Anger. And ‘irrational anger’. These were the primary emotions Paula McLean used to constantly experience when her family fussed over her with constant offers of making tea and doing things for her while she was undergoing chemotherapy in 2008.
The emotional upheaval she was experiencing wasn’t triggered by the rigours of the double mastectomy, immediate reconstruction and chemotherapy she was undergoing. What was setting her off was her beloved family’s reaction to her illness.
‘It was driving me nuts. They treat you preciously and differently, and each family member has a different perspective of what’s going on. My mother was convinced I was dying,’ laughs the 51-year-old as she recalls her battle with lobular breast cancer before she moved to Dubai from London.
Ten years ago, the situation didn’t seem as funny to the Scottish nurse, though. She was being treated in London’s St. Georges Hospital, also her workplace at the time. Her coping mechanism involved delving straight into work a mere two days after her mastectomy in a bid to ‘normalise’ her situation. It was fuelled by a belligerence that she wouldn’t allow her condition to get her down. But no amount of checking emails from her hospital bed convinced her family she was okay or helped her tamp down the temper that was always bubbling under the surface.
Paula finally decided to seek counselling to learn how to manage her family’s emotions. The year-long cycle of sessions – which started with weekly sessions and then on her request were increased to two sessions a week – she had with a therapist equipped her with a lifetime-worth of insights into her own emotions and managing the illness. Working with the therapist breathed new life into the resuscitation specialist nurse’s life.
‘Counselling changes your whole perspective on life,’ says the cheerful cancer-survivor who now works as a first-aid trainer at Cadaceus Medical Training Team, Dubai. ‘My therapist Caroline was a neutral voice who helped me realise I wasn’t angry at my loved ones but angry at myself, a natural stage of grief (others being loss, denial and acceptance) that breast cancer patients experience during treatment. The crux of everything my counsellor taught me is recognising what you can influence and what you can’t change – I couldn’t change how my family reacted to my illness, but I was in control of how I responded to them. She instilled a positive mindset in me.’
The anxiety that was eating away at Paula is part of being diagnosed with a potentially terminal illness such as breast cancer. In fact, 32 per cent of breast cancer patients surveyed in a 2015 study experienced depression, according to the Asian Pacific Journal of Cancer Prevention. Anxiety is a more prevalent psychological state that contributes to distress in breast cancer patients, says a 2017 study by the Malaysian Breast Cancer Survivorship Cohort.
It’s hard to pinpoint a singular source of stress – breast cancer comes with a gamut of emotions and concerns from disruption of day-to-day life and body image issues arising from both temporary and permanent changes in appearance such as hair-loss due to chemotherapy or the loss of a breast through mastectomy. Often, financial concerns regarding insurances covering treatment cost may plague patients while for women who are yet to start a family, there is the additional worry of fertility. Then there is the universal fear of death. But no matter what your age or financial and marital status, breast cancer diagnosis is always traumatic.
‘The ‘C’ word always comes as a rude shock, which is why breast cancer treatment requires a lot of emotional and social support,’ explains Dr Arun Warrier, consultant oncologist at Aster Hospital, Mankhool.
Comprehensive cancer care, emphasises Dr Warrier, involves a clinical psychologist from the start so both patient and family are educated on coping mechanisms. ‘The doctor has to astutely refer for counselling as many patients might deny feeling low or depressed,’ he explains. ‘In a few cases, anti-depressants might have to be prescribed until the mind accepts [the reality] of the situation and the body is ready for treatment. This ensures side-effects are well tolerated and the treatment is completed in time.’
But recommending counselling can often be difficult, says Dr Shaheenah Dawood, consultant medical oncologist at Mediclinic City Hospital. ‘Counselling is essential through every step of the breast cancer journey but often patients have an already full schedule dealing with treatment and doctor appointments. Plus, cultural barriers to the concept of counselling still exist,’ she explains.
Even Paula, who lauds counselling as one of the best outcomes of her breast cancer, agrees it’s not everyone’s cup of tea. ‘I wasn’t receptive to the idea of counselling in the beginning coming from a stoic Scottish background where you just get on with things and not make a big deal of them,’ she confesses. ‘Don’t feel guilty if counselling doesn’t work for you.’
Emotional support isn’t one size fits all and depends on a person’s personality, says Dr Melanie Schlatter, health psychologist at Well Woman Clinic and a board member at Brest Friends – in partnership with Al Jalila Foundation – who has been counselling breast cancer patients in the UAE for 10 years. Can you cope with a life-altering diagnosis such as breast cancer on your own? It’s hard to say that unless you go through it and your resilience is tested, clarifies Dr Schlatter. There is no text-book personality type that is immune to the disease’s emotional ravages. ‘A lot of people feel safer with one-on-one therapy instead of admitting their illness to strangers or having to manage others’ emotions, but some people love hearing and drawing strength from others who are coping.’
This is where group therapy or support groups come into play.
Brest Friends, the UAE’s first cancer support group, understands this dilemma women face and endeavours to bridge the chasm through a closed-circle support group for intimate conversations. Run by Linda Berlot, a cancer-survivor, a systems coach and a previous Friday cover personality, Linda was spurred to start a closed support circle in addition to Brest Friends’ existing monthly meetings which are more large scale and celebratory in nature due to positive guidance she had from a life coach during her breast cancer journey.
‘The objective is to provide cancer patients or survivors an opportunity to talk about the emotions they’re going through.’ The informal peer group isn’t formally conducted by a psychologist or licensed professional like group therapy is, but it’s a confidential, safe space to share your deepest and darkest fears. ‘We have ladies who don’t leave the house because they feel too sick or despondent but they make sure to attend these meetings because it’s the one place where we can talk about our joys and the funny things of this experience which sometimes involves death and dying. These are topics we can’t discuss with friends or family because it’s too morbid.’
To Linda, the importance of such a support group lies in the sense of solidarity it creates. ‘Understanding you’re not alone is very, very healing. Your journey might be unique but you have a sisterhood around you that is waiting to hold you.’
It is a similar sisterhood albeit a virtual one that Catrin Hughes, a freelance PR professional and mum-of-two decided to turn to after her stage 3 breast cancer diagnosis last year. The Pink Ladies, an informal women-only Whatsapp group of breast cancer patients and survivors was her digital talisman through the year-long treatment that involved a single mastectomy with tram flap reconstruction followed by chemotherapy and radiation at Mediclinic City Hospital in Dubai.
‘I didn’t ever feel the need for formal therapy thanks to an exceptionally supportive network of family and friends who helped me stay on an even keel. For any additional support I needed, the Pink Ladies have been the absolutely best therapy in the world because it’s people who’ve been through the exact same thing as you,’ says Catrin. ‘No question is too stupid and they’re sometimes answered by people who have been cancer-free for 10-15 years which is so life-affirming.’
Pink Ladies was founded in 2014 by breast cancer survivors Nareena Mehra, Sharon Larkworthy, Elaine Callandar, Cathleen O’Connor and Liz Deuten but has now grown into a support network for over 250 women in the UAE and meets on the first Saturday of every month. There’s one tomorrow (see box for contact details).
Being diagnosed with breast cancer can throw a patient in a medical minefield of sorts – being suddenly inundated with procedures and terms that are not clear means the patient must make sense of it all and try to stay level-headed. For Catrin, differentiating between various types of scans and what they involved were some of the practical queries the women on the group clarified.
‘There’s obviously no one giving medical advice as we’re always advised to consult our doctor but it’s a sounding board where we can ask if side-effects of treatment such as mouth ulcers after chemo and hair loss are normal, or women suggest creams to soothe radiation burns on skin.’ One such invaluable inside tip the Pink Ladies gave Catrin was to stay one step ahead of the cancer and shave her head before she found clumps of hair on her pillow. ‘It’s horrible, shaving it off but once it’s gone it’s a big relief and you’re in control of the situation,’ she narrates. ‘And seeing pictures of members’ hair growing back quickly after chemo just normalised the experience.’
Normalising is the key to any emotional support for a breast cancer patient, says Dr Schlatter. ‘Any kind of psychological intervention, whether one-on-one or group is about gaining information about the treatment process and about what they are going through as this gives patients a sense of control and they feel empowered,’ she elaborates. Therapists use specific techniques such as cognitive therapy, sleep hygiene and managing irrational thoughts as coping mechanisms.
After Paula’s implant ruptured in the middle of the Globe Theatre in London ‘leaking fluid and blood looking something like out of a horror movie’, her therapist taught her to focus on being prepared for such accidents by carrying a change of clothes instead of worrying all the time about her body rejecting the implant because that was out of her control. ‘Taking a step to manage the situation gave me a sense of security,’ Paula explains.
The most important part of therapy is the opportunity it gave her to bereave. ‘Not the loss of my breasts because I had no body image issues but I was bereaving the loss of my life before cancer. My therapist rationalised the situation and showed me this was my new normal that I could embrace or wallow in.’
Therapy is actually sort of saying it’s okay to have feelings, says Dr Schlatter. ‘It’s okay to not cope or feel positive. People feel bad for feeling bad and a lot of breast cancer patients and survivors are hard on themselves,’ she says. This is unhelpful as these negative emotions will stop patients from engaging in self-care such as going for a walk or eating healthy or they may indulge in harmful activities such as smoking or alcohol as a coping mechanism.
In Linda’s case, her life coach helped her work through the grief of losing her breasts coupled with the trauma of losing her mother to breast cancer six months before her own diagnosis:
‘When I tried speaking to friends or family about how I looked, they’d say I was beautiful or I was being ridiculous because I was alive. All of that might be true but that isn’t the point. I had to talk about feeling scarred so I could move on. My life coach allowed me to be in the moment instead of pushing me to feel positive or trying to fix me.’
Which seems antithetical to the popular mantra that positive outlook is the panacea for breast cancer.
But the thing with positivity, agree Dr Schlatter, Linda, Paula and Catrin, is that it’s a process and not everyone achieves equanimity overnight. If you aren’t allowed to cope in your own way, you can’t really come out feeling positive and more than positivity it’s a healthy state of mind that’s essential to battling cancer. ‘I’m always cautious of saying you’ll have a better recovery or better prognosis if you’re more relaxed or more positive but a person is more responsive to treatment at a physiological level if they’re calmer and feel more in control’ Dr Schlatter explains. And the reason is purely scientific: stress and depression hamper our immune system. ‘All of us do better if we’re not plagued by anxiety the whole time.’
Catrin recognises the importance of emotional well-being post the rollercoaster ride of diagnosis and treatment and finds the uncertainty of the follow-up tests ‘awful. The anxiety, the dread of [the cancer] coming back is always going to be there,’ she shrugs.
Most of Dr Schlatter’s patients are like Catrin and have approached her post treatment when the stress worsens and they’re always on tenterhooks: ‘All the appointments have stopped and you’re waiting for results or follow-ups. Meanwhile, people around you are pressuring you to get back to normal.’
Therapy can lead you to the light at the end of the tunnel, Paula assures. She has just stepped out of the security blanket of her decade-long medications but she quashes any maudlin thoughts of relapse or death with the coping mechanisms her therapist taught her. ‘She told me to worry about living because we all have to die one day and that can’t be controlled. I can control how I live, so I’m making the most of it.’
Brest Friends at www.brestfriends.org; Pink Ladies firstname.lastname@example.org; Well Woman Clinic at 04 3327117