You matter to the last moment of your life
On waking up, my daily routine begins with fitting a prosthetic breast, which I have worn since my mastectomy six years ago. I then fit a tight elastic sleeve and glove to my right hand and arm to help manage the lymphoedema, a painful, debilitating, awkward (yet not uncommon) side effect of breast cancer treatment. I then take nine tablets for my heart condition. I had quadruple heart bypass surgery in 1983 and went into heart failure at the end of last year. Only one of the original four heart grafts is working. This renders me “disabled.” I live with my husband, Eric, who is visually impaired, in Greater Manchester.
I now attend St Ann’s Hospice in Manchester for supportive outpatient treatment as part of the day therapy services on offer. I drive for about two hours, twice each month, to see one of the few physiotherapists in north west England who has specialist training in lymphoedema management. I intend to refer myself to another outpatient clinic where a nurse runs sessions helping people manage breathlessness—which has become more distressing since my heart failure. I enjoy my association with St Ann’s and feel good about becoming actively engaged with their user involvement facilitator as a way to use my experiences to help others in my situation.
My initiation into living with chronic illness began some 20 years ago, after a massive heart attack and then bypass surgery. I was 41 years old, and it was thought that I would not survive. In 1989 I developed breast cancer, only weeks after my beloved elder sister had died suddenly of undiagnosed stomach cancer. I was given intensive radiation treatment in a hospital 50 miles from where I lived (then in the north east England).
When the cancer reappeared at the same site in 1995, it was decided that a mastectomy was the only way to halt the disease. Tests were carried out on my heart to see if I could survive this surgery. The swiftness withwhich all this happened left me reeling, feeling that my life was being run by a management company. However, it was when I was in hospital for a month for radiation treatment that I realised I was facing a very difficult and testing, dark time.
I have always been a person of faith and I knew I just had to find the strength to go on. This was when my faith became of paramount importance to me; I had no other resources of my own to lean on. I literally handed myself over to God and asked Him to help me. I was placed on a high dependency ward with 30 other patients, some of whom I realised were terminally ill. I was shocked to discover that death claimed some patients suddenly when they were alone in the night. There seemed to be no warning, no time to call for loved ones to be near when they passed away. This disturbed and saddened me. I felt I wanted to contribute to their pastoral care in some small way. These patients seemed in much greater need than I did. The nurses (two on night duty) did their best.
I asked if I could help with giving patients their night drinks. In doing so, I was able to spend a little time with patients who were at the end of their lives, talking quietly, listening, praying where appropriate, holding their hands. I further came to realise that often I was the last person they saw before they died. This had a most profound and deeply moving effect on me. It changed my attitude to death and dying. To this day, I am greatly concerned that, because of lack of resources and palliative care, many people die alone.
I have had to learn to live with chronic illness, as many people do. Everybody needs somebody, something to sustain them through the bad times. For me it is my Christian faith. I cannot imagine a life without a spiritual dynamic, with or without illness, and, for me, a life shared with God is the way to wholeness and peace. Though my faith is central to my life, I recognise that others may not feel able to exercise faith or pray when the going gets tough.
Clinicians and doctors can offer drugs, surgery, and bodily care, but at the point of death, for life to have dignity and meaning, people need something more than that what the specialists can offer. The holistic approach adopted by the hospice movement acknowledges the physical, emotional, and spiritual needs of patients from all backgrounds and of different faiths or no faith at all. The hospice recognises that for people who have life threatening illnesses and are facing death, spiritual issues come to the fore irrespective of a patient’s beliefs. In the words of Dame Cecily Saunders, “You matter because you are you. You matter to the last moment of your life.” At the hospice, unique care will be provided—care as unique as every individual.
Facing my mortality when only 41 years old caused me to think of end of life issues on a very practical level. I have kept my will updated and made my wishes as to funeral choices known. This has led to my decision that, if the situation arose that I was at the end of my life and not able to speak for myself, I would want only that my pain would be controlled and I would be allowed die naturally. I would not want to be resuscitated or to breathe by means of a machine. Anybody can make his or her needs known by means of a “living will,” and I have taken every precaution to make my views on this issue known to those caring for me.
Over the past 10 years, I have written a few articles and poems, some of which have been published. Here is one of them. I pray it will give you new insight and hope.
Irene Brignall, patient
St Ann’s Hospice, Manchester