|19th October 2015
A few months into living with cancer as a chronic illness, I am looking forward to living with it in a ‘normal way’ as it were. To do this, I believe that I need to get back to normal and to minimise risk of recurrence, and to become the golden ‘empowered patient’ that is such a hot topic in healthcare: understand your treatment, participate in it, adhere to it, and be pro-active to maintain your health. As a result, I should expect my treatment to work better, to feel better mentally, and to get back to normal quicker.
So where do I stand now?
For the past few months, I have often felt like I was living in the Twilight Zone: I was living my life but not on my terms, and it would often feel surreal. To avoid feeling increasingly uncomfortable and anxious, I needed to find my way to navigate what was happening and to find the practical things that I could do to ‘normalise’ my life and be my own self.
I have always been a keen student. As my brain was going into overdrive following diagnosis, I naturally immersed myself in information; Googling for hours on end, hopping from link to link and from good websites to websites best avoided.
Initially, I read a lot about ‘empowered patients’, and found that most health initiatives talked about taking a more active part in my treatment and overall in my health. I needed to translate this into practical things that I could easily do ‘my way’. The bottom line for me is that my cancer and related risk of a recurrence should not take over and rule my life. If and when it comes back, I want to feel comfortable with it, and kind to myself, knowing that I did everything I could to avoid this. I am not a ‘patient’ outside treatment, a case study, a statistic. I am somebody who has just had cancer who wants to have a good life.
Initially, I was on a mission to understand everything: ‘why do I have cancer?’, ‘what have I done wrong?’, ‘am I going to be cured?’, ‘what is ‘cancer’ about?’, ‘what should I do?’. Even the speediest of broadband could not give me access quick enough to all the sites I went on! With hindsight, it feels like I was on a quest to find the answer to everything. This was intense and lasted a few weeks. The more I dug into information, the more I realised that risk is here to stay, and it’s a lottery. As a specialist clinical nurse told me on completion of radiotherapy,
With all that we know, all the evidence that we have, I can tell you that your cancer is not coming back…of course, we cannot be sure.
During those weeks, I focused on ring-fencing myself. I welcomed the radical treatment I was going through, and I aimed to future-proof myself from all the risk factors that I could become aware of, including possibly from my own self. My grass-hopping brain turned mastering information into a goal in itself. I read online and offline, registered with several online courses on topics in oncology, chatted with my scientific colleagues at Blue Latitude. I was discovering how devilishly cunning cancer cells are in fooling our immune system, giving it a ‘handshake’ to trick it into not sending an army of T-cells. I wanted to educate my immune system to turn the handshake into a cancer cell squash if they ever came back! Just a small thing, right?
As a typical patient, I also turned to my multi-disciplinary treatment team (MDT) to give me practical and tangible information on my treatment. My MDT was committed to seeing me through my treatment steps in the most efficient way and without undue anxiety. However, each member of the MDT had a precise role to play and did not necessarily have all the information I needed. As my mind was racing ahead and trying to understand and control what was next, information would sometimes feel fragmented, vague, incomplete, and also worryingly contradictory. The advice was to ‘take it one day at a time and don’t worry’, and when asked to explain why he might be considering prescribing a radiotherapy boost, my oncologist said, “Because I will decide to”.
As I was going through treatment, I also experienced a kind of ‘brain freeze’. When speaking with a member of my MDT, I would forget the questions I wanted to ask, give wrong answers, and go nowhere near the questions that I needed to ask (but did not want to ask). It was unexpected and uncomfortable. I would sometimes joke with my family that surgery had extended to my brain and produced a cognitive impairment.
My family listened in consultations when I would stop listening to ponder on what had been said before. They also kept asking my questions until they got the answers. They enquired about my prognosis and whether my cancer had spread. In other words, my family were an essential part of my other half of treatment, and they also helped my MDT to lift and carry me through.
Help also came from Maggie’s Centres, a cancer support charity present on my hospital’s premises. They helped me to focus my information needs, and to understand that my behaviour had a pattern well researched in psychology, including in the psychology of illness. They alleviated my anxiety and guided me to a mental place where I could start to make progress and be more active in my own health.
Information is everywhere, and I was looking for pragmatic guidance on how to adjust my lifestyle to minimise risk. I remembered being introduced previously to the inspiring story of the late Dr. David Servan-Schreiber, a French neuroscientist who was a clinical Professor of Psychiatry in the USA, and survived brain cancer for 19 years, pioneering his own holistic approach to living with his cancer. As I neared end of treatment, his experience resonated and his story mirrored the story that I wanted to develop for myself.
I had attended workshops on nutrition organised by key cancer support charities and was hearing about the documented impact of nutrition on risk of recurrence of breast cancer. Dr. Servan-Schreiber’s account of how he changed his diet and supported patients in modifying theirs was aligned, clear and convincing. If anything, nutrition acts as a powerful placebo for me - both as a tool to boost and maintain my immune system and as a proxy for control. For me, adjustments felt necessary, welcome and very feasible.
Daily exercise is also part of the equation and indulging even more in my hobby of walking/rambling is no effort. It is a pleasure, and also easy to practice in my daily life by using my environment better. Finally, laughing at life is a basic value of mine, and Dr. Servan-Schreiber’s story to some extent legitimises poking fun at cancer and maintaining a good sense of humour. I find that humour, albeit dark, helps with my mental wellbeing and the process of going through treatment; of all the people I have met these past few months, I do not seem to be the only one.
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