FOR CANCER patients who may have endured surgery, chemotherapy and radiotherapy and are now free of cancer, getting life back on track can be a challenge.

While it’s normal to feel fatigue during treatment and immediately after, for about a third of people the tiredness can persist.

“The technical definition is ‘a distressing, persistent and subjective sense of tiredness or exhaustion’,” explains Dr Sonya Collier, principal clinical psychologist at St James’s Hospital, in Dublin. “It’s very different to normal fatigue in that it’s not proportional to the activity that the person has just been doing. The other big difference is that rest doesn’t solve it,” she says.

A new self-help manual and DVD, however, devised by Collier and her colleague, consultant psychiatrist Dr Anne-Marie O’Dwyer, is designed to help those who have completed their treatment at least six months ago but who are still experiencing fatigue to feel their best again.

Tackling issues such as inactivity, low mood, sleep problems, worry and reclaiming life after cancer, the pack uses cancer experts, former patient stories and Irish celebrities such as TV presenter Miriam O’Callaghan and rugby player Gordon D’Arcy to introduce each chapter.

Collier says the symptoms of persistent cancer-related fatigue, which can be both physical and psychological, often go unrecognised by GPs.

“We’ve done some research on this with Trinity and patients feel that cancer-related fatigue is often misunderstood by GPs and also that GPs aren’t familiar with it and don’t really know what to do with it,” she says.

Describing the symptoms, Collier says: “Maybe you used to be able to walk for half an hour and now after five minutes, you’re exhausted. Or things you used to enjoy like playing with the children, you now find a chore because you are so tired.”

She says while a good night’s sleep might cure such fatigue for most of us, “for those with cancer-related fatigue, it doesn’t matter how long they sleep, they still feel exhausted”.

Collier says fatigue that persists long after treatment is caused by numerous factors. “After surgery, people might be in bed for a period of time recovering because they are very sore and not very mobile and, of course, the longer you are in bed, the more de-conditioned your body is becoming and the less fit you are. Your muscles are deteriorating and, from a cardiovascular point of view, you are really deteriorating as well.”

She says the tiredness can also be linked to how people think about their energy. “Some people want to mind the energy they have because they’re afraid that if they use it up, they won’t have enough if something important comes along,” she says.

“But unfortunately that feeds into problems because what happens is that fitness levels just get worse and worse and their energy levels decrease further.”

The manual and DVD pack, titled Understanding and Managing Cancer-Related Fatigue,uses a cognitive behavioural therapy (CBT) approach, looking at how people's thoughts and misconceptions can feed into their fatigue.

“For example, people who sit and do very little because they are afraid their energy won’t return – that thought actually feeds into a cycle of fatigue,” explains Collier.

“Others do the opposite and think, ‘Right, I’m six months post-treatment and I have to throw myself back into life’, and they try to do too much too soon. We try to teach people more realistic ways of thinking about it.”

Collier says another factor that can feed into fatigue is worry. “Persistent worry that the cancer is going to come back is the most common one,” she says.

“We would call that Damocles syndrome – this idea that, like Damocles, you are waiting for the sword to fall and you become entirely preoccupied by that and are not able to engage with normal life at all.”

Collier says the self-guided manual and DVD format is ideally suited to many with cancer-related fatigue as they can follow it in their own home, in their own time. For those with depression or very severe anxiety, however, one-to-one intervention with a clinical psychologist or psychiatrist would be a more appropriate course of action.

She is hopeful that the programme will help people to tackle one of the biggest problems they face following cancer treatment.

“People have gone through so much – destructive, often body image-changing – surgery that can be painful. They’ve gone through chemotherapy and radiotherapy, all to try to manage and battle this cancer.

“You come out the other side, cancer-free and it should be back to life as you know it.

“But we know from our own patients here and also from the research, that persistent cancer- related fatigue actually destroys quality of life and causes them to really struggle to get enjoyment from things.”

Funded by St James’s Hospital, the Regional Oncology Programme Office and pharmaceutical firm Roche, the pack is free. For information, contact St James’s Hospital, Dublin, tel: 01-4103457.