I am a rare variety chatting about my vHL story

 Since birth, all I can see is struggle. Even before I came to the planet. My mother is a different being altogether.

As she got pregnant, She was subjected to cruelty and ruthlessness by aunt and granny-tyranny. They used to make my mother do heavy jobs while she was carrying her first child and she had a miscarriage.

 When I was in her womb she was again subjected to heavy jobs in the kitchen. Mother had developed certain problems with her pregnancy. She worked too hard to bring me into the earth. She cares for me like no one. She used to play with me and was my only playmate.

Currently everything inside me is out of order. My missing liver which has been stitched back with a replacement; my left kidney, part of which is gone forever; my brain which has been burnt by radiation beams. resulting in an ischemic brain and the tumours scattered inside sparkling like a star punched sky yet the "little grey cells" had worked out an exceptional detective book during lancinating pain with one-eyed vision and typing with the index finger of the right hand because after the had got palsy and was treated with high-dose steroids( omnacortil/Prednisolone ) by a doctor but the hand doesn't work like before and the left had after recovering from paralysis during the craniotomy didn't get back the sense of touch and both halves of brain lost coordination and refuse to work together. I can't explain the pain I had while writing with my one-eyed vision. With swelling in my eyes and eyes, which feel it like on fire with tears streaming down, but my passion for writing made me write 3 books.

The first book- The Adventures of Mum And Princess , an unique collection of detective stories.

I have also written a fictional account of my life story; The Warrior Dies Dancing, That's Who I Am, which is published in the Indian Literature journal of Sahitya Akademi in the September- October issue of 2018. In November 2018, I published my Survival story of the same name.

I also wrote a paranormal novel Midnight .I want people to read and know about my struggles, how I have faced the cruel situations in my life, and create awareness about VHL.

Also writing for Times of India digital spreading awareness, positivity and hope without honorarium…

The unusual birth of an eye-catching child of fond parents after a miscarriage and the following embryo getting problems while in the womb, were lost in the thought that behind the outer shell never thinking there might lurk some sickness never known to humanity and the ill-fated, ill-starred child would have to endure the worst in all walks of life and face countless challenges.

I was a precocious little girl. I started walking and speaking fluently at the age of nine months. The grim humour was a disease that was lurking inside with considerable firmness to follow me through each doom and see my reaction, that if I turn a victim or a warrior.

Symptoms started at the age of 3 Then ultimately I got a surgical resection at the age of 12.

The next surgery was within a year and two labs had disputes over the biopsy of the excised tissue and one was sure it's cancer the other held onto their views that it was benign.

One night worried Mum called the doctor crying over the phone but he assured her that at a tender age instead of chemotherapy or radiation he had totally scorched the area so that there can be no growth but my parents weren't like me, who could understand science, ask questions and being laymen they accepted the explanation. Yet, I knew my father held a fast for me for a month and after returning from the office he used to eat little.

I grew up suffering all the time from a variety of symptoms and fatal diseases.After several misdiagnoses and diagnostic dilemmas in 2008, I was diagnosed with a very rare disease hardly known in India, called VHL or von Hippel Lindau during my landmark liver transplant. I can still recall the faces of the radiologists checking my tumor-studded liver with their probes and looking at my file with a weird name “VHL” with vacant faces and regarding me quizzically. Yes, the liver transplant was a life and death affair and we had no money to get the liver transplant done which was a whopping> 30 lakhs!

For my liver transplant doctors and endocrinologist, you have been neglecting my problems for long. A rare genetic cancer patient has a valuable life and the right to live as much as the pandemic stricken ones.

 My pancreatic cysts are causing problems and I can't sleep with stomach ache and bloating and diarrhea. Taking Creon symptoms are getting better. But my father paid the liver transplant surgeon and hepatologist after liver transplant my life time fees.

 You are looting me now without listening to my problems disconnecting calls. The worst money hungry doctor. I have gone to the High Court for my serious condition of leptomeningeal hemangioblastoma in which the most popular cause of death is respiratory failure due to pontomedullary compression and cervical compression. Now these pancreatic problems have made my life hell. 

We have problems as emails are not replied, calls are disconnected because I don't have money to pay.

 This is abominable. I have the right to live according to article 21.  You gotta attend my pancreatic problems. I am at Death's door and I have nothing to lose and I am fearless as always and angry. I have a chance of pheo para I told you but never has plasma metanephrine tested. I will never beg to attend my diseases but I will get my right for ignoring a rare genetic cancer patient.

Your Hipocratic oath has mutated. 

I swear by the Ministry who makes the ultimate decision. There's no heath and all-heal incision without the crispy banknotes, by Lord God Kubera, Goddess Laxmi also that according to my ability and judgment, I will keep this oath and my profession- to reckon him who taught me this art to butter my bread, and not to share my knowledge with any sufferer never relieve his necessities unless the required sum determined by me is wholly paid. I will never look upon every patient of mine on the same footing as my brothers if only they are rich beyond measure and compensate for my toil. I will never remember to treat rare diseases with fatalities and cancerous growth because the sick human may affect the person's family's economic stability. I will not abstain from my voluntary act of mischief and ignoring their symptoms, will treat them with dissociative drugs dismissing the symptoms as untrue or psychological making them repellently fat-like, Mr. Pyecraft with my expert craft. With a serious obesity problem I will have more to deal with and riches will flow in .  I will never answer all the questions so that they come to me over and over again and pay my hefty fee . If they wish to learn it without fee or qualification I can never let them know or impart my knowledge about their syndromes because a specialist knows the best and has the best brain.The special art of buttering the bread by the law of medicine as taught by my teachers no one should know. I will not follow every systematic plan to improve the quality of life of my every sufferer. I will concentrate on the quantity of life I can treat and make them spend more money for bread and butter. I will check the wallet of the rare disease patient  then treat them not abstaining from whatever is deleterious and mischievous. If needed deadly medicines will be given along with counsel taking their written permission to avoid legal issues. I will not pass my life with purity and holiness that way  I shall gain trifle. I will push patients with multiple problems to other practitioners so that we can earn together. Whatever patients I treat will not entirely benefit the sick but my own wallet. Whatever connection with my professional practice or not in connection with it, I see or hear life only in quantities. It will be my lucky stars when a disease starts exponentially increasing. I will let my phone ring for those small numbers. I shall put on hold all other activities and try to tackle them even if it is not my speciality. Nothing will matter to me as quality adjusted in life years but quality is quantifiable! While I continue to keep this oath unviolated, may it be granted to me to enjoy life and practice my remarkable art , admired and deeply respected by all men, in all times! The idea of taking the cost of a surgery/ medical procedure/ treatment by medicines after calculating  not just how many years life it saves, but what the quality of the quantity of life is. But should I trespass and violate this revered oath may I turn impoverished.

I'd like to remind you " This is what they say:

Secure your own mask before helping others.

And i think of us, all the people, and the masks we wear, the masks we hide behind and the masks that reveal.

I imagine people pretending to be what they truly are, and discovering that other people are so much more and so much less than they imagined themselves to be or present themselves as. And then, I think about the need to help others, and how we mask ourselves to do it, and how unmasking makes us vulnerable...

We are all wearing masks. That is what makes us interesting. ~ Neil Gaiman

Indeed all of you are wearing masks. Sometimes to protect for good reason and sometimes just to hide the brute inside you. Some of your masks are black,some are white

Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, unless I to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine.

Indeed I studied Science and was a topper in English and Biology in my ICSE.

Few patients know better about their rare diseases than doctors

After completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?

After my father passed away Poonam Gupta, student of Dr AC Ammini got in touch with me for research purposes.

I got an email from AIIMS.

Hi

I am Poonam Gupta Registered PhD Student under Dr. M.L Khurana & Dr. A.C Ammini ( 9868397600) at AIIMS. I need only one Blood Sample of genetic Testing which will be done free of cost.

Then,

"Hi, Payel. I have found a mutation in VHL gene from the DNA extracted from your blood. We have to further confirm the mutation by a different process & it will take a month because the enzyme used for that analysis is not available in India & we have to order that from Sigma, USA. It will be great if you can send me the sample of your brother & mother then it will be very easy to confirm the mutation."

Next time

"You are suffering from VHL Syndrome that has been confirmed from your genetic testing of VHL gene.

You may need the following test to be done each year.

1. MRI Whole body

2.PET-Scan

3. Plasma/Urinary Metanephrines

4. routine analysis of blood chemistry

5. Regular chart of B.P"

I have a rare disease called VHL or Von-Hippel Lindau--this is a cancer-suppressing gene and those people who have VHL disease have a mutation, turning you into a tumor producing factory.

I don't think I have to explain mutation because the virus causing the pandemic is also composed of genetic material and it is mutating constantly.

In my case, blood-filled tumors form in up to 10 organs of the body.

It !

Vhl is a lifelong genetic condition characterized by blood vessel tumours in upto 10 areas of the body. These tumours can be benign or cancerous. 

characterized by the formation of tumors and fluid-filled sacs (cysts) in many different parts of the body. Tumors may be either noncancerous or cancerous and most frequently appear during young adulthood, I got my first symptoms when I was 3 years old.however, the signs and symptoms of von Hippel-Lindau syndrome can occur throughout life.

Symptoms of von Hippel-Lindau (VHL) disease vary among patients and depend on the size and location of tumors.

Tumors called hemangioblastomas are characteristic of von Hippel-Lindau syndrome. These growths are made of newly formed blood vessels. Although they are typically noncancerous yet they can cause serious or life-threatening complications. Hemangioblastomas that develop in the brain and spinal cord can cause headaches, vomiting, weakness, and a loss of muscle coordination (ataxia). Hemangioblastomas can also occur in the light-sensitive tissue that lines the back of the eye (the retina). These tumors, which are also called retinal angiomas, may cause vision loss.

People with von Hippel-Lindau syndrome commonly develop cysts in the kidneys, pancreas, and genital tract. They are also at an increased risk of developing kidney cancer and pancreatic cancer called a pancreatic neuroendocrine tumor.

Von Hippel-Lindau syndrome is associated with a type of tumor called a pheochromocytoma, which most commonly occurs in the adrenal glands (small hormone-producing glands located on top of each kidney). 

Pheochromocytomas affect the adrenal glands, which are small hormone-producing glands located on top of each kidney. These tumors often cause no symptoms, but in some cases they can produce an excess of hormones that cause dangerously high blood pressure.They  are usually non cancerous. They may cause no symptoms, but in some cases they are associated with headaches, excess sweating, and the dangerously high blood pressure that may not respond to medication. Pheochromocytomas are particularly dangerous in times of stress or trauma, such as when undergoing surgery .

About 10 percent of people with von Hippel-Lindau syndrome develop endolymphatic sac tumors, which are noncancerous tumors in the inner ear. These growths can cause hearing loss in one or both ears, as well as ringing in the ears (tinnitus) and problems with balance. Without treatment, these tumors can cause sudden profound deafness.

Noncancerous tumors may also develop in the liver and lungs in people with von Hippel-Lindau syndrome. These tumors do not appear to cause any signs or symptoms.

Because of the potential morbidity associated with resection of multiple craniospinal haemangioblastomas in von Hippel-Lindau disease, stereotactic radiation therapy has been used instead. Small haemangioblastomas (<3 cm diameter), and those not associated with cysts might respond safely to radiation therapy.However, studies with longer assessment and more patients than those done so far, are needed to establish effectiveness and potential long-term effects of this treatment.

All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.

The complexity of their existence, the trials of maladies forced me to struggle to live.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

VHL is a tumour suppressor protein that is localised in the nucleus or cytoplasm, the extent to which being dependent on cell density.

The hypoxia- inducible transcription factors have also been shown to play a crucial role in tumor promotion in other cancers including breast, brain, colon, gastric, lung, skin, ovarian, prostrate, renal, pancreatic. Increased levels of growth factors result in angiogenesis.

VHL is the key to know how tumours grow and how potential therapies can inhibit angiogenesis.

It may sound complicated, but having a VHL diagnosis shouldn’t consume a patient’s life. In fact, monitoring through routine screenings is one of the most important components of care for patients with the inherited condition, which puts them at an increased risk for developing tumors.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

I, who swam the seas with vigor, without any complaint, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge I got to know more about my diseases.

Valuable, vascularised, happening, hopeful, lifetime of learning and living with vHL or von-Hippel lindau

Even if it may reach the crescendo

 

Her life was surprisingly spooky

Wracked with an unheard ailment of tumor

She lives not just exists the spook humor

A lifelong genetic condition 

Well, the ailment can't stop her aspirations 

When extra vessels forming into tumors 

If medical men  tear out the tumor

She gets irradiated 

Its later, never sooner

She will not be incapacitated 

It  shows that God has a sense of humor

And the light that shines like a sky littered with stars  is not a star, it's  just a tumor

In up to ten  areas wracking  the body

Instead of slow decay took a decision to study

 With pain blythely bent

Reading ceaselessly extremely content, 

She knows more about her diagnosed syndrome

Reading and writing comfortable at home

Musing I'm sick, it's been known for long

Happy Hypoxia

With stamina

Yet I am strong 

With a genetic cancer

No one will drink my pain

Because from an impoverished they don't gain

I have the best answer 

For my treatment

Which happens so frequent

 https://milaap.org/fundraisers/support-payel-bhattacharya-1

VHL Warrior Princess

  I am known as 'Warrior Princess' because I have chosen to fight like a seasoned warrior the whole journey to the very end. I was officially named Payel Bhattacharya but Warrior Princess stuck with many.

Today you are you,

That is truer than true,

There's no one alive who is you-er than you.

After several misdiagnoses and diagnostic dilemmas in 2008, I was diagnosed with a very rare disease hardly known in India, called VHL or von Hippel Lindau during my landmark liver transplant. I can still recall the faces of the radiologists checking my tumor-studded liver with their probes and looking at my file with a weird name “VHL” with vacant faces and regarding me quizzically. Yes, the liver transplant was a life and death affair and we had no money to get the liver transplant done which was a whopping> 30 lakhs! 

Many doubted why I needed a liver transplant? In the beginning, it was a clinical diagnosis from the brain tumor then Pancreatic cysts, and multiple hemangioblastomas in the liver. Liver transplantation is an important treatment option for selected patients with non-resectable multiple tumors.

I had a liver transplant owing to several tumors in the liver which could not be taken out individually causing excruciating pain due to frequent hemorrhages in 2008. The largest lesion caused splaying of the portal vein around the lesion. Hepatic veins were compressed and displaced by the segment 4&8 mass lesion. I had two episodes of bleeding in the hemangioblastomas and required hospitalization. There wasn't any awareness of rare disease back then, therefore I had to suffer from the pain of hemorrhages and fentanyl patches were prescribed for pain. The second time I had a hemorrhage I asked the attending doctor to either do the transplant or kill me by euthanasia. An X-ray of the intestines was done but thankfully blood had not spread to the intestines. The transplant which was delayed due to lack of money was preponed.

The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like any pathogen. Immunosuppressive treatment begins during the surgery and continues throughout the patient's life. Regular blood tests and other maintenance strategies by which medicines at specific doses are adjusted periodically by constant monitoring to prolong the transplant recipient's life and prevent acute or chronic rejections of the graft.

All immunosuppressants leave the patient more susceptible to infections and less able to fight them off.

Soon after discharge I got viral infection varicella and was treated with Zovirax.

I am an MDR- TB survivor with pulmonary, lymph, and bone involvement.

We are poor and abandoned and always have to think about the next day's food and medicines. But I was approached by AIIMS New Delhi to take part in a research project primarily for pheo and para. I readily accepted because I don't have money for any genetic testing.

The first email came

"Hi, Payel. I have found a mutation in VHL gene from the DNA extracted from your blood. We have to further confirm the mutation by a different process & it will take a month because the enzyme used for that analysis is not available in India & we have to order that from Sigma, USA. It will be great if you can send me the sample of your brother & mother then it will be very easy to confirm the mutation."

Next time 

"You are suffering from VHL Syndrome that has been confirmed from your genetic testing of VHL gene.

You may need the following test to be done each year.

1. MRI Whole body

2.PET-Scan

3. Plasma/Urinary Metanephrines

4. routine analysis of blood chemistry

5. Regular chart of B.P"

I was advised by the doctor to get a cyberknife done before they grow and put pressure on the brain. I got it done accordingly with the help of a well-wisher but the MRI after 6 months showed leptomeningeal hemangioblastomas.

Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analyzed is small. The most common cause of death was respiratory failure due to pontomedullary or cervical cord compression.

A 68Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR 

(Somatostatin Receptor)confirmed that the floating lights in the brain are hemangioblastomas.

I get stereotactic radio-surgery/radiation therapy before the growing tumors start putting pressure on the brain and become symptomatic.

 I have lost vision of my right eye for not being able to avail radiation therapy at the right time of the optico-hypothalamic tumor because of financial reasons and also because I was diagnosed with an RCC at the same time. 

I have Supraventricular tachycardia since time immemorial. Hypertension was regulated with few common brand medicines. But during a surgery, I had terribly high blood pressure. Regular medicines didn't work. The cardiologist prescribed another unusual medicine.

In 2019 I developed bilateral trigeminal neuralgia and got a cyberknife for it on 17/3/2020. In between, I got radiation therapy for two more growing tumors and after MRI it showed chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.

 We returned after Trigeminal Neuralgia cyberknife to our city on 18/3/2020 and from the 24th lockdown commenced. But the left side remains untreated. Yet due to the pandemic, I and Mum went into voluntary isolation and haven't been out since nor do we let anyone enter our rented flat.

Since then several problems started,

• Difficulty speaking or loss of voice

• Pain in the tongue

• Voice becomes hoarse 

• Trouble swallowing food and medicines, Here I'd like to state The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII). 

It should be emphasized that the structures involved in the swallowing process are pairs, both anatomically and/or functionally, due to the dual-side innervation. 

Anatomically unique, the tongue, palate, pharynx, and larynx are functional pairs, each side having independent innervation.

•    I have to crush every medicine.

• For about the past month after almost every meal I run to the loo. I am confused why I have fatty stool or watery stool. The cysts in the pancreas were noted down in the liver transplant Summary but the recent PET CT done without intravenous contrast showed nothing save mild FDG avidity in the lungs.

• Trouble drinking liquids

• Pain in the ear and behind it

• Hear odd wheezing sound sometimes which feels like listening to my own breathing. There are three types of important respiratory nerves:

The phrenic nerves: The nerves that stimulate the activity of the diaphragm. They are composed of two nerves, the right and left phrenic nerve, which passes through the right and left side of the heart respectively. They are autonomic nerves.

The vagus nerve: Innervates the diaphragm as well as movements in the larynx and pharynx. It also provides parasympathetic stimulation for the heart and the digestive system. It is a major autonomic nerve.

The posterior thoracic nerves: These nerves stimulate the intercostal muscles located around the pleura. They are considered to be part of a larger group of intercostal nerves that stimulate regions across the thorax and abdomen. They are somatic nerves.

These three types of nerves continue the signal of the ascending respiratory pathway from the spinal cord to stimulate the muscles that perform the movements needed for respiration.

Damage to any of these three respiratory nerves can cause severe problems, such as diaphragm paralysis if the phrenic nerves are damaged. Less severe damage can irritate the phrenic or vagus nerves, which can result in hiccups (which I do have in excess)

• Unusual heart rate (I already take Embetta XR 50 a beta-blocker crushed).
• Abnormal blood pressure and pulse.

• Problem with gait

• Touching my legs makes me fall, can't stand for a long fall anyway.

• Nausea or vomiting

• Abdominal bloating 

• A metallic sound in my ear.
• Problem with gait, walking in a zigzag way I banged my forehead on the bookshelf.

They are increasing every day and more symptoms are getting added like the back of the neck and head pain with burning in the right temple.

Recently a virtual, video consultation with the doctor resulted in a prescription of Creon( enzymes) and probiotics.

Now my tummy feels better and I don't need to run to the loo after every meal and no watery stool.

There are myriad challenges of having a malady. If you have the most unusual diseases known to humankind it becomes a fateful condition where you can't afford to be ignorant and continue being tired if you desire quality and extension of your life.

Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, you have to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine because in our country most doctors aren't familiar with the mode of treatment and government policy is to support only children with lysosomal storage disorder. There's an argument going on in the Parliament about treating children with skin disease. They understand only problems with intellectual and physical development or deformity.

My father left us homeless and penniless. I don't get treatment or monthly blood chemistry/ radiological tests done in time because I can't get money. 

I beg from Facebook acquaintances and some say " will send you in a few days" but that never happens.

 National policy for rare diseases gently and politely smashed hopes for continuing my treatment by choosing a handful of diseases by foretelling and quantifying the quality of human life. Not considering what I have done despite several symptoms of vHL. I am a warrior, not a victim.

Government don't understand when a medicine is socialized, then you have true health care. When everyone's treatment is the same regardless of socioeconomic position or age there will be justice. Otherwise, there will always be a tormenting distress about someone somewhere else getting what you are not.

This newly minted policy is an irony that the government is taking care of a handful of citizens. 

This is not helping, but swamping those who are rare and need to fight daily for life, not just recuperate but also keep thinking about how to live, how to arrange food, medicines, and a roof above the head, and how to be relatively healthy. Tragically, the government thinks the "life and health of a citizen an unfair burden".

The tumors scattered inside my brain sparkling like a star punched sky yet the "little grey cells" had worked out an exceptional detective book during lancinating pain with one-eyed vision and typing with the index finger of the right hand because after the had got palsy and was treated with high-dose steroids(Prednisolone) but the hand doesn't work like before and the left had after recovering from paralysis during the craniotomy didn't get back the sense of touch and both halves of brain lost coordination and refuse to work together. 

Also writing for Times of India digital spreading awareness, positivity, and hope without honorarium…

I consulted with Dr. Russell Lonser emailing my details with the last MRI of the brain for my leptomeningeal hemangioblastomas and the symptoms.

His reply

"I have encountered the problem that you describe below. We have used craniospinal radiation in some cases and/or adjuvant chemotherapy for leptomeningeal hemangioblatomatosis. Unfortunately, I can not open your film files. Russ"

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumor but also the healthy tissue that the beam encounters on its way towards the tumor and beyond the tumor. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumor travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumor.

I have appealed to the government to grant money for my treatment.

I was once a child because I am not Benjamin Button. I grew up suffering all the time from a variety of symptoms and fatal diseases. Yet I have uniquely become a baby, not crying or a whimpering one but a gaily smiling one sometimes speaking in a mignon voice, sometimes a hoarse voice, and sometimes voice doesn't come out. Eating crushed and smashed food, sometimes baby food because I can't swallow and spew out food with a soft gurgling sound. Also, burp as I can't digest food.

My life depends on if they stick to their decision about only children with lysosomal storage disorder or someone who fought cancer and several other problems but never gave up. 

I have a right to live, this is my fundamental right and provide "EQUALITY of status and of opportunity;" from the preamble of the constitution which has vanished into thin air.

Here healthcare is a profession and treatment is merchandise and life is commodity. They are quantifying life that can be saved.

I am a writer in Times of India digital but I have been stopped writing against the government. 

No Justice only Tyranny prevails. My question to the government is those rare disease patient who you think are burden to the society, a bad tooth to be pulled out "Why not make a gas chamber for the citizens to whom you deny healthcare and right to live?"

Original Hippocratic oath as  taken by hypocrites has mutated over the time to:

satyameva jayate nānṛtaṃ satyena panthā vitato devayānaḥ yenākramantyṛṣayo hyāptakāmā yatra tat satyasya paramaṃ nidhānam

In English Translation,

TRUTH alone triumphs; not falsehood. Through truth the divine path is spread out by which the sages whose desires have been completely fulfilled, reach to where is that supreme treasure of Truth.

The Truth referred to is the Paramatma. For sages who speak the truth they proceed closer to attaining ‘Moksha’ or oneness with that supreme Brahman is its real meaning.

Perhaps the appealing truth  of life is that falsity is the winner. 

The oath of the ministry happens to be:

Well, then Coca-Cola, IAM, Being Human, Tata trusts, Hans Foundation etc should support life without delay. This would never happen because Director and ambassador of Coca-Cola was in school with me, Tata trusts vaguely denied in 2020, IAM helped me once but now according to them they only help children although government is helping pediatric diseases, Being Human is unreachable, Hans Foundation approved my cyber knife but then denied because cost was very high 5 lakhs in 2020.

Voluntary crowd-funding for treatment

Human beings are no longer humane and they don't work hand in hand now and if you ask twice get irritated. They love a lavish life and collecting money. Therefore crowdfunding is an outrageous thought and every platform, Milap, Ketto has their own charges unless you collect a large amount it's useless. The decayed society with affluence. Crowdfunding for 5 lakhs becomes difficult for cyber knife of Trigeminal Neuralgia and when someone donates from abroad gateway fee etc by RBI deducts most of the sum.

Et tu, Brute?

 

I think every life as rare

As  art misled with false compare,

The world beyond my window weep,

As the saviors are fast asleep

Fit, happy, content, untroubled, and willfully ignorant of many troubles that can befall humankind

Do I see fear wet thy eye?

Ah! if thou hale shalt have to die, 

Healthcare becomes the oldest profession

Showing no affection, awash with unkind notion

Us, unique broken sickly-weakly without money are forever denied

Greatest folly of mankind

Is ego, and pride

We are the bad tooth, burden of the nation

We are part of creation

 Coerced to say "Goodbye", fading away into termination.

But thy eternal summer shalt fade,

 As Death wand’rest in thy shade,

Thou shalt lose possession of that unfair fortune thou ow'est, 

Counting pieces of money

In thy counting-house

Thy days will not remain sunny

Will not remain funny 

Thou shalt heave a sigh

For things, thou can never buy

Hope, sleep, delight

 

Thou vaunting thy deeds of unfair which fairly doth excel;

With foul pride, black as hell, 

Will be known for thy ruthlessness

Devouring Time shalt blunt thou lion’s paws, 

Thou shalt vainly plead for agelessness

                 Consuming Time, shalt blunt thy teeth, 

The drooling jaws falling, hanging underneath

Time will smash them wholesale

Thy tale would harshly end without detail

All beings rare

 Under Heaven's air

Whom thou falsely compare

Hast unparalleled courage, strength determination

Dedication to fight then reach the ultimate destination

Thou art tyrannous, proud and cruel;   

Demasked thy soul is filth and reek

Upon meeting Death's barren rage, eternal cold thou shalt squeak!

Thou thinkest thou got power even over death 

’Gainst death and all ignorant of thy animosity

Thy verbal virtuosity,

That's a display of gloat and glory!

So, till the Judgement that yourself derive,

Thy mind acts with such velocity,

Overloaded by pomposity,

As Death's dateless time shalt approach 

Which thou cannot choose 

But weep to have that which thou fear to lose.

Whatever happened to the fairness and equality

Thy heartless hostility, 

Oft thou played with the rare

Without care

Sinking them, oppressing, making melancholy

While you sit in all thy glory

Try to make a sad story

Precious thinketh "why do they despise?"

Awarded with pain but heart so deep and wide

Runn’st after that which flies from thee

Why do thou turn thy back on me?

Mayest my spirit and will

Conquer the Devil

Mother is my physician 

Nurseth the condition,     

Feeding me that which doth preserve the ill

We wonder where hast judgment fled

As we climb uphill

Under Heaven's guide

Help me, cried I, 

"My arms are always open for you wide." words came from above the night sky

As Victor of Death Imperishable and sublime

Help me to climb

With wit warmth and vitality

Life is a vast and big cliff and climbing is enjoyable. 

Once you slip at a precarious moment, slide and almost fall off it is unavoidable 

The poor, needy, dependent.

Moving, tottering more rich in hope

Enjoying sweet nature's love beyond the common scope

Without a moan gets restored.

The world standing on one side

With a wall of lust high and wide

That doesn't allow the sight over the other side.

Not being chary

Feeling wary

As lingering pain and Death haste

Says, " Once born thou must die, so purify, cleanse thy sin 

Because playing tyrant, unfair thou fairly transcend the limit"

Being a thing so timid

Losing courage, growing weak

All the depressed shriek

"Et tu, Brute?"

--