Cancer and Post-Traumatic Stress

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.

Page last checked 27 June 2023

Take-home points

Cancer-related post-traumatic stress appears to be common, but little talked about. Good communication from my cancer care team helped me accept and adapt. The effects of cancer post-traumatic stress (PTS) may inhibit recovery and return to work. Identifying trigger points in post-traumatic stress can help in self-management and recovery. For some living with secondary, metastatic or incurable cancer – there is no ‘post’ in PTS.

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, and 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.

Painting of a bowl in Kintsungi style - cracks filled in with golden sealant
Sally chose this image: “Kintsugi; the image of mending a broken pot with precious metal acknowledges my experience of cancer surgery and how I have come to accept and live with the scars, inside and out. Joining a dragon boat crew of people affected by cancer has been part of my recovery – our new boat is named Kintsugi”. Artwork: ‘Scars Are Golden’ by Mary Kamerer, is part of  the Breast Cancer Art Project.

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 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.

Sally chose this artwork, of a person watering a garden of flowers, as reflective of her experience of post-traumatic stress
Sally chose this image: “Gardening as a metaphor for ‘tending trauma’, and learning to live alongside it”. Artwork: ‘Little Sue’ by Andy Farr.

However, there are things that have had to change in order to get to this place.

These are four of them;

  1. 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 these as things or actions that help others rather than myself – so that needs working on.
  2. 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.
  3. 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.
  4. 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.”

Featured image: Sally chose the image shown at the top of this blog and in the above slide, ‘The Invitation’ by Andy Farr / @andyfarrart, saying: “anxiety stopped me from interacting with others and myself – I feel as I am now the girl in red welcoming the world, rather than the girl looking around the corner, fearful and anxious”.

Sally Crowe has nothing to disclose.

Cancer and Post-Traumatic Stress by Sally Crowe

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

13 Comments on this post

  1. “My advice to Seek guidance from healthcare professionals, such as neurologists or headache specialists, It is crucial for accurate diagnosis and the development of an effective management plan tailored to the individual’s needs. Medications such as triptans, analgesics, and anti-emetics are commonly prescribed for migraine relief.”

    Joe Goldberg / Reply
  2. What a great blog, Sally. Personal and profound. Your messages about making adjustments really struck a chord with me. I have had three periods in hospital / serious illness over the last six years, no PTS but lots of fatigue and a change of capabilities. Your expression of your experiences and strategies is very thought-provoking.

    Mary Newburn / Reply
  3. I am grateful to you, Sally, for sharing your story. I love your choice of the beautiful Kintsungi piece “Scars are Golden” to pair with the post. I also appreciate your taking on the “battle and war” cancer narrative that is not helpful to so many but that is so pervasive (with no disrespect intended to those who do find this analogy useful). Wishing you well.

    Lucy Mathews Heegaard / Reply
  4. Hi Sally This is an amazing blog and brave of you to share your very personal experience. I hope it will give others an insight into the hidden challenges of cancer and hope to those similarly affected and possibly struggling. Wishing you the very best as you continue you through your recovery and for the future.

    Clare / Reply
  5. Hi Lesley – I agree – PTS does not necessarily wait until treatment has finished – although I gather it can often occur as people leave intensive cancer services. Thanks for reading and posting a comment – it is great to have the feedback.

    Sally Crowe / Reply
  6. Hi Pam – how lovely to hear from you and so glad that your recent surgery was a good result! Thanks for reading, sharing and feeding back.

    Sally Crowe / Reply
  7. Congratulations for thriving! I always knew you as an excellent communicator and this demonstrates your skill. Although my recent surgery proved I didn’t have cancer, I can relate to much of this and your coping strategy.

    Pam Carter / Reply
  8. Thank you, Sally, for writing this even though you found it painful. It is generous of you to share your experiences and strategies and I’m sure you’ll have touched and helped many others. I’m so glad you feel stronger now.

    Karen / Reply
    • Hello Karen – thanks for reading the piece and for your comments – I have received quite a few private messages about people’s experiences of trauma – I feel very humbled about these. It totally justified my decision to publish. Thanks for your good wishes!

    • Thank you so much for sharing your story and experiences with PTSD and Cancer. This is the first time as an RN that I have ever seen the subject discussed. As carers we need to make people much more aware of this, it is not just ones body that needs to heal from the Surgical treatment, but the mind and ones emotions. Often, like after a bereavement, one loses sight that in the long term the soul continues to suffer!

      Christine Wirtz / (in reply to Karen) Reply
  9. Thank you for sharing your journey, Sally! The four changes you listed out are really helpful. <3

    Muriah / Reply
    • Hi Muriah – thanks for the feedback! Yes, writing about the practical stuff was important to me – I’m glad that they are helpful. Professional advice was to try mindfulness apps etc. These weren’t for me…it was in the end about changing much more than that! Thanks again

  10. Thank you so much for sharing this, Sally, I am certain it can help many people, whether their treatment is complete or ongoing.

    Lesley / Reply

Leave a Reply

Your email address will not be published. Required fields are marked *