A man should fight till the end and so will I…
But I'm only human, weary of the battle…
Will my friends be still there?...
In my deepest and darkest despair....will they still care?
Will you assure me, you'll be there for me as before because the rains are still pouring…
I need you to help me....survive.
Will you help me as before, it's too late?
Sometimes I wonder what's the purpose of life after all the suffering I endured since my birth? Mum makes me realise I am chosen for this journey and I should survive and bring it to completion.
O' my progenitor giving birth to a zebra made her apple of the eye
First words she heard from medic's lips while putting
His finger on the baby " you are going to die"
He meant the death when the baby was 16 days old
Instead of heaving a sigh and wiping the eye,
Father uttered "You're too good to die, you are my Gold"
Love is so simple, quote a phrase,
" Why mustn't I try?
The zebra is my stardust falling from the sky"
The unusual birth of the eye-catching child of fond parents after a miscarriage and foetus getting problems while in the womb, were lost in the thought that behind the outer shell 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 my parents never thought of that.
Have you ever said, "I'm fine, very good when you weren't because most people don't understand?"
Since birth, all I can see is struggle even before I came to the planet. It's quite true people say "Prosperity gains friends, adversity tries them". I never had a friend and because no one would like to socialise or go out with a limping girl.
Being an unusual child. I never concerned myself with petty things, the trivia, the dregs in life.My tangential connections with friends and relatives left me isolated but growing up in the shadows of an extraordinary mother who helped to wipe out the bad memories and realise the beautiful, prettier side of life. Yes, never been able to complete my studies— and reading my collection of books at night, like that, under the quilt with the overheated reading lamp. Reading all those good lines while suffocating. It was magic.
It's worth it even if you fail, falling like a meteor forever blazing a trail. I always felt mesmerised when I heard the lines "Mutation is the key to our evolution. It has enabled us to evolve from a single-celled organism into the dominant species of the planet. The process is slow normally taking 1000 And 1000 of years. But every few hundred millennia evolution leaps forward"
I feel life is a joke. You never knew a mutant X -men was roaming around everyone but who am I? Wolverine? A failed experiment of evolution?
von Hippel-Lindau disease, or VHL disease, is one of more than 7,000 known inherited rare disorders. It is a disease caused by a mutation in the VHL gene, which normally prevents tumor growth. The mutation to this gene prevents it from working properly, resulting in both benign tumors and malignant tumors. The latter can spread and become metastatic.
In people with VHL, tumors may develop in up to ten different parts of the body. All of these tumors involve the abnormal growth of blood vessels. Most of these tumors are benign, meaning that they will not spread to nearby organs. However, VHL tumors in the kidneys, adrenals, and pancreas can grow to a stage where they become “malignant,” where the cancer can spread to other parts of the body. The VHL Active Surveillance patients and doctors to actively work together to prevent most of the worst effects of VHL. NET is a possibility.
Hence the growth of new blood vessels or angiogenesis is not so much a disease as a phenomenon, the result of a basic evolutionary compromise. As a body lives and grows, its cells are constantly dividing, copying their DNA — this vast genetic library — and bequeathing it to the daughter cells. They in turn pass it to their own progeny: copies of copies of copies. Along the way, errors inevitably occur. Most are random misprints.
Over the aeons, cells have developed complex mechanisms that identify and correct many of the glitches. But the process is not perfect, nor can it ever be. Mutations are the engine of evolution. Without them, we never would have evolved. The trade-off is that every so often a certain combination will give an individual cell too much power. It begins to evolve independently of the rest of the body. Like a new species thriving in an ecosystem. For that, there can be no easy fix.
I am not Benjamin Button with a rare ageing ailment that makes the baby born begin life as an old man and proceed to age backwards.
It's a ghastly joke of fate along with all the coexisting rare diseases the Creator forgot to add this one. If he had an alert mind he would have done so and I would have benefited from NATIONAL POLICY FOR RARE DISEASES, 2021 where only those diseases diagnosed as a baby or child are included and only those who look smart are denied but funny are accepted. I never had any delay in intellectual and physical development. I would have never been chosen because it's tough to realize "Everything is inside". 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 hand got palsy and was treated with high-dose steroids the hand doesn't work like before and the left had after recovering from paralysis 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 I could work out more books and encouraging posts for society if my compressed nerves are restored into functional mode.
NPRD is a game of charade. This newfangled policy doesn't seem fair.
"The Delhi High Court has asked the Central Government to look at the feasibility of fund collected from general public to the tune of Rs 63,28,72,125.48, pursuant to an order of Kerala High Court, to be utilised for the purpose of the Rare Diseases Fund set up under the National Policy for Rare Diseases, 2021. And I am one of the petitioners.
Next came
"The MRI report (films not provided) done on July 19 shows new lesions in bilateral temporal convexity, and a Cavernoma in left centrum semiovale (also new). The
reports of spine MRI do not show any significant intramedullary lesion(again no films provided). Whole body PET scan dotanoc report (no films) shows multiple
dotanoc avid enhancing nodular and plaque like lesions bilaterally in the brain.
Our policy is to discuss all films with our experts in nuclear medicine and radiology before giving any opinion. We do not rely on any outside report."
---Dr. SS Kale
I spoke to Dr Kale on his mobile phone from an ex-Aiims doctor who had briefly seen me.
He told me to speak to a pediatric genetician Dr Madhulika Kabra who hatched plans to not sponsoring without observing me, a nice sweet plan to kill an immunocompromised patient to reduce the number of the rare people. I like calling myself not just with rare disease but rare people who has rare thoughts.
Oh! Benjamin Button syndrome why did my Maker forget it?
Dr Kale said to me that he's not a part of the committee hence his opinion was sought which he provided. "We do not reply on outside report " demeans other hospitals I suppose.
Medical Documents can say I am a vHL patient not my looks. Putting my life in jeopardy in calling at Covid hotspot is not justice but blindness.
" Accordingly, may I request you to coordinate with petitioner's counsel from our side and intimate to him the above details so that she can make herself convenient to be physically present on the said date, time and venue for her examination by the experts. Furthermore, she should be advised to bring all her clinical case records (both old & recent) including diagnostic investigations and any other pertinent document in this regard which supports her illness." Was AIIM's reply
Dazzled by a weird reply my counsel explained
Petitioner and her immunocompromised condition, as also the motley of rare and life threatening conditions of with which she is battling, as also the SARS COVID 19 pandemic, it is unsafe for the Petitioner to commute to and make herself physically present before the said committee.
On the said last occasion, the Petitioner had made every effort to have placed before the Committee the medical history of her case, evidenced through the medical reports, doctor's opinions and other supporting paperwork, spanning nearly three decades. The Petitioner had further volunteered to be available for examination by way of video-conference. However despite making appearance (through counsel), and presenting all the relevant documents as pertaining to her medical history, the Committee declined the Petitioner's request for examination vide video conference and further miserably failed to make any cogent observations in favour of the Petitioner's case based off of the medical records submitted before it." The story is somehow I need to have a Benjamin Button mutation or be killed.
Meanwhile, you might wonder how did I get Covid being under voluntary isolation?
Experts 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.
SARS-CoV, which causes severe acute respiratory syndrome (SARS). The incubation period for SARS is usually 2 to 7 days trusted Source, but it can be up to 10 days in some people.
MERS-CoV, which causes Middle East respiratory syndrome (MERS). The incubation period for MERS-CoV is between 2 and 14 days trusted Source, with 5 to 6 days being average.
The bottom line
Most people who develop COVID-19 start noticing symptoms within 2 to 14 days after being exposed to the novel coronavirus known as SARS-CoV-2. On average, it takes about 5 days to develop symptoms, but this may change as we learn more about the virus.
Mansi Aggarwal shouted I ought to die right now or else who will account for it my brother ArIndam Bhattacharjee ( cinematographer) if he falls ill. She forgot before marriage he was my ‘coochie coochie coo’ brother. Lust and luxury has eaten his emotions.
I had a pretty baby doll dressed up in red woollen.When I pressed it's tummy it wept and the eyes got swollen.His eyes, mouth and nose was cute and fragile but the weeping made me crestfallen.
One day I saw a baby doll wrapped in fluffy towels in Mum's lap.It was a live one making trumpet like sound but it didn't have the lovely red cap.I didn't dream at all because such odorous dolls are rare. I fled from my regular afternoon nap and saw Mum taking care.Of the smelly, reeking doll as it pooped. I looked with awe as it's eyes drooped. I had never felt badder.There was a moist and wet sputter, spatter, splatter.Mum told he is my brother, happy to hear with laughter, I twirled in front of the mirror, lo behold happened a mishap. So his birth was the beginning of my disease. His spouse isn't aware and he has shown his true colors.
Saying that " Bitch you die right now" she bashed me while I was eating breakfast and without a mask.The fatso hit me while in cancer I looked thus
I put it up in my status on Facebook:
Arindam my dear, you are at a threat from your lovely love while I am dying Arindam Bhattacharjee and you are a killer of your mother and sister. ( and he in reality turned out to be by depriving old mother and ailing sister for lust) He was the only breadwinner but never used such filthy words.Does Bollywood teach such language? While admitting him in FTII Father took an oath that he should look after aging mother and ailing sister but he became crazy or batty after marriage spending time with spouse and her family ignoring his own.
You can't choose your family relationships
But you can choose friendships
Relations lose mind don't remember their duty
Ignoring their mortal duty are the snooty
Friends listen with attentive care,
And reassure my mind;
That cherishing hearts are still alive
It's not from the sense of duty
They bring the shining sun honestly, truly, really
Distance doesn't matter when roots of bonding are strong
With friends as time passes bonds grow strong
Death is knocking on doors and the way I was treated doctors are astounded.
When she hit me because my brother has to live but who will account for my death?
Ravindrra Singh of ABP news who started their career together with a True crime serial " Sansani" commented ( He lent Arindam Bhattacharjee free cameras to shoot his wife's cryptic films-2) praised Arindam Bhattacharjee and called it a family matter which in essence was a murder attempt but it raised the spirit of Aggarwal who reported my Facebook account "as I was harassing her" and reported this blog as " If anyone reads their credit card number would be stolen"
"Dear Payel Bhattacharya your brother Arindam is a good friend of mine... I just want to say that we all go through bad patches in life but family altercations and disputes must not be dragged on social platforms.. yes you are a very intelligent person and a warrior but I humbly want remind that not all the fights are fought on facebook .. , words of Ravindra Singh.
As per the rent, we have lived in lousy houses and he started paying rent only for this house, he himself chose because of the court notice by which the landlord evicted us while I had kidney cancer. Before that everything was arranged by literally begging. Begging continues because he said he can't keep his promise to Father and can't pay for my treatment/ food/ electricity and water bill. Only rent. As if he's doing a favour to mother and sister. This transmutation of slow-witted Arindam Bhattacharjee to Arri became more pronounced after marriage.
This is not a family dispute. It is violence against a woman who fought cancer throughout life and is very serious with brain tumours and metastatic neuroendocrine issues.
Doesn't he realise a rich wife changes all responsibilities.
Irrfan Khan died of a neuroendocrine tumour (NET) — the 'forgotten cancer' —
The cancer is rare and often misdiagnosed as other common ailments like IBS, asthma or anxiety.
According to the Neuroendocrine Tumour Research Foundation, NET is becoming more common but more than half the patients suffer from late diagnosis.
A neuroendocrine tumour (NET), simply put, is an umbrella term for a class of rare cancers. Not only is it difficult to diagnose, but it's also slow-growing and complex.
Neuroendocrine cells are found all over the body — especially in the small bowel, pancreas, stomach, the adrenal gland, lungs and thyroid. As and when these cells receive signals from the nervous system, they release the corresponding hormones.Symptoms of NET often mimic other common ailments — like irritable bowel syndrome (IBS), asthma, flushing or redding of the skin, and unexplained anxiety.
Because of this patients are often misdiagnosed and NET has been labelled the 'forgotten cancer'.
A neuroendocrine tumour is a tumour that forms within those cells. What makes them complex is that their behaviour is difficult to predict.
More and more people are being diagnosed with NET — just not soon enough
NET isn't understood very well and it can often be anywhere between five to seven years before a conclusive diagnosis is revealed.
More than half the people suffer from late detection of the condition, according to the Neuroendocrine Tumour Research Foundation ( NETRF). By that time, NET has normally spread to other organs in the body.NETRF data also shows that every 7 in 100,000 people are afflicted and that number is on the rise. To raise awareness, the International Neuroendocrine Cancer Alliance (INCA) created the World NET Cancer Day, which occurs on November 10 every year.
If you have a nonfunctional tumor you might experience pain in the specific area and might feel a lump beneath your skin. You may also experience nausea and vomiting.
"My body's been gatecrashed by some unwelcome guests and I'm continuing to negotiate with them. Let's see where that conversation takes us," Irrfan Khan said.
I was not even given an opportunity to deal with the violent couple. As for the first couple of days I had seizures next I got Covid in my lungs with then chemotherapy and now I need for PRRT.
. Neuroendocrine neoplasms are fairly rare diseases, but their incidence and prevalence have increased substantially in recent decades. The majority of neuroendocrine tumors overexpress somatostatin receptors (SSTRs), which are targeted for imaging and treatment.
Somatostatin receptor (SSTR) analogues, which are used for imaging of neuroendocrine tumors (NETs), can also be used for therapy by replacing the imaging isotope with a therapeutic isotope. This general field is referred to as peptide receptor radionuclide therapy (PRRT). PRRT is not specific to NETs, but NET therapy
To further investigate the role antagonists can play in treating neuroendocrine tumours researchers developed a study to determine the safety, biodistribution and efficiency of a new type of SSTR antagonist, 177Lu-DOTA-LM3.
177Lu-DOTA-LM3 was administered without severe adverse effects and was well tolerated by most patients.
"These encouraging findings demonstrate the feasibility and superiority of SSTR antagonist 177Lu-DOTA-LM3 as compared to SSTR agonists. Furthermore, antagonist PRRT can be performed under concurrent treatment with somatostatin analogues without the need for interrupting these medications. This is especially important for patients suffering from carcinoid syndrome or even carcinoid crisis,". "The results are very encouraging for theranostic applications of SSTR antagonists to further improve outcomes in patients with neuroendocrine neoplasms in the future."
Some patients may have several years’ delay in the correct diagnosis due to misdiagnosis as asthma. Like other neuroendocrine tumors, lung carcinoids may secrete hormones. Endocrine symptoms are however rare. Despite serotonin, immunoreactivity is present in up to 84 % of the tumors, the classical carcinoid syndrome with
flush,
diarrhea,
bronchoconstriction,
right-sided valvular heart disease and elevated urinary 5-hydroxyindolacetic acid is seen in only about 2–12 % of the patients, usually when liver metastases are present. This low frequency may in part be due to the high pulmonary content of monoamine oxidase, which metabolizes serotonin, but also to the fact that most lung carcinoids do not give rise to distant metastases. An atypical carcinoid syndrome with generalized
flushing,
edema,
lacrimation,
asthma, and
diarrhea may occasionally be seen
Life after death
Spirit or soul
Is there in every culture.
The great cycle of life and death
Seem as vague and hazy like a dream.
Darkness would wrap itself around me,
filling me with a veritable ecstasy of emptiness
If when I die I will live again,
And some thinking, feeling,
Remembering part of me will continue.
Despite the ancient and worldwide
Cultural traditions that cultural beliefs
They mystify and bring relief
Asserting an afterlife, immortality
In ancient Mesopotamia, Egyptians, Hebrew, Greek, Romans, Old testament, The Gita, Chinese, Tantric, Anglo-Saxon
It feels like a formation of beliefs, wishful thinking,
If it was really true no matter what
And I can trust my gut
The door is slammed shut
I could satisfy my deep interests and ambitions
Only if I had proof the authenticity of the traditions
But if it's an endless dreamless sleep
A shadow so deep;
My passion would remain a forlorn hope
Fulfillment of my wishes has no scope
This perspective has given me
A little extra motivation to stay alive!
Thrive and survive
In our vulnerability,
Looking Death in the eye
Don't make me breathe a sigh
Being grateful for every day
The brief but magnificent opportunity
Life grants
Life is but a momentary glimpse of the wonder of this astonishing universe
Not a dream or spiritual fantasy
