In 2005 I was internally referred by Endocrinology to Haematology at my local hospital. In fact I got an appointment at 10.20 at the Haematology clinic by post, so I went along not knowing what to expect. I was eventually called in after the waiting room had cleared at about 12.45. The doctor started talking about stuff, and I just looked at him blankly. He stopped and said ‘You don’t know why you are here, do you?’ I admitted this was true.

It turned out a routine blood test had shown an unusually high level of eosinophils in my blood. This was ‘normally’ caused by some kind of parasite picked up in tropical climes, or some kind of fungal spore, and was treatable with a course of  medication. I had never been further east than Greece, or south than the Canary Islands so this ruled out the first cause of eosinophilia. I was then referred to another consultant at Ealing Hospital, apparently the national expert, and fortunately for me less than 10 miles away in the next London Borough. I know a lot of people have to travel vast distances to see specialists in specific and uncommon conditions. My own specialist has patients travelling from up to the Scottish Borders.

She determined that without parasitic origin, then my eosinophilia was a genetic predisposition, and that the high level of eosinophils made my condition hyper-eosinophilic syndrome. Essentially, eosinophils are part of the body’s response system to allergens, and in my case this response had been turned on and would not turn itself off. Eosinophils are a type of protein, and when not responding to allergens, have nothing to do and become deposited in soft tissue and joints. It can be fatal if not controlled because if deposited in the heart and lungs they become compromised and prone to failure.

It was suggested that the chronic pain I had suffered going back to the early 1980s in my arms, wrists and elbows, and for which I had had many largely unsuccessful courses of physiotherapy, painkillers and anti-inflamatories, and surgery on one elbow, might have been caused not by repetitive strain injuries, but by deposition of eosinophils in soft tissue. Or, at least this may have been a significant contributory factor.

A forensic trawl through medical records at several hospitals, showed that in 1999 my eosinophil levels were double the maximum of the ‘normal’ range, but this was the earliest record that had been kept or could be found. By the time they were noticed my eosinophil levels were eight times ‘normal’ maximum.

From May 2006 onwards I was treated by both Ealing Hospital and my local at Hillingdon Hospital. The consultant at Ealing Hospital treats me and at Hillingdon Hospital they manage my condition. Essentially, Hillingdon Hospital pays for the medication, which my local pharmacist refused to stock on the basis of cost.

Until January 2007, I was listed as having hyper eosinophilic syndrome. In January, I noticed that the blood test referral listed chronic eosinophilic leukaemia  as reason for testing. When I queried this I was told they were almost the same thing, however, it was decided that I had had it so long that, chronic eosinophilic leukaemia was more appropriate.

Chronic eosinophilic leukemia (CEL) is a disease in which too many eosinophils (type of white blood cell) are made in the bone marrow. The disease may remain the same for years, but it can progress to acute leukaemia.

Since, June 2006 I have been treated with Glivec, which is also used for chronic myeloid leukaemia. I have blood tests at least every six weeks (turn about at the two hospitals) and I have given four bone marrow samples in the last 2 ½ years. The blood samples are used to fine tune the medication, which has varied between 100mg and 400mg per day.

The listed side effects of the medication, are much the same as the diagnostics for chronic eosinophilic leukaemia itself. So it is difficult to determine how effective the treatment is, other than at the sub-atomic level there is no evidence of the defective gene. The glivec controls it. Unfortunately, nobody knows what the long term effects of glivec might be, although I have been able to discover that for some people with CML, it does not continue to be effective. The main side effect for me has been weight gain, having put on about two stones (10 kilos) since starting Glivec. I had also put on more than a stone since starting taking pregabalin for chronic pain in September 2005. I had just started losing weight about 7 pounds when I started taking Glivec.

My GP’s only involvement in all this has been minimal, because he is not treating me. When I mentioned weight gain his response was to tell me to join Weight Watchers. Hillingdon Hospital referred me to a dietician, whose advice was ‘eat less, exercise more, and give up alcohol’ er… yes, helpful.  It was the dietician however, who suggested that I might contact a  support organisation that eventually led me to the RCF. The consultant at Ealing Hospital actually said that it would be very difficult to lose weight while I was taking Glivec. And so, that is where it rests. My GP has no involvement in the care of my chronic eosinophilic leukaemia, but does continue to counsel me to lose weight without prescribing me something that might help. His attitude to any form of counseling, is that unless you pay for it yourself, you might as well forget it in my local health authority, either because of lack of funds and/or the demand for services. (I was offered bereavement counseling after my mother died in 2001, and I am still waiting!).

While my treatment at both Ealing Hospital and Hillingdon Hospital has been sympathetic and enthusiastic, adequate information has not been forthcoming. That has been my problem since first diagnosis; first of eosinophilia, then hyper-eosinophilic syndrome, and finally chronic eosinophilic leukaemia. At my local hospital haematology department, I am treated as something of an exhibit, as I am the only person with my condition in the health authority, and so I have been seen by every member of the haematology team, and every visiting or temporary haematologist, and their students. The majority of students eyes glaze over when they realise they are unlikely ever to see somebody with my specific condition again. When I ask about the effectiveness of my treatment, or long term effectiveness, and/or of the medication, all I get is ‘We don’t know’.

This might be the truth, but not helpful.

So ultimately, I now know I do not have a ‘rarer form of cancer’ to which this organisation is dedicated, but I do have a rare form of not cancer. I do not think that this has changed my attitude to my condition, because it still affects me physically in the same way (or the medication does), in that the physical manifestations of chronic eosinophilic leukaemia are still there, and I am still unaware, because no will answer the question, what the long term prognosis might be.