Margaret's story

This testimony was written by Margaret (real name) to accompany Millie Brierley's exhibition 'Care at the Leading Edge', 1999. Her story is personal and not necessarily reflective of the experiences of other patients who took the drug. It is also not the type of evidence which formed the basis on which Campath was approved for treatment.

The diagnosis of a life-threatening disease is shattering - for the patient and for those close to that person. I suspect, however, that for some, as was the case for me, a diagnosis, no matter how devastating, may come almost as a relief, since it confirms that the aches and pains, the increasing general feeling of weakness and tiredness are very real phenomena, not just imagined.

Following the birth of my second daughter in October 1992, my health declined. I experienced extreme lethargy and my mind was no longer as sharp nor as clear as it had been. Of course this could be explained by the fact that I now had two young children and I was an 'older' mother. However, even when the incidence of inflamed joints became so regular (different joints would flare up every ten to fourteen days and would take 48 - 60 hours to subside) and the pain so excruciating, I stoically put it down to a family history of arthritis. By Easter 1993 my feet had become so sore I could scarcely walk when I first got up. My hands became so swollen I could not even cut a slice of cheese to make my older daughter's lunch. However, I believe I suppressed all these physical signs because of my feelings of inadequacy with regard to caring for my baby daughter. I had so looked forward to her birth, to being able to devote myself to my two children and to my husband, but I saw myself as not being able to cope, as being a failure. The more I thought about it, the more convinced I became that I was suffering from delayed post-natal depression. I was consumed by doubts about my emotional state and concerns about the health of my baby, who had been diagnosed with a hole in her heart when she was six weeks old, and then from the age of six to eight months was failing to thrive.

My health deteriorated rapidly, but it was not until I experienced a rapid weight loss (8 kgs in two weeks), I lost the feeling in the soles of my feet, then the tips of my fingers, the arthritic pain had become so intense and constant, and I finally lost the circulation in my right index finger, that I could no longer suppress the fact that there had to be an underlying physical cause for all my problems. Because of my conviction that these symptoms were 'in my mind' and were merely a manifestation of my inability to cope, I had rarely complained and had certainly never expressed my growing fears to anyone.

Once it became evident that I was ill, however, I was immediately subjected to a barrage of tests - blood tests, circulatory tests, neurological tests, X-rays, a sural nerve biopsy, where the local anaesthetic that was administered was insufficient to numb the agony of having a nerve excised. I was seen by a multitude of specialists and within the space of a few days, my worst fears were confirmed.

I remember sitting with my husband and the immunologist the day the diagnosis was finally confirmed - polyarteritis nodosa microscopica - I felt numb, dazed, detached. For someone who had always considered herself very healthy and capable, being told that opting for the stronger of two treatments would give me a 90% chance of a complete recovery, but if I failed to respond I had a maximum of five years was a devastating blow - and just the beginning of a truly harrowing ordeal.

I am very grateful to my first immunologist for the speed with which he came to the diagnosis and for instituting therapy that was life-saving at the time. I was immediately started on a regimen of high dose chemotherapy. I still remember the knot in the pit of my stomach, the stinging tears and the absolute feeling of despair and helplessness when my husband literally took my baby from my breast - I was still breast-feeding her at the time - and gave me my first dose of Prednisone. Suddenly my life revolved around blood tests, medication, water and food! Because of the possible negative side effects of the cycloposphamide, I had to consume copious quantities of fluids within four hours of taking the medication, and the steroids stimulated my appetite to such an extent that I was always hungry. For some time I suffered from night sweats and would go through three or four nightdresses in one night. At least the arthritic pain in my joints disappeared. However, I was on such a 'high' from the medication that I found it difficult to sleep at night.

It was certainly a very difficult time coming to terms with serious illness and the restrictions that imposed on family life - not that I had either the strength or the desire to do very much - and the adjustments that had to be accommodated. My strength ebbed and I found myself even less able to look after the house and do the cooking than I had been prior to diagnosis. What upset me even more, though, was my inability to look after my children and my husband and to provide a home for them. I was, however, in the very fortunate position of having an amazingly supportive family - husband, parents and brother - and my parents simply moved in to assume my role and responsibilities.

A number of images will always remain indelibly etched on my memory. In the early days after diagnosis, when I was feeling particularly weak and vulnerable, my husband insisted on getting me out of the house. Because of the risk of infection I could not go into any air-conditioned buildings. These ‘outings’ were restricted to gentle walks outdoors, often at a beach or somewhere similar where I could breathe in fresh air and escape the confines of the house. The reality of my situation came home to me as I sat on the beach one day, watching my husband and children at the water’s edge. My husband held our baby daughter, letting her feel the sand between her toes and the waves splash her tiny feet and legs; our older daughter was wading through the water and, as young children are want to do, was getting increasingly wetter. The scene was idyllic - late afternoon, a beautiful pale blue wintry sky, wisps of clouds, boats moored everywhere, and a small family enjoying the beauty of the natural surroundings. Yet I saw it through a mist of tears - my family, but I was not with them, I was detached, an onlooker. At that moment I determined that no matter how weak I was, how ill I felt, I would always keep fighting. I believe firmly that one must be of strong resolve, have a positive outlook on life, and above all, must never give in. There were days when that was easier said than done, days when it was obvious that the medication was unable to halt the rapid spread of the disease, days when I was so ill I would look at my family and think, 'I’m sorry, but I cannot fight anymore.'

One of my worst fears was realised in August when I was diagnosed with herpes zoster - shingles - in the trigeminal nerve on the right side of my face, which affected my eye. Not only did I have to visit the immunologist and the pathologist, I now also had to see an ophthalmologist. At this time I was on various types of medication and eye drops eleven times a day. Little wonder I needed to keep a diary to record times, medications and dosages!

Following the normal protocol for the treatment of such a disease, after a period of approximately six weeks an attempt was made to reduce the dosage of Prednisone. Unfortunately this was unsuccessful. It was obvious that the high doses of Prednisone were only just managing to keep the disease in check and a small reduction was sufficient to allow the disease to flare up. In retrospect I believe I went into a state of denial at this time. My body was failing me, but I wanted so much for it to respond to the treatment that I used to tell myself that the tingling I felt in my arms and my legs was nothing. However, the symptoms could not be ignored and it was not long before I had to acknowledge that the neuropathy was spreading.

Of course, this was confirmed by poor blood test results, elevated antibody levels and a significant deterioration in my condition. The medication was increased again and I continued to watch my blood test results. My physical condition was quickly declining, I was becoming increasingly weaker and I was putting on more and more weight. What little hair I had continued to fall out. I suppose I was fortunate that I had such thick hair to start with, so I never did become completely bald. I always had a soft, downy covering of wispy, white hair. My younger daughter had never attached herself to a favourite toy - no teddy or other stuffed animal appealed as much as Mum’s hair. She used to run her tiny fingers through my hair - and pull it out by the fistful! I could only laugh and shed a few tears.

While not a medico, under the tutelage of my husband and out of sheer desperation and a thirst for information, I became expert at reading and interpreting pathology results - white blood cell counts, red blood cell counts, biochemical test results, rheumatoid factors, ESRs, C-Reactive Proteins, antineutrophil cytoplasmic antibodies (ANCAs) and later T-lymphocyte counts and Proteinase 3s. I would eagerly await the delivery of these reports and pore over them, hoping to detect even the slightest improvement.

I was on an emotional roller coaster - one week my spirits would soar, as the blood tests indicated that things seemed to be improving, the next my emotions would plummet as one test or other would hint at lurking problems. I had been diagnosed on 2 July 1993 and from then on I had to deal with a constantly changing body. Each time I looked in the mirror, the reflection confronting me was one which became increasingly less familiar. My emotions and feelings were mine, but my strength had deserted me and my body was also failing me. The changes were so rapid that it was difficult to comprehend. Within the space of a few short months my facial features had become unrecognisable to all except those close to me who saw me virtually every day. I changed from a grey-haired forty-year old to an elderly, stooped, grossly overweight eighty-year old, with thin, wispy, white hair and a dowager's hump, someone who could little more than shuffle around because of the increasing steroid myopathy caused by massive doses of Prednisone. As a result of the medication, my mind was also beginning to fail me. I was unable to sustain or participate in a logical, intelligent conversation, I would often have to search for words that had previously never eluded me, and I found that I could not complete sentences, purely because I could not remember what I had wanted to say. I began to think that I would never be able to function on any sort of intellectual level again. I was certainly concerned, but at the same time this concern was curiously tinged with a degree of acceptance and resignation. I knew I had no choice but to be on the medication – it was my only chance of survival – yet at the same time, it was dulling my thought processes and causing such negative side effects on my body.

There were other incidents that somehow served to underline for me that I had little control over things that were precious to me. It was extremely difficult at times when my children were sick with minor ailments, but I could not comfort them and could only wave from the doorway of their bedroom. Of course, they were too young to understand the implications of my immune suppression – they cried and I cried, but there was nothing else we could do.

As 1993 drew to a close, I was once again on a reducing dosage of Prednisone. I willed my body to respond to the changes, but again it was to no avail. The neuropathy spread as the dosages of Prednisone fell. I developed a ptosis in my left eye. More tests were ordered and after eliminating other possible causes, it was established that the polyarteritis had spread to and was attacking my cranial nerves. By this stage I was numb from the tips of my toes into my back and from my fingertips into my shoulder on my right side, and from the tips of my toes to my mid-thigh and from my fingertips to my upper arm on my left side. While I had maintained a positive outlook throughout the preceding months, this setback was a devastating blow to my confidence and I must admit that for a moment, I questioned whether I had the reserves to overcome any more obstacles.

By the beginning of December we were desperate. I was back on high doses of medication. Almost all options had been exhausted and the prognosis for a future with my husband and my two young daughters, who were now almost 6½ years old and 14 months, was looking extremely bleak. As one not so compassionate doctor expressed to my husband: 'It's tough, she's one of the ones who doesn't respond!'

As a last resort, my doctors in Sydney had agreed to try a course of plasmapheresis, which had met with a degree of success in the treatment of unresponsive vasculitis patients in Britain. Colleagues in London had sent their protocol to my husband. However, my doctors in Sydney were unwilling to attempt such a radical regimen in view of the extremely precarious state of my health.

The nursing staff in the Apheresis Unit had never encountered anyone with polyarteritis. They treated me with extreme courtesy and kindness and looked after me very well, but they were oblivious of the severity of the disease and how ill I was. To their credit, I must say that a number of them went away and read about polyarteritis. They returned the following day with a myriad of questions for the patient.

The procedure for plasmapheresis is similar to that used for renal dialysis. The patient is hooked up to a machine and the blood is pumped out of one arm. The plasma is removed and replaced with donor plasma into the other arm. The process lasts for three to four hours, but my veins were in such poor shape that they would collapse and alarms would sound on the machine as it shut down. It would then have to be re-started or new tubing used and the whole process reset. It generally took close to five hours.

On the second day I bravely declined the use of a wheelchair to take me to the main hospital entrance. That would have meant giving in to this wretched disease and I wanted to prove that although I was very weak, I was still in control. However, I was indeed too weak and collapsed in the bathroom, with both arms severely bruised from haemorrhaging. After every hospital visit - there were eight in all leading up to Christmas and New Year - I left the Apheresis Unit with ice packs on both arms in an attempt to reduce the bruising. Either my husband or father sat with me during the procedure, which was a great comfort. As much as I would have liked, I could not turn off and have a sleep. I needed to keep up a regular pumping action with one hand while the other hand had to be kept perfectly still, so although there were often no words exchanged, it was good to know that someone was with me.

I realised what little control I had over what was happening to me during one such visit to the Apheresis Unit. The blood test results were very poor and a huddle of doctors at the end of the bed confirmed that I would need a transfusion of packed cells and coagulation factor. The risk of contracting Hepatitis B or C from such a transfusion could not be eliminated and I was asked to give my consent for the transfusion. Fortunately my husband was with me at the time and he was able to reassure me and told me that I really had no choice.

One very valuable lesson I learned during the course of my illness was that the insight of children can never be underestimated. Although my older daughter was aware that I was ill, we had never explained the extent of my illness nor our growing fears for my future - a six year old should be spared as much as possible - yet she was perceptive enough to realise how grim the situation was. Even my baby sensed a difference and her behaviour towards and her play with me were particularly gentle. Both my daughters have always been dynamos, but they would wait for me to come home from hospital after the plasmapheresis so that they could sit or lie on the bed with me, simply stroking my forehead or gently taking my hand and speaking in a hushed tone. I treasured these quiet times together - they were very special, precious moments.

Some doctors, although they have come to the limits of their knowledge or expertise, are not prepared to admit that they have no solutions and are reluctant or perhaps too sceptical to refer their patients to someone else or to sanction that patient’s right to seek help elsewhere, especially if that entails involvement in a research program. At the time I was too ill to take in all the ramifications, but in hindsight I am very upset and angry that a doctor can play God and label a patient a statistic before the fight has been lost. While ever there is even the slightest chance of survival, the slightest glimmer of hope, you cling to that.

Even before the plasmapheresis my husband had determined that he needed to take matters into his own hands. He was unprepared to accept the verdict that had been brought down, that there was nothing more we could do or try, that we had to accept the inevitability of my fate. From the time I was diagnosed, he would sit on the Internet in the evenings, scouring Medline in a desperate search for something that might help me. Initially it was just to familiarise himself with current research into vasculitis, but as it became apparent that I was unresponsive to conventional medication, it became a search for my survival. My husband identified a research programme in Cambridge. In an article in The Lancet in June 1993 Dr Martin Lockwood and his team had reported on four patients whom they had treated with monoclonal antibodies directed at the problematic immune cells. The results looked promising. Through colleagues and friends at Great Ormond Street Hospital for Sick Children in London, my husband established contact with Dr Martin Lockwood. After patiently listening to my husband relate my medical history, Dr Lockwood said he believed he could help me and asked if we could be in Cambridge at the beginning of January. That phone call took place on 20 December 1993 and just a few hours later we were booked on a flight to London on 8 January 1994.

I felt a great deal of relief once I knew that we were going to Cambridge. Quite a number of people have since commented that I was very brave to leave my family and go to England and become part of a research programme. However, it was not bravery - I had no choice! I had never questioned: Why me? Such questions bring nothing and simply have no answer. As my husband always said, the disease was non-negotiable. It had to be dealt with and the last chance we had was to go to Cambridge.

I was so ill that the preparations washed over me. Christmas and New Year were very quiet. I did wonder whether these would be the last that I would spend with my family, but the strength of my conviction that I would recover and my optimism did not allow me to dwell too much on these thoughts. I had faith and confidence that Campath would be able to cure me.

Our departure from Sydney was dramatic to say the least. I had been suffering agonising pain in the left sacral area for a number of days, but it was not until the day prior to our departure that I was diagnosed with a far more severe bout of herpes zoster.

Sydney was also in the grip of some of the worst bush fires of the 20th century. On the same day our home was engulfed by clouds of smoke from nearby fires, but fortunately we were not directly threatened. Nevertheless, it made our farewells to our daughters and my parents, who were looking after them, all the more difficult. How does a mother reply to a bewildered and frightened six year old when she asks, 'Mum, you’re not going to die when you go away, are you?', an outcome that was a very real possibility. And how does she leave a fourteen month old baby, a child so dependent on her mother, yet who, through her mother's illness, had been denied much of that closeness and bonding, who had only ever known a mother unable to care for her properly? And how does a daughter say goodbye to her parents who had been so caring and supportive for the previous forty years and who quietly and without fuss stepped in when most needed. Tears streamed down my face as we drove away from our home, already desperately missing my children and family, not really knowing what lay ahead, and with the uncertainty that maybe I would not come home.

Within nine hours of landing at Heathrow I had been admitted to D10, the Infectious Diseases Ward at Addenbrooke’s Hospital in Cambridge. My husband was with me, but there was still an indescribable emptiness - I was feeling extremely vulnerable, apprehensive and somewhat dislocated, I was so far from home. Dr Lockwood came to introduce himself and to meet his new patient and her husband. Instantly our anxiety was dispelled. Dr Lockwood inspired quiet confidence and both my husband and I felt at ease with him. What impressed us from the outset was that he never lost sight of his patient as an individual. He was concerned not only with my physical and medical well-being, but also with my emotional state. He treated me with dignity and respected my need and right to be informed and to question, carefully explaining in detail the course of action that he would take. There was never any feeling that he did not have the time or the inclination to answer the questions and concerns I had, nor the queries of my husband.

Before any treatment could commence I had to undergo a series of tests to establish my suitability to receive the monoclonal antibodies. I was injected with radioactive iodine and then on two consecutive days was given a white cell scan in the Nuclear Medicine Department. Chest x-rays, nerve conduction tests and the sural nerve biopsy were repeated and I also had countless blood tests and an echo cardiogram. My husband and I were most relieved when Dr Lockwood confirmed that I could become part of the Campath research trial. However, the commencement of the infusions of monoclonal antibodies could not be risked until the herpes zoster was under control, so I was discharged after almost a week.

In the time between the two periods of hospitalisation I grew even weaker. We were staying with friends in a village just outside Cambridge and most of the time I could only crawl up the stairs on all fours. My metabolism had also undergone quite a change and I was finding that many foods were disagreeing with me, to such an extent that more and more frequently I would be doubled up with severe abdominal pain.

Once the herpes zoster was under control I had to wait for a bed. The hospital was on "blue alert". There were no beds and my husband was becoming quite alarmed and uneasy as he watched my health deteriorate even further. The waiting seemed interminable, but at last a phone call came and I was re-admitted to hospital on 26 January, Australia Day.

Once in hospital again the decision had to be made as to whether a cannula should be used for the infusions or whether a central line should be surgically inserted. In view of my severe immune suppression and the fear of infection - I developed a minor infection in my leg after the sural nerve biopsy - it was decided to use a cannula.

It was a mixture of relief and trepidation that accompanied the first infusion of Anti-CD52 monoclonal antibodies [Campath-1H]. I was hooked up to the infusion for almost five hours and I could only hope and pray that the innocuous-looking, clear fluid that was going into my hand would bring the hoped-for cure. Before each infusion the vein would be flushed out with saline solution and hydro cortisone. By the fourth day this process became so painful that the cannula had to be removed and a new one inserted into my other hand.

I could not do very much during the infusions. I would read, write a few letters when the cannula was in my left hand or watch television, which tended to be a rather mind-numbing exercise. At least it helped take my mind off what was happening and the thoughts, hopes and concerns that occupied my waking hours. I enjoyed receiving phone calls from my family and friends in Australia and also in England. Whenever my older daughter wanted to ring me my parents encouraged her. She never spoke for particularly long. For her it was just reassuring to hear my voice and to know that Mum was still all right. I must say I appreciated these calls from home. I, too, needed to hear my family’s voices and to know what my children were doing and that their lives were continuing with as little disruption as possible.

There were a few surprise visits and phone calls, but mostly my days were spent very predictably and quietly. I looked forward to my husband’s visits each day, and also to those of Dr Lockwood who kept us closely informed of my progress.

I was ecstatic when on 28 January, the second day of my treatment with Campath, I was taken off Cyclophosphamide. The relief I felt was immense - my hair could grow back, perhaps this time without all the white hair! - and I no longer had to drink so much fluid to flush the drug through my system. And on 30 January I once again started on a reducing dosage of Prednisone, which was to continue until 20 December [1994] when it was finally withdrawn completely. For me, these changes in medication, together with the Campath, marked the turning point in my road to recovery.

After five days of Anti-CD52 infusions I then received infusions of Anti-CD4 for another five consecutive days. The blood tests were very encouraging. On 1 February they showed that the lymphocytes had been totally depleted and on 4 February my ANCA was negative. I cannot say that I was already feeling stronger - in fact I was probably at my weakest, a fact to which the medical photos taken during this stay at Addenbrooke’s attest. It was certainly not a spontaneous recovery or rejuvenation, but my feelings as I was discharged from hospital after ten days of infusions were buoyed by Dr Lockwood’s optimism. I was delighted to move beyond my four sterile hospital walls (these had in fact been adorned with faxes and drawings from my older daughter), but it was also very much a testing time. While in hospital I had felt protected, knowing that I was receiving the best of medical care and a revolutionary new treatment that had the potential to restore me to health and a normal life. Now it was up to my body to respond appropriately. If positive thinking were to play a role in this, then I certainly had a distinct advantage.

Although still very frail, I felt I had been given a new lease on life. I drank in my surroundings, I rejoiced in my husband's company and I dared to think about the future - perhaps somewhat prematurely, but with a renewed confidence and conviction. When not visiting Dr Lockwood at Addenbrooke’s, my husband and I ventured out on very staid, serene walks around Cambridge. Snow and bitter cold could not dampen my enthusiasm, just the limits of my strength. As is understandable, after being away from a young family for a considerable period of time we were particularly anxious to return home. However, that could not be contemplated until Dr Lockwood was sufficiently satisfied that the monoclonal antibodies were working effectively. After two weeks of close monitoring and outpatient visits to Addenbrooke’s Hospital, the blood tests were so reassuring that it was considered time for me to go home.

Our arrival in Sydney was very emotional. There was elation that we were home, but distress and disbelief because I had deteriorated even further during the six weeks in England. Although they knew my recovery would not be rapid, my parents had expected to see their daughter more like her old self. Instead I was very fragile, pale and still had only a fairly tenuous grip on life. My older daughter was very quiet, smiled a great deal and would not leave my side. Some weeks later she said to me, 'Mum, when you went away, I didn't think I would ever see you again.' My younger daughter was sixteen months old when we came home and her reaction was predictable. Six weeks in the life of a baby are considerable and it took just a little while for her to be comfortable with us again.

On our return the results from the first blood test were most alarming. Both the C-Reactive Protein and the ESR were inordinately high. However, a call to Dr Lockwood in Cambridge put our minds at rest when he reassured us that this was in fact quite a normal reaction to having received Campath. This was confirmed in the following weeks when both readings steadily dropped until they were well within normal ranges. Since then they have fluctuated, but tend mostly not to be a problem. Life was very much as it had been before we went to England, still revolving very slowly around weekly blood tests. However, almost imperceptibly I started to regain my strength. It was an incredibly slow process, but very gradually I was realising that I was capable of doing a little more. Because my immunity continued to be so depleted I still avoided air-conditioned buildings and being anywhere amongst large groups of people, but I made the most of every opportunity to enjoy my family and friends and to do things with them.

We were in very close contact with Dr Lockwood. All blood test results were faxed to him and we spoke on the phone regularly. It is not everyone whose physician lives on the other side of the world. After my return from England Professor Graeme Stewart became my immunologist in Sydney and he worked very closely with Dr Lockwood and my husband to monitor my progress.

The dosage of Prednisone was being steadily reduced and to my great joy, there were no signs of recurring neuropathy. However, at the beginning of June we were distraught. The ANCA test was positive again, a possible early warning that there could be a recurrence of the polyarteritis. The test was repeated to eliminate the possibility of an error having occurred, but the positive reading was confirmed. Professor Stewart was concerned at the development and chose to use very high doses of gamma globulin to prevent a relapse.

A personal application on my behalf secured the needed amount of gamma globulin. The initial treatment in such an instance is to administer intravenous immunoglobulin, which in my case was given over five consecutive days. On the fifth day I was extremely ill, with an excruciating headache and vomiting. This, I was told, was a normal side effect of IV immunoglobulin. It was quite a traumatic time, because all the uncertainties I had already confronted re-surfaced and the confidence in my body that I was regaining was shattered. Dr Lockwood did tell us that he had a number of patients on 'maintenance' IV immunoglobulin every six to eight weeks, and that was keeping their vasculitis in check. Fortunately I have not needed that. My ANCA has remained positive, but I have no clinical signs of the disease.

From that time I have continued to improve. As already alluded to I was taken off Prednisone on 20 December 1994, twelve months to the day that my husband had first spoken to Dr Lockwood. In the twelve months following the treatment in Cambridge my body went through many significant changes. While my ANCA remained positive, my CD4 count increased from 0% to 4% and the other inflammatory markers stabilised to be generally within normal ranges. My lymphocyte count moved into the normal range, as did my very low haemoglobin.

There were also many visible changes. My hair had started to grow - admittedly it was still white, but at least, after not having been near a hairdresser in over a year, I needed to have my soft, white down trimmed. My cushingoid features began to disappear and a more youthful figure began to emerge. It was truly miraculous watching the years fall away. There are not many people who can turn back the clock so dramatically. Within the space of those twelve to eighteen months my whole being was rejuvenated - I was no longer an elderly woman, but a youthful 40 year old. A close friend from Cambridge, with whom we had stayed during our sojourn there, has commented that I am the only one among her friends of whom she can honestly say that I look younger each time she sees me. Such comments do wonders for my self-confidence. I still had to take care and do things slowly. My strength was returning, too, but it took a long time to regain the lost confidence in my body.

It was not until January 1997, three years after Campath, that my immunity registered at the lowest end of normal - for the first time since the treatment my CD4 count had reached a total of 500. That was a day for rejoicing, but also for quiet reflection - there were a few tears shed - tears of relief, but also tears for what had been and what nearly was.

Now five years later, my blood test results are generally consistently within normal ranges. There have been occasional lapses, when my CD4 count has dropped significantly below normal, but there has always been an explanation - a cold or some other viral infection. I am regaining confidence in my body, but still do not allow myself to become complacent. The slightest twinge will sound alarm bells and send me scurrying for a blood test. I am still being monitored closely and regularly, but my visits to the pathologist are now spaced at acceptable intervals. The correspondence and contact with Dr Lockwood continue and I know that if the need ever arose, I could be on a plane to Cambridge within twenty-four hours.

Last year I ventured back into the work force for four days a week. I have now returned to full time employment in a highly intellectually stimulating environment that can only be described as frenetic. For someone who doubted whether she would ever be able to work in such a position again, this has been a most wonderful and welcome boost to my confidence and self-esteem. Physically I look better than I have for many years. I love my work, but most particularly I appreciate being with my family.

I have few legacies of those five years - some ophthalmic problems as a result of the herpes zoster in my right eye and the need to wear glasses, numbness in my right foot from the sural nerve biopsy, some areas of numbness in my legs and fingers from the neuropathy, a tendency to develop pins and needles and lose feeling in my fingers and toes in particularly cold weather or if I sit in one position for too long, and an intolerance of quite a number of foods. Emotionally it has had a profound effect on my life. Such an experience cannot leave you untouched and it forces you to re-assess your life and priorities. The impact of illness is felt not just by the patient, but also by those close to that person. I learned the true value of genuine friends both at home and in England - those close friends who were always available and who intuitively knew when and how best to lend assistance, who provided loving support and encouragement to my husband, children and family, who met us at Heathrow and drove us to Cambridge, and who opened their homes to us in Cambridge and in London.

My older daughter was greatly affected by my illness. I can barely begin to describe how deeply I was touched when she was asked to give a speech about a brave person. She chose not a famous person, as all her classmates had done, but her mother.

I owe my present well-being to two men, my husband, Martin, and Dr Martin Lockwood. Throughout my ordeal I drew tremendous strength and courage from my husband’s optimism, from his determination to find someone who could help me and from his loyalty, care, devotion and love. Dr Lockwood was the person to whom he turned in our greatest need. That I am still here today is a tribute to Dr Lockwood’s quiet, generous support and his genuine friendship, and also to his dedication, inspiration and medical expertise. I have nothing but praise, respect and admiration for Dr Lockwood and his research team, for the work they are doing and for the hope they are bringing to many people who would otherwise have had none.

I take nothing for granted. I am a miracle of modern medicine. Not a day goes by that I am not mindful of how blessed I am and the debt I owe to Dr Lockwood. Yet how does one say 'thank you' for a life restored to good health, for a mother returned to her children, for a family given back its future? That I can see my children as they grow, that I can support my husband and share in his triumphs and achievements, that I can simply spend time with those who care and those I love - all this is my greatest joy, and the greatest gift that I could have ever received. For this Dr Lockwood will always have my deepest, most sincere gratitude.


As I re-read the thoughts I committed to paper some 15 years ago, I am overcome by a wave of mixed emotions. My strength and resolve were certainly tested during my illness – the emotional upheaval, despair, uncertainty, and then hope, defy description. Now, 20 years on, I have lived and continue to live an incredibly rich and most fulfilling life. Apart from two further bouts of herpes zoster (shingles), I continue to be in very good health. I am on some prophylactic medication, as well as eye drops for ongoing iritis. The miracle worked by Dr Lockwood and Campath-1H did give me back my life and my future.

In July this year I turned 60, a milestone that all those years ago I could not bear even to think about, it seemed so unlikely. It was a time to pause and reflect on ‘what might have been and what nearly was’, as well as a time to appreciate how blessed I have been to have the unfailing support of close friends and family, and the unswerving loyalty and unconditional love of my immediate family. The celebration was joyous and shared with those closest to me. It was, however, also tinged with sadness that Dr Lockwood was no longer with us to be able to share in my joy, for it is to Martin Lockwood and his dedication and compassion for people in my situation and his research work with Campath-1H that I owe my life.

These photos show how Campath-1H improved Margaret's facial health. They were taken before and after treatment. Credit: Geoff Hale.