27 April 2018

In 2015, Billie was diagnosed with blood cancer. She endured chemotherapy, radiotherapy and a stem cell transplant. Her treatment was hard and due to complications, the recovery was even harder. Billie shares her story about how this journey impacted her mental health and why joined up mind and body care is so important.   

The mind is such a fragile thing. How can someone begin to heal physically if they are mentally broken? I don’t think they can. 

When I first received my cancer diagnosis I barely felt a thing. I was more worried about the people around me and felt like my only option was to be as strong as I could. I knew I was in shock and one day I’d probably start to feel quite different. 

During my initial stages of treatment I suffered from extreme bouts of anxiety. It was like I could physically feel a cloud of dread sweep over my body. I’d feel like I couldn’t breathe and would have to stop whatever I was doing until the feelings passed. 

I was offered some counselling with a haematology counsellor. Phil helped me use different techniques to calm myself down during my bouts of panic. He helped me prepare for what I would start to feel when the feelings of shock subsided and diagnosis set in. 

My treatment also left me very mixed up and confused. There were times when I wouldn’t know if something had happened or if I’d imagined it. Sometimes I’d feel like I wasn’t even really in the room during a conversation. For one of the first times in my life I had insomnia, making it even harder for me to function. Phil helped reassure me that these feelings were common and that they were something that I could cope with. 

When I found out that I was going to need a stem cell transplant I began to worry more and more about my mortality. Now I am able to reflect, I can see I was extremely fortunate to know I had a donor straight away. For many people there is an anxious wait to know if they have a match, and for some a match isn’t available immediately if at all. I can’t even imagine how people feel or cope with this. 

Weekends were often the time that my anxiety would be through the roof. I knew it meant my medical team wouldn’t be in for two days to reassure me.  I would dissolve into an absolute mess. I’d make wild interpretations of my blood results, red blood cells too low, the cancer had come back, liver function too high, liver failure, immunity too low, I was going to die of an infection. As I think back now, my claims seem so irrational. But to me, at the time, they felt very real and very possible. When you are suddenly told that your body has gone wrong, it’s very hard to trust it again. 

I was frequently admitted to hospital, and on one occasion was an inpatient for 13 months. I felt so trapped between the four walls. Even visits from family and friends were hard, as they served as a reminder to the world I was missing out of, and didn’t feel I belonged to anymore. I didn’t feel like the person I was before. My change in physical appearance made this even more difficult to deal with. I couldn’t bear to look in the mirror because it felt like I didn’t know the person staring back at me. I couldn’t see any purpose to my life other than being a burden to those around me. 

My mum and husband became increasingly concerned about me, and felt helpless about what to do. My consultant eventually managed to put through a referral to psychology, but it wasn’t straightforward and did take time. 

I am very fortunate to have an extremely loving and supportive family, and I have a very honest relationship with them, but I needed someone who wasn’t involved. Someone that wasn’t also under the intense pressure that we were all facing.  Chris my psychologist was this person. 

Before I had become unwell I had completed some sessions of Cognitive Behavioural Therapy (CBT), to try and overcome a past event. I’d found the sessions really helpful, so Chris and I decided we’d use a CBT approach in our sessions. 

Chris helped me use various techniques to try and rationalise many of the thoughts and feelings I was having. He made me challenge many of the negative thoughts I was battling. He encouraged me to do and try things. He made me think about things from other people’s point off view. As my mental health began to improve, so did my physical ability. I’d started using sleep as a way to escape my feelings, but as I confronted them I felt as though I had more energy for life. This is just one example of how looking after my mind helped my physical recovery. 

Due to the complications I suffered with my treatment, I was moved to a rehabilitation ward. During my stay I started making the first steps to rebuilding my life. Amongst other things, I learnt to eat by myself, use the toilet, wash, dress and walk again. Coming to terms with my new disabilities and learning how I had to adapt to achieve simple everyday things was a frustrating, emotional and difficult experience. On the ward there was a dedicated psychologist who saw me at least once a week. He helped me talk through the new challenges in my life and was there to speak to about the new feelings and fears I was experiencing. He worked alongside my therapists and doctors, so everyone was in the loop about how I was both physically and emotionally. I left the hospital with a plan of what I’d do if things got hard as I adjusted to life back in the community, which was very reassuring. 

Cancer has changed me into someone I still feel I don’t completely know or accept, and I know it’s going to take time for me to come to terms with that. It feels like cancer has stolen everything from me, my hopes, my dreams, my aspirations. But I have been lucky to have psychological support during my treatment to help me begin to tackle the next stages of my life. Not everyone is fortunate enough to receive this help, and it’s not always readily available. At one stage I was offered some oncology counselling, but the hospital where this was based was just too difficult for me to get to when I was feeling so fatigued and unwell. 

I recently attended a support group. It was so rewarding hearing how people felt it had helped them confront feelings they’d been trying to ignore, and how useful they were finding some of the exercises.  And it was such a relief meeting a group of people that were feeling some of the same feelings and emotions I was feeling. I didn’t feel so alone or irrational. 

Sometimes support has worked for me and sometimes it hasn’t. It depends on who you are and what you need at the time. I think it is so important for those with a long-term health condition to have access to different types of support throughout their treatment and beyond. There is so much to take in, do and think about.

King’s College Hospital NHS Foundation Trust have been fantastic in the care they have given me, and I am so fortunate to have benefitted from its support. There is however, so much more we can do to make mental health care accessible and visible. I hope that the Mind & Body Initiative will be the first step to giving mental health the recognition it deserves, ensuring it is an ongoing part of treatment. It puts physical and mental health on par with each other, making sure the mind does not stop the body healing.

Find out more about how we're joining up mental and physical healthcare on the King's Helath Partners Mind & Body website.