What I have learnt battling cancer, and how you can help someone battling it

(I could only cover a few bits here as this has perhaps been a very triggering article for me as well, as I do have PTSD from those days. I’ll probably write the rest, as and when I can.)

(Also, I’d like to dedicate this to my fellow warrior - Sonia! You helped me navigate this storm and have taught me so much and for that I’ll be enterally grateful. Wherever you are, I hope I am making you proud, and you are happy and full of life there! I am blessed to have met someone like you, my love. Till we meet again, love you and miss you loads. RIP my doll. <3)

Oscar Wilde had once said ‘Experience is the hardest kind of a teacher. It gives you the test first and the lesson afterwards’. To be honest, experience is a tough teacher, but the best one out there, because even if you don’t want to move ahead, mould and grow, you have no choice but to learn and nothing becomes real till its experienced. Six years ago, I was in a place where I did not know the head and tail of what to do when it came to fighting for my life, and through talking to doctors and other patients and survivors, I learnt to navigate my way of out the storm. I vividly remember, a doctor telling me that one day you will teach and navigate someone else also who is in this pain, someone in need would ask you for help and you would look back, at all those painful days and make someone else’s day less painful. This has been my prime objective since I was given a green signal. This and trying to do something about childhood cancer. So here I am, trying to pass on whatever I have learnt, experienced and gained over these few years, so that its less frightful for anyone else who is reading this. Somewhere, this is me giving my homage to the people who navigated me, and to myself for having had done it, because at no point I ever felt, six years down the line, I’ll be doing this. So, if you know someone who is suffering and battling one of the toughest diseases ever, this is for you. May this give you all the answers and knowledge to what it is like, help and soothe you out a bit, and just give you a big fat hug. If you are a person suffering through, then I am sorry that you are, but just remember, pain ends. It might be dark, gory and the worst right now, and I completely empathise, but it will end and you can get out of this, you’ve all the strength to need, you got this.

Before I begin, a disclaimer. Trigger warning: Cancer. I am not a medical professional. This article is just coming out of my experience of what I have learnt, I will not be going into the technicality of any cancer because, I don’t know any, and it will be wrong for me to comment on it. Please, please only consult your medical professionals on this, and use this article just for a tight hug. You can contact me directly, if you need to speak to me personally, my DMs are always open. These aren’t advices but just a survivor’s recount of the tale, so please follow caution. Also, everybody is different, every journey is different, treatment is different, cancer is different, and healing is different. So, whatever that might apply to me, need not apply to anyone else too. This is just few myths to bust, things you can keep in mind and will just ease your mind if you are seeing someone battle it, but in no ways any medical advice.

So now that’s out of the way, let’s begin. Firstly, whenever you hear the big C word, the first thing that comes in your mind is ‘death’, which was kind of what I used to feel too, but my doctor reassured me that its such a myth, because yes a lot of people do die because of it, but not all die. In fact, thanks to the advancement in medicine and the vast research on this, a lot of cancer is treatable and curable, and it all depends on the type of cancer and the stage at which it is detected too (plus a lot of other factors). So, if you hear someone is suffering from cancer please, and for love of god don’t just assume they are going to die or are dead until a doctor confirms anything. In my experience, whenever I had told someone I was suffering from cancer, they just assumed I have limited days in my hand and can go away anytime. I remember my doctor telling me I have a higher chance of dying from slipping and falling on my head than cancer, which shook me. So please, just don’t assume things until a medical professional has vetted it. Trust me when I say this, nobody knows anything until its done. Miracles happen, and there are things beyond everyone’s control, which whether you believe in it or not, happen. So yes, for Christ’s sake, please don’t break down and assume the worst when you get to know a loved one is suffering from cancer, especially not in front of them. I know its an extremely tough phase, and very very overwhelming, and its normal to cry but please avoid doing that in front of the patient. I remember, every time someone broke down in front of me, I had a panic attack till the point my doctor banned relatives from seeing me (at least till they fully accepted my state). If you are at a place where you are having a hard time dealing with this news, accepting this or getting to terms with it, its natural and very valid. In that case, my suggestion would be to speak to the concerned doctor in detail on what can and cannot be done, get all your doubts cleared, and leave no stone unturned there. Get second opinions if you need, get all your clarifications, and if its still traumatising, speak to a mental health professional too (if needed). Its of an utmost importance, that you keep your strength up in front of the patient, because they are traumatized to a whole new extent and need all the strength they can muster. A patient can only get the strength, support and love from their closest ones, that can bring them to fight this battle. If you are finding it tough, its okay to take time off and feel better before giving any strength to the patient, its very important you ensure your emotional needs are also met and taken care of.

The best way of starting this battle is knowing everything that is to know about it, believing and trusting science and doctors and not your relatives who give any unsolicited advice. Please keep them away! I remember, a bunch of relatives had visited me during my treatment, and it was a happy and a well day for me (which was quite a rarity in itself), till some of them came and broke down and wailed in front me like I had already died. That definitely did not do me any well, and I spiraled too, after which i refused to meet any relatives for a very long time. (Poor mom, who had to deal with so many of them). As a caregiver, please ensure you do NOT entertain this. Any unsolicited advice which is against the prescribed protocol, any pseudo-science knowledge which can be dangerous, any ‘i-know-more-than-you-and-your-doctor’ advices, any negative advices or any negative comments for that matter (no, I don’t want to know which planet is going to hurt me and which God is angry with me now), anything that causes you discomfort, PLEASE SAY NO.

A lot of people have a lot of opinions based on cancer, and albeit its their own right to have them, if that’s not in line with the protocol, is causing you any anxiety or is just plain negative and unnecessary, keep them at bay. The best way to know this is just discussing all these ‘advices’ with your doctors, before administering anything, and let the doctor confirm/deny. They are the ones treating, not your neighborhood aunty who graduated from Whatsapp University. (An aunty had asked mom to stop my chemo and give me some herbal concoction and yes if I had listened, I wouldn’t be writing this, so pls don’t administer things without having a doctor knowing about it!) And please stop the sympathy fest. JUST STOP. The worst thing you can do to a cancer patient is a sympathy fest, pitying them for the mess they are in as if they did not know and just be a train wreck in front of them. They need strength, not any sympathy. For heaven’s sake, don’t ask them when they are going to die. Like Why? Why would you even ask that? For ease, ill illustratively jot down things never to ask a cancer-patient/ things not to do in front of them:

1.      DON’T ASK THEM IF THEY ARE GOING TO DIE AND WHEN or what is your survival rate or anything about death. They’ll probably kill you before you finish that question so yeah, and your survival rate will be in a bigger question. 

2.   There is a difference in being inquisitive and caring. Know your boundaries on what you can and cannot ask a patient or anyone dealing with cancer (caregiver/survivor). Please don’t feed your knowledge by asking them questions on their cancer or treatment just so that you can know the technicalities, because that shit triggers and is very inappropriate. Get permission from them before you want to talk to them about their problems, and for the rest of your Grey’s anatomy knowledge, please take it elsewhere. Google it or ask medical professionals but not the person dealing firsthand with it. For you its some general knowledge, for them its their life so show compassion.

3.    Please don’t share any pseudo-science from TV shows you have watched or google articles you have read about that cancer. Don’t need to give any unsolicited advice, and just be there with them during that phase. Talk about everything else other than the stupid disease. There are a million topics. Please remember, cancer is a part of their life and not their life. If you can, refrain from talking about it, unless the patient really wants to, and just have a positive outlook. DON’T TELL THEM HOW YOUR AUNT’S MOTHER’S SISTER’S RELATIVE DIED BECAUSE OF IT, because hey if it’s not positive, don’t mention it. And please don’t go all ‘bohot bura hua, bechara’ on them.

4.  As mentioned before don’t start a sympathy fest. Boost them up, empathise, don’t sympathise. Patients are a lot stronger than you think, so they don’t need pity, just a leg up in fighting this battle.

5.    Be wary of the needs of the patient. If they need you to wear a mask (regardless of the pandemic) and maintain a social distance, please do that. Especially after their chemo, because cancer really kills immunity. If you are already sick, consciously avoid being near the patient.

6.    Don’t stare at their heads. Yes, we don’t have hair, but they will grow back, but don’t stare like we are an alien. That’s rude. And then again, no sympathy please.

7.   Focus on uplifting their moods, get a nice board game if you are visiting them, or watch a movie together. Suggest some nice books to them and maybe a new recipe to learn. If they are in a state to go out, take them to a safe and nice place. Suggest them some happy music, talk to them if they are feeling overwhelmed, hear them out. Hug them (if allowed), sit with them and just be normal. Its tiring to be honest to keep hearing ‘you have to be strong’, so just for that time, don’t remind them that they are suffering. Trust me, when they are happy and social and just not thinking about it, they are recovering. Even my doctor had told me how my thoughts are the biggest challenge here, and how I need to constantly not think about cancer, and rather be productive. This kept me positive and occupied and helped a tonne. I’d refrain from gifting flowers and food items because they are purely not safe, but if you really wish to gift something, stick to books, scented candles, cards, or anything they like (just be wary of their needs).

Well you get the jist. I can go on and on, because these were few things that really bothered not only to me but also my fellow patients and survivors. We were tired answering all the questions about over survival because for you they just might be questions, but for us, it’s our life. Sometimes it drained us out, sparked anxiety, got us in a negative mind space, and worse felt intruded upon. There were things we were still coming to terms with and having to explain that to another person and having your identity fixed as a sick patient, is just devastating. The only wish we had was for normalcy to be restored, and the more normal you can behave (I know its hard), the better the patient can feel. Again, this is coming from my experience and others might differ and that’s alright.

The reason I emphasise so much on this is because cancer is very much a mental battle than a physical. It’s the mind that needs to fight it, then the body follows. It is constantly an ongoing war, it is something that needs to be fought, but that can only happen when your mind is positive. I remember how bad my chemos would go and affect me when my mind was negative and in a bad place and how fast my recovery would happen when I was in a positive state. This does differ of course from patient to patient, but the power of your mind is absolutely crucial at this state. The more positivity you can enforce and keep, the better it is. For this reason, please ensure you are yourself in that positive state, and your emotional needs are met too. The best thing we can do is, just hope, pray and form an army to help the warrior fight this out. If it’s a triggering thing for you, it’s okay to step back. It’s okay to feel all the pain and get all the help you need too. It’s a teamwork, no doubt, and hence, just hold on because like I said – pain does end.