India Interior

Crocheting to bring comfort to cancer survivors

Taru Bahl | Updated on November 15, 2019 Published on November 15, 2019

A campaign by a practising gynaecologist is making a big difference to women being treated for breast cancer

We have seen our grannies churning reams of crochet lace in the in-between time they got while going about countless chores in the house.

Cut to the present: a wave of excitement runs through a day-long workshop on “Knitting/Crocheting Knockers” where nearly 100 women, many in their early 20s and 30s, revived the age-old “time pass” hobby.

Whether one knew crocheting/knitting was no bar to contributing towards the cause. From a sprightly 22-year-old novice to an 83-year-old experienced crocheter, each lady put in more than her 100 per cent in stuffing the prosthesis. The occasion was a special “Daan Utsav” dedicated to restoring confidence and bringing smiles on the faces of breast cancer survivors through a ‘crochet knocker’ creation exercise.

Organised in Nagpur in early October by Rohini Patil, a practising gynaecologist, social activist and breast cancer survivor, the workshop mobilised volunteers through word-of-mouth and social media. They not only revived their crochet skills and learnt them anew but felt good contributing to making breast cancer survivors more comfortable.

These contraptions serve as a convenient replacement for women who have opted for unilateral or bilateral mastectomy or lumpectomy or are awaiting reconstruction.

Initially, Rohini experimented with cups fitted into blouses, filling them with poly fibre. But these were too round and inappropriate for older women. Hand-crafted prostheses, on the other hand, can be customised as per individual needs and are soft, breathable, washable and lighter than traditional silicone breast prosthesis. They create symmetry without the burden of sweaty, heavy silicone prosthesis and can be used immediately after surgery, serving as a long-term solution for women who cannot afford expensive silicone prostheses. Crocheted/knitted breast prosthesis are specially made for swimmers.

The starting point

In her experience of 18 years post her own recovery, Rohini found body image and self-esteem issues hounding breast cancer survivors who have undergone mastectomy. The inconvenience, irritation and inability to customise silicone prosthesis take away comfort of the user. At the same time, not using prosthesis makes survivors vulnerable to medical, physical, emotional and psychological challenges.

In rural India, the situation is worse. Women stuff hankies and cotton balls to create a temporary breast. A tribal woman once came to Rohini’s clinic with abrasions from twisted bamboo baskets she had padded with waste fabric, proving to be too rough for the delicate skin.

Rohini did the dressing and provided relief to the physical trauma but the emotional upheaval was hard to address. That is when she decided to visit rural areas around Nagpur and see what the incidence of breast cancer was, the quality of treatment, and what she could do to reduce mortality.

She began weekly visits to villages around Nagpur and villages like Darekasa, a Naxal-affected area. According to her, in India, unfortunately, a majority of cases are detected in the third and fourth stages, increasing risk of mortality. Lack of awareness leads to poor uptake of screening, denying thousands the chance of early detection. If a lump is found to be malignant, women and their families lapse into complacency, waking only when it has ulcerated or increased in size. Often, treatment is left to quacks or divine providence. Rohini was convinced that early detection was key to saving the lives of women with breast cancer.

She embarked on this in mission mode and tied up with local cancer hospitals and diagnostic centres, imploring them to be a part of her campaign to raise awareness and save lives with early diagnosis and treatment. She got one to offer 50 per cent discount and, with this attractive proposition, began visiting villages with a handful of volunteers. Imagine her surprise when she found only a handful interested in getting mammogram and screening done. Even those who could afford it bypassed it saying they would get it done later.

This made Rohini realise just how little attention was paid to preventive healthcare. Once detected, families will sell property and jewellery for treatment which may no longer guarantee long and healthy life but they will not spend a fraction of that on testing.

Not one to give up, she found two portable hand-held devices that were useful in mass screening. She took these to the homes of women and while they were not as accurate as mammography they detected areas of breast tissue where there is increase in blood supply so as to detect suspicious areas, if any. It was based on the principle that malignant tumours have increased blood supply. This is where mass screening helps. This triggered concern in the patient and family and motivated them for mammography. One of the medical institutes offered their mobile mammography unit free of charge for the screening camps conducted for the rural population . She roped in the gram panchayat, ASHA (accredited social health activist) worker and auxiliary nurse midwife and even put pressure on the scan centre to do it free for those who could not afford to pay even 50 per cent of routine mammography charges.

Inspiration from Arizona

It has been more than four years and her intervention has helped put over 50 women on treatment. Next, her interaction with cancer patients revealed how terminally ill cancer patients suffer through their last journey and desperately need palliative care. She enrolled in a certification course in palliative care and presently divides her time between a palliative care centre called Sneha Anchal, where terminally ill men and women suffering from cancer are cared for, and palliative care counselling at various places — right from diagnosis through treatment up to terminal care.

In December 2018, when she visited her son in Arizona, she came to know about an organisation dedicated to making knitted knockers and its founder, Barbara Demorest. She met Barbara who connected her to Arizona crocheter Dale Aariaga, who helped her learn crocheting a knocker, using 100 per cent cotton yarn.

She replicated the model in India. Getting the right yarn was difficult and it was friends in Delhi who scouted and took her to Sadar Bazaar and donated the first lot of 1,000 metres. While her set-up was yet to be registered as an NGO, support began to flow in from several quarters. The announcement on social media for “Daan Utsav” not only brought to her crochet/knitting volunteers but also queries and orders for prosthesis from Bengaluru, Delhi, Gurgaon, Mumbai, Surat, Hyderabad, Ahmedabad, Chennai, Jabalpur, Haryana, Rajnandgaon and Coorg. She set aside time to make video calls explaining how to measure cup size (not brassiere size) which was then made by volunteers and couriered. The prosthesis are given free of cost all over India.

She gets over 25 orders a week and so far her team of volunteers is keeping pace. Her plan is to have crocheted groups across India through a “sub-centre model” where trainers can train more women and expand the circle of charity and benevolence. A volunteer who was visiting Dubai trained the women there who were interested to make the knockers and send it to India. Small but focused efforts will surely go a long way in making the dreaded C disease slightly more manageable and life comfortable for the survivors.

The writer is a freelance journalist based in Delhi

Published on November 15, 2019

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