The Advantages of an Aware Care-Giver

My father started Chemotherapy and concurrent Radiation therapy for an oral carcinoma earlier this month. Cancer is a scary disease and putting a loved one through the ordeal of  cancer treatment is not easy. The disease is a devious one, you beat it back in one place, it pops up somewhere else, you get rid of it for a few years, and you never know when it will turn up again. Now while I have worked in hospitals and am familiar with terms like Chemotherapy and Radiation Therapy and things called IGRT (Image Guided Radiation Therapy-the first machine in Delhi was installed at Artemis in Gurgaon, where I was employed), it is only now that I am discovering how little I knew about the disease and its treatment.

I believe it is very important for family and care-givers to be well-informed about the disease and the treatment modalities being offered by the doctors. While we chose a hospital and the team that will take care of my father’s treatment, I read as much as I could about the disease. With the knowledge explosion around us and the almighty Google, at my service I found a treasure trove of information that was very handy in equipping me with managing my father’s illness and monitoring his treatment.

My father suffers from a cancer of the base of the tongue. The disease had spread to his adjacent lymph nodes, when it was diagnosed. A FNAC, wisely ordered by our internist revealed the tumour. The onco-surgeon I met ordered a PET-CT Scan to check if the disease has spread any further. I knew about the PET CT and how it worked and what it revealed, to understand why was it necessary. Once we had found the Primary tumour and settled on the treatment modalities (Radiation with concurrent targeted chemo-therapy), I read about the latest advances in these areas.

I also met medical oncologists who explained to me how the targeted therapy worked and why it was far superior to the conventional chemotherapy, which entails horrendous side-effects. The Radiation oncologists I met, explained to me about the radiation planning, the fantastic capabilities of modern-day radiation equipment and how they can deliver high doses of radiation with a great deal of precision and finesse. While, I marveled at the technology at our disposal, I knew the real test would be when we go through the therapy and how would my father cope with the like side-effects of the treatment.

Learning about the disease and the treatment options have helped me tremendously. Firstly, it has made me a partner in the fight against the disease. I am able to understand, what the medical teams are doing and how it might be helping us in dealing with the disease. This is most important as it gives me a semblance of control, a little power over a mighty foe. It also allows me to explain to my father about what to expect, to comfort him and to give him strength. Last night, as he blew his nose, a blob of blood coloured his handkerchief. Alarmed, he called me and I was able to explain to him that this was something that we would expect because of the radiation he is undergoing. A small matter, but a big reassurance for the patient.

Knowledge about the disease also allows me to hold informed discussions with the doctors treating my father. They too feel that they can explain to me in simple terms, what they are attempting and what has been the progress so far. Communicating well with your doctors is always a good idea, once they are comfortable, they can share with you a lot of information, which one can use and relate to during the course of the treatment.

Most importantly, as I sit besides my father watching the cocktail of the chemotherapy drugs drip into his forearm, I am able to supervise his treatment. This is not to say that the team of nurses and the residents are not good enough, but as we all know mistakes do happen and when one is dealing with cancer, they may prove very costly. Also, I realize the fact that for the nurses and the doctors, my father is one of the many patients they handle in a day, for me he is the only one and hence, even if I raise a few false alarms, it is worth it.

Finally, I would like to believe that a well-informed care giver, who is actively participating in patient care, while ensuring he does not get in the way, is a huge asset for the patient as well as the medical teams. I am willing to bet, medical outcomes would be far better for patients, who get this kind of support.

When faced with a sudden medical exigency it is imperative for caregivers to arm themselves with the relevant knowledge of the disease and for medical folks to encourage care-givers to do so. It really helps everyone.

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