I first realised something was wrong in May 2013. I’d been getting lots of chest infections, cellulitis, and had aching bones and night sweats. I felt off and used to say I felt I had a cold in my bones.
At first my GP couldn’t find anything wrong and failed to follow up on more than one dodgy blood test result (I discovered this after diagnosis) and I didn’t feel that they were very helpful. When I said I didn’t feel bad all the time, the GP asked me if I’d ever wondered if I was bipolar. When I was asked to come back another time, he had forgotten I’d been called in, asked what I was there for and then said, “Oh yes, you have CLL, nothing to worry about.” When I asked for more info, he told me I didn’t need to know but he would refer me. I eventually persuaded him to write the name of my illness on a post it. Quickest appointment ever.
So, I was finally diagnosed with chronic lymphocytic leukaemia (CLL) in October 2015 when I had more blood tests to rule out arthritis. With my type of cancer, they don’t rush in to treat it straight away, so the wait to get my diagnosis hasn’t made any difference physically, but it has meant I struggled mentally, which was compounded by being made redundant while I was still waiting to find out what was wrong with me.
It’s not very common to get CLL as a woman in your 40s as it’s much more common in older people, and that was quite isolating as I felt I didn’t fit the mould. Once I was diagnosed the specialist said they would ‘wait and watch’. I continued to feel quite unwell and friends told me I looked really rough. It’s a strange concept to be told that you’ve got leukaemia but not get any treatment.
Then in June 2016, I started chemotherapy. I had six months of FCR – fludarabine, cyclophosphamide and rituximab – and about six months after my treatment finished, I started transfusions of IVIg every four weeks to help my immune system. I was very sick for the first two rounds of chemo, but then my anti-sickness meds were changed and I felt much better. I went into complete remission and I’m now back on ‘watch and wait’.
I’ve just had another review with my consultant and my remission is holding really well. I used to feel a monster had come to live with me and one day it would attack. With my latest results and the scientific progress being made, I feel really positive now.
The treatment knocked me straight into the menopause; it felt like I’d been pushed onto a hormonal ‘black run’, but no-one talked about it. It’s been hard juggling everything – work, the children and being ill. I’d got a new job in IT/Telco, based at head office, but because I’d been made redundant before I felt I needed to be at work as much as possible. I tried to keep going throughout my treatment, but it was just too hard. I was limping along getting one infection after another and ended up taking time off. When I got back to work, I’d get a lot of infections, yet often I’d book a day’s holiday rather than take sick leave as I felt guilty. Chronic illness tests the patience of not just the patients.
I have three children, girls of 24 and 23, and a 12-year-old boy. My eldest was very upset when I was first diagnosed, but then got her head down, worked hard at university and graduated with a first. My middle one has been very calm; she’s in the police and pretty tough. However, I struggled to support my youngest emotionally. I didn’t want my children to be affected so I often pretended to feel better than I did. I’m a very independent person and I find it very difficult to ask for help. I drove myself to appointments and sometimes I’d have to stop the car to be sick. My biggest worry has been the thought of losing my independence and not being able to provide for my kids. No matter how hard it’s been, so far, I’ve managed to keep things on track.
My illness has also had some positive aspects. I’ve made so many friends since being diagnosed. I’m quite a sociable person and so many lovely people have come into my life. I’ve never laughed as much as I do with them and others with my condition.
My advice to others would be to advocate for yourself. I’m afraid there is unconscious bias in the medical profession and women have to stick up for themselves to be taken seriously sometimes. On the other hand, there are wonderful people out there to support us. Seek help. You are not alone.