In this blog, Sally Crowe reflects on her experiences of post-traumatic stress (PTS) after being diagnosed and treated for a rare cancer, and shares some valuable insights into what she has found can help, or hinder, recovery from this common, but little talked about, consequence of cancer.
I was diagnosed and treated for a rare cancer in late 2018. I approached my treatment with my usual ‘can do’ attitude—despite being in deep shock and feeling as if life would never be the same. I have facial nerve damage as a result of the surgery (had to be done, this cancer dances along the nerve system) resulting in facial ‘tiredness’ and a slight speech impediment.
I wanted to return to work, anxious to pick up the threads with colleagues and projects and feel some normality. In February 2019 I started working, a conference presentation here, a workshop there and even an overseas trip to work with a wonderful team at Oslo Met University.
However, I couldn’t shake off extreme fatigue and sometimes found it difficult to process lots of incoming information. Along with the fatigue strange things started to happen, panic attacks (at a conference, on a train station platform) and finding myself incapable of making decisions. My sleep was poor, peppered with nasty dreams, then there were the ‘shut down’ days where I felt totally overwhelmed, experienced visual disturbances and found it difficult to speak. I began to think that my migraines had intensified and taken on a new form, or worse still the cancer had squirreled into my brain.
A regular clinic day comes around and I nearly don’t go as I feel so awful. However, at the appointment my consultant checks me over as usual and I ask about a having a scan. He doesn’t discount this request but gently asks about my mental health and if I am having bad dreams or flashbacks. The communication in this appointment has taken a turn I hadn’t expected and I blink at him mental health? We move on in the consultation to a suggestion that I may have cancer-related Post-Traumatic Stress (PTS). Apparently it is not uncommon in head and neck cancer, and because I am menopausal, this may have contributed too. I was stunned I had never imagined that this might be an outcome of having cancer.
The consultation finishes and I spend time with the MacMillan nurse who is kind, calm and suggests a counselling programme and a visit to the GP to discuss other approaches. The following few days are absolutely awful I feel shame, that I had not been able to ‘cope’ with the cancer, fear at the thought of the anxiety becoming completely disabling and then finally I become catatonic I don’t speak, eat or do anything for nearly 24 hours a sort of complete shut-down of my mind and body.
That was almost a year ago. I am in a much better place in 2020 and the process of reflecting on PTS and writing about it has proved therapeutic. I am also back at work and enjoying it again.
However, there are things that have had to change in order to get to this place.
These are four of them;
- Simplifying my day and avoiding complex situations or arrangements. This can range from saying no to invitations, working out the most straightforward approaches to a problem, to limiting the amount of ‘useful things’ I will do in one day. My counsellor challenged me on what I define as useful. I tend to think of this as things or actions that help others rather than myself so that needs working on.
- Knowing the signs of overload. This continues to be a challenge but I am getting better at it. I am also more comfortable with those close to me communicating with me when they think I am exhibiting PTS signs.
- Self care and activity that soothes. This usually involves using my hands and heart (rather than my brain) so cooking, gardening, swimming, walking and rowing all fit the bill. It seems that repetitiveness and rhythm help. I also find myself wanting to read familiar books and watch old films.
- Hardest of all has been communicating about PTS and cancer. The ‘battle and war’ cancer narrative doesn’t help me either. What encourages me to share? Trust first and foremost, this is painful information I am sharing. I need to know that the disclosure won’t be abused and will be respected. If I had the slightest doubt that the listener isn’t really that interested or is not concentrating on what I am saying it’s a no-go. I think that this applies to cancer more generally, communication is about giving and receiving and there are many barriers to doing both well.
On reflection, sharing has generally been positive, and it’s surprising to hear how many other people with cancer have had similar experiences. I am hoping that my disclosure may give some insights for others living with cancer and associated trauma. One of the most useful things I saw on a cancer forum in relation to PTS was “I can only please one person at a time. Today I choose me.”
Sally is a Director at Crowe Associates Ltd, which provides consultancy, facilitation, training and project management for patient and public involvement in health services and research. She is a member of Cochrane with a particular interest in priority setting and consumer involvement. Sally has been a member of the British Medical Journal’s Patient Panel since its inception, and is on the Editorial Board of BioMed Central’s Research Involvement and Engagement Journal.