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.

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Author:

Sonia Boury is a twenty seven year old lady from India. She is a strong, independent individual brought up in a family that encourages her to voice her opinions and live with empowerment. She loves to talk [hence made a career in communication], meet people, try new cuisines, read books, travel and loves animals. She is madly in love with her family and is a little obsessed with her mom. Slightly rebellious and hot headed, Sonia's personality helps her survive the corporate world of Public Relations and Digital Media. It is also currently helping her deal with cancer and fight it every single day. Since her diagnosis in 2014, her life priorities have changed from trying to win the rat race to win at life itself. However the objective now is to use her skills to spread support for cancer warriors and create a qualitative support environment for them. Life has been topsy turvy since sometime and she is in the process of rediscovering herself. Does Cancer now define her? Maybe not, but it seems to have brought a sense of clarity into her life which she is currently trying to apprehend. Blogging is helping with that. Life isn't perfect and nor is she.. But hope you enjoy reading what she has to say.

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