‘I survived cancer’
By Danielle Sendou Ringgit
With an infectious smile, a mohawk and a positive attitude, no one would have guessed that 20-year-old Barry Johannes was a cancer survivor.
At the age of 11, Barry was diagnosed with Ewing sarcoma, a rare disease in which cancer cells are found in the bone or in soft tissue, forcing him to undergo chemotherapy in 2007-2008 and also a surgery to have his tumor removed.
But now, nine years later Barry is healthy and is currently a final year accounting student at Swinburne who wishes to pursue his education at a higher level.
Nervously stepping on stage in front of the crowd, Barry proudly introduced himself as a cancer survivor.
Barry was grateful for the experience as he advised those with cancer to treat it as the best experience in a worst-case situation
“I was diagnosed with cancer in mid-June 2006, which was after I had my sparring taekwondo tournament and I had a bruise on my left ankle. A couple of months later, it got swollen, and it got bigger and bigger,” said Barry.
“So I went to the hospital for a check up with my parents, according to my doctor, it was confirmed to be a tumour.”
As his pain grew more intense, Barry went for a biopsy and was sent to Kuala Lumpur. A few weeks later, it was confirmed he had Ewing sarcoma which had spread to his left ankle leaving him unable to walk because of the pain.
During that time, he also remembered the specialist asking him how would he feel about losing his left ankle.
“To that I said, if I have to lose my left leg it is still okay because as long as I can live and see my parents, I will accept the loss of my left foot,” said Barry.
“After a few months, I went for treatment for 10 cycles of chemotherapy for 11 months, and then radiotherapy for two months, and I had a surgery to remove the tumour and a bit of my left ankle bone,” he said.
“So now, I do not have my left ankle bone but I can still stand properly. You see me looking like a normal person, but actually I am not different from others,” he said.
Adding it was a painful experience for him, Barry stressed to the crowd that it was very important to think positively of the situation.
“For the patients as well as their family members, you have to be very positive, treat what you experience now as your best experience in a worst way,” said Barry, earning him an applause from the audience.
“Lastly I would like to advise family members of cancer patients to not show sympathy in front of them because for us, we would like you to smile and to be happy so that we can get a positive vibe from you,” he added.
“People like us, we are actually like normal people but we go through difficult moments. I have forgotten that I have been through cancer before because I am actually very grateful that I have experienced things most people would not have experienced since I have survived from a very serious medical situation,” said Barry.
On September 27th, the Sarawak Children’s Cancer Society (SCCS) closed their week-long Childhood Cancer Awareness campaign, the Gold Ribbon Week at Plaza Merdeka following the launch of the society’s documentary and a celebration of Childhood Cancer Awareness month with survivors, patients and their families.
The roadshow aimed to raise awareness about signs and symptoms of early childhood cancer among the public to help families with children battling cancer in Sarawak.
Since its inception in 2001, SCCS has supported more than 900 families in Sarawak with childhood cancer by providing, support, accommodation, financial aid, education and recreational activities.
“Here in Sarawak, we are very lucky because SCCS is the only one of its kind in Malaysia who not only take care of our children but we make sure that the family are all well and fine’ said treasurer for SCCS Dr. Charles Leh.
“Cancer is not the end. As you all have learned, cancer can be treated to some extend successfully and therefore you need to know the symptom and in order to detect and find solution to overcome the problem,” said Dr. Charles.
“We also want to do a lot more for our children in Sarawak in particular, so that as parent we would look up for the symptom so that we can get the proper diagnosis and SCCS is always be there to help you no matter how difficult.”
Among the symptoms are continued, unexplained weight loss, headache often with early morning vomiting, lump or mass especially in the abdomen, neck, chest, pelvis or armpits, constant infections, a whitish colour behind the pupil and recurrent or persistent fevers of unknown origins.
Aside from that, Dr. Charles also said that they hope to have a centre in Miri and Sibu as there are also children across Sarawak who need it as they might be too young to understand what they are going through.
Following the roadshow will be an awareness talk organised by SCCS at the Borneo Medical Centre auditorium on October 3rd 2015 at 2 pm which covers the topic on childhood cancer, bone marrow transplant, how to become a bone marrow donor and palliative.
Entrance is free, but participants are encourage to register early due to limited seats. For more info, do contact 082-507333 ext or Melanie at 016 8898310.
To find out more about SCCS, check out their website at www. sccs.org.my or visit their page or email them at firstname.lastname@example.org