September 22nd, (9/22) is observed as CML Awareness Day/World CML Day,symbolic to chromosomes 9 & 22 that cause it. The aim of proclaiming September 22nd as an annual International CML Awareness Day has been to raise awareness about the importance of timely access to diagnosis, treatment and care for people living with CML.
The Kolkata FOM fixated with this premise, endeavored to regroup and try to organize events to commemorate the day. 2013 turned out to be particularly special as it became known that they would have Viji Venkatesh in their midst for this very special day. There are quite a few CML advocates who have zealously strived for the well-being of CML survivors but the contribution of Viji Venkatesh has been supreme and exemplary.
The Tata Medical Center (TMC), Kolkata with its mission to promote Prevention, Early Diagnosis, Treatment, Rehabilitation and Palliation and Research for cancer patients had proposed to collaborate which led FOM Kolkata to organize an event on the forenoon of 22/9. The event was planned with two separate sessions and the panel comprised of different doctors and some seasoned CML survivors who have encountered a plethora of issues a CML patient is confronted with.
The meeting commenced with rendition of an invocation by Samiran Sen, son of an FOM Core Group volunteer. Samiran had thoughtfully selected a melodious composition scripted by Gurudev Rabindra Nath Tagore at the venue Rabindra Teerth named in honour of the much-admired Nobel Laureate. Dr Mamen Chandy set the tone for the meeting with his edifying and enriching opening remarks wherein he cogently navigated the CML saga commencing from 1960 when the chromosomes 9 and 22 were first seen under microscope, the fusion as it was perceived and depicted over the times and the different treatment and therapies that evolved thereafter including the path breaking innovation of Imatinib which has effectively relegated CML from a lethal life threatening disease to a chronic condition. The meeting which registered 200 patients out of which a significant number close to 100 were first timers for such a gathering were mesmerized to hear the finer nuances of their illness so explicitly and lucidly explained to them with such clarity. Dr Mamen also emphasised the need to be courageous while coping with the treatment and made reference to a book ‘Maximo and the Big C’ written by Viji Venkatesh which ostensibly exemplifies on how to fight the fear. As programmed, Dr Mamen Chandy performed the noble task of launching of the said book with the team of doctors who graced the occasion.
Viji Venkatesh affectionately called Amma spoke and gave a comprehensive review on the activities on Max Foundation and how it has transformed itself over the decade. It was truly daunting to comprehend that the organization that started as a fledgling outfit has over a decade grown to cater to over 16500 CML patients in the country. The activities of the Foundation and its Indian arm, the Friends of Max (FOM) range from spreading awareness on matters germane and pertinent to CML treatment like effective compliance, adherence through their different measures and ensuring timely obtainability of the medicine.
The meeting had planned for two patient advocacy panel interactions of an hour each and enactment of a small play in interlude. The issues that CML survivors face after diagnosis and treatment are not well understood or described on a case to case basis at the doctor’s clinic essentially on account of paucity of time and other constraints. CML is a fierce teacher and many of the survivors have, however unwillingly, been invited to this deep initiation into the intrigues, travails, along with clinical, emotional and psychological side effects of being in the disease and with the treatment. The patient advocacy panels in the FOM meets are truly informative, enlightening and explanatory. They have been immensely helpful to patients and a patient looks forward towards them with great expectations.
The panel interaction had different themes. While the first dealt with the medical and therauptic aspects and the second concentrated on social aspects, side effects and general issues emanating as a consequence of CML.
A galaxy of eminent doctors from the city who graced the panel were :
1. Dr Mammen Chandy
2. Dr Reena Nair
3. Dr Sarmila Chandra
4. Dr Moytreyi Bhattacharya
5. Dr Rajesh Jindel
6. Dr Sanjib De
7. Dr Sriram
8. Dr Anupam Chakrapani
Both the sessions’ aroused tremendous interest and patients were able to pose their queries and get a first-hand response from advocates and the different doctors. A young recently diagnosed patient posed to one of the panels his predicament of gaining the consent of his fiancé and prospective in-laws for marriage in the face of his diagnosis of CML and the perceived obstacles thereof. The panel including some of the doctors overtly offered pragmatic advice on the basis of the different cases encountered. Pregnancy during CML has been a topic that’s on everyone’s mind, notably as a number of the patients are relatively young. There was a wide-ranging discussion which led to significant awareness on an important topic that is too often pushed to the side.
While RT-PCR testing is one of the key tools to predict outcomes for CML, patients have not been aware of the importance and need for such monitoring, and many of them do not know their PCR levels. The situation largely arises because most hospitals simply do not have the capability to perform PCR testing, or even if available, access is limited due to costs. The need to increase awareness in the patient community of the importance of being regularly tested, informed and to understand PCR levels had been one of the underlying themes of the patient advocacy panel interactions. Patients were given ‘What is MY PCR?’ buttons and the need to monitor PCR levels at least in 6 monthly intervals was emphasized.
The hallmark of a Kolkata FOM meeting has been a short play which depicts the crusade of a family plagued with CML. It was first tried in the All India meet of 2009 and it became a big hit. The different patients used to connect themselves with the family of the play and have a first-hand appreciation of the manifestations of CML in a household. The same family with its real characters got into the act again and put forward an absorbing 30 minutes play which kept the audience engrossed. The key themes and motifs were compliance, the need to get PCR tests and need to be outspoken with family on the medical condition.
Some light entertainment in the forms of songs by Tushar Ghosh, an FOM Kolkata member and an inviting lunch hosted by Novartis India marked the finale of the remarkable meeting.
Well, the activities to mark the day were not confined to the meet alone. On the backdrop of the release of an inspirational book and the esteemed presence of its esteemed author Viji Venkatesh amidst us, FOM, Kolkata had scheduled a book reading event targeted at children battling cancer at the three major hospitals in the city. The afternoon of 22/9 was reserved for the Tata Medical Center whereas forenoon and afternoon of the preceding day viz. 21/9 was dedicated to Kolkata Medical College and Hospital, College Street and Saroj Gupta Cancer Hospital, Thakurpukur respectively.
Maximo and the Big C is a story for all ages. Beautifully illustrated and poetically written, the book tells the story of Maximo, a little sparrow who is weaker and smaller than other young sparrows, and unable to fly initially, could not only break the jinx but could go on to become an exemplar of courage and compassion. The moral of the story is that we all have the strength inside of ourselves to overcome a cancer diagnosis; and that it is by giving ourselves to others that we defeat the Big C. FOM had a number of copies of the books printed with the generous support from the Salman Khan Foundation, Being Human. The books were distributed to the children in the three hospitals along with a colouring book, crayons and some goodies.
The 30 odd child patients of the Kolkata Medical College and Hospital and their care givers had assembled at the Auditorium at 11 AM. After a brief introduction from Dr Parantar, some FOM volunteers and the author Viji Venkatesh, a dramatic presentation of the narrative was done by Mr Ratish Nair, one of the well-wishers of FOM, Kolkata. The children glued in rapt attention for over an hour and relished every twist and turn of the captivating storyline. At the end there was distinctive optimism and cheer in their faces.
At Saroj Gupta Cancer Hospital, Thakurpukur the story reading session was conducted in two of the children wards in the hospital during the afternoon at 3:30PM. The two wards had 17 and 26 child patients battling different types of cancer. FOM teams duly assisted by Naren Saha and Sushmita Sen conducted the story reading in the wards separately. The joy and bliss on the faces of the children on listening to the story was boundless. Their faces beamed with pleasure and delight at the close of the narration.
At 330 PM on 22/9, a good number of FOM volunteers had assembled with Viji Venkatesh at the Tata Medical Center. Dr Reena Nair welcomed the group and had arranged a tour of the Hospital. The Tata Medical Center, Kolkata is a comprehensive Cancer Care Center with well-trained professional staff and equipped with modern facilities and the most contemporary medical equipment. The hospital provides the entire spectrum of services from Prevention, Diagnosis, Therapy to Rehabilitation and Palliative support. The state-of-the-art pathology and the histopathology labs, particularly the apparatus used for RT_PCR testing evinced great interest to FOM members.
Storytelling to the Group of around 18 children was taken up in the ward by the author Viji Venkatesh herself. It was quite evident that the stimulated responses to the storyline caused students to think more deeply and raise their consciousness. The feeling of emotional ecstasy which was noticeably visible was so magical, it was as if the children were transported to some other world.
The event ended with conventional thanksgiving to Dr (Mrs) Reena Nair for her assistance in organization of the event.
Ramanathan Seshadri, FOM Kolkata