radiotherapy – Lets Talk Cancer

bravery, cancer, discovery, happiness, health

Cancer, My Gift

Posted on July 30, 2016August 7, 2016 by LetsTalkCancer

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?

bravery, cancer, communication, health, strength, support

What not to say to a Cancer Warrior

Posted on June 18, 2016June 18, 2016 by LetsTalkCancer

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?

“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?

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

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?

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?

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.”

WHA???.. No comments.

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

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. 😉

bravery, cancer, discovery, health, strength

How to interact with a Cancer Warrior

Posted on May 14, 2016June 17, 2016 by LetsTalkCancer

“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.