‘Prepare yourself for the worst’ said the consultant in February 2016 as she examined a lump on my breast, which by the end of that week was diagnosed as an advanced, aggressive form of breast cancer (Stage 3 HER2+). By September that year, my journey had become one of optimism under the care of oncologist Professor Justin Stebbing. His future as he faces a medical tribunal over his end-of-life care working to extend and save lives – and mine – are now uncertain.
My daughter was 15 and undergoing GCSEs and my son A levels, when I was diagnosed. My father lost his mother at 15 to cancer, leaving him an orphan. I was determined from the outset for my children not to experience the same loss and pain.
I had the mastectomy recommended on the NHS which removed a tumour already more than 6 cm, but I instinctively recoiled from the chemotherapy proposed – FEC, a cocktail of drugs given every three weeks for five months. I wanted a second opinion. Professor Justin Stebbing came recommended by cancer charity CancerActive as a leader in the field. He was sympathetic to my concerns, explaining that he would be giving me the same protocol on the NHS which is given in sufficient doses to last for three weeks. Thanks to insurance, I was able to see him as a private patient, which offered greater flexibility. I liked and trusted him from the outset.
A PET scan revealed I still had cancer in my body and ‘my womb was heating up’. The protocol he recommended, Taxol, a drug made from yew, was given weekly for twelve weeks followed by three weeks of daily radiotherapy and a year of Herceptin. He supported and encouraged all the positive things I had already started to do to enhance my survival chances following advice from charities CancerActive and Penny Brohn UK, my own research and the oncology centre’s Living Well programme. Not all oncologists are as open and supportive of the beneficial impact of an integrative approach which I viewed as a crucial and empowering part of my journey back to health. From diet, supplements, exercise, oxygen treatment and Iscador made from mistletoe to meditation, prayer, acupuncture, and feeling supported, I was on to it.
Small gestures of compassion and kindness remain in my mind as flowers in an uncertain landscape. The gentle rub on my shoulder by the radiologist as she sent me through to the ultrasound department to confirm I had cancer. The support of friends, family and community. The warmth of the nurses as we shared a joke as I was wheeled through to have my breast removed, the supportive touch on my arm. Busy Professor Stebbing who called me over a weekend early in my treatment to answer a list of questions we didn’t have time to discuss at a consultation on a Friday evening. He offered to call. I didn’t think he would, but he did; he genuinely cared. Through treatment he was always there for me with an answer to the smallest question relayed back via his efficient team.
I started treatment with Professor Stebbing in April 2016. By September that year as I had embarked on a year of treatment with Herceptin every three weeks, a drug which can damage your heart, my scan was clear of cancer. I still recall the joy on the Professor’s face as he emerged from the scan room to share the news.
Through 2017, the Herceptin began to drag my energy down. Just as the end of treatment in July came in sight, the rug was abruptly pulled out from under my feet with the arrival of a letter from my insurance company in early June. Treatment could no longer continue under Professor Stebbing’s supervision ‘due to unspecified concerns about some aspects of his clinical practice which are being investigated by the General Medial Council’.
What was behind it all? No reasons were given. I joined a What’s App group of fellow distressed patients all wanting to continue with the oncologist we trusted. Rumours of a whistleblower leaking information to the press abounded. An article written by the Daily Telegraph in June 2017 reporting on letters they had seen from the whistleblower to the GMC over the course of a year implied the case was an ethical one around the Professor’s end-of-life care trying to save lives with patient consent. What were the true motives of the whistleblower whose actions precipitated this investigation?
My letters to the insurance company citing the General Medical Council’s call in 2014 for a climate of ‘innocent until proven guilty’, the GMC’s written statement to me at the time that ‘there has been no finding against Professor Stebbing’, and the fact that he was allowed to continue to practise were to no avail. I was forced to change oncologist to continue on insurance.
I can’t begin to tell you how distressing it is to have the oncologist you regard as your lifeline taken from you during treatment. Having avoided heart strain for almost a year, I was now suffering palpitations – a combination of stress and the Herceptin, according to the heart specialist who had monitored my progress regularly through treatment.
The importance of hope, compassion and empowerment in the fight against cancer cannot be overstated. But where was the compassion here? Conversely, stress needs to be avoided as it creates the conditions in which cancer thrives.
The scan at the end of my treatment was thankfully clear and with persistence, I was fortunately able to see Professor Stebbing on the NHS for continuing six-monthly check-ups. Cancer treatment doesn’t kill the stem cells. The possibility of it returning hides as a spectre in the wings.
The tribunal, currently taking place after more than three long years of investigation by the General Medical Council, which I’m told is not unusual, is not due for completion until April 2021. I heard in November that none of the letters of support including mine written by patients in the supporters’ group, which now numbers c. 500 people, are to be considered reigniting the distress I felt in 2017.
So I write this now as a cry from my heart for compassion for someone I regard as a health hero for NHS and private cancer patients. He is rightly nicknamed Professor Hope as an oncologist willing to fight for his patients and as a scientist who has published more than 600 peer-reviewed articles bringing new, life-saving insights into cancer treatment. I’m so grateful for his genuine care.
One in two people in the UK are predicted to get cancer in their lifetimes. 18.1 million new cases of cancer and 9.6 million deaths from the disease were reported across the globe in 2018 alone.i The global solid tumour market was valued at US$121.3bn for 2018 and is projected to reach US$424.6bn by 2027 – a growth market statistic stripped of compassion for the poor souls affected.ii The dialogue needs to turn to why and empower action to avoid so many people getting cancer in the first place.
Our world of dry processes, markets and economics is failing on multiple fronts. Climate change and biodiversity loss are equal protagonists in this unfolding human tragedy. Care and compassion, not money, need to become the motivations and drivers for change.
‘Life is beautiful’ were the words which unexpectedly rose up in me early on in 2016, the year I was diagnosed with cancer. I made a presentation during treatment inspired by the beauty in images of nature as a cry of hope. Almost five years on, a new year begins. As darkness moves into light and winter unfolds into spring, I feel again gratitude for the gift of life and hope for a better world.
Take a slow moment. 8 minutes; 3 tracks.
This article is written with gratitude for all the health professionals on the NHS and privately, CancerActive and Penny Brohn UK, family, friends, community and fellow cancer patients, who have helped me on my journey and in particular, Professor Justin Stebbing, my oncologist.
Over the coming weeks, I will be writing on different themes making the link between health and nature and sharing my journey to health and a more sustainable future. Join me on the journey.
ii Global Solid Tumor Cancer Treatment Market Expected to Generate a Value of US$426 Billion During the Forecast Period 2019-2027, Research and Markets, Globe Newswire, 3 September 2019