#Thread Using Twitter in a different way today, to layout a personal struggle I've been going through for over five years. #breastcancer (1/n)

In 2015, a year and a half out of college, I was floating on clouds, having the feeling of invincibility that youth lulls us into. I was working in a global IT giant as a graduate hire. Ofcourse I was not going to do that all my life. (2/n)

I was going to do an MBA like all my friends were doing (imagine not doing an MBA ,) and the money and the life would come roaring in, this job was just "work ex" for the MBA CV. (3/n)

When suddenly one day my mother called from Lucknow and said that she's not feeling well, and asked me to come home immediately. This set alarm bells ringing as my mother would never ask me to leave any thing college or work to tend to her ever before (4/n)

I am an only child and my father passed away when I was 9. So its always been me and her since I was little, we are each other's world. (5/n)

When I reached home (Lucknow) about 24 hours later, her appearance as she came to open the gate shocked me to my core. She had lost about 20 kg weight in about 3 months from the last time I had come home. (6/n)

She had a massive lump on her left breast which was the size of my fist. Armed with the knowledge that I have now, 5 years later, I know exactly what I did wrong then. (7/n)

A general surgeon (should have gone to an oncologist) in a nearby hospital asked us to get the mass checked via a mammogram and a fluid biopsy (the C word was mentioned for the first time). Both came back negative. I was over the moon. (8/n)

Cobbled together a loan from my employers and got the surgery done. Planned on going back 10 days later. The surgeon told me personally to make sure to collect the tissue biopsy of the mass before going back. (9/n)

Everything came crashing down 10 days later. The tissue biopsy came back positive for infiltrating ductal carcinoma,Nottingham Grade III. Canceled my trip back to Kolkata and took her to a cancer surgeon (a surgical oncologist) who charged an arm and a leg for a mastectomy(10/n)

After the operation as soon as my mother regained consciousness, she screamed that she could not lift her left hand. During the surgery, she lost the use of her left hand due to brachial plexus injury, (surgeon error) (11/n)

The doctor (who was previously the head of the cancer dept of KGMC) blamed my mother and her supposed spondylitis. He saw the reports which showed 2 out of 12 lymph nodes positive. Which meant chemo. (12/n)

The doctor refused to do chemo unless we bought the drugs from his own pharmacy which he ran out of his home in Lucknow.
I pleaded with him to please let us acquire the drugs from wherever we can for the best price available, but he refused (13/n)

So, we went to another renowned cancer surgeon who runs his own cancer hospital in Lucknow, who refused my mother as a patient as he only performed chemo for those on whom he had operated. (no surgery payment, no chemo benefit) (14/n)

He however, did tell us about the medical oncologist who has treated us since, with the words " Inke pass chale jao, ye Kisi ko mana Nahi karte, bahut ache aadmi hai." Don't know what that made him (15/n)

The doctor sat in a govt hospital and is the only doctor of his type in the entire state for medical oncology. So getting his appointment and facetime is an entire thread unto itself. However, as soon as I met him, I knew I had happened upon the right guy. (16/n)

None of our two surgeons (one not being a cancer surgeon, one being incompetent) so far had asked us to get any scans, which according to him was a blunder as the tumour was of significant size and lymph nodes were positive. (17/n)

The ground slipped beneath my feet as he asked me to get the scans done in a day and meet him the next day. Even though he sat in a govt hospital he didnt pressure us to get the scan done at a particular place or get the labs redone at a specific lab(like previous dr) (18/n)

In all this running and standing in lines, getting token for meeting the doctor, going to get the reports for my mother's scans, I have been alone, that hasn't been a problem for me but I hate that my mother has to be alone in all this whenever I have to leave for any work.(19/n)

In all her agony, her being alone is the biggest cause of sadness for me. we were lucky and the scans were all clear and she was put on standard chemo for breast cancer (anthracycline+cyclophosphamide+taxane). (20/n)

The doctor told us that my mom was HER2Neu+ (1 out 4 Breast cancer patients are)and needed a drug called trastuzumab which would cost 7-8 lakh for the entire regimen. I said sorry sir that's beyond our means. (I was earning~ 20k at the time). This was my second mistake. (21/n)

We completed chemo without any major side effects followed by radiation to the chest wall. My mother was lucky as she didn't have any adverse effects from any of these treatments. This picture was taken during the chemo days of 2015 winter

In April 2016 we received our first setback when she got cancer in her other breast as well. We had another mastectomy, this time in the govt hospital under a surgeon who did not ruin her other hand and there were no lymph nodes positive and the scans were clear as well.
(23/n)

It was declared as another primary and not a spread of the other one. We then had two years of quarterly followups. (24/n)

In 2018, I had moved to Noida for a new job with her and came back for quarterly checkups to Lucknow. She developed a cough, which just would not go away. And she also had shortness of breath. (25/n)

So on the next visit to the doctor I told him and he asked us to get an X-ray done, which led to our entire world falling apart. Her right lung was completely collapsed, (atelectasis is the medical term) (26/n)

This led to further scans, a bronchoscopy , a biopsy and the result that the cancer had returned and was in her lung.
Her right lung was completely collapsed, as a 3*4cm tumour was blocking her main wind pipe that goes into the right lung. (27/n)

The doctor put her on chemo+the drug (trastuzumab) which we had not got two years earlier. This is when I started the crowdfunding campaign for her treatment (28/n) https://milaap.org/fundraisers/support-rajul-misra

She responded extremely well to the therapy and in the next PET scan the tumour was nearly invisible and all the lymph nodes were negligible and her lung had inflated back. (29/n)

We were beyond happy as the word metastatic cancer had really let us down dark avenues in our mind only a few months back. After this scan, we went back to Noida and she was on maintenance drug every three weeks. (30/n)

My friends, relatives and the milaap campaign had combined to make this enormous burden (nearly 8 lakh) possible. (31/n)

The happiness and relief were shortlived. My mom who loves her smartphone and WhatsApp forwards like anything, slowly became uninterested in reading things. She also started to have lapses in concentration and began forgetting seemingly basic details. (32/n)

I never for once linked it to the disease (another mistake). Maybe I didn't want to subconsciously. Her next scan showed a single but massive lesion in her brain and the size of the lung lesion was back to 3cm. I was shell shocked. (33/n)

How did a drug that was so effective suddenly fail to arrest the disease so badly that it not only it grew in the lung but also made its way to the brain. (34/n)

Her condition continued to worsen day by day as I ran from hospital to hospital and one "source" to the next to get the surgery done in a govt hospital (which we could afford). The waiting time given to us at both govt hospitals was in excess of three months. (35/n)

My mother could not remember her birthday and mine, sat quietly all the time and cried when we couldn't see her, at her fate. It was the most helpless I'd ever felt. (36/n)

Finally I managed to get her the surgery through the grace of a colleague's contact. The moment she came out from the Operation theatre she was bright and completely back to her former self, able to recall everything and read and laugh. (37/n)

That was one of the happiest moments of my life (I don't know if that's sad or not ). Stitches were removed 10 days later and the scan showed she was fine. Now the new line of chemotherapy (thankfully oral this time) was to take care of her singular lung lesion. (38/n)

But on the day we were to board the train back to Delhi, she had a seizure and fell down.
We rushed her to the neurosurgeon who told us that exactly 15 days after the surgery the tumour was back and of the same size as before (39/n)

I was told to rush to Delhi with her and get her looked at by one of the best neurosurgeons in the country in Gurgaon.
Again there was no money not even for me to fly myself and her there never mind the extravagant cost of the surgery. (40/n)

I was now getting really afraid of asking the same people for money again and again. There was nothing I could sell, no father I could rely on or a sibling. The generosity of strangers on Milaap helped me get the funds for the surgery at Gurgaon. (41/n)

The surgery was extremely stressful. I can't even imagine what pain my mother must've gone through having her skull opened twice in a month. I prayed after a long long time that day. But the surgery went successfully and she recovered well. (42/n)

Crucially, this time, the tumour didn't come back after 15 days. But, we had another massive expenditure forthcoming as we had to get her targeted radiation for the brain lesion which would cost another 3Lakhs. (43/n)

The waiting list for that in govt hospitals was another three months if you could get a radiotherapist who agreed to do that for your patient. That was also done through crowdfunding and help from friends.(44/n)

Since then, the next two scans showed she was doing well. The drug was giving her control on the disease and there was no recurrence in the brain lesion. Things started to go back to normal. (45/n)

Then came the lockdown in March this year. We were lucky that she was on oral tablets during this time and that made life considerably easier as I emailed my doctor her labs and he advised us on the chemo. (46/n)

However, due to CoVid restrictions and inability to move, the next scan got delayed. I also lost my job in the lockdown and had to move back to Lucknow in August, where the doctor asked us to get a scan done asap.
(47/n)

Thats when all hell broke loose. The latest scan showed significant progression of disease and new lesions in the brain and liver. Many lymph nodes lit up in the scan and the lung lesion had grown so much that its now pushing on her food pipe. (48/n)

The next meeting with our doctor, last Wednesday, was the lowest I've ever felt in my life. We have exhausted all therapies within my collective support system's reach and the next line of drug (a drug called Kadcyla) will cost 4.5-5L per cycle every 21 days.(49/n)

Other than that her brain lesions need immediate treatment through surgery and/or radiotherapy before they start pressuring her brain and causing cognitive damage again. (50/n)

This will come to a total of atleast 30 lakhs. I have no way to afford that nor do I have the gall to ask the same people who have helped me through so much in these past five years to trump up another massive sum. (51/n)

I wanted to write this thread to outline my struggle and to make people aware of what not to do as much as what to do.
My mother remains in good health with only a little shortness of breath, for now. (52/n)

I fear every second of what's to come, her will to live is very strong, she has suffered all her life, from being married at an extremely young age to being widowed before 30 to now having battled aggressive cancer for 5 years at 52 years of age. (53/n)

People go through tough times in life with the light at the end of the tunnel bringing them forward. But what if for her there is no good time, no light at end of the tunnel. (54/n)

I want to request all of you to please share the campaign in your circles and contribute if you can. This is the only way I can give her a chance to fight https://milaap.org/fundraisers/support-rajul-misra

Please help get the word out @sushant_says @SonuSood @YUVSTRONG12 @GabbbarSingh @milaapdotorg @Su4ita @greatbong @joybhattacharj @Dorkstar @varungrover @bhogleharsha @ImRo45 @karachikhatmal @Nidhi
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