‘Its hard but I’ve had to learn to live with it’
Jane Janet Johnson is 47. In September 2004, she was diagnosed with an inoperable brain tumour. She talks about how living with a brain tumour has affected her and the usefulness of having support from friends.
“The first signs I had that things weren’t right was when I kept zoning out. At first, I wasn’t really aware that it was happening but it was like I was just switching off from the real world. The incidents probably only lasted a minute, and I wouldn’t lose consciousness, but I’d come back to the real world and would have completely lost track of what I was saying and doing.
I put it down to stress. There had been lots of redundancies at work and it had generally been an incredibly stressful year. But I began to be quite concerned when I ‘zoned out’ in the middle of a presentation I was giving. It was obvious to everyone who was there that something wrong.
I went to my doctor about it and he diagnosed stress, so I didn’t worry too much and got on with my normal life.
By the following Easter I wasn’t feeling well at all. Id started a new job and had no energy and was taking lots of antidepressants. I was putting on weight rapidly and wasn’t feeling at all good.
I was also having a number of mystery accidents. I banged my head badly when I was at work and am not sure exactly how I did it. Once I took the dog for a walk and when I came back I was covered in mud. I still don’t know how that happened. I was having memory problems too.
My doctor referred me for an scan and I was also sent to a specialist hospital in London for an ECG. While I was waiting for the results, I went away on holiday. But I was grumpy, didn’t want to join in with anything and just didn’t behave like I usually did.
“On my return, there was a letter waiting which told me I had epilepsy. It was such a shock. I was devastated. I made an appointment with my consultant and had a huge list of questions to ask him, but when I got there, he said, Jane, epilepsy is the least of your problems. You have a brain tumour.
“I didn’t know what to think. It was such a shock to hear those words. There was just this whole mess of thoughts in my head. The consultant couldn’t tell me much as he didn’t know if the brain tumour was benign or malignant. Two weeks later, I was sent for a biopsy.
“I was in hospital for a week and was a complete wreck. They discovered that I had a slow-growing Grade 2 oligodendroglioma brain tumour. But because the brain tumour is deep-set in the left temporal lobe, it was too dangerous to operate on.
“It was a very delicate period. I hadn’t been told where to go for support and I was very down and very angry. Although it was good news that it was slow growing, I just didn’t want to deal with it. I didnt want it in my head and I didn’t want to be in this situation. Eventually, I was put in touch with a support group and that did help. It made me realise that I wasn’t the only one in this situation and that did give me some comfort.
“I started having radiotherapy three months after my diagnosis. I had it five days a week, for six weeks. I was warned that Id lose all my hair, which I did, and I was left with a circle of hair at the top of my head. But the radiotherapy helped. After Id finished the course, I got the news that the brain tumour was lying dormant.
“In September 2010 a MRI scan showed that the brain tumour was growing again. I went into shock when I heard the news.
“I started chemotherapy in October 2010 and had six cycles. I had 11 days of chemo with a four- to five-week gap in between. I felt so ill while it was going on. But while I was in the middle of chemotherapy, I got married to my boyfriend Salvo. Afterwards, my MRI scan result showed that the brain tumour was dormant again.
“My life is definitely shortened by this brain tumour but I’m living to the best of my ability. I have bad pains which move around my body and my balance is quite badly affected. I fall over really easily.
“My writing and spelling is appalling these days and my memory is ruined because the tumour is pressing against that part of my brain. My reading is also affected. I get stuck on certain words, just like a child.
“But I have to be positive. It’s hard but I’ve had to learn to live with it. I didn’t, and still don’t, want to be defeated by it. I have a very loving and supportive husband and family. I also discovered that keeping my mind occupied has really helped and I’ve developed a strong interest in gardening, which I find very therapeutic.
Living with brain turmour is difficult but having the right support from family and friends can make a lot of difference.
“Practical help has been invaluable. A friend filled in all my benefit forms for me and I’ve nominated her to have power of attorney, so she always deals with that side of things. When you have something wrong with your brain, you really need that kind of help.”
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