After experiencing tiredness for a year and night sweats, I went to see the GP. My GP did an initial blood test and then followed up with a further blood test to test more specifically as they saw some markers in white cell count that was a cause for concern. I was then referred to secondary care and went for more blood tests and a scan.
Once all the blood tests and the scans were completed, I was then given an appointment with a consultant who gave me the results and advised that I had CLL. He told me my condition did not currently warrant any treatment as my levels (while high) were not sufficiently high to warrant treatment as generally, it has a low success rate. This was quite hard to hear. Knowing that you have a condition that will not be treated until you reach the appropriate ‘magic’ number seems counter-intuitive. From everything I know, all other cancers (blood or otherwise), warrant some form of treatment but not CLL. Of course, logically I understood what I was being told but emotionally, it feels like you are in a dream. After being seen by the consultant, I was told that I was being referred to the care of my GP again and would need regular blood tests to monitor things. I have blood tests every 3 months, but I do not receive updates from my GP on how things are looking – I have to check my test results myself to see if there are any changes.
Life with CLL
When I first received my diagnosis, I carried on working but about a month after being told I had CLL, I was driving to work and just found myself crying. I had 3 months off work, partly to try and come to terms with everything but also to try and re-assess and think about what I wanted moving forward. I started taking anti-depressants during this time and this went some way to helping me deal with my emotions. I stopped taking anti-depressants in 2019. My work hours were not going to change, and I was so tired that I didn’t feel I could sustain this any longer. I had some savings so decided to resign and reassess what work/life should look like to deal with the tiredness. I did some volunteer work during this time which allowed me to be out walking and getting plenty of fresh air which helped me. I resumed working in 2017 but on a part-time basis which works well for me. I still struggle with tiredness.
I don’t feel that I have had any support really from the healthcare system, primary or secondary care on Watch and Wait. It has really all been down to me to get information and to join groups that allow me to see the latest developments etc.,
It was difficult in the first year of the COVID-19 pandemic to get my 3 monthly blood tests but that has gone back to normal now. I work in primary care so have been able to work from home particularly during the stage when I was shielding. Overall, my experience as a Watch and Wait patient has not been significantly different over the past couple of years. It’s still down to me to book my blood tests and review the results. Whilst I stopped taking anti-depressants in 2019 because I felt that I was able to cope better, the last two years have been challenging and I’m about to discuss resuming a lower dose of anti-depressants with my GP as my mood fluctuates from day to day.
I think the Watch and Wait period needs to be improved so that patients are not left completely on their own to manage their symptoms, feelings, and ongoing care.
What Would I Change About Watch and Wait
Secondary care should be advising GPs on what to discuss with their patients if you are referred back into their care. Perhaps secondary care should communicate with patients on a yearly to 18-month basis to get up to date information as treatment options etc., are constantly changing. I also think that GPs could send out a short text message to patients in their care having regular blood tests with a short update on the results just so that as a patient you know that the results have been reviewed and there is no change to your current status.
I have found a lot of information useful, but I sometimes feel that CLL patients who have received treatment are more prominent in online discourse than those on Watch and Wait. Many of us may never need treatment which is great on the one hand but on the other is just an ongoing grind. More representation in the media from patients in my age group who are still on Watch and Wait and how they are dealing with everyday life would be great.