For 16 years I have known I’m terminally ill. I’ve had to come to terms with the fact I won’t grow old with my husband, or see my grandchildren become teenagers. I’ve seen my body change; I am slowly wasting away. I have faced the mental struggle of being told I’ve 18 months to live, only to see myself outlive the prognosis. I take 38 tablets every single day and rely on an oxygen tank to breathe. My spine is crumbling; I’ve shrunk by two inches. My skin is covered in painful psoriasis, and I have a growth in my stomach the size of a 30-week pregnancy.
And yet, despite this, my biggest challenge is trying to talk to you about the fact that soon, I will die. There’s something about death that people can’t face. We thrive on life; we celebrate it at every opportunity whether it’s a birthday or a christening. And yet, even though everyone who lives will die, death remains the elephant in the room. It’s a stigma, something we need to tiptoe around and leave to care professionals.
This is a plea – to my family, my carer, doctors and specialists; to my friends and neighbours, and the people I’m yet to meet: start talking about death as much as you talk about life. Think of death as something you can control, where you can live out your last wishes safe in the knowledge that the ones left behind will be able to cope without you. Start talking to your children about death as a natural process, not something to be scared of. Children are taught about sex, drugs and taxes, but not how to cope with death. We need to have conversations about dying – because yours could happen before mine.
I was in my early 20s when I was diagnosed with chronic obstructive pulmonary disease (COPD). I was enjoying my life as a singer and music teacher and was newly married with two young children. It was a challenge, but manageable. That was, until around my 38th birthday when I was told COPD would, one day, take my life.
There have been some close calls. On more than one occasion I’ve had chest infections so severe we’ve had to prepare, as a family, to say our goodbyes. I pulled through, but next time I might not.
My sons and my husband are living with this disease as much as I am, and it’s taking its toll. My husband recently had a heart attack and I was powerless to help him. I couldn’t even visit in case I picked up an infection. We sleep in separate rooms and are more like friends than husband and wife. My youngest son has Asperger’s, but rather than me care for him, he’s learning how to help me cope with my illness. My eldest son has children of his own. My granddaughter, who’s just two, lights up my life but even she is aware of my condition. I worry about what will happen to these people when I’m gone.
I’ve planned my funeral. Everything is organised other than the type of coffin I’ll have. I like to go to parties, so we’ll hold my wake before I’m gone. When my death will be, no one knows. I’ve fought my disease for years but I’m at the point where I’ve run out of energy. I’m not giving up, but the battle will now take place from my bed – or my wheelchair, on the days I have enough motivation to get out of the house.
I’m making the choice to die at home, not in hospital, because I’m so afraid I’ll lose control of my death if I’m on a ward. I’ve come across a lack of understanding of my dying wishes; simple education of care professionals could improve this tenfold. How would you like the end your own life to be, and how do you expect that to happen if things don’t change soon?
While some choose to turn a blind eye, many people deeply care about this subject. Organisations are coming together to approach fundraising in unique and different ways, to help bring about significant change. This is everyone’s concern. We can all come together to make a difference by talking about the end of our lives. Talking about death won’t make it happen to you – if it did, I’d have died a long time ago.
I have wishes, like you do. But while yours might be to travel the world or meet your hero, mine are simpler. I wish to live in a world where we talk openly and frankly about death; where, through discussion, those nearing the end of their life are understood, listened to, treated with respect and have the death they want whether that’s at home, in hospital, or in a hospice.
Is that too much to ask?
This is an edited version of a post that first appeared on Care2Save. If you would like to write a piece for Blood, sweat and tears, read our guidelines and get in touch by emailing healthcare@theguardian.com.
Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.