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...
My partner Gina was diagnosed with stage 2B cervical cancer in 2012. We were led to believe chemoradiation would eradicate her condition. Unfortunately, the tumour was far too aggressive to respond and by June 2013 there was little else that could be done for her except palliative care.
Gina was an incredibly proud and brave person who, right up until she passed away, believed she could fight this dreadful disease. Despite the realisation her condition was terminal, we always believed she would live (although, subconsciously, we knew she wouldn't). By the time treatment had stopped, she had been pretty much removed from hospital care and passed over to the community palliative care team, district nurses and GP. This combination of support was tremendous and I cannot thank them enough for the help they gave Gina, but even they could not prepare us for the inevitable.
I remember asking Gina's cancer specialist what signs I needed to look for, how I would know she was about to die. All I got told was, 'There'll be peaks and there'll be troughs but you will know a few days before'. While that was no use to me in trying to understand what was going to happen, in hindsight she was correct. Gina had peaks, she had troughs and I knew when she was nearing the end of her life.
Three weeks prior to her death, she had a visit from the hospice doctor. It was at this point that I was advised to stop work as the doctor feared Gina was close to dying. Despite being barely able to talk, Gina had a discussion with the doctor about hospice care. She was resolute that she wanted to stay at home. I was asked how I felt about this and said I respected her wishes.
Even though Gina was reluctant, it was agreed we would take delivery of a hospital bed so she could be more comfortable as she was now unable to get out of bed. At the same time, our GP contacted me to discuss putting a Statement of Intent in place. My reaction was, "A what?". It was all a huge learning curve. The GP explained she was protecting our interests by writing the statement and I completely understood why it is a necessary part of the dying process. But when I collected the statement and read the words, 'This patient is likely to die within the next 14 days' it really hit home that I was about to loose the love of my life.
By this time the district nurses were visiting three times a day, helping to clean and make Gina comfortable as well as topping up her pain relief. She had a syringe driver fitted as well as her pain killing patches. I still didn't know what to expect and how Gina would pass away. I started researching and most of what I read about the stages of death seemed to marry up with Gina's deterioration, but when it came to the last 24 hours, it was not text book nor was it what I expected to happen.
Her death was quite shocking; she didn't pass peacefully in her sleep as I'd imagined. The morning before she died she managed to whisper to me that all she wanted to do was be out of pain and go to sleep. I was in tears. When the nurse came to wash and change her she immediately called the hospice doctor to attend so her meds could be upped. Despite being on an extremely high dose and cocktail of drugs, now with another syringe driver inserted, Gina did not settle at all. Her family and I kept a constant vigil at her bedside. I'm sure she knew we were all with her. I was tending to her when she took her last breath, a breath I didn't expect to be her dying one. Bless her, she had fought the cancer to the end. I just wish I knew she wasn't in pain when she died but I don't and I will live with that forever.
The one thing losing Gina has taught me is there is no one way people die and you can never prepare for that moment. Nobody really guided us through the dying process. Gina's palliative care was the best we could wish for her but there was little support for those around her.
Before Gina died I was terrified of dying and more so of Gina dying at home (I used to fear waking up with her next to me having gone in her sleep) but dying doesn't frighten me now. It's the loss that's the killer. I also know that dying at home is by far the best place for somebody to die if they have a choice. Gina dying at home enabled us to spend time with her after she passed - she wasn't whipped away so the next patient could take up that hospital bed. The hardest part for me was letting her go, seeing her leave the house with the funeral directors.
I miss Gina every day and still find it hard to believe she has gone, but I am blessed she had the care that enabled her to spend her days where she wanted to be. The house isn't a home without her in it, but it's where I hold all my strongest and fondest memories of all our good, bad and sad times. Living through the death of my partner has also inspired me to want to invest time in helping people who have life-limiting illnesses. Many have wonderful family and friends around them, but others have nobody and that must be terrifying.
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