2020 has been a tough year for the whole world and it has been, for me as well. Challenges, losses, big moves in life have happened.
One of the most difficult period of my life started when my father got diagnosed with throat cancer in August 2020. I was referred to Basavatarakam Indo American hospital in Hyderabad for his treatment and exactly as I had heard, the doctors here are the best in their domain – very dedicated and good experts in what they do.
My review here is for the entire experience I had during the course of my father’s treatment.
First things first, about cancer treatment, no one – no one tells you how difficult it is and how lengthy it is. Unless you are aware of the treatment and what it entails; you will never be prepared. It can take your peace away and test your patience to its brink. On one hand, you see the patient suffer excruciatingly; but on the other hand, what one goes through as a caregiver is another story altogether. And yes, finances – it can drain away everything that you have earned in your life. No, insurance does not help and is never enough. Plus, what happens with insurance is another story. Insurance industry runs on ambiguity of everything – ambiguity of disease, of medication, of hospital admissions, of every damn thing.
If you are looking for the best treatment for yourself or your near and dear ones, then the doctors at Indo American do fit the bill. If you know how to work around other challenges, then this is a good choice to make at least treatment wise. Rather, only treatment wise.
One note on Emergency Room doctors – they do not cut a great picture, neither of competence nor of accountability. One of the doctors actually LIED in the log book that he had requested us for admission and that I had refused it – while in reality, the cosulting doctor had clearly said that there was no medical reason for giving admission and that patient could be discharged. It sometimes, boils down to individual ethics and the moment to moment dynamics that happen at that point in time. I came to know that a statement like this one, made by doctors, could end up hampering your chances of getting insurance because the insurance folks treat it as interference in treatment from insured.
Unfortunately, I found most of the nurses in Indo American extremely callous and irresponsible. They shirk responsibility and keep passing the buck from one person to another.. when it comes to patient care. I also found them highly strung, anxious and at the end of their tether most of the time. They keep screaming at each other and at the ward boys – displaying displeasure about everything around them. They do make sure that the patient and their attender do not face their ire – but everything else is usually put under fire. One more strange thing I realised that the nurses here have zero compassion and are just discharging their duties out of force or majboori. It shows in their attitude, in the way they talk and in the way they behave. Also, as a caregiver, you have to be very VERY vigilant – lest they do not even give you your set of medical reports of the patient. Twice it so happened that the tests that were done when my father was admitted – the reports were filed only in their confidential copy of the file and only when I explicitly asked for the reports, they gave me the same copy and asked me to get zerox copies for THEIR file.
There is no provision for special needs of the patient. My father was on a completely liquid diet and nurses just would not look into it – blaming the canteen for no liquid food except soup, etc., and that too only at a particular time. So I had to arrange for his diet needs from outside and I struggled because I was so scared of infection. I specifically faced this challenge because Hyderabad is not my home town and I had shifted temporarily for my father’s treatment. So I neither had a kitchen nor the utensils to get him his food. My childhood friend’s family chipped in here and sent food for almost 10 days from Secunderabad – thank God for blessings like these.
For a hospital that depends on floating population and a good bunch of foreigners that come down here to get themselves treated for cancer, this was a basic thing that was missing. My intention is not to complain but make everyone aware of these challenges. I had to listen to my father’s cries of hunger – he would live on 3 absolutely watery soup glasses that were given to him morning, afternoon and night and 2 glasses of milk – all about 50 ml. It was the most painful thing for me. I was not allowed to meet him due to COVID and I expected that he would be taken care of – he wasn’t; not at least until he was in the COVID ward for 4 days. He lived on hunger. I suffered the pain of seeing him in pain and starvation.
Once his tests were out and he was declared completely COVID negative, he was shifted to a regular room – and after that it was slightly better journey. He had to get a tracheostomy done for ease in breathing and a PEG tube so he could be fed via stomach. What one goes through with tracheostomy is another story – which I will dedicate a separate blog on – but for now, let us just say, here’s where the nurses lacked compassion.
It’s all about money. They help you with a wheel chair, they expect money – no no, they blatantly ASK for it. They help dad with his sponge bath, they ask for money. They change the sheets – they want money. It was crazy. I was foolishly handing out 100 rs everytime to them – and then one day, I realised, how do others manage? The realisation came when one ward boy asked for money after giving my father his sponge bath and when I handed him a note, he felt it was too less and high-handedly said, keep it with yourseldf.
Because 6 weeks of treatment and if I am handing out let’s say an average of 200 per day to the ward boys for doing what they are being paid to do, in addition to the treatment costs, I end up paying a good Rs. 8400. I realised this is loot.
What I found the worst of the entire experience was that there was no counselling for the patient or the caregivers – we had no clue what to expect and we just kept guessing, taking each day as it comes. I ask TOO many questions – so I managed to try and understand what was going on, what treatment was being given and how to deal with the tracheostomy, what to expect, etc. But overall, it’s a blind game. You go through it to know it and see it. There is no other way. If you know about the treatment or have read about it, you might know what to expect but otherwise, you have to make peace with piece by piece of difficult realisations – 1) That the treatment will take a minimum of 6 weeks 2) That even after this, there is another 6 weeks of recovery period and that you will not know how effective the treatment was until after the recovery period. 3) That the entire expense will be draining you way more than you expect – so if you expect the treatment to be about 5 lakhs, in reality you will be spending 2x of that. And insurance will pay a pithy amount and tell you that your sub limit has expired.
The most difficult part of cancer treatment is to see your life getting wasted away waiting for doctors, nurses, medicines, lines, queues, one cabin, another cabin, and then days pass by listlessly. If you are a caregiver and have a job, expect issues – because there is hardly any awareness around cancer treatments and so, compassion is not easily obtained. My experience has been different in this case, by God’s grace because my MD has seen cancer treatment in his family and hence, he was the most compassionate in all this. Not everyone is that lucky and there is a dire need to fill the gap about cancer treatment awareness for everyone’s benefit.
All said and done, I am thoroughly grateful to everyone, no matter what, for being part of this journey and I have had friends and family comeing together to support me through this. The struggle is not over yet but I am hopeful that it soon will end and I will see my father hale, hearty and smiling with ease at home.