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, discovery, health, strength

How to interact with a Cancer Warrior

“You will get through this. Not because you are getting treatment, but because of the person you are.”

“Not everyone would have accepted this illness and fought it the way you did, you are an inspiration to all”

“You look beautiful. Your hair doesn’t make you who you are. Your heart does”

“Sunshine Girl”

“You smiling through your disease helps us deal with it better”

“When you got diagnosed a lot of lives changed. We are all in this together and with you right till it all goes away”

“You are in our thoughts and prayers always.”


Positive reinforcement is always fantastic to hear and I have been blessed to have received an immense amount. It helps us warriors get through tough days and sometimes the words spoken can be exactly what we need to hear.

However, from your perspective, it can’t be easy to respond to the news of a loved one being diagnosed with cancer. Ones instinctive reaction is to let their own fears takeover, but most often that isn’t what a new warrior needs to see or feel.

How one responds to news and acts spontaneously is of utmost importance. So as a resident of the cancer universe, I thought I could assist you in dealing with your own emotions or certain situations better while you support your warrior.

Of course this is only my perspective and each warrior responds differently, but I hope it benefits you nevertheless.

1. Chronic Disease not Terminal:

Cancer is no longer considered a terminal disease. Warriors live with cancer and they can function fine. There are numerable other diseases that are incurable but cancer fortunately has many treatments available. So yes, it is a tough journey but it doesn’t always have a negative conclusion.

I don’t know when my cancer will go into remission. It probably will or won’t, but that’s not going to stop me from planning the next fifty years of my life. Yes, I may stay on treatment always, but people with many other diseases have to live like that too.

Hence if you hear of somebody’s diagnosis, don’t let fear of death cloud your emotions.

2. Precaution not Paranoia:

When a warrior is diagnosed, the support group can get paranoid while caring for them. Everything is new and unknown, the oncologist has given a long list of restrictions along with a longer list of side effects to treatment. You will want to avoid as many of them as possible therefore you may over care.

I remember when I was diagnosed and told not to be in crowded places, I was literally not allowed outside my room. Not more than three people could see me at a time and that was permitted only if everybody was wearing a mask.

Maybe that is required for some warriors, but I was fortunate that my body accepted the treatment well. Therefore, after some tantrums from my end, counselling from nurses and experience, my loved ones and I reached a balance of caring with precaution not paranoia.

Observe how your warrior is responding to treatment and don’t let your nervousness limit them.

3. Gauge your emotions:

The reason I can battle cancer with strength is because nobody cries or acts weak in front of me. My support group is very matter of fact about my illness and we have normal conversations. Emotions on the topic from their end are kept to themselves. But that helps me; however, for another warrior your tears and responsiveness may be therapeutic.

Therefore gauge your emotions and behavior around those in treatment. Also, this needs to be done each time you are around a warrior. Our own mood can be very erratic hence your emotions shouldn’t burden further.

Some days I am happy to cry about my cancer with a friend but other times I have cut off from well wishers, because their perturbation was too overwhelming for me.

4. Take permission before sharing information: 

When we know a cancer warrior and receive information about the disease, the impulsive reaction is to share it with them. And you should!

It helps us gather points on how to care for ourselves while taking away the responsibility of finding the information single handed. However, it’s polite to seek permission before you share.

Sometimes information can be overwhelming, or on a good day we want to pretend like we don’t have cancer at all, or perhaps we just aren’t prepared for a WhatApp or email link bursting to tell us something good or bad about the disease.

5. I have found a cure:

You may know an oncologist or person providing alternate treatment who has cured other warriors, but each persons genes are different therefore what worked for one person may not necessarily work for others.

So as much as one may appreciate your concern, please don’t say you have found someone who can cure cancer. Cancer is complicated. What you could say is, ‘I know this worked for somebody, would you be interested to know more? I can connect you to xyz and you can take it forward if you like. After that let the decision be theirs and try not to keep following up.

6. Respect a warriors thoughts on God and Spirituality: 

As I have mentioned in my earlier blog The Good Side Effects of Cancer, many warriors discover or divorce God during diagnosis. This is a long, lonesome and personal journey, therefore do not preach if you think a warrior is upset with God. Even if it is offensive for you, respect their emotions.

7. Respect the morbidity:

Despite everything I say in my blogs, the first reaction when I was diagnosed was ‘tik tok there goes my clock’… and morbid thoughts come from time to time.

It can be difficult to hear a warrior talk about their death but be strong and listen to us. You don’t have to say anything. One hug at the end of the conversation is all that is expected of you.

8. Motivate on Vertical Days

 I learnt this interesting concept from a fellow warrior when I entered the cancer universe. She said ‘Sonia, I have two type of days, vertical and horizontal. The days I am fine I am vertical- up and running and the days I am not, I’m horizontal- sleeping on my bed’. It’s been the easiest way to explain to family how I am feeling each day.

On a vertical day, treat your warriors as you would pre-cancer. Don’t be over-cautious around them. Let them move around, cook or do something interesting. Motivation sometimes needs to come from our support group. As mentioned in my first blog – Cancer Warriors, it is easy for us to stay in bed and feel sorry for ourselves, but if you see that a warrior is doing fine, push them to do better.

9. Bald is beautiful but don’t lie:

Cancer alters a warrior’s looks. Yes, we brave the changes happening to our skin and the loss of hair. It is also very nice of you to say that we carry off the look well or still look good. But it ok to agree with us and say “we miss how you looked too”. Don’t be rude, but unconditionally complimenting also doesn’t help because we may have cancer but we haven’t turned blind.

10. Be consistent in your support: 

When I was diagnosed, my house was filled with people like it was a Grand Indian Wedding. Almost two years later I can count the number of friends and family still involved on the fingers of one hand.

That is ok. My treatment has been going on since sometime and people get busy with their lives. But that isn’t the case for everybody, therefore if you tell your warrior that you are going to be a part of their support group then ensure you stick around.

Maybe discuss responsibilities- that you will come for chemo with them? or maybe bring food or babysit their pet? But be there if you say you will.

If stepping away is your only option, then talk about it and inform your warrior or their support group. It’s politer than drifting apart because your absence will be noticed.

11. Create your own support group:

Taking care of a cancer warrior can be intense. Keep a support group for yourself where you can share your emotions too. Your warrior may not be your best counselor, so let your friends and loved ones get you through your tough days.

12. It’s ok to ask questions: 

I didn’t know anything about cancer when I was diagnosed and I realize that most people don’t either. So I am happy to tell them whatever I can from a science and emotional perspective. However, a basic research from your end would be helpful so the questions asked are mindful and respectful.

For example: If you are going to ask me what stage my cancer is and I answer stage 4, don’t give me a shocked look. Stage 4 cancer does not mean terminal cancer. It just means it has spread to many parts of the body.

13. Develop an appetite for intensity:

Till I am positive, cheerful and hunky dory, I have a lot of people around me. The day I am feeling morbid or grumpy, not so many. Of course nobody wants to be around an unpleasant person but hey, I have cancer! I’m allowed this much. So be strong and hear us on our tough days.that is when we need you.

14. Strength is contagious:

When you interact with a warrior, do it with all your love and positivity. Be a catalyst of strength.


If you can keep these thoughts in mind, you’ll make a splendid support person. You don’t have to remember everything but if you have grasped the emotions then you’ll work your way through very well.

Qualitative treatment is developing and we are all still grappling with ways to deal with cancer. So I thank you for having the best intentions for us warriors.

If any other cancer warrior is reading this or if you, as a support person, can think of points to add, please comment below. It would help us all.

 

 

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