As one of my goals during my review last year, that I would like to have patient support group meeting in two more regions. This year I have got a new member in the team who I hope will assist me on patient support group since MaxSmiles still do not have leader and co-group.
We did not have much time to start my plan before Novartis inform that there will be CML patient education in the main hospitals in each regional in series. Wasan and I think it would be good idea to have our patients join the event and also meet up with us as well. Our plan was to call patients in the area and ask them to come meet us at the hospital on the day.
Srinagarid Hospital, Northeast
We travel on the bus, carry books, and gears for the meeting and we brought along the Thailand map from the workshop October last year. First patient came to approach us in early morning and said he arrived at 4:00am. No surprise that he came long way even he just live next province but it took him long way to the hospital. I have a chance to meet up with two of the key GIPAP physicians and told her that we were there. A physician like the idea of the support group which she also seen from the MaxSmiles Newsletter. She said that if next year we working with her and she will make appointment for CML patient to come to Clinic on the same day, then patient can come for check up and join our meeting as well.
A patient came with her husband and a sister and said that she has been waiting for such a long time to meet me in person. She was the one who sent me ‘handmade silk fabric’. Although it was not a very fine quality, it was totally beautiful by the meaning from her work.
We bring the Thailand map that we have signed in the workshop October last year.
After the patient education, we have a chance to take a group photo and say good bye since they need to start heading home before the bus finished. The same lady who made me the fabric had brought lunch for us. So, we end the meeting having lunch at late afternoon and it was a nice and relaxing moment Wasan and I had beside the hot and spicy of the tradition food.
The following week we travel again by 12 hours bus and the same heavy gear, this time we add mattress for sitting on the ground. Wasan had a couple of day to call patient on the list asking if the want to see us, and we glad that 14 had confirmed. We arrived there when the hospital about opening. We were looking for place for gathering but there are no yards in that hospital. Wasan found a place in front of a bank in the hospital which has a small living area for the customers. I asked one of the staff if we can move the garden chairs to put in circle for our support group meeting, and I was so happy when the guy say yes so we no need to find other place to sit.
Patients come before time and get together. We had a better plan for this time, so we started when everyone come together then I can talk to them in the group. I started to introduce ourselves, TMF and MaxSmiles. We again bring the map to have be part of the signature signing which they feel part of the MaxSmiles. Wasan speak the same dialect with them so I have him continue the next step by introduce himself and then lead the sharing. The highlight of the meeting when a patient started to tell the group about his ‘close to death’ experience. The guy said that that one physician told him that he has 6 more days to leave and the other physician said that he has 3 more days. His family was preparing a funeral, but his wife did not believe and brought him to a main hospital think if he die, he should die in the hospital. Not so long from there that this patient started the medicine, and from there to now is two years already. This patient and wife brought two big bags full of mangoes for Wasan and I to bring back home. We have to many things to carry, so we ask for permission to share them with the group as gifts to everyone, he agree and everyone were happy.
We were able to visit an assistant nurse who helps GIPAP physicians look after patients. I shared her highlight of the meeting. She told us that we can work together next for and she would try to help find a room that we can use.
There were two good experiences for Wasan to see of how the support group started as I saw when we started in the park. We do hope to work as a team to carry on to make the group growing and running by it owns.