Posted in cancer, health, weakness

Lets Be Weak

  • What do you do when you can’t take it anymore?

  • What do you do when people keep calling you strong but you feel none left?

  • What do you do when you want to give up?

  • How do you convince your loved ones?

The past three months have been tough for me. But last two were tough for my entire family.

I started the treatment my oncologist has been suggesting for many months and as expected, it turned out to be very aggressive which is taking a toll on me. This treatment is cycled weekly so even before I have a chance to recover from round one it’s time for round two. The unbearable body pain is the biggest problem, I can’t handle it. I wake up at night feeling like Thor is wielding the Mjolnir on my back, knees or head. This has started making me wary of falling asleep because it is such a painful way to wake up. I then need to have nurses called home to give me painkiller injections or have an ambulance summoned to take me to the hospital. This is becoming a daily occurrence.

Or I have my chronic cough that doesn’t seem to have a cure that makes it impossible to breathe and then I puke.

I have been admitted in the hospital for the third consecutive week while undergoing the chemo cycle because this medication is causing me all kinds of trouble.

Apart from having to watch me suffer, this period has been additionally tough for my family for a different reason too. We started external funding for my treatment. Having been on medication for two and a half years, we have exhausted our money and now for me to continue to heal, we needed to take help. So, we reached out to friends.

While I have been quite open about my disease, my family has refrained from talking about it much; however, through the funding process my mom and brother were exposing a very private part of their lives to the world.

We have received a lot of love and support through this funding process but it also gave people the opportunity to push some of their opinions on my treatment and what I should be doing. So right from someone saying I am an inspiration and they hope I recover, we’ve had people also say that I should give up because how long can we depend on others for funds or that we don’t need so much money for therapy, as there are better cost efficient alternative treatments that have cured others etc. Such opinions are quite hurtful for my family to hear.

Let me tell you, cancer is an expensive disease. It’s not just about taking chemo, your entire life changes. One needs money for radiation, surgery, alternate treatment, weekly blood tests, hospital admissions, doctor charges and so much more! The expenses run in lakhs. I cry because I see poor people unable to get treatment and I have also observed that doctors don’t give you all the options if you can’t afford them. We don’t want my options taken away from me because of lack of funds.

With all this, my strength has dwindled. In fact, I don’t have any left and one can’t keep looking at prayers and family for courage. Not after this long. With my painful pustules, body pain, chronic cough and weakness limiting me, my good days are far and few. I feel so jealous when I see friends going to work. Forget that! I feel jealous when I see someone just get up and walk!

My body muscles have become so weak that I can’t even climb small steps anymore! I should start physiotherapy to strengthen my body and I feel so aged from within. Cancer has taken a lot out of me over time and now it is beginning to show.

I want to see the light at the end of this tunnel, I want a break, a remission; none of which look possible right now. So, I am constantly cranky, I don’t have a sense of humor and I’m pouncing on all my loved ones. I have started feeling like a burden. My mum is running from pillar to post to keep my treatment going, to run the house, to keep things normal and this doesn’t give her even a minute to herself. My brother is unable to work full time because I am constantly unwell so he needs to take care of me. I am coming in the way of their normal life and I don’t know for how long I can keep doing this to them.

Of course, I get told off for sharing such thoughts out loud, but I can’t help but feel this way.

My time is spent majorly on the bed these days, and this is what a regular day holds for me:

  • A conversation with my pillow. I have named her Puto Aunty and she helps me cough less if I request her

  • Travel Plans

  • Thoughts about stopping my treatment and running away (If only one could run away from cancer)

  • Planning my bucket list (It’s a fun one)

Yes yes, you can advise meditation, yoga, positive books etc. I have tried everything. But after this long, I have started understanding why people begin to refuse remedy and are ready to give up. Because it is immensely tough to live like this. I have been reduced to a shadow of myself. I can’t work, I can’t travel right now, I can’t go out much… What is the point of having studied, having been given such a good up bringing if this is how I must lead my life? Like a burden on my family!

I have been extremely strong up to this point and fought everything with full punch. Now I think I need to be weak. I need to tell the universe that just because I am showing strength does not mean you keep springing innumerable hurdles. Maybe being weak will make it realize that I have had enough and now it’s time to be nice to me.

I want to live. But my way!

 

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Posted in bravery, cancer, discovery, happiness, health

Cancer, My Gift

People from social circles are getting married and having a child or two. They’re snorkeling their way through family bliss. There are others who are sky diving into their careers making a meaningful entrepreneurial life for themselves. Then there is me; happily unmarried and non-committed, floating through the abyss, rather jobless at the moment, sitting with my feet up against the wall, relaxing with my baby pug Chulbul while I read a book on my Kindle and nibble on a snack or two.

But I am also celebrating a very special occasion. It’s my second anniversary! Two years in the cancer universe. Woohoo! Thank you, thank you.

This special moment has left me misty eyed and I can’t help but put my book down and conjure up revoked memories of the time passed.


Cancer Diaries – 2014

Salary hike. ‘Employee of the Quarter’. New job opportunities. Possibility of a romantic relationship. Lost weight and looking fine. Family doing well and me sitting on a shooting star that was going towards the land where all dreams came true… Or so I thought.

In January ’14, when I discovered the lump, my predictable reaction like any 21st century human was to refer to Dr. Google. The 3:00 am investigation concluded as breast cancer and I went crying to mums room giving her the news. She was quite perturbed and probably thought the conversation was her hallucination given my abrupt entry and drama during the darkest hours of the night.

Long story short, I got an FNAC and ultrasound which diagnosed me with Fibrodinoma. Apparently very common among women my age [evidently not] and after a 10 day sample of a stressful life, mine was a happy and normal one again. Who would have thought that the sample was just a trailer of what was to follow?

It was silly of me to not have realized that a growing lump could be a sign of cancer and I still feel very betrayed that the doctor didn’t take the opportunity to educate me on the symptoms or call for a follow up.

In July when the lump had grown uncomfortably large, I told mum I need to see a doctor again and I’d be lying if I said I wasn’t expecting cancer to be the diagnosis. Somehow it had haunted me since January anyway.

There it was – Malignant positive! High grade cancer. The sentence that demolished me. What followed was an abrupt exit from my job, shattering of dreams, ego and vanity, loss of interest in the romantic relationship I was pursuing and running to doctors, trying to comprehend what was going on. Will I live? Will I die? Was I already dead? Is this a joke? Please be a joke. I am too young for this and cancer certainly does not go well with my image.

What followed was a series of extremely brave steps from me. See, I have always been at the epitome of health since a young age. No fractures, bad accidents, illnesses or visits to the hospital until I was diagnosed. [Except when I was admitted for food poisoning and then banned for the ruckus created while they inserted and removed the Iv]. Therefore, needles and medical centers were largely alien to me and my fear of pain very real.

I do feel fate has a role to play and maybe the destiny of our lives is predetermined.

I had got a tattoo done on the nape of my neck in 2012 to get over my fear of needles [what a random rationale]. It feels like a mock of kismet that this very tattoo helped me realize that though I don’t like it, my threshold for pain is high enough to get through treatment. Funny how certain incidents intertwine into the fabric of our life to make more sense later.

I am very proud of myself for starting treatment with no tears or fear; except when I lost my hair. My doctors, nurses,support group, everybody said I was brave with the way I was handling my horror movie and that watching me gave them strength. I don’t understand what that means. Maybe I wasn’t cognizant of what was being taken away from me and what I was losing as a consequence of this disease. But I guess my detachment helped me live each day at a time and get through treatment with blissful ignorance.

Yes there were side effects to the treatment like heat flushes, nausea, weakness, restricted diet and I also experienced a bout of depression and major mood swings during one period. The death of my rabbit, my baby, my life, came as the rudest shock that I couldn’t cope with. It was the first big thing cancer had taken from me and my darling had to suffer because of my disease. I wasn’t there when he passed and that hurts me even today.

But apart from that, I think my life was great. I also got to travel to London for treatment.

Sight seeing, Winter Wonderland, New Years Eve celebrations by South Bank, Christmas dinner.. none of these experiences would have been possible without my cancer.

Summer- ’15

I had attended my dearest friends wedding and wore a gorgeous saree. Her wedding was an occasion I had been planning since we met in 9th grade and being a part of those beautiful celebrations was a dream come true. But back to treatment- I’m in London again! London is fantastic during summer, amazing weather, lovely sightseeing and Wimbledon! Center Court tickets to Andy Murray vs Vasek Pospisil and then the Djokovic vs Cilic match. What a fantastic day of quarter finals!

What more could I ask for? Meeting friends, pub hopping, devouring chips, Mugs of Pimms and Dissaronno, Nandos, Udon Noodles at Wagamama and my favorite weekend outings at Camden town. Of course, the fact that Oxford Street was two streets away from my hospital helped a lot too. Ahh life was a fest and I was there for my best friends birthday too!

So what if I was diagnosed with brain metastasis towards the end of the trip? I’m still alive and kicking aren’t I? From almost going into remission to getting a horrendous news, Summer of ’15 embedded every possible emotion within it. I came back, sulked over my fate for a wee bit but then picked myself up and started working by the end of the year.

Summer ’16

I don’t work where I began at the beginning of the year anymore, but mum is opening her beauty salon and make-up studio next week and I will help her with that. That will be our latest adventure.

 I don’t look the same anymore, I had a mastectomy surgery finally and feel liberated from that horrible haunting lump after two years.  I didn’t get the reconstruction done as the surgery isn’t curing me.

I have put on and lost weight so often in this interim that I have ugly stretch marks.

Hence, with my bald head, single breast, and disproportionate figure, my vanity is below the poverty line and any hope of a relationship or marriage are presently out the window. But I don’t doubt for a moment that I am beautiful. I am!

Yes, I miss having someone to hug and call mine, but I’m glad I was single when I was diagnosed. I wouldn’t want to put the person I love through something as intense as this.


As I am sitting back right now, I won’t lie that I feel like a burden on my family. Cancer is an expensive disease and now after 730 days, the cracks begin to show. Private treatment in Central London wasn’t cheap. Nor are the tests, alternate therapies, living expenses and sundries. I wish I could take the pressure away from my parents. Or at least go into remission so that treatment can halt and I can resume being an asset rather than a liability.

But it’s something I don’t have control over. Maybe it’s karma. Maybe I attracted this so I am paying my dues, but that is fine. Life is Yin Yang and I have so much good come my way that focusing on the negative is very difficult.

My best friend is getting married at the end of the the year and I am his Best Man. From planning his stag do, to the dance performances at the functions, to my outfits; I am obsessed with the occasion and that’s keeping me going full throttle.

My soul sister will be getting married next year and then I will be obsessed with planning her wedding next.

Harry Potter and the Cursed Child is releasing end at the of this month and that has kept me going for long [OMG, I think I am going to hyperventilate into excitement on this]. Also, Sherlock season 4 will be out next year. Little objectives to look forward to, help me plan my life in short spans and not keep falling into the black hole of how long will I live? I have enough to keep me going.

So as I am celebrating my second anniversary in the cancer universe, I am only smiling and looking back with peace in my heart because I am alive and healthy and the more anniversaries I celebrate, the more cancer loses.

Will you celebrate with me?

 

Posted in bravery, cancer, communication, health, strength, support

What not to say to a Cancer Warrior

It’s never easy interacting with a cancer warrior; after all, you have to consider a list of factors before entering into a conversation with them. How is their mood, how are they feeling on that particular day, gauge how they want to be spoken to, keep your own emotions in control… along with many other aspects. I haven’t been on your side so I can’t comment with assurance but it’s what I assume.

On the other hand, I can confidently confirm that no one deliberately speaks rudely to a cancer warrior, however one can express themselves in an unintentionally insensitive or offensive manner.

Therefore, having lived in the cancer universe for almost two years, I can boast of a decent sized list of such comments to share with you. Not because it gives me pleasure to publicly embarrass myself, but because some of these comments are so often repeated, that I had to conclude that many well wishers don’t realize what they are saying is being counterproductive to their objective of motivating or cheering me up.

So without offending my well wishers,

Here is presentingggggggg 10 things to not say to a Cancer Warrior

1.Cannabis? download

“Can your doctor prescribe Marijuana”? he asked. “Ermm, I don’t know.” I replied with a grin. “Do you think you can get me some?”. “No way!”. “C’mon it’s the least you can do for me, you’re anyway going to die.”Haha, no I am not!

While I found this conversation quite hilarious, my family was deeply offended by what was said and I haven’t met him since.

Well, there is a school of thought that endorses cannabis to cure cancer by citing that many doctors admit it helps recede the disease. Still I suggest not to ask this favor of a warrior. I also suggest you don’t offer them some if you have access to it.

2. We were nice to you because you have cancer:

This wasn’t told to me directly but to my mum. The guy was lucky that mum handled the situation with dignity. If he’d said this to me directly, his tender parts would have received a kick from my foot.

I was deeply offended by his comment and let me assure you that no warrior wants sympathy or pity and we do not need anybody’s fake niceness.

3. How can he/she be getting married/travelling or doing XYZ when she has cancer?

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This is another one which angered me very much! I fail to see how people can sit and judge my friends and family’s lives from the outside.

How do they know what conversations have taken place among us to arrive at the said conclusions? Do they know that it was me who insisted that my friend get married or my family member travel in the first place? And why is it anybody’s moral responsibility to put their lives on hold while I fight this disease? 

We all come with our Karma and it is mine to see through cancer, I would hate to pause anybody else’s life till I go into remission.

4. There are healthier people dying before you

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The most common form of ‘consolation’ I have received from well wishers is with them telling stories of knowing someone perfectly healthy pass away, so I should be happy I am alive.

Let me tell you something- I have cancer so I am sad; you told me about somebody else passing away, that also makes me sad. How am I supposed to see a silver lining in this?

Yes, I see the point that is trying to be made, but all I can say is that there is a lot of difference in dying suddenly and watching the clock tick with the uncertainty that the disease will take you.

5. Share stories of others who died of cancer

Know a warrior who battled cancer and survived? Great tell me all about it. But telling me about someone who didn’t, what goal is that going to achieve and what is the expected reaction from a warrior?

This is the opposite of what you would learn in ‘Cancer Support 101’ or ‘Cancer Support Giving for Dummies’.

I can’t count the number of times I have had to politely ask my well wishers to stop their story mid way.

6. When will your chemo get over? When are your next round of tests?

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Maybe this doesn’t apply to all cancer warriors, but such questions make me uncomfortable. Primarily because I don’t know when I will go into remission. I should have by now and I surely want to. But each time I am investigated and I say “I don’t know” I feel like I have failed an examination and I am letting everyone down.

Having got three back to back bad reports, I don’t feel like telling people when my tests are. Not because I am superstitious, but because they will follow up to know the result and if it isn’t good again, I am going to feel like a failure… again.

7. When will your hair grow back?

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When my treatment ends? When my treatment changes to something targeted? When the world ends?

We have cancer. We have lost our hair. We are not in remission. How will we know when our hair will grow back? But more importantly, what are you going to do with that information? If you want to make small talk, there are loads of other things to chat about.

8. Cancer or no Cancer?

They: “How are you feeling?”

Me: “On top of the world :D”

They: Oh, you are healthy. yaaayy.

few days later

They: “What are you doing?”

Me: “On my way for chemo.”

They: “Oh! But you said you were fine”

Ermm, no I didn’t.

As I had mentioned in my previous blog How to interact with a Cancer Warrior, A warrior has vertical and horizontal days post chemotherapy treatment. On a vertical day, one can still feel on top of the world while having cancer.

Therefore:

Feeling ill [horizontal day] ≠ going to die

Feeling well [vertical day] ≠ cancer free

But the opposite is a common assumption many make.

 9.Sobbing hysterically  “I spoke to my astrologer, he said you are going to die.” 

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WHA???.. No comments.

10. Oh! There are various types of treatments available, you’ll be fine.

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When I tell people I have breast cancer I’ve received responses like “Oh, that’s an easy cancer.”, “There are so many options available for you”or “You’ll be fine in no time”

Really? Then why after almost two years I am still not fine? Also, I’m sorry my cancer is ‘easy’ should I choose a tougher one next time?


I understand that these are well wisher’s way of communicating with warriors in the best way they know. But some statements can sound down right ridiculous… easy cancer?

Well wishers and support people should evaluate what information they share with warriors and when to refrain from speaking. It doesn’t mean that you coddle us, but it surely means that you don’t tell us that we are going to die.

I’ve recently had a mastectomy without reconstruction and I’m prepared for the next series of insensitive comments. You never know, there might even be a Part 2 to this blog. 😉

 1

Warriors are not always the fastest or strongest people. Warriors are those who stand between their enemy and all that they love and hold sacred.

We are all warriors against cancer.

Cancer. Cancer. Cancer. Cancer. Cancer… scary word. No matter how many times you say it, you can’t befriend it. Cancer is that mysterious subject that we hardly know anything about. Except vague associations like chemotherapy, baldness and death… and some cases of survival. It has such a bad image given that it is passionately followed by Lord Yama, so dissociation is a natural course of action. Unless one is forced into circumstances that don’t give them a choice, why would one leisurely learn about this omen of death?

I didn’t know anything about cancer until it was slapped into me one fine day during my sense of self discovery. Cancer was this ugly slug residing at the bottom of an ocean bed that one could look at from above, protected by a body of water; we’ve all watched it randomly jump out and take someone for itself, but for me it lived in the abyss. I was far removed from this ugly slug with my belief that it would only take other people; never me or my family. That’s when the universe decided to humble me by flinging me into that abyss and even after a year and a half of choking and throttling, I am aggressively trying to swim upwards to pierce through the water for a gulp of fresh air… and I know I will get there eventually.

However, during this journey towards the surface of water, I learnt to live with my cancer too.  And that learning is the inspiration for this blog. The truth is that my cancer hasn’t been all bad. It’s been an odyssey of finding love, forgiving, healing, discovering myself, losing the people I don’t need, finding God and so much more. All these beautiful things came into my life only because of cancer. Cancer made me strong.  It taught me about accepting the changes that come in life and learn to live with them happily. It made me realize that happiness is my choice and taking back control of life is my decision. Cancer is only a state of mind.  I am confident that each cancer warrior has been faced with this choice and will have beautiful narratives to share on their decision on how to live with their slug.

See, a warrior can choose to live like a victim, be a patient on his bed and nobody would force him to do anything otherwise. That’s because his support group doesn’t know what he is feeling and will therefore let them be. A warrior has everybody’s unadulterated sympathy; hence he has to become his own motivator. Whether it is getting out of bed, talking, smiling, maintaining a routine or trying to not be envious of non cancerous humans. Every step is their war cry because a warrior holds his quality of life sacred and will fight for it. Cancer wins the day it beats a warrior mentally and he surrenders, but till he continue to treat it like a common cold and live life the way he wants, he is winning. The disease is scary, but our attitude towards it doesn’t have to be. Cancer can coexist with our normal life. It isn’t the end of the world and a warrior won’t let the thought of it tie a noose around his neck.

This brings me to my rationale behind this blog. You. You know somebody who has fought cancer; you may at some point be a support group to a diagnosed warrior. And you may not be prepared for it. Because nothing can prepare you for the intensity of emotions; neither yours nor theirs. Survival will happen. But the word cancer is so scary that we forget to focus on the happy moments and normal life that we live while with it. Your perception and reaction on cancer creates a domino effect to the supportive ecosystem. Don’t feed your fears to a warrior, don’t sympathise. Help them celebrate their life just the way you are celebrating your own. After all, it is the life in one’s years that count, not just the years in one’s life.

Cancer Warriors