Intro by Dr Sandi Dheensa, author of Macmillan & Standing Together Cancer and DA Toolkit
In March 2024, Macmillan Cancer Support, in partnership with the University of Bristol and Standing Together Against Domestic Abuse, launched a new toolkit, which was co-produced with people with lived experience of domestic abuse who had, or whose abusive partner/family member had, a cancer diagnosis. The toolkit was developed to support healthcare staff in identifying and responding to signs of domestic abuse in patients with cancer and their carers. The toolkit equips healthcare staff with an understanding of different types of domestic abuse and cancer-related vulnerabilities, red flags to look out for in the cancer context, and what to do if they suspect someone is experiencing domestic abuse. IRISi was part of the national working group that helped to shape the toolkit, which was co-produced with people with lived experience of domestic abuse who had, or whose abusive partner/family member had a cancer diagnosis. Marion, a voice of lived experience, shares her experience below.
Two concepts; both awful and together are toxic. Toxic but all too frequent.
By Marion, a voice of lived experience.
One in five of us in England and Wales has experienced domestic abuse since the age of sixteen1. Alongside this, nearly one in two of us will be diagnosed with cancer in our lifetime2, and a 2016 report from Macmillan Cancer Support shows that 1.5 million of us are caring for someone with cancer3. This number has likely increased in the intervening years.
I was one of those statistics. My (then) husband was, at best, controlling, and once he was diagnosed with cancer the brakes were off. Promising to ‘love, honour and obey’ someone requires a level of tolerance; when that someone demands that you do as you are told at all times or suffer the consequences it requires subservience. When ‘till death us do part’ is in the equation the problems really start.
Coercive control is often hard to spot. It begins insidiously. ‘Please wear that skirt, I like you in that’ – expressed in the midst of early love-bombing doesn’t seem too much of an ask. ‘Wear that skirt or I will tie you to the bed and leave you there’ only comes later. This stage came for me after he had been diagnosed. It came after I had been told to ‘cut him some slack’.
I was a nurse; many years of my practice had been within cancer and palliative care. I knew about melanoma, about poor prognosis, and about death. What I didn’t know was what it felt like to sit next to someone and hear that there were more tumours, that they were in the groin, and that clearance was necessary. I also didn’t know what domestic abuse meant in all its guises. I thought (and I am ashamed to admit this) that DA happened when the (unemployed) man came back drunk from the pub and hit his (under-educated) wife. I didn’t know that it was also a calculated performance designed to denigrate, frighten and diminish someone that you were supposed to love. I didn’t know that abuse was days of silence, of unvoiced anger, of stonewalling. I didn’t know that it was obedience or suffer the consequences.
I must not have noticed this hundreds of times during my career. Not once did I recognise it. And of course, people with cancer are suffering, aren’t they? Of course, they get angry. I have put my head on one side and sympathised time and time again.
He was rude to me in front of the doctors and the nurses. And sometimes they took me to one side, but none of us knew what was really going on. I couldn’t tell them, and they couldn’t ask. And if anyone had spotted the abuse, and had named it, what would we have done? I didn’t need a refuge, but I did need to feel a whole lot safer than I was. I needed someone to help me understand that this was not acceptable. I needed every healthcare professional that we met to realise what was happening. I wanted the receptionist to see, the cleaner; I needed someone to notice that it wasn’t just him that was dying. I summoned all my courage after a particularly awful evening when I came a whole lot closer to death than he was and went to see my GP. I went to her because I could legitimise the visit using palpitations as an excuse. I told my GP about the non-fatal strangulation – I needed someone to know how awful it was, to validate my fear. She listened and sympathised and asked me to reassure her that I would leave him if he wasn’t dying. She meant well. But I felt even more trapped – I felt even more clearly that I would have to stay until he died, that leaving wasn’t an option. I don’t know what I had wanted her to say, but I think it was something like ‘You don’t have to stay and if you want to leave, I can help you with that’.
So, I stayed because he was dying. I could stick it out because it was finite. I could imagine a life without him. What I couldn’t contemplate was years more of torture. The day the consultant told us that the new treatment was working, that only the largest tumour remained and that even that wasn’t growing was the end of our marriage for me. That day I sobbed in the consulting room. I think some of them thought it was tears of relief. The consultant did seem to understand. She had told me that she had left an abusive relationship. The more I cried the more frightened I became. I didn’t know how to leave, and I still thought that the man I had met and had fallen in love with, had married, would return. And I had promised to look after him – I was a nurse.
I looked to his parents for help, but they knew they couldn’t intervene. I tried desperately to keep in touch with my friends, but I didn’t tell any of them the whole truth. I couldn’t believe what was happening and I was too ashamed of what I allowed to describe the horror. Yes, I was ashamed. How could I let this happen to me? I know now, I understand, and I no longer feel guilty about leaving a man who will, at some point, die of his cancer. I have, after a great deal of work, forgiven him.
Healing is taking a long time. Healing, for me, has been about speaking out. It’s being the voice of the lived experience of cancer and domestic abuse; talking about the unmentionable.
“I would like GPs and practice staff to know that they are a relatively safe place to talk about DA”
I have worked with Standing Together, Macmillan Cancer Support, and the University of Bristol as a member of the Cancer and Domestic Abuse steering group for the last three years. This has been a cathartic experience, validating my experience as stressful and complicated. I have spoken openly about what happened to me and it’s been like lancing a boil, letting out the ill feelings that I had held inside me. Seeing the first UK cancer-domestic abuse research from an earlier project phase published, and an article in the British Journal of Nursing with myself as the second author, helped me to see that I wasn’t a victim – but a voice of lived experience – speaking out about the unmentionable. The toolkit is a comprehensive guide which I would like everyone who interacts with patients and carers affected by cancer to read and learn from. I don’t want what happened to me to go unnoticed again.
I would like GPs and practice staff to know that they are a relatively safe place to talk about DA and I would like them to be up to date with concepts such as coercive control and to understand how this is manifest within the sphere of cancer. I would very much like them to be confident about signposting people who are experiencing DA to the most appropriate service.
I would like all healthcare professionals to be alert to the idea that bad behaviour is inexcusable regardless of the disease, that bad behaviour can be indicative of DA, and that discussing this very difficult subject is part of caring for a patient and their family.
My hope is that extensive use of our toolkit will move us all closer to improved care and support for those being abused while dealing with cancer.
https://www.cancerresearchuk.org/health-professional/cancer-statistics/risk
