“I’m so down. My mom underwent surgery last week to remove several masses from her abdomen. They also took out her spleen. Initial biopsy results showed she has cancer. So there. I remembered that your mom also had cancer. I want to ask your advice on how I should take and handle this. It’s crazy…”
I received this message from a friend last December. She was pregnant so I could just imagine the stress she must have gone through upon finding out about her mom’s diagnosis.
My mom was diagnosed with Stage 3-B breast cancer in Jan 2004. Her cancer was aggressive, and so was the treatment. She immediately underwent surgery, six rounds of chemotherapy, 6 weeks of daily radiotherapy and took Tamoxifen (a cancer drug) daily for five years. She went on remission for 10 years before the cancer came back, this time at Stage 4, in 2014. She passed away in Jan 2015.
I was a super-daughter. From the time my mom was diagnosed, I became this supergirl who was not only in charge of finding the money for her treatments but also of actually taking care of her. I had four siblings, but it was I who took on the hands-on responsibility of seeing her through the whole thing.
So, I consider myself something of an expert on how to take care of a loved one who just found out he/she has cancer. I hope my two “practical advice” below would help others who find themselves in the same position.
Take your loved one ONLY to top medical specialists.
You can’t just go to a kind doctor with kind intentions; you need a doctor who is hopefully kind, but more importantly, the best in his job.
My mom’s onco-surgeon was the oncology department head of a top hospital; her radiologist, the head of the radiotherapy department of another hospital; her cardiologist, a top ranking specialist at the country’s leading Heart Center; her gynecologist, a top consultant at another top private hospital; her endocrinologist, one of the best in the country. Because they were all top specialists, they knew each other and worked together on my mom for the first two years after her diagnosis. I worked hard for the money spent on these doctors, but mostly, they helped us out by giving us a discount on consultation fees and medicine.
No offense to GPs and younger doctors, but you don’t want the life of your loved one (who is in critical condition) in the hands of someone who has less than 10 years of experience in dealing with the disease. I discovered this when my mom insisted we try a younger doctor for an emergency consultation and I ended up literally telling the doctor that he was not telling us anything we didn’t already know, and almost demanded a refund. It’s a waste of time and a waste of money—two things that are of prime value at this time.
I will be honest and say with all conviction that an important factor in my mom’s death is the fact that she was misdiagnosed for more than a year by doctors with less than 10 years of experience and who are not considered top specialists in their field. I was working overseas when she fell sick anew in 2012 and went from one doctor to another, reasoning that in her inexplicably weakening state, traveling two to three hours to go to her top doctors was too inconvenient and tiring for her. Even if the doctor works for the best hospital in the country, if he/she is not considered a top player in her field, don’t risk it. It is easy to find a doctor’s profile and professional background online.
Another tip: Always get your doctors’ mobile numbers (if possible; the doctor would give it if they know the patient’s case is serious and would often require real-time medical advise) and their secretaries’.
Be an expert on the type of cancer and other diseases your loved one has, but never play doctor by diagnosing or treating her without the go signal or knowledge of her primary doctor.
“You focus so much on the cancer that you neglect all other illnesses she has or may have, that it’s possible she won’t even die of cancer but of something else, coz you overlooked that matter,” said my mom’s onco after her surgery. And so I did my research.
In addition to smart research (using only legitimate medical sources, especially online), I go to doctors’ clinics armed with loads of information and questions about my mom’s treatment, drugs used on her chemo, alternative treatments and drugs, counter-indications with other drugs she’s taking and with her diet, short-term and long-term side effects, EVERYTHING.
A really good doctor will not simply say, “you are overthinking this, let’s just focus on one thing” but will explain everything that is related to and may impact the patient’s health, if only to allay your fears and for you not to impede their own medical plan of action.
I knew so much about my mom’s conditions — breast cancer, a half-beating heart, diabetes and ovarian cysts — that I’d often be asked by resident doctors and nurses if I were a nurse, a pre-med student, or as my mom overheard the nurses talking called me, “epal” (derogatory slang for “know-it-all”).
But the real doctors — the specialists — would encourage me to keep building my knowledge of my mom’s condition and would direct me to the right path, while debunking false or impertinent information I bring to them every time.
I will not lie. Writing this entry did not make me feel sad. It made me very angry. Angry once more as I recalled all the mistakes, selfishness and negligence committed by those I depended on to take care of my mom in my stead as I went to work overseas.
This brings me to another important advice that I’ll have to expound on in a different blog entry:
Be a pillar of strength for your loved one throughout his/her journey with cancer. But whatever the outcome, you must learn to forgive yourself… and others.
If you have anything to share related to advice #2 & #3, I am sure others would really appreciate it. I certainly wished someone had guided me on how to deal with being a caretaker of a loved one battling breast cancer.