My phenomenal life

 The variety known as miserable

Care about themselves think about their own troubles

Seen from their perspective

A little bit of hype can be effective

But what is their objective?

The miserable variety is not half so happy in heaven

Went envying me

Jealous of independence and confidence

"You die right now' for nobody cares for thee

Yes, I did see, yet didn't you see,

I felt it's so cruel

Asking death from one who can only eat gruel

My conscious clairvoyance and precognition

Could tell before the wedlock, the union

She wants it to be her dominion

It was sometime back

I never shared those details

I hid some dirty tales

When she asked me

Grinning with moving  eyes backward, forwards round

She placidly said,

"Every penny he earns

On you, he burns"

From childhood, I have not been as others were

I never enjoyed hop-skip-jump that's for sure,

Being sick girl lookin' for the doctor's cure

In my adolescence couldn't satisfy my

Desire to fly

Interests hobbies passions weird desires

Do you ever wonder just what God requires?

Given just one life to face things where everyone conspires

Put me in a life of big mess

As I grew up amidst bawling and screaming

Without any play-fellow thinking

Terribly lonely I am need some solicitude against the deluge of solitude

Paternal solicitude was quite indefatigable

Father wasn't tough and able

With faith heart' blockage

Gasping for air

With whole world's a-watchin'

Peeking out and stare

His efforts nobody in the world could compare

Gave her daughter a new lease of life

When the commander, solver of every problem died

And passed away

He deserved a blast away

Mum never got tired of life

Took charge of my strife

Running to every apothecary

Without repository

Never weary

Doing rounds

Collected funds

You are the only one I admire

Our time together with my super Mum

My soul feels on fire

You are my lodestar taught me how to overcome

With a heart of a sponge sucking up pain, emotions, and feelings 

Being mermaid Princess

From childhood hour

Life is not a fetid melodrama

My mind never knew trauma

No dour infliction

A joust with a flick of an upped moment

Memento mori

Be wary

Like a real Princess

I  became a Warrior Princess

Without tears suffering

I suffered, suffered acutely

Without fear bore senseless, pointless suffering mutely

From every depth of good and ill

The mystery binds me still

There's a sort of worm

The most hopeful life they deform

Gnawing holes throughout them

Their vileness as through ev'ry moment they go

It merits naught they know

 

From the thunder and the storm

The cloud that took from

Acting like a goddess 

Disguised and loving wise

To the brainless spouse

My spark inside tried to douse

Spark became a flame

Because I have just one life

Faced abandonment, desertion continual  pain

My sources of survival were taken

Sorrow, grief never awaken

In loneliness poverty solitude

When darkness intrude

My mantra made hope everyday renewed

Hope didn't naively deny my problem

Truth becomes beautiful and terrible

I have just been whacked by the sturdy bloodsucker ghoul

When the  imp came out chilling and killing me

It was far from love

God saw from heaven above

It was demon of the soul

" I'm afraid death takes its toll

You have no control.

My death won't save my bruvver

The wife is not much of a liver

Trying to make my body moan

Adding extra ailment 

Was your enthralment

Of impalement

God's laughing in Heaven

To see my responses so good;

The Sailing Seven sage and saint

Saw the efforts to uproot

A presumed bad tooth

 With off-beat ailment

The attempted impalement

With sparing wit no learning 

If you want to know why

She wanted me to die

The best reasons I'll supply

It's not the same bruvver defending

" She's anxious of my health"

Otherwise, a healthy man pretending

Justified bringing my ending

My  ‘coochie coochie coo’  bruvver is lost

His soul was so betossed

Transmuted as the bridge he crossed

Can only count the cost;

Against the conflagration of my life, it was our childhood journey very own "Chotobela"

It was our very own game " khela"

We ventured too far into the game of life abandoned by all

Never shuddering drinking the silence of aloneness

Childhood journey to adolescence

Which often seemed a total nonsense

He who could see ghosts in books of Stephen King he read them very zesty

Saw wisps of fog as it turned dark and misty

Was filled with tears, fear, and grief

When some shape glanced at him through the mirror brief

Hid the book behind a flower pot on the rooftop terrace

Mum found it and brought it back to the shelf with grace

At night we heard him banging his teeth with disbelief

He beheld shapes and heard creaks in his dream groaning in earnest

We laughed in jest

In his  serious determination like a mighty hero flailing his arms implying muddled brain assures 

In my precarious situation

" I am always there"

But now he's nowhere near

Says  can't keep his promise to Father

Who was less and less unwilling

To expend his saving

For studies for cinematography

His passions for photography

Mum convinced him 

To let him study lights low and dim

He will  earn care and not let hard times come again

Now he enjoys life's pleasures as Mum count its many tears

While we all sorrow with the poor.

As he says can't keep his promise to Father anymore

Will look after in next life

After marrying his wife

Refused to be a part of our strife.

Uses foul and filthy words

He has broken all ties and cords

Hope relentlessly believing in the existence

Not a trivial death

Will not leave me gasping bring back my breath

Deal with the soul of evil

Aye, banish devil's from my life

Teach them how to deal with aling one

 Be a righteous son

Not just be "sorry"

Because things can't be undone.

Being a beast and vermin

That to think of sets us squirmin',

 Stung piercing my flesh 

Spraying droplets was allowed

In pandemic three is a crowd

Life is too short you learn more

Relationship is not strong enough

I do believe I've had enough

No need to bear the rough

 No need for approval to enjoy the sun

From those who carry a gun

Mask

 Secure your mask before helping others

Confer, donate, to the impoverished if  you'd druthers

It's worth trying to think more about how you can help the truly needy

Who hast  zeal so speedy,

To those who suffer wrong

Left to their own devices are never weak but always strong

If I you'd druthers

Faces beshrouded 'neath a mask;

I can't  shun curiosity, and I wear a grinning mask."

Through life's hard task

 I did not ask

 Try finding out the man behind the mask

Because masks that hide, masks that reveal is a disagreeable, dreadful task

The whole world acting out a farce

All  turning into a farce

Promis'd which dwindled to a farce?

In the darkness sunlight became sparse

Spitting out filthy words

Under the influence of a silk purse

To protect you an' defend you

From cruelty, apathy, and wrong,

Someone to open each and every door,

I knocked loudly at each door 

When it's time someone will open the door

Hard times, hard times, come again no more.

I have been through nightmares before

The universe always responded when I needed your help,

Leading up to the right door 

Pretending to be what they truly are

You don't need to look too far

I gonna let ev'rybody see

Just what you are

Shining like a morning star

Let all discover so much less you are

Leaving us worse off than all think we are

Underneath the mask, some are more

Beautiful results will show

Like never before

Some are less 

As they profess

Than they imagine themselves to present

With the rudest bent

The thought, the mind, and the intent

Where there's a need to help

Unmasking, letting down the guard 

Makes you feel helpless, vulnerable,

Discoverable, uncomfortable

I am hearin' words unutterable

For every unjustest act

You can't go into flashback

Shunning duty

suddenly stop seeming interesting

Trouble is fibbing lead to death and trouble is never choosy

Becoming groovy

Is confusing me

Wicked tricks they put upon me

Myself said unto me:

"Look to thyself,

Take care of thyself,

For nobody cares for thee."

Everything suddenly stops seeming interesting

"For the roads are unending, 

And there is no place in my mind."

Kindness and support required for rare disease vHL and Covid 19

 

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I was diagnosed with a rare disease von Hippel-Lindau or VHL. It is a genetic form of cancer. VHL patients battle a series of tumours throughout their life. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine tumours.

Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) is extremely rare. Between 1902 and 2013, approximately 132 cases were reported.

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 is respiratory failure due to pontomedullary or cervical cord compression.

Early detection and aggressive management can enhance the prognosis of patients with CNS leptomeningeal dissemination of HBs. Imaging surveillance, by contrast-enhanced spinal or brain MRI, should be considered in patients with a large amount of tumor bleeding during initial surgery.

After 2017 I also have a 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.

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 tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. 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 tumour 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 tumour.

Not to worsen the condition further, I sought the help of Dr Jalali

I have no income. I write for Times of India digital without honorarium and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses. Friends donate who think I should live more and write more . I have a profound knowledge in medical science which Dr Guleria, Dr Arvinder Singh Soin, Dr Sanjiv Saigal, Dr Ishita Sen acknowledges. 

Currently I am suffering from a serious multiple brain tumors which has been reported globally from 1902-2013 only 132 cases and I am the first one in India. The small tumors floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optico-hypothalamic nerve which made me blind with right eye even after radiation therapy. The next time it became bilateral trigeminal nerve. I got a cyberknife on 17/3/2020 but the left nerve is not done, hence it feels like someone is holding a bare electric cable against my cheeks or any part of the face. 

After this cyberknife I got a swallowing problem. 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.

The mutation of the gene is confirmed in an AIIMS research and I am supposed to get neuroendocrine tumours but there were multiple cysts in pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 3 days. My immunosuppressants for liver transplant is delivered by Panacea Biotech.

 I am supposed to get neuroendocrine tumours but there were multiple cysts in pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 3 days. My immunosuppressants for liver transplant is delivered by Panacea Biotech. Currently I can't stand for long, gait problems and electricity flows through the right leg. Also my bladder and bowel control is lost. All these can be to some extent treated with proton therapy and chemotherapy.

 I called my brother to help me look after Mum because at 68 she developed mild Covid from the society being a hotspot and by collecting the deliveries of medicines or food kept in the bag hanging on the door. Perhaps some delivery men might be Covid positive and she collected stuff after an hour but aSARS-CoV-2 remained viable in aerosols throughout the duration of in experiments (3 hours), with a reduction in infectious titer from 103.5 to 102.7 TCID50 per litre of air. This reduction was similar to that observed with SARS-CoV-1, from 104.3 to 103.5 TCID50 per millilitre. 

Because from 18/3/2020 we are under voluntary isolation and just Mum collects the deliveries hanging on the bag outside the door after the person has gone for over an hour.

CT count or cyclic threshold is inversely proportional to the viral load..more than 30 considered very low infectivity..less than 20 high infectivity..20 - 30 moderate infection.

Said Dr. Ishita B Sen

Nuclear Medicine

Director & Head

Dr. Ishita B Sen is a Nuclear Medicine Physician with 20 years experience, having worked in various hospitals across Delhi – NCR., She takes special interest in Nuclear Oncology and Radionuclide Therapy Sende. She also treats Covid

On 4th May while I was taking my breakfast and medicines without a mask Mansi Aggarwal barged in the closed doors of my room screaming I ought to die right now because who will account for my brother if he falls ill? And charged towards me with great force. She had Covid with a high viral load.

Doctors have also strongly suggested that solely relying on testing as a safeguard can make people 'lax' and take other safety measures, such as mask-wearing and social distancing lightly, which could be the two biggest factors which can spike up infections. Remember, the tests are a preventive measure and only effective, as long as you put in place other security measures.

Brother's spouse out of apathy barged in the closed doors of my room screaming I ought to die right now because who will account for my brother if he falls ill? And charged towards me with great force. Saying that she bashed me while I was eating breakfast and without a mask.

Ma had symptoms before 28th April and from 28th she started Augmentin Duo 625 then Dr Ishita Sen prescribed Azythromycin because of headache and congested nose. With my immune system turned off I didn't get any symptoms. Only after Madam Mansi hit me and said without a mask I should die right now within 3 days I got high 

D dimer and CRP but no antibody. Antigen couldn't be tested because it might hurt my throat. Bilateral trigeminal nerve, vagus, Hypoglossal, Glossopharyngeal, facial, auditory are all compressed by tumours.

She was completely aware of my life threatening diseases and immunocompromised state due to a liver transplant, so she wanted to infect me so that I would definitely die. 

Within 3 days I developed symptoms of Covid.

• Even though RT-PCR is the gold standard, we have known from Day 1 that there’s a 30 percent chance of it to be inaccurate. Moreover, when the testing kits are developed, the scientists pick up those parts of virus which are least prone to mutate, therefore this could be a reason behind the false-negatives.
•  The second reason for this could be that the viral load in your body is so less that its not getting detected in the RT-PCR test, as per experts.
• The sample collection, transportation as well as the overburden of the cases, wherein the labs are not able to complete the analysis of the sample, plays a major role in the quality of tests, Dr Mahajan explained.

Next, repeat your RT-PCR test in 2-3 days, and take advise of your doctor to get a CT scan, says Dr Ray.

Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.

The RT-PCR test was not done in my case because I have 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). 

"Ur antibody level is low..which can occur 

1.early in disease

 2.low viraemia 

3.immunocompromised state"

Said Dr. Ishita B Sen

Nuclear Medicine

Director & Head

Dr. Ishita B Sen is a Nuclear Medicine Physician

Ma had symptoms before 28th April and from 28th she started Augmentin Duo 625 then Dr Ishita Sen prescribed Azythromycin because of headache and congested nose. Even with my immune system turned off I didn't get any symptoms.

 Only after Madam Mansi hit me and said without a mask I should die right now within 3 days I got high D dimer and CRP but no antibody. Antigen couldn't be tested as   both Naso and Oropharyngeal samples collected. If have problem in nasopharyngeal then it can be done in Oropharyngeal sample and it might hurt my throat.  Bilateral trigeminal nerve, vagus, Hypoglossal, Glossopharyngeal, facial, auditory are all compressed by tumours.

My mother is sitting and crying in front of the temple inside the house. Despite her precautions and maintaining distance I got Covid and I am now on the verge of uncertainty. In 2008 I had a liver transplant because multiple tumours were displacing and compressing the vital vessels. My father gave me a new lease of life gasping for breath with 80% heart blocked and then passed away leaving us Homeless and penniless. We spent days in dire poverty where we never knew how to get food next day. 

May is VHL awareness month and I appeal to you that help me in need. 

After getting 15 surgeries I can't give up on living. With leptomeningeal hemangioblastomas and Covid with immune system turned off I am at a high risk but I love life and my mother. I don't want to leave so early.

 I don't worry. I am not just struggling, I am a warrior. Worrying is a full-time job, requiring a 24 hour work a day, every day, you worry when you wake up, while in work, when you eat, even while you dream. Instead of a worrier woe-man, I chose to be a Warrior Princess, yes that's who I am.

  

A Warrior princess I am, 

I wage wars with head held high, 

A warrior, never afraid of wounds, 

A Warrior dies dancing that’s who I am.

Princess and the Black Witch

There's a difference between frustration and determination

It's all in your mind

Seek pluck till you find

I am gonna look for hope till my eyes go blind

Leave every relations and friend behind

They slipped out of my mind

Because they are unkind

Is courage equal to desire?

It's as simple as fire

I take a furlough from the falser

Who isn't very kind

 Deep this truth impress'd my mind-

The heart benevolent and kind

In them with a generous mind 

In the whole humankind God I find

 

Whenever I find myself doubting how far to  go

Willpower and hope there you go!

God helps to make life like a river flow

I am never full of woe

I know I have far to go

The rattlesnake snuck in through with mean intentions 

With love and affection chained and paved hell with their mean expectations.

In a way that's too terrible to mention

"Tarry awhile," says Deadly Witch Slow;

With eyes down to my deathbed aglow

I tell my jester bruvver don't you stand o'er my grave

Shedding tears after killing me dead

It's unbelievable that the day would finally come

Everyone will play deaf and dumb

Expecting help and false peace to come 

Angry witch cursed me some

 

I have always been denied

But take a tip from the one who's tried

It's worth it even if you fail

Falling like a meteor forever blazing a trail

Mortal flesh 'ave sinned one sin for the pride

He defends with swagger his witch bride

Not thinking Princess could have died

There ain't no sin there ain't no virtue

It's stuff people do

Princess decides how far she has come

The insurmountable she has overcome

Better be a meteor falling forever

Let not be forgotten forever and ever,

Better to flame the darkness with her mother

Where roots of relationship are woven not strong

I will sing it loud and sing it strong

Let the echo but who cares people decide if I was right or wrong

Where a long arm stretched out to wring one neck

And put a rope around the other neck

Oh! What the heck!

Since God made Time and Death and every other thing

It's better to flame the darkness rather than cursing

Inspire others on living

Than to sit in darkness

Remembering everything she faced

Princess  sure ain't gonna  make 'em moments go  awaste

All battles she's won

That can never be undone

A furnace full of fears overcome

Life's statement of ugly vice

The lust of fame,

Terror and tyranny and shame.

Not being dumb or glum 

Didn't rattle her which she overcomes with a hum

Princess faced a firebox of hatred

Wrestling with Black witch

Laughing at misfortune's face

Umm who created bedlam

Spitting out venom

Thinking about the Black witch screams

Her unpleasant way of flying off the handle

To steal and extinguish Princess' candle

Meteor shower

In the night

Blazing their light

Make it too hot to handle

With the confidence, skills and power

Fix'd she stands, by her own might

Hardened by life to face a witch's evil power

There was one a bug who was nuts

Living in imagination never knew

 One day a gun will be stuck in his guts

Bug's belief in fairness

Hope from a family foul  wizards and witches

Who don't value life coveting riches

Happiness, squelched thus he shall topple in ruts

We are responsible for what we are

If we don't drift too far

And whatever we wish ourselves to be 

But if there's a selfsame repartee

"You look after thyself,

I look after myself,

The selfishness of everything will be."

We are endowed with the power to make ourselves

O think of it!  It's a wonder we can even feed ourselves.

What we are now is a result of past actions

Certainly whatever we wish to be can be produced by present actions

The ultimate conclusion is the logic of a fact

For every unjustest act

Blinding us as we retract

About this disease, we contract…

Future will be shaped by present actions

If you're lying, denying all of your actions

Divinity judges by your actions

Doesn't let you travel to flash back and undo your actions

Change what happens, inspect the fractions

Inactions and idleness will lead time drop in decay

But if you act the right way

The  sun beat down upon the steps of time to light the way