Pier Shilliday recalls the day she sat her five-year-old down beside her as her hairdresser deftly shaved off her hair. “I didn’t want my daughter to get a shock later on,” says the young Australian teaching assistant, who is being treated for non-Hodgkin’s Lymphoma, a cancer of the lymphatic system. “I thought this would be a way to normalize the situation. After watching for a while, she asked if she could go out and play?”
Pier narrates the incident perched on a pink sofa at Majlis Al Amal in Dubai Healthcare City, surrounded by women from varied walks of life, who in all probability would never have met had it not been for the majlis. At the majlis, which nestles behind the modernistic walls of the Al Jalila Foundation, they talk about everything that finds its way into a woman-to-woman conversation. They also talk frankly about their cancer journey.
Majlis Al Amal – Arabic for lounge of hope – is a little gem in our materially turned-on world, where commercial urges often edge out altruistic impulses. Done up to almost Instagrammable perfection in predominantly pink, the space offers itself up for free to women with cancer. The welcome goes out to their families as well.
Its parent body, Al Jalila Foundation, set up by His Highness Sheikh Mohammed Bin Rashid Al Maktoum, Vice-president and Prime Minister of the UAE and Ruler of Dubai, almost a decade ago, is well known for its philanthropic work on a global scale. The majlis is its latest offspring, just about 5 months old.
As word about its existence gets around, women seek the space, often between chemo and radiation sessions at a hospital among the many that surround the cancer drop-in centre. They can, quite literally, kick off their shoes and settle into couches to sip tea, coffee or infused water, sample snacks on offer, find a listening ear to share immediate worries and anxieties, maybe opt for a massage, or try on wigs for size, join a Yoga or Pilates class, or get some make-up tips.
Some women drop by even to just relax for a while and power up their laptops, plugging in earphones and getting some work done without having to feel self-conscious about how they look after chemo and radiation.
“It’s nice to have a safe zone,” says Britisher Shivani Radia, who has breast cancer. “I can sit here with no turban and not worry about scaring anyone.”
Manon Van Buuren from The Netherlands, agrees. “It’s so nice not to have to explain that I’m not feeling well… although I may look OK to you.”
Another regular, Pier, adds: “The first day I was here we were doing an exercise class and I was in there laughing my head off and straightaway I felt so relaxed. I didn’t even know these girls 45 minutes before I came in.”
The beginnings
For most of us, cancer might take a bow in our mindscape once or twice a year when pink October rolls around, or our children take in baked treats to raise money on Pink Day. However, for those with cancer, it’s an everyday reality.
“It’s 365 days of the year,” says Egyptian Lamya Gabr, who manages the majlis, and a breast cancer warrior herself.
According to the World Health Organisation, cancer caused nearly 10 million deaths – one in six – worldwide in 2020. The most common are breast, lung, colon and rectum and prostate cancers. Survival depends largely on early detection and treatment.
According to Lamya, the majlis is trying to fill a perceived gap between a largely automated line of treatment – diagnosis, surgery, chemo, radiation – and the emotional rollercoaster ride cancer warriors find themselves seated on. The ups and downs often extend well after remission and the end of treatment.
“In Arabic, cancer is ElWaram ElKhabeeth, which translates to malignant, evil and sometimes wily,” says Lamya. “It’s because this disease plays with your mind, and you are in constant fear of what is next and whether there is an end to this.”
Majlis Al Amal was inspired by Brest Friends, a community support group started in 2005 by Emirati breast cancer surgeon Dr Houriya Kazim, to spread awareness about the widescale prevalence of breast cancer, and the need for early identification. This was particularly important among the Emirati community where just 20 years ago, the disease was a taboo topic.
The majlis is, however, open to women with all types of cancer. It’s a compact space with an airy high-ceilinged lounge leading to a massage room. Further down the corridor is a room with floor-to-ceiling windows where fitness classes are held. For events such as talks and music concerts, the majlis uses the Al Jalila Foundation’s auditorium.
“Around the world, community drop-in centres have proven to contribute greatly to the healing process and now we look forward to contributing to bring this unique, life-changing community service to the UAE for the first time,” says Dr Abdulkareem Sultan Al Olama, Chief Executive Officer of Al Jalila Foundation.
The activities at Majlis Al Amal are geared towards the mental, emotional and physical wellbeing of cancer warriors, and are put up in a closed Facebook group. “Music therapy, art therapy, physical wellbeing… emotional support. We had a psychologist in recently. An oncologist visits for an hour, once a week, and anyone walking in can ask questions,” Lamya explains.
Most women come to the center after a fellow cancer warrior flags it up for them, or like Canadian Nicole Edlund, who was urged by her nurse to visit even as she sat trying to process her diagnosis of breast cancer.
“A lady happened to have what I have, Stage IV; she gave me so much hope; she’s so positive. And then you are: ‘OK, I am only Stage II, so if she can do it, I can as well’. She gave me courage,” says Nicole.
Parenting challenges
Shivani Radia realised early on in her cancer journey that it was pointless sugarcoating hard-to-ignore realities. Such as when her young children witnessed their mother being driven off in an ambulance after fainting at home. “There’s no way one can hide some experiences from children,” she says.
Parenting is, undoubtedly, more challenging for cancer warriors. On the one hand as parents, it’s natural to want to shield them from unnecessary pain, and yet, you do want them to develop resilience so they can cope with whatever lies ahead.
For Shivani, the ambulance trip paved the way for a talk with her children on what had happened and why. “I had to deal with whatever emotions came out of it,” she says. “And those emotions are absolutely appropriate — grief, anger — we have to be able to express them and work through them because the more you hold in your body, the more you’re going to have other challenges later on.”
Emirati breast cancer survivor Fakhria Lutfi was taken aback when her daughter – 12 then – brought home a book on cancer. “It was from her friend’s mother. I told her to return it,” says Fakhria. “I felt it was not appropriate to learn about the disease just yet. There’s a time for everything. My son was involved in fund-raising for cancer in school and he asked me if it was cancer that I had, and I said ‘yes’.”
It’s always dicey when it comes to sharing information with our children — how much, when, and how are personal decisions that don’t fit one-size fits-all moulds.
When Howaida Gorton was diagnosed with breast cancer, her first reaction was typically maternal – thank God it’s me and not my daughters, little knowing that in time her daughters would join her.
She recounts an episode in her grandson’s school where another child spoke of his grandfather dying from cancer. It immediately sparked a crisis of sorts for the little boy who was left wondering if the same was going to happen to his mother. “We have a situation, is what the teacher told my daughter when she went in at pick-up time!” says Howaida.
It’s all about the subliminal cues children soak up, which could resurface as scar tissue in years to come. “I try not to lie around on the sofa when I’m tired,” says Nicole. “I don’t want my children growing up and remembering me like that. If I’m tired, I go to my room and shut the door.”
As with all parents, cancer warriors too can thrive in a supportive environment with time for self-care and the space to just be. This for Pier Shilliday is a little corner in her bedroom where she paints ‘during my downtime’.
However, she recognizes that it’s possibly a bit of a privilege. “I met a lady here the other day, who said she lives in a one-bedroom. A place like the majlis gives you a space away from the family, where you can sit and be quiet if you want to, away from the hustle and bustle of your normal life because if you have children, they still want you. And you can only do so much at certain times. So, the majlis is a sanctuary.”
No longer a lonely journey
For Manon, a mother of two, the journey, until she discovered the majlis, has been lonely. “I have rectal cancer. Absolutely no one talks about it. In our schools, there’s pink week, but do we have a blue week? (Dark blue being the colour for colo-rectal cancer.) That’s why the centre is amazing. I am not going to be cured. I’m not looking at six months of surgeries; I’m looking at treatment for the rest of my life, however long that may be. But how am I going to fill in that time?”
As the women chat, it is apparent that their loved ones can’t quite share their personal struggle. “We need someone who can relate to what we’re going through and unless you have been through it yourself you can’t,” says Howaida Gorton from the UK, who regularly offers to buddy women who have been newly diagnosed, often visiting them in the hospital to keep their spirits up.
Fakhria is a celebrity of sorts having been featured in Vogue Arabia and promotional videos, where she has been outspoken about her journey with breast cancer “in the hope that it will help my people”.
She stresses how important it is to surround yourself with those who don’t put you down. They could even be your loved ones, overwhelmed by the impact of the diagnosis on themselves.
The majlis is a non-judgemental place where they can just be the way they feel in the moment. One day it might be cheery and ebullient, the next unenthusiastic and drained from lack of sleep. If on a given day, they feel in need of every scrap of information they can get, a week later they frantically exit every Whatsapp group, unable to process all the information.
“It all starts in the head,” says Lamya, who counsels women to take ownership of each day, even a down day. “When you are having a down day, take it. You deserve a day to cry it out, and deal with your emotions. But at the end of the day are you going to stay crying a second day, or will you take it as a new day and move on.”
This shift in mindset cannot be overemphasised because a cancer warrior’s battle is a long one and doesn’t end with aggressive treatment. “There are the pills to take … may be for 5, 7 or 10 years and they do have side effects,” says Lamya. “And there’s always the fear of your yearly scans!”
Indeed, tremendous mental strength is called for.
For one, there’s the endless waiting. “My time is not mine anymore,” says Manon rather poignantly. Either it’s waiting for an appointment to come through, waiting outside the doctor’s office, waiting for treatment or waiting for insurance approval – an ordeal in itself. Or it’s waiting for the results of each yearly scan once in remission.
There’s nothing like disease to throw your mortality in your face. And almost overnight priorities change.
“I look at life differently now,” says Howaida. “Things that used to be so important to me are now so mundane. Was I really worried about that!”
“Cancer was a blessing,” Fakhria says. “I lost two friends – one in a car accident and another in her sleep. When I was diagnosed, I felt God is giving me a chance. All I pray is for the strength to get me through one day and the next. It’s hard in the beginning; there’s always the fear, but it gets better every day.”
“Personally, I am blessed because I have learnt more about myself meeting all the other ladies,” says Lamya. “Everyone comes with a different strength, everyone comes with a different story, everyone handles things differently and every time I hear one of those stories, I get stronger.”
Donors and benefactors
All the sessions and services, the catering and maintenance of the majlis is thanks to the generosity of individual donors and corporate benefactors. For starters, the design and fit-out of the lounge was sponsored by the UAE Marriott Business Council.
Magrudy’s donated the titles that comprise the in-house library. Several eateries pitch in with the daily catering. Medical experts come in to support the women, clearing their doubts regarding treatments and side effects. Flower shops provide floral arrangements. Fitness studios alternate to provide Pilates and Yoga classes. There are professionals for wig-fitting and make-up and those who provide therapeutic massages.
Neuro-Pilates instructor Rupal Teraiya comes in twice a month to hold sessions at the majlis. “The centre has been inspirational to me, seeing the strength of women and the community working together,” she says. “The unconditional giving of individuals.” According to her, the ladies have reported a boost in energy after the sessions. “They tell me it helps them breathe better, lifting the fog and brightening their day.”
Lalitha Viswanath teaches Yoga and is a trained manual osteopath who helps those with chronic musculoskeletal issues. According to her, healing physically is easier. “It’s the mind that’s more challenging. As a therapist I feel really happy seeing each one of them in their best spirits at the majlis. I think we owe this to the majlis for providing a venue that gives them hope and strength. It is an absolute joy to work with them.”
How you can get involved
Yes, even if you are just an individual with just time to offer, you can help Majlis Al Amal, where everything from the services offered to the snacks laid out, are donated.
Get in touch with Majlis Al Amal for guidance on the talents and skills you think you can share.
Website: https://www.aljalilafoundation.ae/what-we-do/majlis-al-amal/
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