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What can nurses do to help cancer survivors?

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Dr Frances Goodhart believes that nurses can make a real difference to patients recovering from cancer by providing information, honesty and support

I recently drove past a billboard in the USA. Beneath a picture of a beaming man it said: “After cancer every day is a great day.” The misconception here is shocking – and very common. Yes, some people do ‘bounce back’ after cancer. But the vast majority find things far more complicated than that.

I tell my patients that having cancer is a bit like being in a boat when a massive storm hits. Before cancer, you are sailing along roughly in the direction you want. Then the storm of cancer hits. Your boat is tossed around, things fall apart and you wonder if you’re going to make it. A lifeboat appears – your cancer team – they patch your boat up, tow you back to shore. But as you reach harbour they leave. Your friends and family are on the shore waving and cheering, but you don’t know how to get to them. In your worst moments, you don’t think you ever will.

Webchat 10 June 2011: cancer survival, the nurse’s role

Around 2 million people in the UK are currently living with or beyond cancer. The first Sunday in June is National Cancer Survivors Day, a way to celebrate survivorship but also to recognise that life after cancer isn’t always plain sailing. This has been going for 24 years in the US, but is relatively new here in the UK.

These days there is a growing awareness that cancer has long-term physical effects (eg. damage to fertility, weight changes, sexual dysfunction, lymphedoema or ongoing pain). The practical and financial consequences of cancer are also being recognised. However, the hidden story of cancer survival is the emotional havoc it can wreak. As that billboard demonstrates, the pressure to be positive after cancer is huge. Few can live up to it.

When Macmillan interviewed 4500 people about the long-term effects of cancer, they found that well over half (62%) had experienced at least one of the psychological conditions associated with cancer survival such as depression, anxiety, anger, fatigue, loss of confidence. And yet, over half of the survivors who sought help from their GP surgery found that cancer wasn’t even mentioned as a possible cause.

I believe it is time to stop seeing the end of treatment as the point at which the patient heads off happily into the sunset. In reality, the end of treatment is the exact point at which many people feel lost, alone, abandoned, and afraid. Some survivors describe this as even harder to handle than the treatment phase itself.

So what can you, as a nurse, do about this? The short answer is, a lot! It is certainly wonderful to celebrate the end of a grueling process, to wave goodbye to the chemotherapy suite, to begin to start “getting back on track”. Ending treatment is a milestone and it’s important to encourage a patient (or loved one, or colleague) to recognise their achievements this far and look ahead. But it’s also important to balance this positivity with an acknowledgement that the next stage has its own challenges – not just physical or practical ones, but emotional ones too.

That is why I wrote The Cancer Survivor’s Companion: Practical ways to cope with your feelings after cancer the first British book to tackle these tricky post-cancer feelings head on. In the book, I help people (survivors, health professionals, loved ones) to understand the key emotions – worries (particularly the fear of recurrence), low mood, anger, relationship and sexual issues, self-esteem and body image issues, sleep problems and fatigue. I then offer simple, practical ways to get these emotions under control.

As a nurse, you can let your patients know that they are not alone if they don’t feel chirpy and optimistic after successful treatment ends. You can reassure them that they can tackle difficult feelings. You can also inform patients that excellent support is available from organisations such as Macmillan (currently piloting health and wellbeing clinics to “ease the transition into survivorship’), or Maggies (offering a ‘Where Now?’ course in groups or online).

Crucially, you can reassure people that reliable studies show that worrying about the cancer coming back will not make it happen (this is a huge concern for many survivors, who think they must be positive or else). And you can show them how simple lifestyle choices such as regular exercise or learning easy relaxation techniques can be brilliant ways to manage mood.

The National Cancer Survivorship Initiative is currently looking at how to individualise post-cancer care, giving detailed treatment summaries to GPs, ensuring access to appropriate information and encouraging patient self management. This is essential work. But it is also complex and will take time to evolve into routine practice.

What we need to do now is to ensure that no cancer patient finishes treatment thinking every day has to be a great day. No one should be left thinking that a down day might increase the risk of the cancer coming back. By simply acknowledging that choppy waters may lie ahead – and there are ways to navigate them - you could make an incalculable difference to the lives of so many survivors.

In short, you don’t have to wait for government reports or guidelines to tell you what to do. There are many simple ways to make a difference. And you can start right now.

Dr Frances Goodhart is a consultant clinical psychologist. She will be taking part in our web chat on cancer survival on June 10 2011.

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