The word cancer is a struggle in itself. The moment a person receives the diagnosis, one would probably start mentally laying out the consequences. I think you would agree with me if I say that, if given the chance, every person would rather choose other kinds of adversities in life but a life- threatening illness. They say choose your battles well. But as I have learned, some battles in life we just can’t say no.
In this article, I’d like to state, in the best of my ability, the kind of experience we cancer patients go through that is less often shared because it is something that is hard to deal with. Please note that this does not mean to criticize the flaws or incapabilities of our government. I don’t want to sound ungrateful or discontented. I am thankful for whatever kind of system that has helped me and my family overcome this adversity up to this point. And I know too that every person should not lose hope, although some just run out of time (or patience).
So, together with the insights of few other young Filipino cancer patients and survivors that I gathered. I am sharing here with you the six of the many struggles we go through on a regular basis. Some of these struggles may be very well known to people. While some of them are overlooked and unexpected – things that only people with cancer truly understands:
- We struggle to find support.
This is probably true for every person with a life-threatening illness, not only cancer. As much as we don’t want to sound pitiful, we need a lot of support especially during treatment. But the needs – even the practical ones – can be very overwhelming especially for the first few months after the diagnosis. In fact, when some of my friends told me “Inaa lang mi unsa among pwede matabang…” (Just tell us if there is anything we could help…), I wasn’t able to give concrete answers. Instead I said prayers will do. I’m sick with cancer, where should I start?
In our experience, support for cancer patients can be very hard to achieve here in the Philippines. The government does not have any established agency created to mainly assist cancer patients only. No patient financial aid program or any program that addresses the specific needs of cancer patients. Of course, the Department of Health has programs related to cancer. Though I’m not sure of the milestones they have celebrated regarding awareness, screening, and prevention – I truly hope there are many.
Although there are gov’t agencies established to give Filipinos medical assistance, seeking help from these particular agencies requires a lot of time, resources, and patience in itself. For one, you would have to start queueing at their office as early as five in the morning – together with other people with family members also in need of financial support for whatever kind of health condition beyond their financial capability. Then you would have to wait for weeks or months – despite the urgency of the need – before the assistance is granted, if granted. If not, probably due to missing/ questionable/ insufficient requirements, you would have to come back again.
The waiting and the transportation might be tolerable for families living nearby the office or those with private cars. But this can be another struggle in itself for poor families who can barely save money for transportation back and forth. Or even for middle class families who also have to attend to their day jobs/ responsibilities at the same time. Sadly, even the assistance received from private foundations/ NGOs may still be insufficient especially for patients who require a lot more expensive and risky procedure.
- We struggle to find resources.
This might be relatable to number 1. People may have a lot of misconceptions about cancer but they sure are not wrong if they think that it is expensive. Yes, cancer is expensive – from diagnosis to treatment to recovery. And the fact that it is especially difficult to get support from our government makes it even tougher.
Most families, especially the lower and middle class, are left financially drained because of the costs. From imaging tests/ scans to biopsies to acquiring blood and blood products to surgeries to radiation to chemo drugs to medications to counter side effects of chemo drugs to nutritious foods to comfortable accommodations to transportation to and from treatment and doctor’s appointment to everything else.
“ … sobrang exhausted na talaga kami financially” (…we were very financially exhausted) said Mia, a former college dorm mate of mine who is also a leukemia survivor. “Hahanap ka ng pwedeng mapagkunan ng medical assistance kasi yung iba every 3 mons pa pwede.” (You have to find other sources of medical assistance because for others you can only have it every 3 mons.)
The procedures, drugs, blood and blood products you need are of course not performed or given for free. PhilHealth may cover part of the costs but partially and to selected procedures and drugs only. You’re blessed if you have other health insurance, apart from PhilHealth, that is excellent enough to cover the majority of your expenses – including professional fees.
But I believe that isn’t the case for most young people who may have just started in their jobs or none at all, when they were diagnosed. Even more worst for uninsured patients. You’re blessed if you have a family member or relative working abroad that can help produce big chunks of money whenever necessary – still not the case for families of the lower class.
When resources seem to diminish, some patients decide to cut off from their treatment altogether. I knew one patient who didn’t came back for his maintenance treatment after he finished his intense weekly chemo. We both had the same form of cancer and went to the same clinic. It must have been way heavier for him I suppose. He was a padre de pamilya who lost his job because of his diagnosis. While treatment, his wife, who used to go with him – got pregnant. She said she was advised to deliver via Caesarean section – which is a lot more expensive than a normal delivery. It wasn’t even their first child.
It was clear he had a family to support. I gossiped with one of the nurses who tried to contact the wife, whether Kuya came back for his maintenance and said that he never did – though he showed no sign of relapse. “Murag naglisod jud sila…” (I think they’re really having a hard time…) the nurse said.
- We struggle to find a community.
Isolation during treatment is not a unique but a common feeling for us, despite the presence of our families and friends. We can’t really demand our friends to be with us every single time and not many of them would probably truly understand our situation. In my experience, there were times when I preferred to be left alone. But there were also times when I wanted to be with other young people who are going through the same experience. I wanted to know how they are coping as well.
If you look in the internet, there are of course cancer support groups here in the Philippines, but as a cancer patient myself staying mainly in the province, I haven’t been into one. Even my own doctor didn’t recommend one to me. As I have known, support group is where people going through the same journey – in our case, cancer – meet together regularly to share about their experiences and common concerns. In this way, they can openly talk and be their selves without fear of being misunderstood or pitied. Support groups may not be able to provide financial assistance but it can help a lot in their coping by making them feel that they belong to a community that provides emotional support.
However, as I have observed, the term “cancer community” doesn’t really exist here. We are scattered in a way. We all deal with cancer in ways that we think are best for us and we don’t often share our stories with others in a communal setting. It must be great for us patients and survivors to flock together in an activity mainly to strengthen ourselves, isn’t it?
Kar, my sister’s college close friend who happened to be a young breast cancer survivor, said she’s never been to a support group too. “…pero kato ako mga kauban sa treatment mao ra sila ako nahimog support group mura mig classmate magkita every month sa hospital magpatreat.” (…but fellow patients who were with me during treatment became my support group, we were like classmates seeing each other every month at the hospital to have treatment.), she recounted. While others find unexpected support system from fellow patients in oncology units, others may have to go through it lonelier.
I have also noticed that there is no support group specifically for us young people with cancer in this country. It’s interesting to know that adolescents and young adults (AYA) with cancer have very specific and distinct concerns as compared to younger or older age groups. We were in a point in our lives when we were at the start or middle of our plans on career, studies, relationships or families when we received our diagnosis.
It has been known that support groups can relieve feelings of isolation and assures the patient that he/she is not alone in this kind of journey. I hope that someday, cancer community in the Philippines will become a tangible one well established and united.
- We struggle to find nearby treatment institutions with reliable facilities and manpower.
Most of us go to bigger cities to seek treatment simply because not every province or city has specialists and treatment facilities. Kar and Mia are both from Palawan and are constantly flying to Manila for their treatment and appointments. Mia says they do not have a hematologist back home. Meanwhile, patients from Southern Leyte and other parts in Leyte often go to the nearby island of Cebu or to Ormoc for the same reasons. Others, especially those in the lower class, may not even go to seek a doctor at all – thus lesser chance of earlier detection and better prognosis.
This may bounce back to the fact that our country lacks enough doctors serving in the provinces. According to CNN Philippines report in October 2016 based on an interview with DOH Secretary Ubial, our country lacks 15, 000 doctors in order to meet the health needs of Filipinos. Only 2, 600 doctors are being produced each year with a ratio of 1 doctor to 33, 000 persons. Phew! That’s a lot!
Even the quality of services that private and public hospitals with cancer treatment facilities provide shows a big disparity. Cris, a leukemia patient in Philippine General Hospital which is a public tertiary institution, said that he’s been struggling with finding an isolated area due to very limited number of rooms and overwhelming patient population. With his very immunocompromised state, it is important that he does not stay with other patients in one room.
Cris’ leukemia has been refractory making him a candidate for a 5 Million Peso- worth bone marrow transplant – risky, expensive, but lifesaving as it is his only shot at the cure. Even with his proximity to treatment facilities as he lives in Metro Manila, such procedure appears to be impossible for him because of the high costs and lack of support.
I have spent considerable time reading through stories of cancer patients and survivors – mostly from first world countries. And I can’t help but notice their excellent health care experience and support that they have been receiving from their community. Things that I wished we had here at home.
- We struggle to find a clean environment.
Our country is SO polluted – we are aware of that already. But it bothered me greatly when I was going through my weekly chemotherapy while walking through untidy sidewalks outside pier, crossing streets, and waiting in public terminals of bigger cities whenever I go for my treatment and appointments.
I remember getting pissed every time I smell cigarette smoke from some random person smoking in public terminal despite the nationwide smoking ban in public areas imposed by our President. It made me wished numerous times I had my own car to drive back home. Everything was annoying me. Partly because my treatment was making me very sensitive to odor, heat, and noise.
I am glad to be living in a province that has a much cleaner environment and has been banning smoking in public areas of the city ever since. However, I was a bit disappointed when I found myself unable to breathe comfortably in our own living room. I was having problems with the foul smell of the canal just outside our house. The offensive odor that came into our house uninvited was caused by trapped hog urine and manure from the neighbor. It was purely intolerable for me. Because of my condition, our family was placed in a bigger challenge to raise such concern. I realized I was fighting more than just cancer.
- We struggle to let people understand our situation.
Filipinos have a lot of misconceptions about cancer probably because of little awareness. Many think cancer is synonymous to death. Others think it’s a punishment from God for something wrong you’ve been done in the past. While many consider it a disease for rich people only. Others don’t really take it seriously – or more like, they don’t have enough resources to do so.
Once people learn about your diagnosis, they tend to speculate many things about you and your life, making it difficult to present yourself to them. In another note, you become instant sikat (famous) – or infamous, rather. People start looking at you differently especially when you start showing appearance- related side effects: steroid face, hair loss, weight gain.
When people in our place learned about my diagnosis, I knew many of them were thinking “sayang”. Even I thought the same thing: I was a waste. It was such a waste to get through that far and end up with a dreadful disease. Curious people who couldn’t contain it were asking what happened to me simply because I didn’t look the same. Such experience made me look at people differently as well. It taught me a great amount of lesson about not letting other people’s prejudices dictate my persistence in life.
Perhaps cancer is more than a disease. Perhaps this list may be misinformed. Among all the many things we wished we have here at home, perhaps we could only keep on wishing. We’ve come to subconsciously learn that, we cancer patients – like most other citizens – can’t really expect our government and society to respond in a way that we prefer them to. And so, we deal with that. Our country is confronting tons of issues and problems that are to be solved immediately as well. Perhaps these struggles are mainly reflections of a greater struggle that we, as a nation, faces.