Diane Elliott

Here is my profile, I am Diane Elliott.

A month after Dad died with cancer, I had a tummy bug, which started the day before my youngest son was 10, discovered I was passing blood. Delightful investigations followed, culminating in a colonoscopy and biopsy. I asked for a photo but was turned down! Of course the diagnosis after a few weeks was colon cancer. I'd been lucky though, tests showed it hadn't spread. Worst were the nights, knowing that awful thing was inside me. I wanted that thing gone. The offending colon was removed and I bounced back. When I saw the oncologist after the operation, I was lucky enough to be given tablet form of chemotherapy. Knowing what I know now, was it lucky? If I had the benefit of a TARDIS maybe I'd not have taken them!

The first course of chemotherapy was uneventful, except for feeling tired. I kept examining my long hair for signs of losing it, a rare side effect, but there were none. During my "rest week" with no chemo I got a bad cold. The doctor prescribed something and chemo went ahead as normal as my blood count was ok. Towards the end of that second course I started feeling so tired I felt really ill. Everything was an effort, even my beloved pc stayed off. Friday night my head hurt so badly I couldn't sleep so slept downstairs with my head elevated. I thought it was just my sinuses. That Sunday (13th February) I felt terrible. My husband Ross' friend came round and I lay pathetically on the sofa willing him to go, even listening to the voices was too much effort. Then the sickness and diarrhoea struck. During that evening fortunately Ross became concerned. I was so dizzy I couldn't stand alone, and sounded drunk. Ross called a doctor. At the time I remember wondering what all the fuss was about, my speech sounded normal to me. After examining me I was sent to hospital, another over-reaction I thought. I kept thinking I was wasting their time. I recall laying in the ambulance looking out the window at the different view. In the ambulance I was given oxygen. The nightmare had begun.

Ross followed and spent that night with me in A and E and on the ward being diagnosed. There came the indignity of a catheter but I didn't care. A tube was inserted in my throat - it hurt but kept my airways open. Later I learnt that tube kept me alive and that I wasn't expected to last the night. A scan showed no bleed but another was needed. All night there were involuntary noises and movements. I thought of my 3 sons at home (then 10, 11 and 13), not even knowing I'd been admitted. At this stage I realized I was seriously ill but never dreamt I could die. The morning brought a move to another bed and over-hearing a man complain about the awful noise "that thing" (me) made all night. A nurse filled him in and told him off; I couldn't help it. It made me very indignant to be referred to as that thing.

That day I went down for another scan. There they decided I needed an anaesthetic because I had involuntary spasms. I came to a few days later to a real nightmare. All I could do was blink, no movement or speech. I couldn't even breathe unaided, I just lay there totally still, waiting to die. I even had a "do not resuscitate" order put on me. My wedding ring, my Nan's, was taken off and I ignored the awful pain, as I wanted to keep such a special ring whole for Mum. Mum was upset to see my battered and very bloody hand, she'd have preferred the ring was cut off than me hurt! It took weeks to heal it was so cut up. When they asked if removing it was hurting, a male nurse said I was either a very brave lady or lying! A nurse in intensive care told me to blink once for yes and twice for no as I couldn't nod or shake my head. It is so frustrating to think normally yet be trapped in a body like that, having thoughts but unable to communicate them.

Apparently doctors said I was unlikely to survive more than a few weeks and if I did there'd be no more movement than now. It was as the doctor said a massive brain stem stroke. While unconscious I'd spent a day on life support. At shift change I heard staff say my outlook was bleak. Mum complained and they said they doubted I understood. My family had tested me, asking what my sons would eat for tea and I'd passed! Practice was changed as a result. My sister-in-law came to visit and seeing her red eyes I finally realized the gravity of the situation I found myself in.

I was asked if I minded a tracheotomy but felt too ill to care. I trusted that they knew best and thought it would be reversed in time. Nights were bad; much of them spent awake hoping I'd make it through another night, days snoozing. After about a week they moved me to High Dependency Unit. I must be improving. Every time a patient was dying, an old man, seen only by me, sat by them till they went. One day he looked at my trace and shook his head. I told him to go away, I wasn't ready to die yet; I never saw him again after that day. It didn't occur to me then that I couldn't make a sound yet he understood.

During my spell here I was fed via a tube. Doctors asked if I minded the more permanent peg in my stomach and I agreed. Surgeons came to my bedside and everything blurred; I was sedated.

About this time Ross asked if I wanted to be DNR (do not resuscitate); "definitely not" I said, I'd fight this illness. Can't have been easy to ask but he had to. The order was removed.

I had a dream in which Dad asked me to choose a TV set, and that a certain one meant death. I asked if now was the time to give up; I felt so tired by now. He said yes. All that changed my mind was hearing my son's voice crying. But it was too late by now. Staff referred to me that day as the guest, so was it a dream?

A move came swiftly to the stroke unit where physiotherapists sat me up and stood me using a tilt table. I was moved to a side room when a fellow patient said, "that girl isn't long for this world"; she meant me. Gradually I could move my eyes more so I raised my eyebrows rather than blinking. It took a few weeks to rotate my head, and then I could nod or shake my head.

An awful day Ross saw bleeding from my peg. I got worse, breathing fast and noisy. Doctors were summoned several times and eventually saw me. I was so very tired but once again Ross saved me keeping me awake. I'd gone into shock but several blood units got me out of the woods. Family stayed by my side till the crisis was over.

I met the ward's wanderer. He came in my room one evening asking if I'd broken my hand there; I had to wear a hand brace! There were a few "personalities" on the ward. Don't get me wrong, there were many laughs along the way, like the man who ate a facewipe and complained the lasagne was tough! It was humour that got me through the bad times. I have been known to play the odd practical joke on staff or family, such as waiting till I'd been hoisted to my chair and spelling out on my alphabet board I didn't like these trousers (new ones as I knew full well would mean being hoisted back to the bed to put them on)!

On Dad's birthday, 17 March, I started blacking out as staff washed me. I thought I couldn't die on his birthday and kept awake.

One day the unbelievable miracle happened, my left fingers twitched. Bit by bit, more movement returned to my body. Now it's improved so my left side is normal, and my right side moves a bit very slowly. Then I coughed out my tracheotomy but could still breathe; it had been in for several months but now they removed it. Finally sounds came. My voice box was intact and was something nobody had known till now. This was the start of months of the speech exercises (which I do 4 times a day) before I talk properly. With the tracheotomy out I could eat and drink. I decided I could feed myself so nobody questioned it, I just did.

I moved back on the ward, and to another ward waiting for room to become available at rehab.

I wasn't impressed by rehab for reasons I'll not go into here. Time passed at rehab, me learning to use my left hand to write and type. My peg and catheter were removed.

One fateful Saturday in October, while eating my dinner I coughed; I have asthma but it wasn't treated there. Although saying I was ok, fingers appeared in my throat and I blacked out. It is my opinion that was what forced the food down my throat choking me, but understand that's purely unsubstantiated opinion. Apparently my eyes were rolling after the CPR I needed; I owe a lot to the nurse who started me breathing again. Cue another trip to A and E with blues and twos; that journey is very blurry to me. It was 100% double pneumonia. Here Ross was told with blood acids it is virtually unheard of them coming down and I had just hours. But within hours my blood acids did indeed come down, I'd re-written the medical journals. Different High Dependency Unit, I didn't need oxygen for long.

Back to a ward and quickly I was better. As rehab said I choked I had to have a tube down my nose to feed me. I hated when it had to be changed as it went down my nose into my stomach, it made my eyes water but I didn't complain.

For reasons best known to themselves the rehab centre said I was uncooperative and static, and they had finished; I don't agree. There is nothing I have refused to do, I just want to be better. But it was back to the original hospital and the many indignities of hospital care. The horrible tube was removed and I ate and drank again.

I finally came home the day before Christmas Eve. The house had been converted to give me a room downstairs, equipment had been installed and carers arranged. My sister-in-law raised money for additional items to help me in my battle to walk and for physiotherapy.

I've been told by doctors that the type of stroke I had is rare in someone of my age (I was 38 when I had the stroke) and nearly always fatal. The only identified possible cause was chemotherapy but they can't say for sure.

I've come a long way so far thanks to my determined nature. The situation is now, despite being told I never would, I can stand with the aid of my physiotherapist. I have a team of carers who visit 3 times a day and I can make drinks and cook for myself. Each day I use a mechanical standing frame, and spend 2 hours on exercises for speech, arms and legs. My muscles are stimulated till they move for half an hour a day by a TENS like machine. I am positive one day I'll walk and talk again. How big a part it played I'll never know but hundreds of people all over the world prayed all through for a miracle.

Thanks to Diane for sending in her profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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