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I can remember the last time I told the story of how I had been diagnosed with leukaemia: I didn’t expect the reply “aren’t you lucky you already had cancer”. But that’s to jump ahead. I had always been a keen walker and over the years the distances had gradually reduced, probably joints as much as anything. By the age of 77 I was beginning to feel more tired than seemed reasonable, especially playing football in the garden with my grandson – but isn’t that just old age? I think this is one of key moments in diagnosis: do I go to the doctor saying “I feel healthy but I am getting old and feel tired”. That does not come naturally to the British. However, I had to visit my G.P. on another matter and mentioned that I was feeling tired. Slightly to my surprise I was taken seriously and sent for a blood test. When this came back, she sent me to a local haematologist who said the white blood cells were low but this could be normal for me, rather than a deterioration. Have another test in a month and come back. The second test showed an improvement so another wait was called for. So far so good. The G.P. took my tiredness seriously and the blood tests were done, which is what one could hope for.
This is where route two diagnosis came in, hence the opening quote. About five years previous, doctors found a melanoma in my eye, leading to some fun operations including proton beam treatment at an obscure hospital on the Wirral. Although the melanoma is now stable, the protocol (how I have come to love that word) required a six-monthly MRI liver scan. As I understand it, if the melanoma were to spread, it would do so via the liver. After a while, you get used to the routine with the oncologist: nice smile, everything is clear, see you in six months. This time I was told that the scan had shown a small lesion on the pelvis close to the liver or, as best as I could understand it, a white blob. No, he didn’t know what it was and no, he would not guess or tell me of the various possibilities. The investigations took some time. A whole-body CT scan failed to show any more lesions, not even the original one. I think there was another scan and eventually I finished up at the National Orthopaedic Hospital at Stanmore which had a machine that could x-ray while doing a pelvic biopsy. At least my wife had a trip down memory lane, having worked there as a radiographer for twenty years.
I can vividly remember the three days at the end of July 2019. I had paid a deposit on a cottage in Wales but had held back on paying the balance while the investigations were ongoing. Then I had a call from the Stanmore doctor on the Wednesday to say that they had found out what the lesion was (and I cannot remember the explanation), but there was no urgency, and I could go on my holiday. I duly paid the balance. The next afternoon, Thursday, I received a call out of the blue from the UCH’s Macmillan Cancer Centre asking me to come in immediately. I had no idea why and negotiated the Friday as more practical. There I met Dr Kottaridis and Sangeetha, the delightful practice nurse. I had no idea what was coming. Evidently further tests showed that I had leukaemia, and the “protocol” required treatment as soon as possible. No-one had ever mentioned leukaemia to me as a possibility and I knew little of it other than reading about it in children. I even had my own version, acute lymphoblastic leukaemia or ALL as I have learned to call it. (Incidentally, the cottage owner refunded my payment.)
So, my diagnosis was not the conventional route (an “incidental finding” I believe) and therefore not much guidance to anyone else. Because of the liver scan, it was probably picked up sooner than otherwise, hence the “lucky” remark above. But that apart, I had already got into the system via the G.P. and I assume that further blood tests would eventually have identified leukaemia. I cannot complain about the speed of my diagnosis. If there was a delay it was from me not consulting the G.P. earlier. If I were to draw a message from my own experience it would be: don’t be backwards in telling your G.P. you are feeling more tired than you would normally expect. It may not be just old age.
Every story should have a postscript. After three years I am coming to the end of the remission period. My treatment has been excellent and I in many respects I lead a normal life. However, the continued tiredness is not always easy to deal with and on those occasions, I console myself with another “lucky” aphorism. Aren’t I lucky to have an illness that doesn’t hurt?
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- Fatigue
- Shortness of breath
- Fever or night sweats
- Bruising or bleeding
- Bone/joint pain
- Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
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