The Conversation: Dying Matters' Blog

I remember when I was young, lying awake at night and being scared of dying. I wasn’t scared of any pain that may be involved in my death, what scared me was the thought of not being able to do all the things I wanted to, simple things at that age - not being around to play football with my friends being my biggest fear. I can’t understand the rationale behind my thinking: I was perfectly healthy and had hardly ever been to the doctors, but occasionally these dark thoughts would cross my mind. Thankfully, I grew older; the fears went to the back of my mind and life moved on.

On April 1st 2008 my twenty year old daughter Melissa was told that the non-Hodgkin’s lymphoma she had been diagnosed with back in August 2007 was incurable and in a matter of weeks (at best, months) she would die. My fear returned, not for me, but for her, my child. I thought of all the things that she wasn’t going to be able to do; all the plans she had made that would remain unfulfilled and all that she was going to miss out on. For a moment, the world stopped, we couldn’t imagine life without her. We couldn’t imagine her not graduating from university, getting a job, getting married, having children.

After the initial tears from all of us, Melissa began to make new plans, she wanted to go shopping in Liverpool, buy some clothes from 2the Liverpool FC shop, she wanted to see her friends, buy a new mobile phone and she wanted to go to a football match for one last time and perhaps, most importantly, she wanted her family with her when she died and she wanted to die at home.

In terms of her care at home a plan was put in place involving many agencies, GPs, district nurses, hospice nurses and many others to ensure that Melissa’s care was the best it could be. A Liverpool Care Pathway plan was put in place and all agencies communicated. At the same time, we as a family were putting plans in place: the shopping trip, the football, and the friend’s visits. We adopted a “can’t do, can do” attitude. We can’t do this, but we can do that! Melissa’s famous quote to us was, “I may be dying, but I’m still living.”

Seven weeks after being told her illness was incurable, Melissa passed away. She was at home, with her family. The previous six weeks had seen her shop in Liverpool, buy her phone and see her last football match, not to mention some special times with visits from family and friends.

In the weeks and months that followed Mel’s death, I began to realise how good her end of life care had been, and how special those last few weeks were. Watching your daughter die is the most horrible thing you can imagine, but knowing that in the final weeks of her life her wishes were adhered to gave incredible comfort to us all. Melissa may have been only twenty years old, but really, her age is immaterial. Whatever your age, if you’re able to talk openly about your death you can help to make an unbearable time, more bearable for all involved.

I know that talking and communication between agencies can make so much difference and for that reason I am supporting the Dying Matters Awareness Week by sharing my experience with people. Having seen good palliative care in action, I know what is possible and my wish is that all people will one day receive the excellent care that was afforded to us, and most importantly, Melissa.

Ian Leech

• Since Melissa's death, Ian has set up www.mad4mel.co.uk, where you can find out more about Melissa's short life, as well as details of the charity and awareness-raising work Ian has been involved in, and his work with End of Life Care.