Posted in health

How to travel with Cancer?

Note: This is one of the earlier drafts Sonia left on her laptop, which she couldn’t get around to finishing and refining. We are publishing it, in its raw uncensored form,completely as she wrote it. The information shared by her is so true and sincere that we hope it reaches all those who might need it. 

So let me continue from where I left off on my last blog. I fell from the swing, reminisced about the good side effects of cancer and picked myself from there. Now, I reacted to the anti inflamatory meds I was taking for the back ache which gave me the itchiest rash ever.. this is currently ongoing though I am doing much better. Mind you, it is two weeks since the swing incident. Between this time, I travelled to Goa for a holiday which was planned a month ago.   Now, tell me.. how do you plan your holiday?

  • Announce to friends or family that you want to travel
  • You decide a location
  • You check dates convenient to you
  • You probably set a budget aside
  • Book transport and accommodation
  • go. enjoy your trip. come back

How does a cancer warrior travel?

  • Announce that they want to travel. Then either get shot down by the oncologist or family that it is not safe or that we will fall ill.  If we pass this, then
  • Decide a location – This is decided based on the availability of closest hospital and oncologist in the travel area in case of emergency
  • Check dates – Hmm, I have a three week chemo cycle out of which the first week I feel unwell, this gives me a two-week window to travel so my dates are xxx
  • These should match the rest of your crew which very often may not.
  • You set a budget aside.. oh I don’t work anymore, I have no money
  • Book transport and accommodation – if it is a flight then thats two days of injections for blood thinning.. trains and busses not happening because there are too many people and cant use public toilets
  • Go. hope you don’t fall unwell there. Be very particular about eating fresh good food while out and literally bubble wrap yourself for safety.

After allll this, I finally made it to Goa.. itch in tow. While we had a beautiful trip with lots of misadventures, the task of planning a trip in India is a giant accomplishment.

This is because of the following reasons:

  • India’s climate is such that food rots fast so one has to be particular that it is fresh and hot
  • India is so dirty with garbage everywhere that one is bound to pick some infection up
  • The pollution in the air is off limits so breathing it, is a bad idea.. hence, cancer warriors are mostly encouraged to stay indoors and away from people.

Let me tell you how we planned trips in UK.

  • we decided where to go
  • ensured it was within my two week healthy window
  • we went.

I didn’t have to worry about any of the things. This enabled me to live a normal life while I was there.

Let me jump to my next blog which talks about the practical struggles of treatment in India and now let me compare that to treatment in UK. The reason this important to be shared is because of the basic approach to cancer itself. It is quality centric. The doctors care.. the nurses care and they make you feel normal. They encourage you and become your strength. Let me tell you how. There is a need for other countries to step up their game and learn.

  • treatment suites
  • nurses
  • complimentary services
  • assortment of treatments available
  • hair wig and makeup workshops
  • support groups
  • dieticians
  • fitness
  • books on every type of cancer and how to cope with it
  • hospitals that don’t look like hospitals
  • quality
  • treat people and encourage them
  • no restrictions- know your body.

Maybe NHS isn’t as efficient as the private treatment that I went for. But they are so much more than what we have available to us. And maybe a doctor cannot guarantee to cure it but the least they can do is provide  quality and auxiliary services.

My confidence came back because my team empowered me. They didn’t make me feel any lesser. Our morale could be just the tipping point between getting cured or not.

Now that I am back and have decided to travel a lot more, I’m taking another trip to the forest this month. Write a bit about that later

I have not experienced this support in India but I am surely starting to see that quality coming in. When I stated treatment in 2014 the doctors didn’t care. Now they do and while that’s the biggest step taken so far, I think it’s a giant leap for India in terms of cancer care. The auxiliary services and qualitative support will follow,  through slowly and I pray that all warriors are able to access successful and comfortable treatment.

 

 

 

 

 

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Posted in health

Luxury is.. Affording treatment for Cancer

I have always been fond of pets, and had been contemplating bringing one into my little universe recently. After doing some reconnaissance, I fell in love with this beautiful little pug and in my mind was sure that Chulbul would soon be part of my little universe. My family as always was supportive of my decision but as any Cancer warrior would, I decided to consult the other important people in my life before making a decision. The response unfortunately was predictable;

Because…

  • My oncologists discouraged me
  • The possible health and allergy hazards
  • I may not be able to care for him if my own health isn’t good
  • In India once you are diagnosed, everything becomes a NO!

Thankfully, I am a stubborn person and I brought Chulbul into my life anyway. Yes, I am worried if I can take care of him but I have my family to help and I am following all the instructions mum has set so my health is not compromised. But this got me thinking about the cancer universe that I now live in and I see how flawed it is.

Getting diagnosed with cancer is like getting plugged into the Matrix.. or maybe getting plugged out; But either way you’re in a different dimension of the world. You’re still a part of it, but everything has changed. You’ve changed, your perspective on life has changed, the way people treat you has changed… and yet life goes on.

Having had my treatment in both, the UK and India, I can tell you that there is a world of difference in the approach and attitude towards a diagnosed warrior and to treatment itself. While one focuses on quality of treatment, the other considers treatment a privilege. See how exactly:

Diagnosis

I agree that a lot is being done to create awareness for breast cancer in India and people are ready to run pillar to post for it, raise funds, schedule public drives etc. but how many of us can list the symptoms to look out for? The diagnosis for cancer in India is pathetic. General docs don’t know when to raise the alarm or take the opportunity to raise awareness. I noticed my lump in January which was misdiagnosed as fibrosis. Ok, that’s fine! But I strongly believe that the doctor should have told me what signs to look out for if the lump turns cancerous.

See, I didn’t know that a growing lump is a sign and I waited until July to get it checked again, by then my cancer had metastasised to other places. Can you imagine the anger? Everywhere they say that early diagnosis helps, and I did find it, got it checked early, but yet who is still living in the cancer matrix? Not the doctor, for sure!

Treasure Hunting

Once you are diagnosed, the treasure hunt begins. In the past year and a half, I have been treated by five oncologists in as many hospitals… it feels like I am a bit of a chemo slut having commitment issues with my doctors. But let me tell you why those relationships didn’t work out.

Oncologist 1

We went to him because he was highly recommended by most people and worked in a specialized cancer hospital. But I can very confidently call him a moron! Why?

  1. He never saw me while I was under his treatment. His assistants dealt with my case.
  2. When we went to him after three months for a change in my treatment, he had no clue of my case history
  3. He asked us to decide what treatment we wanted and he would administer it.

This is during the time when all my family and I knew about cancer was its spelling; and we get asked what treatment to receive?! … Anyway, I dumped him.

Oncologist 2

He is my guardian angel and made me believe I will be alright. My oncologist in London is the reason I feel empowered today. But more on him later, this is a long distance relationship because after 8 months of living in the UK, I got tired of alternating between being a tourist and a patient. I needed my normal life back and hence returned home. It was a mutual break up.

Oncologist 3

She is absolutely lovely and I miss her. She was recommended by oncologist 2 and we had full faith in her way of treatment and care offered. Until one fine day when I come for chemo, only to find that she is no longer associated with the hospital! That’s right, up and gone without a notice. No handover on what her patients should do. No notice to us. Nothing!

I cannot tell you how scary it is to be going through cancer and suddenly not have a doctor. My family and I lived through our own horror period with the fear that if there was an emergency, we’d have nobody to go to. In this case, she dumped me.

 

Oncologist 4

Onco 3 suggested this US return who had more attitude than talent. He was very clear of his work hours but unavailable most of the time. Call me judgemental, but it is heart wrenching to see somebody so obviously working for money with no compassion for his patients. Are my side effects or health issues going to come up only during your work hours? There was a lack of responsibility, so I dumped him.

Oncologist 5

I’ve just started treatment with her so I am still gauging her competence. Why? Because over this time my family and I have become somewhat experts on my cancer and often know more than the docs. If oncologist 1 asked me “what treatment to administer” today? I can give him an informed decision along with a slap on his face!

But the point I’m trying to make is how difficult it is to find a specialised oncologist. Most of them deal with all kinds of cancers and take so many patients that they cannot provide any quality treatment. We are already on the lookout for oncologist 6 as a back up. My family and I have commitment issues indeed…

An oncologist should imbibe confidence. We can’t see God, so we put our trust in our doctor and there is no scope for their errors and uncertainty.

Hello Treatment…

We belong to a country where getting medical treatment is a luxury only the rich can afford. And cancer is not a kind disease in anyway. Not only does it indiscriminately choose you without any criteria, rob you of the life you knew, your visage and health, but also your money. It is an expensive disease and I am blessed I can at least afford the chance for treatment.

When we met oncologist 1’s assistant to finalise my treatment. His first sentence was, “We will discuss your options based on what you can afford.”

I think that was the first time ever I fully appreciated the family I was born into or really thought about how lucky I am to have some amount of money that we could say ‘go ahead’ give us all the options, money is not an issue’. But this really opened my eyes on the importance of money in India for survival. When I went home that day I felt so blessed but cried that night just thinking of those warriors who have been cheated of their options because of money. There isn’t much government support for diagnosis and treatment and of what is available, there is a 6 month wait before treatment even begins. For many that is too late! Also the quality of treatment, therapy rooms and infrastructure in general isn’t great.

My advice? Get yourself a good insurance policy cover.

Type of Treatment

While there are options to choose from between chemotherapy, radiation and surgery. India has no shortage of ayurvedic treatment for cancer too. There is a great mix of spin doctors and good ones available who have cured people with traditional treatment. But how does one decide who to pick? There isn’t a centralised support system in India that allows a warrior to gather all the information and make an informed decision. One mostly follows word of mouth information from what little people can share with them about cancer.

 

Attitude of Oncologists

With my five affairs, I can largely capture the attitudes that most oncologists have towards their patients.

It is either super conservative where you are given a list of restrictions literally short of putting you in prison. Don’t eat this [which essentially means anything you love] don’t drink alcohol, don’t go out to crowded places, and don’t do anything really! This conservative attitude is the biggest connection to a warrior’s low morale. No these aren’t standard rules. Each patient is different and copes differently. I am largely asymptomatic and my immune system is strong. So I am able to eat food from restaurants, be in crowded places and pretty much live a regular life as long as I can be careful. But I spent so many months in fear following these generalized rules, that sometimes I feel I’ve missed out on the little things.

This attitude is followed with – You deserve to suffer. The doctors don’t care about your side effects. They don’t care how you deal with them and they are not there for you while you suffer through them. They will list out SOS medicines on your discharge summary and their job is done. Even if medicines are available to better cope with the side effects, they aren’t recommended.

The other attitude is – I don’t care do what you want, I am not available to you, come take your chemotherapy and get lost.

Chemotherapy Suites

On one side, the doctors scare you about being around ill people or in crowded places to the extent where you feel you will die on the spot if you are in a room that has more than 3 people. And on the other side, they will fill you into a crowded room of other cancer warriors for your chemotherapy! Ermm… what happened to your stupid rules now? We’re seperated by thin curtains where the warrior next to me is coughing his lungs off and I’m more worried that I’ll contract what he has and go back more ill than I came.

Qualitative treatment

India

It doesn’t exist here to be quite frank. In a country where getting treatment is extended to only those who can afford it, where is the time or bandwidth to think about their quality of life? Hospitals don’t have counselling groups, diet support, how to deal with the changes taking place, books to read up on the type of cancer one is fighting against. Nothing!

London

Firstly, I am extremely thankful again that I could afford the treatment in London and that I have such a loving family and support group who were willing to take me anywhere in the world to get me healthy.

Right from the organised way I met my oncologist; who took an hour to patiently explain my cancer, the available treatments and answer all my questions, and genuinely cared about how I felt and what I am going through. He had genuine concern for a 25 year old diagnosed with cancer, which gave me some belief and confidence. We were then shown our treatment suite, which although included other people, was well spaced out and ventilated to not feel like we were in a plague center.

We were explained how treatment would be administered, I was designated a nurse who would follow my treatment and be available for my chemos. Additionally we were given a book to write the symptoms of my side effects in [not the good, the bad ones] and also a number to call which would be attended by qualified doctors to help me through.

Along with that I was offered a wide range of complimentary therapies to cope with treatment which included massages, reiki, grooming sessions on how to cope with one’s appearance, counselling, how to exercise, deal with anxiety and weekly group session to interact with other cancer warriors on various topics among other things.

Each cancer warrior’s case is centrally updated so that we could speak to the pharmacist or receptionist or just about any staff member and they would know my case history.

This is private treatment too, the same as what I am getting in India. The treatment charges are largely the same but yet, I was treated as a human with respect and somebody who still has a lot to offer to this world.

When I told them of treatment in India they were disgusted! Yes, one should eat healthy but to take away from one’s normal diet is unacceptable? Or a blanket rule of not being in crowded places… how will I do my shopping? The treatment in India takes away in a certain sense the identity from you where as the treatment abroad focuses in keeping as much of your identity intact as possible. I could find myself and my confidence again because I had the opportunity to see the grass on the other side, and it definitely was greener. If I stuck to treatment in India, I think I would still be hiding in my house without sharing my diagnosis with anyone.

When I underwent radiotherapy, it was the most ill I had ever felt. The month long treatment had completely ruined my food pipe and I literally starved for three weeks while it healed. Through this, my nurse met me every single day after treatment to identify how I could be helped. She tackled all my ailments and offerred me liquid morphine to numb my throat, so I could quickly swallow a few sips of healthy drinks before the pain returned. The good side was that I lost 5kgs during this time and loved my figure. Too bad it didn’t stay as I binge ate once I could. Lol. However, when I spoke to some of my warrior friends about their radiation treatment who had also suffered similar to me, they weren’t offered anything! I shudder to think how I would have survided in India through this and am so thankful that I had support. Isn’t morphine available in India? It can be easily prescribed, but it boils down to the ‘‘you deserve to suffer’’ attitude of doctors. Apart from this I was given lotions for the dead skin, different undergarments that wouldn’t trouble my skin.

It was holistic treatment and not symptomatic like how it is in India.

Uncancer India.

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!

 

Posted in bravery, cancer, discovery, happiness, health, strength

Me 1- Cancer 0

My travel, for the most part of the last two and a half years has been because of cancer. Either for it or from it. I globe trotted to London for almost a year for treatment, but also domestically to Delhi, Hyderabad, across Bangalore and other cities. There were leisure trips too, but now I was finally travelling for fun, love and life.

For my best friend’s wedding.

When I was announced as the Best Man, I was bestowed the responsibility of planning his bachelor party and given that it was an Indian wedding, the dance performances. He lives in the UK, so I coordinated with his friends in Bangalore, Birmingham and family in Kolkata for the wedding details. I thankfully had a year to plan all this and honestly, I needed the time. With my erratic health and susceptibility to anxiety, I could do things at a calm pace.

The biggest challenge for me was to feel well enough to enjoy the celebrations. This wasn’t easy.  While 2016 began splendidly with good health, new job and things going in the right direction, I had a mastectomy surgery, increase in brain lesions resulting in radiation and a line of treatments from June till September that didn’t suit me and sapped me of all energy. I was on bed most of the time and had to quit work too. The next treatment that was recommended wasn’t going to help me either. I would lose my hair, my immunity, be unable to eat out and pretty much be confined to the bed.

That’s when I decided that the type of treatment I receive should not be a hindrance to the kind of life I want for myself. After all, cancer shouldn’t be controlling me; it is only a small part of who I am and not what my life should revolve around.

Thus, began my war against the treatment. I was clear that I will attend my best friend’s wedding looking normal, with hair, strength and the ability to do all things others can.

And I did. I also lost my desired amount of weight so I felt confident and great!

We went to Goa for four days and I took part in all the water sports, ate in shacks and even had some drinks. Para sailing, banana boat, kayaking, snorkeling, dolphin sighting and then swimming in the middle of the sea surrounded with nothing but water. Enveloped with friends, sun and a festive atmosphere. What more could I have asked for?

image1-6

The wedding was loads of fun and I could be a part of all the functions. The DJ nights for dancing on Bollywood and Punjabi songs, mehandi function, next day engagement, then baraat and reception. Everything was a highlight. Yes, I did get tired faster than others and needed to sleep longer, but only marginally. I don’t think that anybody could tell that I am battling cancer and that is very important to me.

Before the functions, I had nightmares that my wig would go flying while I am dancing or that I would get tired and faint in front of everybody, but thankfully none of that happened.

image2-3
My best friend- the groom and me. My wig didn’t go flying while I was dancing because I didn’t wear one. Part of his many demands.

This success would not have been possible without mom. She understood the importance of me attending the wedding as Sonia and not a shadow of myself and stood by my decision of not letting cancer dictate my life terms. It meant her having to fight the doctor, make family and well-wishers understand my rationale, and that’s not easy. It’s not easy to take a break from treatment or refuse treatment while battling cancer, but we braved that.

From the day my cancer was diagnosed, mom has been my biggest support. From taking my temper, tantrums, me crying to eat non-vegetarian food, refusing to get chemo because I am not in the mood, having food cravings and ordering biryani from local joints, all without a complain. She also manages the house, her business and various jobs, liaises with the numerous doctors I am connected with, identifies and understands my often-changing treatments, raises funds for my medication all alone without batting an eye.

All I am expected to do is turn up, take treatment and stay strong. Everything else is handed to me on a silver platter. I don’t believe much in religion and my spirituality is shaky. But I believe the universe gives you what you want and she is my universe. My fairy, my angel, my God.

She has let me keep a puppy though I am unable to care much for him myself [my brother is the primary carer] because she knows how much I love animals.

Because in these 28 years, there isn’t a single wish I have made that my mother hasn’t made come true.

image1-1

Our tradition of morning tea and coffee, and eggs together at night are precious to me. We go for all movies and food outings together. She is my soul; my gossip partner and I am nothing without my mom. We always say to each other that it is dangerous to love someone so much. But there are very few people on a bad day who can motivate me to keep fighting cancer. She is the first of the top five people in my life, all others come later.

So, as I end 2016 with a bang, now looking for the next thing to obsess over, I want to dedicate my blog and life to you mom. It wouldn’t have been possible without you.

I don’t know what 2017 has in store, but with mom by my side, I can continue fighting cancer with the same resilience as day 1.

 

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. 😉

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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