Personal Account 2003
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by Geoffrey Porter-WilliamsIn 2003 I became almost unable to breathe and was diagnosed with non-Hodgkins lymphoma. Chemotherapy started immediately and has now been completed, and I seem to be much better. The illness had probably developed over several years without anybody suspecting it. For some fifty years I have suffered from eczema and asthma, both of which are caused by allergies. The ointment I was using for eczema should not be used on the face because it may affect the eyes. In 2001 I noticed skin blotches on my face and went to a doctor, who prescribed an ointment that did not clear the blotches. In the autumn of 2002 my eyes did not open fully, and the normal treatments for conjunctivitis did not work. In December 2002 I had breathing difficulties, which I interpreted as a combination of asthma and a chest infection. When I saw a doctor the following month, antibiotics did not ease my breathing. The following week I developed constipation, which for me was a new problem. Between September 2002 and January 2003 I saw four different doctors at Dunchurch Surgery. This was because I was working a long way from home three days a week, so if I needed attention I telephoned on a Monday and asked for an appointment by the end of the Tuesday. This could be arranged, but only for a short slot, and with no choice of doctor. As a result each consultation focused on the most pressing issue, which was the eyes, then breathing difficulties, then constipation, then breathing difficulties again when I could hardly move myself. With hindsight I should have booked much earlier a longer appointment with a doctor whom I had seen recently. At my second visit to the surgery in January 2003, when I was prescribed a treatment for constipation, the doctor suggested that it would be useful for me to see a dermatologist about the skin blotches, but she said that without private health insurance I would be likely to have a long wait. On that occasion there was not time to progress the issue. The following week I struggled to go to work and on my first weekday at home I had difficulty breathing while I was inactive. Late in the afternoon I telephoned the surgery and was slotted in half an hour later and prescribed antibiotics and steroids, and a chemist's shop stayed open to dispense the prescription. I was told to come back for a longer consultation in a fortnight. I arranged an appointment for the Wednesday a fortnight later. The steroids improved my breathing, but it deteriorated quickly after the week's course ended. By the Sunday my breathing was difficult and I had a high temperature. I went to RADOC (Rugby Area Doctors On Call), who use a room at the local hospital. Nothing useful came out of the consultation. In particular I was told that I could not have an X-ray on a Sunday (though the radiographers later told me that they are staffed round the clock). I stayed stable over the next few days. At the Wednesday appointment the doctor said that he thought the breathing difficulties were not asthma and that the skin blotches could be connected with the same problem. He arranged for me to see a breathing specialist the following week and gave me a form for a chest X-ray. He also prescribed more steroids to take until a few days before seeing the consultant. I went to St Cross Hospital in Rugby for an X-ray on the Friday about midday. The radiographer asked me to see a doctor immediately with the X-ray picture, and I was admitted to the hospital that afternoon and stayed for nearly three weeks. Initially I was on oxygen and antibiotics, and my breathing slowly deteriorated. I saw the breathing specialist on the Monday (four days earlier than planned), and he arranged a scan and another X-ray for the Tuesday. By the Tuesday afternoon it took two hours for my breathing to recover from walking without oxygen to and from the bathroom, and I struggled to get into bed to be pushed to the scan. The scan showed a large quantity of fluid round both lungs, but the results were not available until nearly 4pm. The senior house officer who had been given the job of removing the fluid had a dental appointment for 4pm and was not available for the rest of the day. In the evening I saw the consultant and said I was deteriorating, could not eat because eating interrupted my breathing, and would need to sit up all night. He said all the doctors were very busy, but somebody would get to me later. Nearly midnight three senior house officers arrived. One went away, and the other two performed the operation using local anaesthetic in the ward. They removed 1.6 litres from round the right lung. The following afternoon another two litres were taken from round my left lung. I could take exercise again, and sleep lying down. Four weeks later, after my first cycle of chemotherapy, a further 2.2 litres were removed at Walsgrave Hospital. I had blood tests nearly every day, but my diagnosis remained a puzzle for nearly a fortnight. On the first Wednesday morning I was introduced to the dermatologist, who performed a skin biopsy on the Friday. The biopsy results nearly a week later showed that I had lymphoma. On my third Tuesday I had a bone marrow biopsy under sedation at 9am, and not much later was taken by ambulance to see an oncologist at Walsgrave Hospital in Coventry. Chemotherapy started immediately. On the following day I was taken to Walsgrave again for a CT scan, and on the Thursday I was discharged. I had spent nearly three weeks in St Cross Hospital, which is managed by University Hospitals Coventry and Warwickshire NHS Trust, which also manages Walsgrave Hospital. The Trust was awarded zero stars in 2001, upgraded in 2003 to two stars. In the meantime there has been a complete change in top management, though I doubt whether that had any effect on my experiences as a patient. Once I was recognised to be seriously ill, St Cross mobilised all the resources I needed. In less than three weeks I had some attention from eight consultants. There were only two problems with waiting times.
Environmentally everybody preferred St Cross to Walsgrave. There are only two storeys, with gardens between, and adequate car parking. Walsgrave is a building site, with windows locked shut to keep out the dust while a new hospital is built on the site. I noticed one aggressive patient on the ward, who hit a nurse if he had the opportunity. As he appeared to be mentally ill I would doubt if any sanctions could be used against him. During my chemotherapy I had to contact Walsgrave if I had a high temperature. This happened four times, when I had a blood test. On each occasion I was aware that finding a suitable bed would be a problem. On the only occasion when my immune system was seriously impaired, I had a blood test and a huge dose of intravenous antibiotics at St Cross and was taken by ambulance on a trolley to Walsgrave, where I had to wait in a cold and windy lobby until an isolation room was found. Shortly afterwards I was moved to another isolation room in the haematology ward, where I stayed for four days. I had seven cycles of chemotherapy over 22 weeks. The most noticeable change in the ten years since Sheila had chemotherapy for breast cancer is the heavier reliance on nurses. Ten years ago doctors administered intravenous chemotherapy, and there could be long delays. Now the routine is a consultation of five to ten minutes with a doctor followed by treatment for half an hour by a nurse. The process is completed much more quickly. Update July 2004The chemotherapy reduced the size of the lumps in my lungs and removed the skin blotches, but by January 2004 some symptoms of lymphoma were affecting me again. I had treatment with Mabthera (a monoclonal antibody) on four consecutive Fridays in January and February. This was more effective and had only slight side effects. I still have a low count of white blood cells, presumably because there are still cancer cells in my bone marrow displacing healthy tissue. I am about to start maintenance treatment with Mabthera once every three months. This recurring use of Mabthera is experimental. Update September 2005In August 2004 I had an ulcer on my tongue that lasted for six weeks, despite two courses of antibiotics. Blood tests then and at other times showed that I was permanently neutropaenic (with low counts of white blood cells, especially neutrophils). From the autumn onwards I had a chest infection that was persistent and did not respond well to antibiotics but was not incapacitating, and I was working throughout this period. The first apparent signs of recurring lymphoma were in December 2004. Initially this did not change the treatment plan, which was to continue treatment with Mabthera every three months for at least a year. At the end of March 2005 I had a week in hospital with pneumonia, and the urgent review of my treatment plan was begun. I was sent for a CT scan which the radiologist refused to do as he thought it was too soon after being infected with pneumonia. The scan was done ten days later, and I was advised in the following week that most of my internal organs were inflamed and the new treatment plan was explained. It is a combination of Mabthera and two chemotherapy drugs administered normally every four weeks, of which I had had one in 2003 and the other is not often used for lymphoma but more usually for leukaemia. Treatment started the following Monday in May 2005. The chemotherapy drugs are administered on three consecutive days each cycle. I noticed significant relief within two days and lost about six kilos in weight within two weeks as the inflammation subsided. Initially my blood tests at the end of each cycle showed a substantial improvement in counts of white blood cells and neutrophils compared with the previous year. I continued to work until the planned end of my contract in mid June, in the middle of the second cycle. In mid August my treatment was deferred because of a low neutrophil count and shortly afterwards I was admitted to hospital with a very high temperature and a new ulcer on my tongue. An injection boosted my neutrophils and enabled the fourth cycle to proceed. I now have injections each day from day 7 to day 11 to encourage growth of neutrophils. Update November 2005During my fifth treatment cycle I developed shivering after picking blackberries for two hours, but my temperature stayed below 38º and the shivering did not recur, so I stayed indoors for four days and did not contact the hospital at this stage. This was a mistake. When I developed a rash and black blisters on my tongue, I left a message for the haematologist and was called in for the same afternoon. Although I had drunk several pots of tea that day my blood was partially dehydrated and the hospital had difficulty taking blood tests. At least one nurse and five doctors made many attempts on both hands and arms. The best vein was used for saline and antibiotic infusions (and later for transfusions of platelets and blood), and after about five hours enough blood was extracted from another vein to count the blood cells. Other tests including a culture to identify any infection were deferred to the next day, when my feet were used to extract blood. The blood count showed that all types of blood cells were low. The platelets count was 1% of normal. Six transfusions followed over the next few days: one of platelets on the evening of admission, three of blood and one of platelets the next day, and one of platelets three days later. I needed another platelets transfusion a week later, after I had been discharged. My symptoms indicated septicaemia, but the culture test was negative, probably because I had taken antibiotics overnight. My course of chemotherapy was stopped at this point, one cycle earlier than planned, as my bone marrow (which produces blood cells) needs to recover. I was advised that I am the fourth patient at the hospital to receive this particular combination of drugs, all during the last three years. None of the other patients has yet had to return for further treatment for lymphoma. Update May 2007After pneumonia in early February a CT scan showed lymphoma in the lungs and I started a course of oral chemotherapy. The drugs, fludarabine and cyclophosphamide, were the same as I took intravenously two years earlier. I developed in February cold sores on the lips (a virus infection) and a fungus infection on the tongue, and after nearly three months including a fortnight as an in-patient they are diminishing in May. The chemotherapy was stopped after one cycle as too dangerous. Treatment options will be considered when my infections clear. In the meantime I do not have obvious symptoms of lymphoma, as they cleared in the single cycle. In 2007 I have spent about three weeks in the PFI hospital now called The University Hospital, which opened in July 2006. My observations on the PFI hospital are as follows.
Update October 2007I am now in the care of three or four hospital departments:
As a historical accident the same trust (University Hospitals Coventry and Warwickshire NHS Trust) manages both the University Hospital in Coventry and St Cross Hospital in Rugby, and many consultants work at both sites. I only need to go to Coventry (where parking is difficult and very expensive) for the Joint Lymphoma Clinic, for CT scans or other specialised diagnostics and for inpatient treatment (or intravenous treatment for lymphoma if I were still receiving any). There is not the same convenience in other parts of Warwickshire such as Nuneaton or Stratford on Avon. I believe that the so-called reforms going back about twenty years should be reversed. Hospitals should not act as competing businesses but be regarded as collections of services, and patients who need sometimes to go to a regional hospital for tertiary treatment should be able to use their local hospital (or any other convenient hospital or primary care centre) for aspects of their treatment where facilities are available locally. Clearly the different doctors and services involved need to communicate and to make compatible decisions. But policies of the relevant management should not inhibit such flexibility. |
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Sheila
Porter-Williams |