The Chandigarh Friends of Max Regional Meet was held on Nov. 13, 2011. The preparation for the meet started in September. It was a call from Sharon on Sept. 15, 2001 followed by the email of the poster design to be put up at the Hospital that got the ball rolling so to say. The earlier meeting had taken place in March, 2010.
So this meet was almost after a year and a half. Time flies. And what a difference time makes. In 2010, I had met Amma and Sharon for the first time. I was diagnosed of CML in Nov, 2008. And by October, 2009, I had started going to PGI on Mondays as ‘hospital volunteer’ with a Chandigarh based NGO, Sahayta.
PGI, Chandigarh is a unique hospital. It caters to not just the city but also the surrounding states. Patients come from all over Punjab, J&k, Haryana, Himachal Pradesh, Uttranchal and western UP. Every Monday, there is a special Haematology clinic. On a typical Monday, a team of doctors (around 10 including, SR’s and JR’s) from department of Internal Medicine headed by Prof. Subash Verma, would see around 400 patients. There are Mondays when the OPD stretches upto 10 pm, so that no patient goes back without getting the treatment. I would probably call the team as angels. For their dedication and going out of the way to treat the patients, beyond the boundaries of duty.
Most of the patients coming to PGI are extremely poor and are not able to read or write. Even filling up forms for availing railway concession is an issue for them. There are so many who can not buy medicines. This is where an NGO, Sahayta comes in. It tries to help patients by giving free medicines. And also by filling up travel concession forms for the patients. And also during this, there is huge scope of providing patients with counseling support. And this is something I am learning since I first started in Oct., 2009.
This Meet was different and unique. It was held immediately after a three day National Hematological meeting with a lot of International faculty too. And this meant that we had the honour to have internationally acclaimed CML specialists like John Goldman from London (UK) and Michael Mauro from Portland (OREGON). John Goldman as we all know is the best authority on CML and Dr Mauro has worked so closely with Dr Brian Druker .
And since Amma came to attend the conference from 11th onwards, it was an added bonus for me. I had the opportunity to spend more time with her than last year. That was a ‘wow’. I think she has an amazing ability to put you at ease and share things which I would do not even share with close friends and family. These three days, I had a great opportunity to put experiences and learning as a ‘medical Volunteer’ into perspective. I also had the opportunity to attend a session on CML on 12th November.
It was also an opportunity to meet bubbly Ayesha for the first time. She joined us at Chandigarh on 12th. It hard to tell from her ‘schoolgirlish’ looks that she is working with The Max Foundation, India since last 9 years. And as for Sharon, who was here last year and could not make it this year to Chandigarh, get well soon. We missed her presence.
The day started really early with patients starting to pour in from 8 am onwards. There was an arrangement for tea and snacks. The Registration started at around 9 am. The sheer rush was pretty overwhelming. The attendance to the event saw a huge jump with around 1000 patients and family members reaching the venue. And although Amma, Ayesha, Kuldeep and I kept chipping in to speed up registration, it was actually impossible to register all the participants. So, the registration closed at 10 am everybody was asked to be seated in the auditorium.
The proceeding started with singing the National Anthem and then Amma gave an insighful presentation. I was pretty amazed to learn that Novartis and TheMax Foundation was helping around 14500 CML patients in India alone. And this number is swelling day by day. The number of patienst on the programme is swelling by around 1200 every year on an average of 100 patients a month.
On the one side, it pretty heartening that so many patients are getting assistance from Novartis and The Max foundation, it is also bit sad that CML is showing no signs of abating. And the work load on small yet dedicated team at Max Foundation has gone up so much over the last many years.
After Amma’s presentation, there was a Q&A session amongst the patients and the Doctors. The panel of doctors compised of
Prof. Subash Verma
Prof. Pankaj Malhotra
Dr. John Godman
Dr. Michael Mauro
Dr. Neelam Varma (Chief Pathalogist)
Dr. Pankaj did a wonderful job of translating all the queries of patients into English for the foreign doctors and then translating back the answers from English for the patients.
Some of the questions included queries on:
1. Cramps in legs and other muscles
2. On reproduction and fertility after diagnosis
3. What if a patient skips the medicine for a day
4. CML being hereditary
After the Q&A session, there a vote of thanks to the entire doctors’ team by the patients and also the birthday celebration of Max. The children present were invited onto the stage. And they all sang the birthday song for ‘Max’. When Amma asked one of the kids, a little girl about the significance of the blue Sparrow of Hope, she said, this is Max, without battering an eyelid. After the celebration, Nikhil and I also shared few words with the audience, stressing upon compliance. Because that the easiest thing we can do as a model patient. Rest is all in the hands of doctors and how our bodies respond to the drug.
Also present on the occasion were Dr Deepak Bansal Dept of Pediatric Oncology , Dr. Vikas Suri and Dr. Sanjay Jain from the dept. of Internal Medicine, PGI and Daman Mangat from Sahayta, Chandigarh.
The main learning for me during these few days is that:
The doctors at PGI are not just doctors. They are scientists. My feeling is that the cure to this disease is just around the corner.
Report by Sandeep