Vivian's story

The testimony below was written by Vivian to accompany Millie Brierley's exhibition 'Care at the Leading Edge', 1999. Her account of her sister's experience with Campath-1H is personal and not necessarily reflective of those of familes with other patients who took the drug.

Before my sister was diagnosed as having Behcet's Disease was the most difficult time in all our lives. Ellen just seemed to be wasting away and either slept because she was heavily sedated with pain-killers, or she cried. The only meal she could contemplate was a couple of spoonfuls of mashed potato; quite often she couldn't keep that down. Drinking was plentiful, we often thought that she would drown.

It's difficult to say what the whole family felt, we were confused and felt helpless and so frustrated that we couldn't help. We did our best, but that never felt enough when we didn't know what was happening. Many times Ellen was admitted to, or discharged from, the local hospital and there were regular visits from the GPs, with everybody trying in vain to help. The constant protests from the family that Ellen was racked in pain, and that she was drinking too much (nobody could have drunk that amount without being poorly) were, it seemed, ignored. We were told not to worry, she was just flushing the infection out of her body!

Thankfully a doctor, almost like an angel, suggested that she had seen something like this before and began to run tests. It was a big relief that somebody might be able to help. I think this cheered Ellen, although she was still in much pain and her excessive drinking meant she had to go to the toilet often. This was very painful for her because it hurt her to walk.

So many times during this period I wished that I could take the pain away and the insomnia which was making her miserable. Once treatment had begun, Ellen and I often went to the hospital canteen. These were lovely times, although I can remember crying all the way home after one visit when she openly said that on previous admissions she believed she had been sent home to die. This is something I will never forget.

The treatment seemed to have little effect on Ellen and we would have loved to bring her home and look after her ourselves. We knew this wasn’t realistic and she wasn’t ready. However, things took a quick turn around when Ellen was transferred to Addenbrooke's to be cared for by Dr. Lockwood. I remember mum and dad coming home from Cambridge, mum crying her eyes out because she had left her so far away. The following day, dad and I went to Addenbrooke's in the morning (mum visiting later). Dr. Lockwood came to talk to us and explained how the disease had progressed in her body. The shock of what was happening was traumatic for us all. It was horrible trying to console Ellen, when all you wanted to do was hit something hard.

Two weeks previously we had been told that she had only two months to live. Now the realization that the disease was affecting and had damaged her brain was terrible. Ellen took so much in her stride - we went home and talked together and spent much time asking why and crying, but she was so brave. I think her shock came out in a different way. She made never-ending shopping lists (for drinks mainly) and needed constant reassurance about who was visiting and when. The tests seemed horrible, the mouth biopsy, the endless blood tests and the lung biopsy at Papworth. We now know they were invaluable, but Ellen sobbing and going through so much didn't make them seem so at the time.

Christmas time was hard as Ellen was discharged for two days - we all wanted to make a fuss of her and make her comfortable, but she had spent so much time in hospital she had become accustomed to the routine and security of the ward. I know it was difficult for Ellen to be at home after such a long stay in hospital, but it wasn't easy for the rest of the family. I think we managed to keep our heads (just)!

Ellen has finished her course of treatment, but living with her is like waiting for a time bomb to go off. We don't know whether the disease will be held at bay or if other treatments will be needed. We cannot thank Dr. Lockwood and his team enough. He literally has saved Ellen's life, something we will all be eternally grateful for... Hopefully, with greater awareness, other patients will not have to suffer as much as Ellen has during the last year.