Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
David and I were married for 25 years when he was diagnosed with terminal lung cancer in April 2012. Like so many other people we naively associated lung cancer with smoking but David and I had never smoked in our lives.
Following this diagnosis, I gave up full-time work to care for David through cycles of chemotherapy which were successful in keeping the lung cancer stable. However, In November 2013, he became very ill with numerous urinary tract infections and ended up in hospital several times. I kept asking our GP and the hospital consultants to refer my husband to Urology as we knew something wasn't right - he kept having blood in his urine, stomach and pelvis pain and constant urine infections.
After much fighting, David was referred in June 2014 to the Urology Department and sadly a cystoscopy revealed metastatic bladder cancer, completely unrelated to the lung cancer. He had months to live.
In August 2014, David was admitted to a hospice because his calcium levels were sky-high and the radiologist wanted to keep a close eye on him while he undertook radiotherapy to try and relieve symptoms. However, David's health quickly worsened due to acute kidney failure and on 28 September 2014 he came home to die.
He passed away peacefully at home as was his wish, with me by his side, on 6 October 2014.
Through our journey in those last months of David's life, I want to say that the services we received from our GP and district nursing team were sub-standard and our complaint is now being handled by the Parliamentary and Health Ombudsman. However, the support we received from the hospice was outstanding. They provided us both with support, information, counselling and aromatherapy that helped us talk about, plan for and cope with death.
I remember how difficult the conversations were about resuscitation, artificial feeding, pain relief and stopping treatment but the hospice staff were so good at including us as 'partners' in our care (both David as a patient and me as his carer), that it empowered us to feel in control of these decisions and understand that death can be beautiful in the end.
As a carer, I know now that I did not have my needs met early enough and my aim for the future is to campaign to ensure better support for carers of people approaching the end of life. I am also keen to encourage people to think and talk about dying more and to accept it as part of life's cycle, so we can cope better in the aftermath of death.
Finally, I want to thank David for teaching me so much about life in our 28 years of marriage and for teaching me how important it is to also plan for death.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66