When I first contacted the GP, it wasn’t because I had any symptoms or concerns of leukaemia, but I went to the GP to see if they could do a blood test to check for any prostate issues. The results came back and my GP informed me I had some form of leukaemia. The word leukaemia made me feel like my world was ending, whilst simultaneously, my GP seemed to be a little over congratulatory with the finding, because it has been found.
From one minute going to see if I had any possible symptoms of a prostate problem to then being told I had a form of leukaemia was devastating. The phone call where the GP told me my diagnosis felt a little insensitive and my wife and children were already expecting the worst. I would’ve at least expected a face to face consultation to explain the possibilities to me.
I was later informed by the hospital that it was in fact chronic lymphocytic leukaemia (CLL) and I was quickly referred to our local hospital to be seen by a consultant haematologist.
Watch and Wait
When I was first informed of Watch and Wait, the consultant explained that I could stay under the umbrella of the haematology department in the hospital, or I could go with my GP to monitor the six-monthly blood tests. It seemed to go well for the first couple of years, and I was seen by the same doctor each time, and they were aware of what they needed to monitor.
However, when the staff at the surgery changed, I found myself having to remind them of the physical examinations that were needed alongside the blood tests. Some of the tests were even mixed up or went missing, which ended up in me having to go back to complete repeat tests.
I have been on Watch and Wait for 12 years and I’m still on it now. Despite my blood tests sometimes feeling erratic (though it should be noted it’s not to the extent that it would require me to go back under a specialist) I still have them every six months.
From my experience of Watch and Wait, and living with CLL in general, I feel there is a lack of knowledge and understanding of the disease at GP level. I sometimes feel like myself and others on Watch and Wait are left to our own devices as we are not on any treatment, but we’re still anxious about the possible outcome of the illness.