A Holistic Approach?

 

Do we think that we are holistically treated during our breast cancer treatment, by our medical teams, or was it just an illness that was treated?

    Naz opened up this very thought-provoking topic and explained that it hits a chord with her, because of the connection between the brain and the body. If breast cancer is to be treated using a holistic approach, then the patient’s individual needs must be assessed and catered for, with treatment offered to cover both physical and psychological aspects. If our wellbeing is not addressed alongside treating the actual disease then we may not fully recover physically as quickly or as thoroughly. Breast cancer is a life-threatening disease that affects our identity as women. Treatment and its after-effects can impair quality of life. For women with secondary cancer - and our group embraces women with both a primary and secondary diagnosis - a holistic approach is even more important as quality of life becomes paramount in ongoing treatment. A holistic approach treats the person first, not just the disease.

    There is a general consensus in the group that the main focus is to get rid of the cancer, which of course is very important, but as the cancer may be “toast” at the end of active treatment in a primary diagnosis, so we are expected to start a long journey of ‘recovery’ and ‘moving forward’, learning to adjust and live with ‘the new normal’. We are expected to return to our lives, our families, our work, functioning fully as we were before diagnosis. Those around us add extra pressure as they encourage us to keep our chin up, to be strong, to keep smiling, to think positive. We are often made to feel that we should be grateful for our treatment, grateful to be alive. However surviving breast cancer is more than just physical recovery.

    A recurring theme amongst our members’ experiences was being abandoned at the end of primary treatment and told to just get on with it. Many of us were given leaflets telling us the facts about our disease and treatment, but very few felt listened to and understood in terms of our ongoing wellbeing. Most of us have found we need to seek out knowledge and reassurance, information and support, rather than having it offered to us. Bewilderment regarding our treatment was common, and finding supportive oncologists and nursing staff is rare. Many of us felt unprepared for our treatment, for surgery, chemotherapy and radiotherapy, and for the ongoing medication that keeps the cancer at bay but causes so many debilitating side effects. We feel like we’ve been on a conveyor belt, with boxes ticked until we are shoved off the other end and on gets the next poor person.

    Many of our members felt that there was no attempt to listen to our wishes. At the initial appointment, we were often told that the medical team won’t know anything so there isn’t a need for someone to be with us, but then we find ourselves alone when we are told that it is definitely cancer. We had lots of examples of decisions being made without consulting us. Our family and partners are not told what is going on and are left in limbo, and of course they are unable to support us without information. We are told to contact our Breast Cancer Nurses for help, but they are often too busy to speak to us. There is often no continuity in who we see, and no-one asks as how we feel. We continue to be treated like objects with no voice or views about our bodies and what’s best for us. As one member put it, ‘I often felt like a tumour on legs with a few useful veins attached’. So many members are left with traumatic memories of conversations with medical teams where we felt lost and cold and uncared for. Many have traumatic memories of incidents in hospital where we felt exposed, vulnerable, helpless. We were sent away and told to contact our GPs with any problems, many finding this an impossible route for support as GPs do not have any specialist knowledge of breast cancer.

    With a secondary breast cancer diagnosis there is rarely a holistic approach, in fact quite the opposite, the care can be completely focussed on the physical, the pain relief, the drugs to keep the cancer at bay. Women with secondary cancer do not want be written off, we have the right to a better care system. It’s gut wrenching to be told that we can’t be cured, and psychological support in dealing with the mental crisis this presents is absolutely paramount, but sadly lacking. The breast cancer care system appears to be set up entirely to support primary cancer, with few specialist nurses or support for secondary cancer patients. Many of us turn to hospices for support, and we do find a lot of help there, but it may be challenging to push for referral, often due to lack of communication from our medical teams. Many of our women with secondary cancer have become strong advocates for our own care and unselfishly fight for better care for others in the same boat. Many of us have raised complaints when we have been badly treated, and we hope that this paves the way for improvement for those following us.

    Lockdown has made the situation even more difficult, as the support we would normally get has disappeared or gone online, this in itself excludes those of us who do not have the technology to access such information. Complementary therapies and face-to-face courses and support groups either shut down or were replaced by online offerings. Reviews and appointments have been done by telephone and we’ve had to attend appointments alone without the valuable reassurance and support that being accompanied brings.

    A few of us have been lucky and have been supported by holistic cancer support centres, where we have found people to talk to and where complementary therapies have been available for free. Reflexology, Reiki, mindfulness, advice on diet and exercise, all these things are crucial to our wellbeing. Some of us have been offered counselling and have found it helpful but it is usually limited in both length of time and scope. Some of us have had supportive caring oncologists and breast care nurses who have made the time to ensure we feel confident about what is going to happen to us during treatment, and who have helped us to understand how to look after ourselves. Unfortunately these good examples are rare.

    Many of our members have turned to our BRiC group for help and have found the support and information available invaluable. For many, BRiC has provided the holistic lifeline: the place where women are listened to and heard, as a whole person not a broken cancer patient.

    How sad it is that still this disease is not managed in a truly holistic way for the vast majority. The focus is to treat the cancer and move us on. We believe that excellent holistic care and support, including access to complementary therapies, should be made a priority for everyone who has had a breast cancer diagnosis.