Children’s literature helps lawyers recover from the diagnosis and treatment of a brain tumor.
Caroline Steel, 40, of Swindon, was diagnosed with anaplastic astrocytoma in 2017. Her diagnosis was complete shock as she had no known symptoms before collapsing at work in her role with the legal team of a conservation charity.
Shortly before collapsing Caroline had felt a little dizzy so, thinking she needed a blood sugar boost, she went to a nearby store to buy chocolate. On the way home, Caroline said she felt like her feet weren’t touching the ground or that she was stepping on jelly. Back at her office, she had her first seizure and cannot remember anything else from what happened to her in the hours that followed.
She has since been told that a paramedic from the office came to help her when her colleagues thought she was choking on a Mini Egg. An ambulance was called and Caroline was taken to Swindon General Hospital and the first thing Caroline remembers is waking up in intensive care. Her only memory is knowing that something had been found in her head although a doctor did not tell her immediately after she regained consciousness.
She added: “My medical notes indicated that I was combative when I arrived, so security was called and I tried to remove my cannula. It’s so unusual for me, but the doctors told me. said it was common for people immediately following a major crisis.
Caroline had four seizures in her office and at A&E, so she received an MRI and anti-seizure medication while referred to the neurosurgery team at John Radcliffe Hospital in Oxford. She had surgery – an awake craniotomy – a few weeks later.
After Caroline’s surgery, which removed as much of the tumor as possible, it was confirmed that she had a grade 3 astrocytoma. She therefore needed additional treatment, including chemotherapy and radiation therapy.
The medical team had warned her of some potential side effects of the treatment, including memory loss, difficulty concentrating and personality changes. However, they said his brain would form new pathways and relearn how to do things over time.
Caroline had some trouble remembering how to ride a bike after a few difficult attempts and took a few refresher swimming lessons to make sure she still had this life skill. Yet as she struggled to finish an adult fiction book, her sister suggested books for children and young adults instead. Caroline quickly rediscovered the fun books she can bring by enjoying Enid Blyton, Roald Dahl and also Winnie the Pooh for the first time without having read it as a child.
Caroline said: “Life was pretty bleak after surgery, but you must marvel at the medicine and the ability to perform such complex surgery. At the start of my treatment I found that my concentration levels were affected and the fatigue I was feeling prevented me from focusing on anything for too long and I fell asleep in the middle of reading a chapter. .
“My sister’s suggestion to read books aimed at younger audiences instead was the perfect solution. While in treatment I challenged myself to read a book a week and it was a wonderful accomplishment to be able to do so. “
Throughout her treatment, Caroline also had to come to terms with losing her hair during radiation therapy, which she said was much more serious than she expected.
She added, “The chemotherapy was such a strange experience. In my job I assess risk all the time and there I gladly put the contents of a bottle labeled “toxic” into my body.
“I’ve always had really long hair too, so losing that much was a big change for me. It was really a shocking amount coming out too – it clogged my vacuum cleaner every time I did the housework. it will only be a weird clump here or there, but it isn’t and you don’t realize how important it can be until it really happens to you.
Caroline also had to change her chemotherapy dose as her platelet levels dropped dangerously and she had to be readmitted to the hospital overnight and stopped taking her medications while they stabilized. This was first detected during a routine blood test, but Caroline said she wished she had seen the information on The Brain Tumor Charity website at the time, which is why the bites of The pin and the random bruises she was experiencing were indications of this.
Now, four years later, Caroline has regular checkups to monitor her condition for any signs of regrowth. Caroline has also changed her outlook on life throughout her experience before the similar changes many people have experienced in response to the Covid pandemic.
She said: “Throughout the pandemic we have all understood how mortality is a simple fact of life. It was interesting to see other people realize this after having already accepted myself as much as possible. I have been told that brain cancer has no cure. It is a sobering thought.
Caroline is keen to make the most of each day and is due to move into a new home with her partner in the near future. His advice to others is:
- The scanxia is real. I know that in the days leading up to getting my scan results, I won’t be able to focus on anything else. So, I block these days of work and my coworkers know my mind will not be on the job. It helps me breathe if the results don’t match what I want to hear.
- Think mindfulness – I took a six week course that made a real difference. It really helped me to be more aware of myself and how my mind and body are connected. The logic behind this helps me process it – if I start sweating or breathing heavily, I know it’s because hormones in my brain are processing a strong emotion.
- Talk to your employer – neither I nor my employer really knew how to handle the situation, but keeping an open dialogue was helpful. I was then able to reduce my work hours as needed throughout my treatment and, to the relief of my consultant, I took a full week off for my last round of chemotherapy. Work was a useful distraction for me, but I should have listened to my body more – it was going through difficult things and I should have given myself the time and space to heal.
- I was afraid to remember all the medications as it is quite complicated and to monitor what I took and when. So I have a ‘medication diary’ to jot it all down next to any symptoms I may have had that day, so I have all the information on how I feel when I have an appointment. you medical.
- Learn to let go. Some people will be there for you and some will not, because they may find it too difficult to get involved. I lost a friend after my diagnosis – she wrote me a card saying she found what I was going through too much to deal with. So I have to respect that and not fight it.
- Try out new things that might be outside your usual comfort zone – I wasn’t too keen on joining a support group because I didn’t want to constantly talk about what was going on. Instead, I joined a dance workshop called Move Dance Feel specifically for people living with cancer who took online classes throughout the pandemic. It was good to connect with others in a creative way. Through this course I also discovered Seachange which offers surf retreats for those affected by cancer and it is there that I rediscovered my love and confidence in the water.
- Invest in a few good hats – I have found it very helpful to have a nice blanket that is convenient to use in a variety of weather conditions.
Photo credit: Simon Hickie and Leanne Jones for SeaChange Retreats.
Caroline found out about The Brain Tumor Charity after her diagnosis and requested the charity’s information pack which contains lots of advice, information and support for those affected by a diagnosis. She also signed up for the organization’s BRIAN app, which allows people to keep their own online diaries, similar to Caroline’s “drug diary”.
She said: “Even though a cure for brain tumors would be amazing, what would really help me is to understand why they happen – no one has an answer for me on that. I had a car accident a few years ago and hit my head and wonder if it could be because of that? Is it genetic? Could it be environmental factors? Or is it as easy as the luck of the draw? I’ll probably never know and it’s hard for me to accept.
“Now I just want to live as normal a life as possible. I want to stay as fit and healthy as possible so that I’m in the best possible position to deal with whatever the future throws at me. always having to go to the hospital and get checked up and I don’t know what’s coming. So I want to enjoy now and live in the moment – it’s taken me the last four years to mentally come to this. place, so I want to take advantage of it.