Kathleen's story

My name is Kathleen. I am sixty-six years old and I have Leucaemies Aigues Myeloides known as LAM or Acute Myeloid Leukaemia known as AML.

How did it all start? For three days, I had felt desperately tired and the fourth morning was even worse. Out of curiosity, I took my temperature which was normal, then I took my blood pressure. As I have always tended to have high blood pressure, I was more than surprised to get a reading of nine. I phoned the doctor, he wasn't there, but his wife answered the phone. He arrived ten minutes later, took my blood pressure, lowered my bottom eyelid and telephoned for an ambulance, then telephoned the Clinique St. Hilaire in Agen (thank goodness I'd chosen to go there, rather than the hospital at Auch, otherwise I would have been sent to the University College of Toulouse.) This was the 25th of June 2003.

My five days at St. Hilaire were a living nightmare. The nurses couldn't get blood samples easily, my two arms from above the elbow to the tips of my fingers were black with bruises. The tops of my two legs were black, blue and green from injections - even now, nine months later, my legs are marked. Then there was a machine to which they attached me with 'suckers'. Every time I moved, I lost a sucker and the machine gave the most horrifying screeching noise - day and night. I don't need to add anything about the food, except to say that it was inedible.

On the fifth day, one of the nurses came in and spoke with a voice full of reverence and told me that I was being transferred to Haut Leveque Hospital near Bordeaux. It sounded as if I was going to Paradise Island, but I still didn't know what was wrong with me and I'm a very curious person.

I was soon in bed in a room on my own. Then a nurse came in to list my jewellery. Wedding ring, couldn't take it off! Two pairs of spectacles, upper and lower dentures, then she asked if that was all.  I said yes, unless you counted my wooden leg.  She started apologising and I started laughing as she sounded just like Queen Ann in 'The Queen's Favourites' by Jean Plaidy. Thank goodness she found the funny side of it - eventually! It wasn't until I read the hospital leaflets that I knew that I had leukaemia.  Strangely enough, I wasn't shocked or surprised. At least I knew what I had to face.

I had several days of tests and it was decided to place a catheter in the vein of my neck (jugular) which meant that blood samples given and transfusions received were painless. My hair started to hurt. I asked if it was possible for an appointment with the hairdresser, but was told that I had far more serious problems to face. Another three days and I was in agony. I couldn't bear the pain of combing it or laying my head on a pillow. I asked one of the male nurses if he had a friend who was prepared to hold me and clamp a hand over my mouth to stop me screaming while he shaved my head. Oh the relief, no pain! I was bald but hair would grow again.

A day or two later, I was given nine capsules to take to eliminate from the stomach and intestines all undesirable elements. In the middle of the night, I needed to go to the bathroom. I can vaguely remember being picked up off the floor and put onto my bed and the following morning, I found that I had the cot sides up and was forbidden to get out of bed. Then followed the most frightening experiences. I couldn't lie down because I had attacks of what felt at the time as if I was drowning. Oxygen masks didn't help. I had a feeling that the staff thought I was putting it on, but I was terrified. Almost immediately I had an unreasonable fear of drinking out of a 'bol' or even an ordinary glass. That problem was soon sorted out by giving me a beaker with a spout in the lid. I knew I had to drink as much as I could, because it was now in the middle of the heat wave and I was eating nothing.

Just before I started the treatment to destroy the leukaemia cells - and everything else, I was put on antibiotics. Two days later, I started to lose my hearing. I asked the doctor in charge to change the treatment, because that particular antibiotic or family of antibiotics always had the same effect. Of course, it was put down to my fertile imagination, the same as all my other little problems but three days later, I was stone deaf.

In the mean time, one of the internes asked me if I was prepared to participate in an experiment he felt might help me. Of course I would. No problem at all. Down came the cot-sides. I sat one side of the bed and he sat the other. I felt a needle going in between my ribs then a gush of warm fluid. He had drained off one and a half litres of fluid from my left lung. He was so happy with himself and I was too. Unfortunately it didn't stop the attacks.  Two days later he came back and tried again but without results. He said he was going to ask a colleague to try something out and promised it wouldn't hurt. This young man came with what I surmised was an ecography machine.  With this he marked the spot. Another litre was drained off. I still needed oxygen, but was now on a 'lunette' which was so much less cumbersome. I asked about the fluid on the lungs at a later date and was told that some patients have fluid in the legs, some in the abdomen, or like myself, the lungs. I suppose it was a sort of complication.

After weeks of blood transfusions, chemotherapy, platelets etc. etc. and X-rays, ecographies and scanners, I was eventually asked where I would like to convalesce - either around Bordeaux or the Gers. It was a silly question. Of course I wanted to be as near home as possible. A very kind assistant social worker who had been of enormous help when my husband died of cancer and had since done all my paperwork including tax returns, was contacted and found me a place in the local hospital of my home town. There were only fourteen beds in the medical wing, the rest of the hospital was for retired people unable to look after themselves and long-stay patients. As soon as I arrived in Reception - on a stretcher complete with oxygen tank, I asked for a cup of tea. After more than two hours in the ambulance in the heat wave, I was so very thirsty. By the time I was in my room, attached to mains oxygen, my tea arrived. I drank it with great enjoyment, then realised it was an ordinary cup. That was the first time for weeks and the last time I needed the 'beaker'. Almost immediately, a male nurse came in with a thermos of tea and a basin of sugar, so that I could drink whenever I wanted. A short while later, I was helped from the chair (I couldn't walk) and put onto the bed. I lay down with only one pillow and never had another attack of breathlessness. It was like a miracle.

I was never told to do anything except to take the prescribed tablets and submit to blood tests, but eventually, I was able to walk short distances and at the same time reduce my oxygen until I was on zero, then I just rolled up the tube and strolled up to the nurses station. A few days later, I asked one of the three visiting doctors if I could have a "pass", which meant that I could go out between two o'clock and six o'clock each afternoon.  I immediately telephoned my very good friend Jean- Pierre to ask if it was convenient to collect me so that I could get my car.  He had taken my car and all my valuables from my home for safe-keeping because my place was completely surrounded by sunflowers and rather secluded. He arrived a few minutes later, having been on duty in the town. In uniform he is very impressive, tall, good-looking and the nurses started to tease me about him being my body guard (He is chief of Police Municipale). I was happy that first day just to drive back to the hospital, because the doctor at Haut Leveque said it was unlikely I would ever drive again. Not only had I proved the doctors wrong, but I had freedom with my four wheels! Also I had ordered a new car just before I had been taken into hospital and it was ready and waiting for me./ That was the 1st September. I was discharged on the 8th September.

How strange it seemed to be completely alone after all the fun and jokes with the nurses and all the staff. I still have to have regular blood tests, depending on which tablets I take. Sometimes twice weekly tests, sometimes once every two weeks. The evening after each blood test the doctor from Haut Leveque Hospital phones me and tells me to continue with the same treatment, to change it or that I need to go to the hospital at Auch for blood transfusions or platelets and occasionally to visit the heart specialist for ECG and ecography. My GP is faxed with all the information so that there is a complete dossier kept locally as well as at Haut Leveque.

I have no family - my husband died nearly two years ago. I have no brothers or sisters nor do I have any children. I don't even know any English people, but sometimes I seem to bubble with happiness. The French people give me so much affection and support and the French Health service is looking after me so wonderfully. I'm sure I wouldn't have been so well-cared for in the UK and I am very grateful.

I lead a perfectly normal life and allow no-one to say that I am ill. I have no pain, I eat normally so how can I pretend otherwise? My hair has grown well, except that I have to keep it fairly short because it's curly on the crown of my head and needs pots and pots of gel to keep it in order. My hairdresser tells me that it will return to normal some time after I finish with the chemotherapy, but that's a small matter.

I look forward to the day when I'm declared "cured" but in the meantime I am enjoying life.

                                                                 Kathleen