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.
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