In a drawer in my bedroom, there are two letters – one for my husband Wayne and one for our four-year-old daughter, Daisy. When I wrote them, I was facing brain surgery, and none of us knew if I would survive. Even if I did get through it, I could have been left paralysed or unable to talk. While I could still communicate, I wanted to tell Wayne and Daisy to get on with their lives and be happy, but to always remember me. Even now, almost four years on, it breaks my heart to read my last wishes for their future without me.
I’d been with Wayne, 45, a pipe fitter at power stations, for five years when we started trying for a baby. I was working as a beauty therapy tutor at the Redcar and Cleveland College in North Yorkshire, UK, and when I wasn’t pregnant after a year, I underwent tests, but no one could explain why I couldn’t conceive. Fertility drugs and four attempts at IVF in two years didn’t work. Then, miraculously, I became pregnant naturally while we were on holiday in Malaysia. Everyone laughed when I told them if my baby was a girl, I’d call her Daisy Boo!
I had an easy pregnancy and couldn’t wait to have my baby and finally be a family. Daisy was a gorgeous 2.9kg baby, yet within minutes of having her in September 2009, I had the most awful headache.
I left hospital two days after my caesarian section, but by the time Daisy was four days old, I’d never known anything like the pain in my eyes and eye sockets. I put it down to the epidural I’d had. I remembered reading that although rare, a headache – called a post dural puncture headache – may develop after an epidural or spinal injection.
My GP assured me everything was fine but the vision in my eyes, particularly the left eye, was weak. Wayne also noticed the left side of my face wasn’t moving and was swollen so my doctor referred me to hospital. There I was diagnosed with Bell’s Palsy – a form of facial paralysis due to muscle or nerve weakness – and given 10 days of steroids and eye drops. The medication seemed to help and at last I felt well enough to enjoy my baby girl.
However, once the treatment ended, my symptoms – pain and vision loss – returned. It was then I asked the consultant when I would get my eyesight back properly. This must have rung some alarm bells, because I was sent for a scan. I wasn’t worried. I was more bothered about getting out to the shops to buy some new clothes for my baby. Then I looked at the consultant. “We’ve found a lump. It’s a large tumour. We think it’s a meningioma,” he said.
I had no idea what a meningioma was. When told it was a type of brain tumour, I asked if it meant I had cancer. They said they wouldn’t know until they’d carried out surgery. I was in shock. And terrified. I’d just had my daughter and felt my life was just beginning. I didn’t want it all to end. In that second my whole life changed. No longer was I going shopping. I was facing surgery. It didn’t seem fair. I just wanted to survive and be a mother. Shaking, I called Wayne. “I’ve got a brain tumour,” I stammered. He was in tears when he got to the hospital. Over the next few days I sat on our bed at home. “Does this mean I’m going to die?” I sobbed.
At the hospital, I was shown my scan images. I saw the tumour started behind my left eye and went all the way down to the base of my skull, wrapping itself like an octopus around parts of my brain.
Over on the right side, I spotted a separate, similar, smaller grey area. “What’s that?” I asked my doctor, only to be told it was a second smaller tumour. The doctors weren’t as worried about that – it was the big one that alarmed them. They said that if I hadn’t become pregnant, the tumours would have carried on growing at a much slower rate and without me experiencing any worrying symptoms they wouldn’t have been spotted until it was too late, with the potential of me suffering a life-threatening seizure.
“So my baby saved my life,” I gasped. I couldn’t believe something that size was inside my head.
I was scheduled to have surgery to remove the large tumour at The James Cook University Hospital in Middlesbrough in northern England. In the four months – the time required to prepare for the surgery – leading up to it, I had to see bone consultants because my skull would have to be sanded down prior to the operation to make it easier for the doctors to open it for surgery. I also saw eye specialists because some days I could see, yet other days I could barely make out shapes. Those were difficult times but Wayne or his mother was always by my side, helping me look after Daisy. I even did maths and memory tests at the hospital so the doctors could check me after the operation and see if my mental faculties were the same.
Then I did the hardest thing I’ve ever had to do. I’d been warned the operation could leave me paralysed. “We are dealing with the area around the brain and there is a likelihood that something could go very wrong,” a doctor told me. “Part of the tumour is attached to the portion of the brain that controls speech so you could have trouble speaking.’’
I reeled, scared. The operation was extremely tricky because the tumour was around the brain and one mistake could leave me paralysed or, in the worst case scenario, dead.
So I wrote letters for Wayne and Daisy. “I want you to be happy and find a new mummy for Daisy. And please leave a photograph of mine up so you both can see me,” I wrote to Wayne, with tears in my eyes. I ended by saying I would always love him.
To Daisy, I said the six months we’d had together were the best ever. “I’m sure you will grow up to be a beautiful and special girl. Don’t forget to help Daddy to smile by giving him kisses and cuddles,” I wrote. “I will be the brightest star in the sky, always looking down on you, protecting you.” Then I hid the letters.
On the day of my operation, Daisy was in Wayne’s arms as he walked alongside my hospital trolley to theatre at 7.30am. “I’ll be back soon,” I laughed, wanting their last memory of me to be a happy one. Inside I was terrified. “Would this be the last time I’d see them?” I turned to look at them for the last time before the doors of the theatre closed and then I was being asked to count backwards from 10 and everything went black...
I was in theatre for 11 hours, as the operation was more complicated than consultants had thought. They managed to remove 30 per cent of the large tumour, which they saw as a success. Removing any more would be tricky and could affect the brain, they felt. When Wayne and Daisy came in I was wired up to machines. I couldn’t see with my left eye, but with my right I made out their faces, and smiled. Wayne squeezed my hand gently. “I love you,” he said. There was a scar that ran halfway around my head but I rallied enough to go home a week later.
Wayne must have felt he had two babies to look after because he had to wash and dress me as well as Daisy. Something seemed to have gone wrong in surgery – the doctors don’t know what happened – because I’d lost a lot of blood and my ability to talk and walk. A speech therapist helped me talk again. Two weeks after the operation, we had some good news. The tumour was benign.
Slowly, I grew stronger, and with Wayne’s help learnt to walk again, using Daisy’s buggy as a support. That summer, every day for six weeks, I underwent tomotherapy, a type of radiotherapy to shrink the tumour, or stop it growing. The side effects left me feeling as if my mouth was on fire. Unable to eat, I lost weight.
But over the months I recovered, having scans every three months, then every eight months and now I go every nine months. Though the tumours aren’t getting bigger, I still get tired. Some days my legs feel as if they’ll give way beneath me. My brain sometimes takes ages to get into gear and I become frustrated.
I know I’ll have to have another operation to remove the rest of the tumour, but it may be in five years, or 15 – who knows? Whatever happens, I want to leave my mark on the world.
There are 120 different types of brain tumour, so just over a year ago, I launched an umbrella group called MINE, Money Is Needed Every Day to raise funds for brain tumour research. So far I’ve raised £6,500 (Dh39,760) by participating in walks and runs. Last June Wayne ran a half marathon to help. I was so proud. I know I’ve been lucky. I’m 42 now and sometimes wonder what would have happened if I hadn’t had Daisy – would the tumour have continued to grow inside me until it was too late?
I truly believe Daisy saved my life in so many ways. Doctors told us that my slowly growing tumours would probably have remained unnoticed had it not been for my pregnancy. They said I might have had them for 10 years. Daisy has given me the strength to fight on.
I’m so grateful for many things – for my wonderful husband and beautiful daughter, that I’m not paralysed, that I can still see with my right eye, and that I can go with Daisy for a cake and a coffee as she puts it! Having a brain tumour makes you open your eyes and appreciate life.
I live every day as if it were my last so that if Wayne and Daisy ever need to read those letters, they’ll remember me as full of life and fun!
<#comment> Melanie Hennessy, 42, lives in Redcar, North Yorkshire, England. www.justgiving.com/moneyisneededeveryday
