For four to five years prior to my diagnosis, I had been feeling extremely tired, but I had just put this down to the result of having a busy life. I was sleeping 12 hours each night and all day on Sundays, just to be able to feel somewhat normal.
I sought advice from my GP who said, “Let’s take a blood test and see if anything turns up, but it’s most likely your age and job.”
I was called by a locum after the blood test and told I had some type of leukaemia. They told me I would be given a booklet to explain my diagnosis more when I got an appointment with a hematologist sometime in the future. I had only known of acute leukaemia in children, so I was very worried about my diagnosis. I was later told I had chronic lymphocytic leukaemia (CLL) and subsequently on Watch and Wait for 13 years.
Living with CLL
I have hardly ever discussed my CLL with my GP. However, what he did tell me was that CLL wasn’t a real cancer and I would not be included in the shielding process. I made a fuss to be included, yet he did not amend the records correctly, and I wasn’t included in the 4th jab sweep by the NHS. At this time, I was extremely susceptible to infections, but he wasn’t interested or supportive – it feels like he didn’t take my CLL into account. I have been lucky not to have experienced a lot of bacterial infections since my diagnosis; I think my 30 odd years working with children has stood me in good stead!
The GP has been a lot less than supportive, but the hospital team are wonderful. They have treated me as a sentient adult and gave me a booklet to explain the disease at the beginning and everything has been explained as my disease has progressed over the years. My appointments now vary from once every six weeks to every six months, depending on my blood results.
Watch and Wait
After 13 years of watch and wait, I am nearing the end of one year’s treatment on obinutumazab and venetoclax.
Generally, I have been delighted that my Watch and Wait period lasted as long as it did. Most of the time I felt reasonably well and had a full and fulfilling life. The only times anxiety seemed to kick in were the days leading up to my consultant appointments.
However, more recently, I have been getting thoroughly fed up with being shut away and having a disease front and central to my life, especially as I feel so much better than I did at the end of my Watch and Wait. I have nine grandchildren who I haven’t seen for nearly two years now and I like to travel which hasn’t been possible either.
From my experience, I believe GP’s need to have ongoing updates on CLL, as treatments and the life changing effects of CLL are changing month to month, exacerbated by the COVID pandemic.
I would also like copies of my blood tests and the offer of updates on my childhood jabs before I started treatment – it is too late now because they would have no effect due to my treatments.