Hilary Thomas on clinical management

I am, at last, over halfway through my chemotherapy. A holiday booked long ago forced a slight delay before my latest cycle and so, for the first time in eight weeks, my sense of taste recovered before the next assault. What luxury! I was able to enjoy a whole week of indulgence.

Having felt apologetic about regaling you with my tale, I've also discovered that the 'patient story' has acquired a new status. Even policy wonks and apparatchiks are using it.

And the mantra of safe, quality care now includes reference to the importance of the patient experience. So I will seek your pardon no longer and stay on the bandwagon of this powerful medium.

Years ago a patient focus group indignantly talked of the unwanted effects of chemotherapy - the professional term 'side effects' underplayed and minimised their significance. I now understand precisely what they mean.

My unwanted effects present a long, weary list of moans. These demonstrate just how much my uncomplaining patients have been through. They have my unreserved respect and admiration.

Hair loss is awful. My wig feels hot and itchy. As my hair was falling out, I commented to my other half that every time I look in the mirror my head seems smaller. 'That's a first,' he quipped.

But temporary alopecia is nothing compared to the effect of other hair loss. Losing eyelashes produces a continual stream of tears. The effect is one of perpetual sadness, which creates the appearance of an elderly, careworn Betty Boop.

And then there are the nose bleeds - the drugs I have just finished attack the mucous membranes all over the body, which can mean a sore mouth, indigestion or chest pain, a runny, crusted nose and tummy upset.

Even the most minor injury to my hands results in cuts and grazes, and, to cap it all, this week some of my nails have started to turn brown. I look like I have been force fed with paint stripper, had a cork popped in each orifice and then sent on the world's most extreme rollercoaster.

The advantage of my situation is that I only do what I want to do, where I feel I will add value. I am clear about prioritising and using my sapped energy selectively. Recently I chose to speak at a conference on patient advocacy about the doctor-patient dialogue. The audience - who represented about 80 international patient groups - was inspiring.

One of the organisers told me his sense of taste had been abnormal since 1999 when he had chemotherapy. Although he knows chemotherapy is the reason he is still here, he made me realise just how lucky I am.

With the imminent reforms of patient and public involvement, we have a real opportunity. As I live through my own story and hear those of others through a different lens, I realise this must be the currency for transforming the NHS.

Whether the story is about a lack of compassion from staff, disjointed ineffectual services or the human impact of a disease, it is this detail which needs to be woven into the development of new services and the redesign of existing ones.

By listening to patients and making their voice and experience an integral part of commissioning and planning services, perhaps we can achieve a patient-centred NHS.