be working with. That was the point that the reality of my condition and the necessary treatment hit me. Until 2001, I had been a young woman who lived a full life: I had a great job; a fantastic social life filled with sport and the normal activities of a single thirty-something and I managed my own home. Suddenly, I was being told that I was going to have to need twenty-four hour care until recovery, that I wouldn’t be going back to work for at least six months and that I could say good-bye to a driving license for the time being.
No-body told me anything about the symptoms I could expect post brain surgery so waking up to a new world was quite a shock for me and my parents who had given up their peaceful retirement to come and care for me. I can only explain the first few weeks as a sequence of baby steps. Everything that had been familiar to me suddenly seemed just out of my grasp and I had to learn how to make things that had been second nature easy again. It was a very frightening time and I often wonder how I would have dealt with what felt like very slow progress if I hadn’t had a home visit from a man who seemed to know what I was dealing with.
At the time that I was in hospital, East Sussex still had a Brain Injury Co-ordinator and he visited me in hospital to talk to me about the services I could access once I was home. It was Mike Hope who gave me the phone number for Headway and who came to visit me at home a few weeks after I was discharged.
I spoke to Mike about everything I was experiencing since brain surgery:
• The memory loss.
• The fatigue.
• The loss of confidence to do the simplest of things.
• The anger I felt and couldn’t control.
• The inability to retain new information.
When Mike told me that these symptoms were common to many survivors of brain injury, I had a huge sense of relief at not being alone and at knowing that my experiences were “normal” for what had happened. Mike also told me not to take his word for it and that I should go along to the Headway Support Group meetings to talk to other people with brain injury.
Oh to be with people who can actually say that they’ve been in your shoes and know exactly what you are talking about! The relief when you talk about a problem you’re having or a sensation you feel and you hear someone else say, “Oh, I had that. It wears off after a while.” Or “Yep, we all find that but there are ways to cope/manage it” was amazing.
And I certainly needed the support of these new friends when I found out, six months later, that the tumour was growing again.
My consultant at Hurstwood Park broke the news to me and I felt like the last six months was going to be repeated again but he moved very fast in organising a course of radiotherapy at the Royal Marsden. This treatment was given with the intention that it would stop the tumour in its tracks. Six years later and I have just had news that the most recent scan shows that the radiotherapy did the job it was supposed to!
The last six years haven’t been easy but they have been made manageable by having access to some excellent services that are in and around our area. Some of these services have been made available via people in the NHS and some have been through word of mouth in the community of survivors. SABIF are working really hard to make sure that everybody who needs them knows who they can access and how to ensure that we are all able to reach our recovery potential.