Shortly before her first chemotherapy session, Gemma Coleman was gripped by anxiety and felt unable to continue with the potentially life-saving treatment. She was only 33 at the time, had been diagnosed with ovarian and uterine cancer and had already undergone grueling surgery.
'I was incredibly sad and crying when I had chemotherapy,' says Gemma, now 35, who lives with husband Jak in Edgworth, Lancashire. “The IV bags containing the drug were bright yellow with a giant warning label on them, and I was suddenly overcome with an irrational fear of being poisoned.”
Her reaction was so extreme that she was eventually given sedatives to undergo the treatment – the first of six sessions – at The Christie specialist cancer hospital in Manchester.
“I still stopped the IV three times because I was so scared, even though I knew I needed it,” she recalls.
And it seems that, while unusual, Gemma isn't the only one suffering from what's known as chemotherapy phobia.
Gemma Coleman, 35, pictured right with her husband Jak, left, was diagnosed with ovarian and uterine cancer, requiring chemotherapy after major surgery
Fortunately, The Christie has a specialist psycho-oncology unit that specializes in addressing the emotional, psychological and social aspects of cancer and its treatment. After receiving counseling, Gemma was able to complete her chemo treatment.
She has agreed to share her story because many patients do not have access to this type of support, and this is something she would like to see change.
Of the 375,000 people diagnosed with cancer in Britain each year, around a quarter receive chemotherapy.
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Most, if not all, will be experiencing some fear and anxiety at this time. But for a small minority, these feelings can be overwhelming, and the distress, which can lead to vomiting, can even prevent patients from continuing their treatment.
Cancer nurses at The Christie say that around one in three hundred patients experience this extreme level of nervousness about chemotherapy.
Anne Crook, a cancer counselor at the hospital, is part of the team helping people overcome fears that can interfere with treatment. “Although nine out of 10 cancer patients would describe themselves as worried, it is much rarer for them to be at this level of anxiety,” she says.
There are several reasons for the acute anxiety.
Patients may have a needle phobia, have heard bad experiences with chemotherapy from other people, or be very concerned about possible side effects of treatments. Ms Crook also says fears that the powerful drugs are toxic are sometimes mentioned by patients, with some fearing their appearance will change significantly. About one in ten of these patients will have previously suffered from anxiety or also been diagnosed with depression.
One in 300 cancer patients is afraid of undergoing chemotherapy treatment
Elaine Tomlins, a chemotherapy nurse at Royal Marsden, a specialist NHS cancer hospital in London, says she sees around two patients a month who are very concerned about treatment – but only a few a year refuse treatment outright.
“We often hear that someone has relatives who have had very bad experiences with chemotherapy, and sometimes that has been years ago,” she says.
'Modern healthcare is very different now and treatment is more personal. Information for patients about their treatment and dispelling myths is important.'
Ms Tomlins added that longer wait times before starting treatment can provide a useless amount of time for anxiety to build up. However, anti-anxiety medications, psychological support and alternative therapies – including hypnosis and acupuncture – can all help patients feel like they can continue with treatment.
“We try to support people when they are very anxious,” she says. 'If, despite our best efforts, we cannot get them into the treatment room and administer the medication, then the oncologist really needs to have a frank, sensitive discussion with them about the consequences of no treatment.'
But Gemma admits her fear was so great she seriously considered saying no to chemo, despite knowing the risk. Although both of her cancers were in the early stages, she knew that treatment would end her chance of having children naturally.
She adds that she felt her behavior change as she got closer to treatment. 'I started spending money I didn't have on clothes and started drinking a lot more than normal,' says Gemma, who had never suffered from anxiety before. 'I was snapping and bickering with friends, and needed sedatives to sleep.'
By the time her first chemotherapy session took place, she had more than £4,000 in credit card debt and had a 'black sense of doom'.
Therapy sessions made a huge difference to Gemma and ultimately allowed her to get through the rest of her chemotherapy sessions without anesthesia.
When working with acutely anxious patients, clinicians help them allay their fears around treatment to identify what is causing them, says Ms Crook.
“We would explore these concerns, help them identify what the problem is and normalize 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 appointments early to minimize time in waiting rooms and trial 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.
Gemma's treatment has now been completed, she is cancer-free and is back to work full-time as a managerial complaints specialist.
She and husband Jak, 37, hope to one day adopt children.
'Receiving therapy before treatment made me feel better and more accepting of my new circumstances and my loss of fertility,' she says.
'The psycho-oncology team were amazing – my anxiety was almost worse than my disease itself.'