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Being on Watch and Wait was mentally worse than having treatment. Despite having a superb oncology team, I was left to deal with it by myself. I felt as if I was being left to get worse. Each day I woke up terrified whether bruising or had appeared on my body overnight.
My name is Sadie and in 2014 I was diagnosed with chronic lymphocytic leukaemia (CLL).
I had been feeling really, really tired for months, but didn’t think anything more than burning
the candle at both ends. My neck then became swollen, so I went to the GP. I was an Assistant Headteacher at a secondary school and the mumps were doing the rounds so my GP thought that I may have caught them. A swab was sent off, but I never heard back.
I continued to feel unwell, so I went back to the GP because I wanted it investigated. She reluctantly referred me to an ENT specialist; the letter the GP sent stated, ‘OVERLY ANXIOUS PATIENT WHO HAS DEMANDED FURTHER INVESTIGATION’.
I took it upon myself to visit a private consultant, who did plenty of tests. The next day I was told I had cancer!
I had conventional IV chemotherapy straight away and then spent five years on Watch and Wait before I needed active treatment again after the CLL affected my eyesight.
After chemotherapy, I was told my condition was nothing to worry about as there were only a few cancerous cells and it could be years to develop before I would need treatment. I would have blood tests every three months to monitor it, but otherwise, I could just get on with life.
It really hit me that unlike most cancers, there was no possible cure and I had this for life.
COVID-19 was difficult while on Watch and Wait, and continues to be difficult even now the pandemic is ‘over’. My oncologist has instilled in me I need to continue to wear a mask and to not go to big venues, concerts, cinemas or to fly.
Everyone else is able to get on with life and treat COVID-19 as a cold, and I have to be so very careful. In short, I was made to feel as if my quality of life was severely compromised.
I believe the worry is what makes CLL worse. I always worried if being on Watch and Wait was the right thing for me. Far more support is needed, and there needs to be a better explanation of treatment versus waiting.
I am now on chemotherapy again for a third time. I’m on a strict regime which means I will be taking tablets every day for the rest of my life. But, I actually feel happier than when I was on Watch and Wait. I’m not constantly looking for symptoms, worrying that every bruise or lump is a sign that the cancer is progressing.
It was a difficult period, and I found it really hard. My CLL journey inspired my husband and I to give up the rat race and we have enjoyed seeing the world by sailing on our boat. I wish I was never diagnosed with CLL, but it has inspired me to live the dream and appreciate every day.
We have just set sail again; I hope it inspires others to live each day to the fullest.
Support available for Watch and Wait patients
Call our free helpline on 08088 010 444 or email us at support@leukaemiacare.org.uk (services available 9am – 5pm).
Don’t forget to join our Left to #WatchWaitWorry campaign and help us to improve the support offered to patients on Watch and Wait.