Cancer patients suffering with a phobia of chemo
One in 300 feel so anxious they want to quit treatment
By Erin Dean
SHORTLY before her first chemotherapy session, Gemma Coleman was gripped by terror and felt unable to go ahead with the potentially life-saving treatment. Just 33 at the time, she had been diagnosed with both ovarian and womb cancer, and had already endured gruelling surgery.
‘I was incredibly distressed and tearful when I went in for chemotherapy,’ says Gemma, now 35, who lives with husband Jak in Edgworth, Lancashire. ‘The infusion bags of the drug were bright yellow with a giant warning label on them, and I was suddenly swept up with an irrational fear of being poisoned.’
Her reaction was so extreme she ended up being given sedatives to undergo the treatment – the first of six sessions – at The Christie specialist cancer hospital in Manchester.
‘I still stopped the infusion three times as I was so scared, even though I knew I needed it,’ she recalls.
And it would seem, while unusual, Gemma is not alone in suffering from what has been dubbed chemotherapy-phobia.
Fortunately, The Christie has a specialist psycho-oncology unit that specialises in addressing the emotional, psychological and social aspects of cancer and its treatment. After being offered counselling, Gemma was able to complete her course of chemo.
She has agreed to share her story as many patients are unable to access this sort of support, and it’s something she’d like to see change.
OF THE 375,000 people diagnosed in the UK with cancer each year, about a quarter have chemotherapy. Most, if not all, will experience some fear and anxiety at this time. But for a small minority these feelings can be overwhelming, and the distress, which can trigger vomiting, can even lead to patients not going ahead with their treatment.
Cancer nurses at The Christie say that about one in 300 patients feel this extreme level of nervousness about chemotherapy.
Anne Crook, a cancer counsellor at the hospital, is part of the team that helps people overcome fears that may interfere with treatment. ‘While nine out of ten cancer patients would describe themselves as worried, it is much rarer to have this level of distress,’ she says.
There are a range of reasons for the acute anxiety.
Patients may have a phobia of needles, have heard poor experiences of chemotherapy from other people or may be deeply concerned about possible side effects from treatments. Ms Crook also says that
fearing that the powerful medications are poisonous is sometimes mentioned by patients, and some are worried that their appearance will change significantly. About one in ten of these patients will have previously suffered from anxiety or also have a diagnosis of depression.
Elaine Tomlins, a chemotherapy nurse consultant at the Royal Marsden, a specialist NHS cancer
hospital in London, says that she sees about two patients a month who are very anxious about treatment – but that only a couple each year outright refuse treatment.
‘We often hear that someone has relatives who have had a really poor experience with chemotherapy, and sometimes that was years ago,’ she says.
‘Modern healthcare is very different now and treatment is more personalised. Information for
patients about their treatment and dispelling myths is important.’
Ms Tomlins added that longer waits to start treatment can give an unhelpful amount of time for anxiety to build. However, anti-anxiety medication, psychological support and alternative therapies – including hypnosis and acupuncture – can all help patients feel able to go ahead with treatment.
‘We try to wrap support around people when they are very anxious,’ she says. ‘If we can’t – despite our best efforts – get them into the treatment room and administer the drugs, then the oncologist really needs to have a frank, sensitive discussion with them about the implications of no treatment.’
But Gemma admits that her anxiety was so great she seriously considered saying no to chemo, despite knowing the risk. While both her cancers were at an early stage, she knew the treatment would end her chance of having children naturally.
She adds that she felt her behaviour change as treatment came closer. ‘I started spending money I didn’t have on clothes and drinking much more than normal,’ says Gemma, who hadn’t suffered from anxiety before. ‘I snapped at and bickered with friends, and needed sedatives to help me sleep.’
By the time her first chemotherapy session came around she was more than £4,000 in debt on credit cards and had a ‘black feeling of doom hanging over me’.
THERAPY sessions made a huge difference for Gemma and eventually allowed her to get through the rest of her chemotherapy sessions without sedation. When working with acutely anxious patients, counsellors help them unpick their fears around treatment in order to identify what is causing them, Ms Crook says.
‘We would explore these concerns, help them name what the problem is and normalise it by explaining that we have seen other people with the same fears,’ she says. ‘Then we try to find ways to help them manage these concerns.’
Practical changes – such as booking in early appointments to minimise time in the waiting rooms and trial-run visits to chemotherapy suites – can benefit those who find treatment challenging.
Experts recommend that patients struggling with concerns about chemotherapy should find out what psychological support their local hospital offers and contact cancer charities, which often have dedicated helplines.
For Gemma, her treatment is now finished, she is cancer-free and back working full-time as an executive complaints specialist.
She and husband Jak, 37, hope to be able to adopt children one day.
‘By having therapy for the treatment, I found myself feeling better and more accepting of my new circumstances and my loss of fertility,’ she says.
‘The psycho-oncology team was amazing – my fear was almost worse than my illness itself.’
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