Lessons I Learnt While Dealing with my Father’s Cancer Treatment

Six months ago, my father was diagnosed with grade 3 squamous cell carcinoma – that’s the fancier name for oral cancer.  Since that day, life has not been the same for me and my family.  When they say there is life before cancer diagnosis and a life after, you better believe it. There are bunch of things I learnt, while my father was being treated for it – think of this as a ready-reckoner to take care of a cancer patient. I will pray to God that you won’t ever need it.

It hits you hard – You will never forget the day you got the call about the biopsy report. You will never forget how the voice trembled on the other end. It will take some time to sink in. You will cry. It’s ok. Cry it out. That best friend will tell you that it will be fine and that he will be there with you through this. Believe him.

Embrace it – The sooner you do this, the better it is for you and your family. There is very little you can now do, really. Sure you can play the victim – why now, why your family etc. But now that it’s here, you will need to prepare for the fight ahead and nothing else. From this point on, you will need to stop being emotional and start being logical. I cannot stress enough on this, the sooner you reach here the better it is, for all involved. You will need to be strong, for the patient too!

What next? – Decisions! Get used to making lots of them on a daily basis. From figuring out the right doctors to the treatment that is required, make them and stand by them. Your sources of information to make those decisions will consist primarily of 3 streams:

• Google – The first thing you will do is read up the Wikipedia page about the specific type of carcinoma. You will then read up a bunch of articles on possible causes and treatment. You will then read all possible results till your browser history has nothing but cancer articles in it. You will hear stories about how someone got cured when things seemed hopeless, and  the ones who swear by the magic cure they found in the bark of a tree in the middle of the Amazonian jungle. Understand this: each case is different and you have very limited knowledge about a survivor’s (or the ones who did not) case history. Take hope from what you read and hear and hang onto it with all your life.

• Doctors – Your oncologist should ideally be someone you have full faith in, because what he/she advises is going to define the next course of action. Sure you can get a second opinion or maybe even half a dozen of them but then remember, time is of the essence. If, by and large, all of the opinions concur, then go ahead and do what your oncologist says. You have 3 options when it comes to treatment. There is the dreaded chemo which is akin to hitting your body with a sledge hammer. There is radiation which is targeted at the area where the tumor is present and then there is surgery. Each treatment has its own set of good news and bad news (there are no pros and cons when it comes to cancer).  You may ask me which one you should choose. It’s like deciding between Dravid, Sangakkara or Kallis to bat for you at number 3. There are no correct options. Based on the nature, the size, the location and the spread of cancer, there is the most favored one.  You should also get used to understanding life through probabilities. Your doctor will say that treatment A has a 60% chance of a cure – it means that of the 100 patients who were prescribed and chose treatment A, 60 got cured and 40 did not. As brutal as it may sound, that’s what it is.

• Family & Friends – This is where things get tricky. You will hear multiple opinions on the right course of action. You will also have that aunt or uncle who is a doctor or that friend who knows the leading oncologist in town – all of them are doing their bit to ensure that they find a solution but there is only that much information one can process. Take them all in, sit with your immediate family and decide what you want to about it. Don’t sway too much – if your decision is to go for surgery in the morning, radiation by noon and chemo during the late night huddle, chances are you are paying heed to way too much advice and that is not going to help. Also, there is one thing you will most definitely do – question your oncologist with your newly acquired yet woefully inadequate knowledge on cancer. Here’s what I learnt – you have every right to ask questions to your doctor about the treatment, the alternate options et al but you should also know when to ask them and when not to. I am very sure you will learn this the hard way 🙂

Patient care – Once the treatment begins, the lion’s share of your day will be spent taking care of the patient.  It helps if you are someone who likes being organized and planned because you can “to-do-list” the s#$% out of cancer. Right from the medications, to the doctor visits, to the blood reports before chemo, to the powdered nutrition shakes, to the CT scans, to the hospital bills, to the medical insurance queries – you can quite literally “to-do-list” the s#$% out of cancer. Prioritize cancer over everything. Cancer will do that for you.  

Your house or the place where the patient is resting will need to be as safe and secure as a Swiss bank vault. It must be affection-full and infection-free (that rhymed no?). The patient’s immunity during treatment will be at an all-time low. He/she will also be vulnerable to infections, flu et al. Keep things clean and sanitized. Diet is very subjective but ultimately you will end up stocking tins of Ensure/Pentasure/resource dialysis or some form of powdered supplement. Make sure the patient has enough proteins through the treatment. Proteins are absolutely vital for recovery. Eggs are the most readily available source of protein. Boil them, omelet them, yolk them, milkshake them – just don’t forget to have them.

Pain Management – The word pain will take an all-new definition. Picture this – a 59 year old man who has survived 2 heart attacks, a couple of failed business ventures, and has  come out of it to provide a source of livelihood for 70 families. Now imagine him holding your hand, weeping in pain and contemplating suicide as option to end what he is going through – that’s the kind of pain I am talking about here. If you can excel-sheet cancer, the bottom right column will be in red, will read pain and will be in font size 48.

After a while, pain becomes the normal. And you learn to manage it. There will be times where you will not relate to the pain. There will be times where you will wonder whether it really hurts that much. It’s ok to have those thoughts. But trust me, it does for the patient. You will need to summon those unknown reserves of patience within you to deal with the patient’s pain.

The straightforward way to combat pain is through pills. Your doctors will prescribe them for you. But the pills won’t solve the mental pain a patient goes through and the emotional one the family experiences. Being there for the patient and the family is the only way you can get through it. You need to be there. Period.

Data & Doctor Management – Blood reports, PET CT reports, chest x-rays, discharge summaries, prescriptions, radiation card, medical clearance…the list goes on. Every single document that you inherit through this ordeal will need to be photocopied, digitized and filed away. Don’t leave your house without a file, puncher and a stapler because every visit to the hospital will leave you richer with one more sheet of paper. File them in a chronological order because it is easier for doctors to read them and make sense of them. Also it is bad patient etiquette for you to make your doctor sort your files out.

You will also need to have what I call the “patient pitch” ready – that’s basically a 2 recap of the entire case history till date. Doctors have finite time with each patient so you will need to be as crisp and clear as possible when you interact with your doctors.

Much of the time you spend with your doctor will be like a question and answer session. For you to make the most of it, keep the list of questions ready before each doctor’s visit. I would advise you to keep them relevant – don’t ask the oncologist questions you would ask the surgeon, because, again, time is finite. Brevity is the soul of wit, always.

Keep appointments to the bare minimum. I understand that you will have the urge to ping your doctor every time a thought crosses your mind. Hold back. Use your quota of appointments efficiently.

Resource management – The minute the news of the diagnosis breaks out, you will have plenty of concerned relatives, friends and business associates visit your house and the patient. Some will visit and leave, some will insist on staying to help out. All of them will offer support in whatever way they can. Use them wisely. You will need to surround yourself with people who are capable of handling chunks of transaction from start to end with the least amount of intervention. For example, I handled all insurance related transactions amongst other things. This meant that I was the only person who knew everything about it and provided just the right information to others when required. You will need to run a tight ship and ensure that everyone involved has a stake in the treatment and are held responsible for their tasks. Make sure you are courteous to all the hospital staff involved in the treatment, especially the receptionist, the nurses, the ward boys – they are more often overworked and bear the brunt of concerned family members. Don’t forget them to thank them – without their support, you will be completely at sea in the maze called the hospital.

How expensive is the treatment?  This depends on the choice of treatment, but on an average, you will end up spending anywhere between Rs 5 – 10 lakhs within the first year of diagnosis. Cancer is prohibitively expensive and the cost only increases with the complexity of each case. Early detection not only gives you a great chance of getting cured but also helps mitigate the financial impact significantly.

You also realize how important it is to get you and your loved ones medically insured. If possible, I would like to go back in time and kiss the person who came up with the idea of insurance in general.  Next time they offer you the option of getting yourself medically insured at work, grab it with both hands. The phrase ‘penny wise and pound foolish’ never made more sense.

How do you manage work/business/projects through it all – You will need to figure out a way to manage both. I was lucky enough to have an extremely supportive workplace that offered unconditional support and became my extended family in this fight. Thanks to technology, most of what we do today can be done sitting in any part of the world. Make the most of it. This will mean pushing yourself out of your comfort zone to get things done. Don’t look at it as a problem. Look at it more like a challenge than you have been asked to undertake. Remember what Uncle Ben said, with great power comes great responsibility ☺

So is it all bad news, lots of work, being physically, mentally and emotionally drained?  – The answer is No! It’s not all about that. You will begin to notice a million things that you may have taken for granted till date. First, you will begin to be grateful for everything in life. You will realize the importance of this magic drug called hope.  You will realize that the situation could have been worse and to take whatever you have, in the bargain. You will realize how valuable a support system is. You will realize how awfully important it is donate blood once every 3 months.  You will realize how lucky you are considering the 4-year old who has come all the way from Bangladesh in the hope for a better diagnosis. And 9, 99,994 other things

Will leave the rest for you to discover!

PS – A whole of bunch of people have helped me through my dad’s treatment. I would like to thank them all for this. In specific, I would like to thank one person who has literally trained me for the last 6 years to face a situation like this. I am not going to name him. He knows who he is.

The fight is not over yet. My dad is scheduled for a surgery on Wednesday (27th). Hopefully, this will be the final war in this battle. But even if it is not, I am sure there is a way out for him. There always is.

If you are from Chennai and would like to help out in the general war against cancer, you can do any of the following:

1. Donate time, resource or money to the nearby cancer hospital. The first place that comes to my mind is Adyar Cancer Institute. Adyar Cancer Institute is like a citadel of hope. For a majority of the patients there, treatment is provided free of cost or is heavily subsidized. This does not mean that they are flooded with cash. Quite the contrary. You can find out more on how to contribute here.
2. Donate blood on a regular basis. Cancer surgeries involve removal and reconstruction of the affected area. This means loss of blood during surgery. You can pitch when asked for or donate voluntarily. If you would like to donate voluntarily, you can do so at Jeevan Blood Bank or register to find out about an upcoming camp.
3. Be there for a friend or a family member who is directly or indirectly affected by cancer.  Take them for a walk on Besant Nagar beach to help them de-stress or hear them pour their heart out over a plate of pongal, vadai and coffee at Rayar Mess, Mylapore
4. Make a list of the 24 hour pharmacies in your locality and share it here on Citizen Matters Chennai
5. Generally lead a fit and healthy lifestyle. The city has a few great options for you to do so. I personally recommend The Quad or Chennai Runners if you are looking at options to get fit and strong.
6. Help someone quit smoking.

If you have any questions or need any support on things related to cancer treatment and feel I can be of help, mail me on straightouttaadyar@gmail.com I will do everything I can to help you out.