My Journey through hell!

Hi there!  I am Radha Kuppuswamy from Bangalore,  India.  I work as a senior customer support representative in a software company.  

Life in this earth is so fragile, delicate, unpredictable, whatever you name it!! It isn't easy to undergo the pressure to survive when you see everyone else is living happily(At least to your eyes they all are happy).I am going to tell you my story as I believe in live "happily ever after". I will tell you why basically I wanted to publicize this personal story. Because I have understood something after facing the problems, which is required for many people who are in need of support and help.

This is going to be a long one though, be prepared of yourselves.

I was pregnant[2nd one] and when I was 3+ months pregnant, and at work, I fainted[Aug 2013]. Vomiting all over the floor and I was doing that cycling motion, only on my left side. I was very heavy already and thanks to the pregnancy, I was huge that four men couldn't lift me up. 

After a lot of struggle they all(a few colleagues and the housekeeping guys) lifted me and made me sit. I didn't know anything about the problem I am going to face in the near future.

Then I took medication as the blood pressure was way too low on that day. I took a few days of rest and I was back to normal. A few days later, I wanted to meet my grand mother who stays 300 miles away.My family and I started a car journey and then there was a careless, drunken truck driver who was on the phone banged the truck[on the front left] and I have had two hair line cracks in my pelvis. Now that you are listening, I tell you, Thank God, the baby wasn't harmed. If it had been, I would have died I am sure about it.

I was BEDRIDDEN for 1.5 months with the traction set up for my left leg to keep it fixed. All these happened while I was pregnant! It was the support of my entire family and friends and Especially its my Mother In Law who gave me full [Mental support I mean] support and within 1.5 months I was back to work! Some unbelievable things happen! Yes they do!

In India it is very common that we stay with our parents. And in my community, you can't expect a mother in law as a 100% replacement of your mother! I always felt that I am more open to my MIL than my mother!

Now everything was okay afterwards. During December 2013, one night I was violently shaking and shivering and it was uncontrollable. Getting excruciating pain in the left leg due to the previous hair line crack, I had to leave that take control of me. I bit my tongue and I heard a noise like a scrambled TV signal noise in my head. I always have low tolerance to Air Conditioners and cold as I had sinusitis. So I was assuming myself that it is just shivering. By the end of Dec 2013 I have had two episodes like this. My tongue was all brown at the sides. Nobody understood why I had such a thing. Because nobody had idea about anything else.

9th January 2014.

I was planning to buy an electric sewing machine and chose one. Before buying I wanted to show it to my Mother in law. I showed it and we were discussing about that. I went to sleep believing that I will buy after going to office! 

Here comes the beginning of the end!

10th January 2014

But god had other plans! 2 AM my hubby was still working on his laptop.

At around 3:30 AM I started shaking my left leg and hand upwards violently and my mouth was stuck to my left side. My hubby was shocked and he was helpless. As he too didn't know to get the first aid for that. 

From now, this was my husband's narration of the story. According to him,he, his Mother/Father, and his relative all waiting for the dawn in a belief that I will be back to normal. But I didn't. He said that I didn't respond when I was called by my name. He said I forgot who I was. I forgot my husband's name and how related we are. But I remembered one thing it was my first son. My hubby said I was rushing to see him even in the middle of this problem.

They are all now confused and scared by my sudden change of behavior which I wasn't aware of. Looked like I was walking very fast without knowing that I was pregnant. I was gasping hard and was unpredictable. My husband was able to recognize it as Fits. Another fits at 7 AM. I was rushed to hospital and was admitted in ICU. 

I was monitored for a while. After a few hours of rest and was waiting for my Gynec to come to the hospital. My hubby called her for help. 

After she came, she talked to me and my hubby was telling them the story as I didn't remember anything. I was operated for the baby to be taken out as the Doctors didn't want to wait for another convulsion to occur. It is still my husband's narration until now.

I regained my consciousness slowly and I started to remember things happening around me. Maybe after 4 or 5 hours.

It was a boy! I wanted a girl. But God doesn't give us everything we want, right? He gives the best that suits us. But, for some people, it takes a lot of time to understand why we are or are not given what we need. Not everyone behave well when they are in distress.

And, the journey of pain and struggle continues..


The Doctors took a CT scan of my head the next day and they found something  called calcified lesion. My husband was told that it can be cured with tablets. He went home to refresh and when he came back to the hospital. He received a shock that I need to be taken to another scan center as the Doctors feel that they need to confirm it as a tumor before they start any treatment.

With the c section sutures, I was taken to the far away scanning center for an MRI. I was damn tired and was so weak. I couldn't say a thing but I was crying all the way. Imagine you were operated, within 24 hours you are taken to a place through bumpy Indian roads to go for an MRI scan.

I tell you, this is the real pain and agony. By now everyone in my family started praying to their favorite God. I came back from the scan and my hubby brought me back to the room and then he vanished. I saw my son crying for feeds and that was the painful moment of my life. My Gynec came for a visit the same day, she told me that I shouldn't feed as I was given anti-convulsants. Due to tiredness I couldn't even lift or hold him. Right from the first feed he was given the supplements. Everyone was telling me that he will be okay with the supplements, but as a mother, I couldn't take it! It was painful and you know why. I wanted to take tablets to stop lactating. My family consulted with another Doctor, who is a neuro surgeon in a very big, good hospital in Bangalore. He is an acquaintance of my second Brother in Law who became a very good friend later.


I looked like this on 13th January 2014. The day I got discharged from one hospital and got admitted in another one. 

That doctor said that I have a brain tumor and I need to be operated ASAP.

I was taken to that hospital in the evening on the third day of the c section. Yes I was. Believe how it is going to be when you travel a lot in the car after a surgery on a bumpy road in Bangalore. 

13th January 2014.
arghhh its gets boring isnt it? I know. I have met people who have gone a lot worse than mine.
Patience!
It was January 14th, the nurses asked me to shave the head. There was a guy who cut-shortened my hair. Then came a nurse who didn't know to shave. God knows why! She wasn't applying anything to shave a very short hair! God, It was painful.

Then I took the razor from her, rinsed my hair applied the hand wash on my hair and shaved it myself. My whole head I shaved. Point Made: I didn't worry about the hair loss and as per the Doctor a few women even cried just to lose the hair.
May I ask you this question? Have you ever seen the old type cassettes which have a very small screws? Sorry I had to download it from Google Images. Do you see the black screws in the four corners of this tape? How would you feel when these screws are being fitted into your head and before doing this you are injected with Anesthesia? Too much of pain and I was supposed to keep quiet!

I did. I did keep quiet. I had to! Because I wanted, I want to survive. I was way too confident about the surgery. Even the Neurosurgeon told me that he wished all his patients are like me! For not taking things seriously when it is real damn serious.

I would like to share a funny moment happened here! 

[While fixing the screws, the assistant surgeon had a big phone, looked like a note or a tab whatever, and I asked her to take a photo of the head with the screws. She said no! No idea why I got a little upset by that. I came back to the room and was telling my husband that I need a phone with a good camera and with good internal/extendable memory. My father interceded this conversation and said I will get it for you after you come home. After I came home he had to buy that phone I wanted! ;) ]

The first painful phase was over and I looked like this. The screws are made of Titanium and I was taken to another advanced Scanning center to scan and map [for the surgery] where the tumor is located.



The next day, it was a holiday in Karnataka and I had to stay in the room. It was so painful that I was unable to move my head left or right. Couldn't even lift my eye brows. Horrible pain!

In between I had another mild seizure where I was taken to  the Neuro ICU and was monitored form there.

16th January 2014.
9: 30 AM IST. I was taken to the op theater[From 2nd Level to the third Level], on the way I had met my hubby who was waiting with a sorrow face and I had to tell him this, "Don't worry, God will not allow you to stay happy: I will survive and come back to you to torture you!"

The operation went on for four hours I guess. I didn't keep track of timing on the next two days.

When I opened my eyes I was in the Neuro ICU being monitored. And the face was swollen and horrible as it can get. The nurses were friendly the day before the operation. After coming to the ICU they were a little rude to me. As a Gemini myself, I don't take any shit from anyone, the misbehaved nurse got well paid off! I had to give her one full strong tap on her hand. She was tightening the air tube( for the lungs) and it was choking and I was going to vomit! Excruciating pain in the head and was uncomfortable to breathe.

Then the Anesthetist came and pacified me a little. After hearing a lot of complaints from me, he agreed to release me from ICU. When I was moved to my room, my family was so scared to see my face. As it was swollen and the cotton patches on my head scared them to death.

The Doctors[neuro consultant, surgeon, and the gynecologist] came for visit everyday and asked me how I was doing. But truly I was feeling a little bad that I still can't feed the baby. Gynec came to remove the stitches on 17th. How many painful moments in just 10 days! I didn't expect that I had to endure so much in life just to survive. Didn't know that my life is so valuable.

I lost the confidence that I can endure the pain when I had mastitis and the temperature went high. I was discharged on 23th Jan. Within that 10 days of stay, had an infection in the bladder due to the urobag. Had to take medicines for that as well. Passing urine was painful. By this time, I had many nurses as friends. They were all talking to me casually and I wanted to add a few in my Facebook as they were so nice and kind. But I couldn't Get them on FB.

 

But again, after coming home I really felt better and confident and I got better soon. The next visit with the surgeon and the consultant was very easy as I looked better. My surgeon always tweaked my cheeks during the stay in the hospital and even during the further consultations and I liked that! ;) If you see the above picture, it isn't stitches, it was staplers. I Wonder how they fixed them on my skull!

Fifteen days later, my surgeon wanted me to go for the Radio/Chemo in another hospital as they didn't have it. But the staplers had to removed and was suggested 28 days of rest! It was entirely my husband's support to ease the post-part-em depression, mastitis and all other painful moments post-surgery. All the women who were due along with me, had girl babies and trust me I was so desperate as I had a boy already and I wanted a girl this time. And, my hubby got beaten up by me every time I heard of someone delivered a girl baby!

I finished 30 sittings of Radio and Chemo. Now I am on Chemo[Temozolomide 100mg]. I am taking Glioz 300mg. From next month, it will be 350 mg.

Every month I take one course of tablets just for five days. I tell you, you will feel someone is squeezing you in a juicer. Tiredness to the extreme and loss of appetite, nausea, vomiting and what not! I am supposed to take this treatment for 6 months. After that once in 6 months, I need to take a CT or MRI scan and will be in touch with the neurologists for 3 - 5 years.

You might have got bored of reading this.
Now comes the main part, the real reasons to post this blog. My note to those people who had never experienced Cancer/Tumor problems, even in friends/Family anyone who they know.
1. When you know that you have some problem/some kinda disturbance, consult a doctor.

2. If the Doctor says that there is something wrong with you, go for second opinion. If that proves that the first Dr is correct, make up your mind that you have to go through a painful phase.

3. Behaving well during this phase is important. I know I didn't, but I regret now. I could have done well and come out very easily. I made it very difficult by cursing the God and I behaved like an Atheist. I shouldn't have done that! God, forgive me for uttering those sinful words!

4. In my case, it was a tumor (Oligodendroglioma), it was in a curable stage, non-cancerous, For this I should have thanked god actually because it is just Tumor]. If you know that you are in a stage which can't be cured, [cancerous] I can only say that your hope is the only thing which will prolong your life. Imagine your loved ones, your parents, family, friends everyone will be happy if stay hopeful and happy.

I tell you one thing, your better half will realize the pain you are going through, but imagine this, they will be happy if you can sustain the pain and do anything to survive even one day longer than the predicted date, it is a definite success.

I know it is easily said than done. Some people don't have money. Some people don't have a moral support.  Some don't have both. We are gifted with a beautiful life and we shouldn't end it before your turn comes. God knows when to take you up to him. 

5. If your parents are going through such a bad thing the first duty of a son/daughter is to stay with them and provide a full moral support.

6. Lets say someone has cancer and they are in a very crucial stage. They need to have a very high hope and should be ready to fight it. It is always the hope and confidence that increases your lifetime not just the medications.

Ya ya ya I can hear that now. Some people dont like advice. But there are a lot of people who need advice and support to fight the disease. This is for them! Not for those who have strong heart!

When I was waiting for the oncologist's visit, I saw many women with breast cancer crying all the way to the radio therapy room for getting that dreadful disease. I myself was down during that time, after seeing a woman crying in front of everyone, I had to talk to her to cheer her up. After that in every meeting she told me that talk was very helpful to her!

After going through this, I realized that  the best thing in the world is being a moral support for the needed. 

One last thing, if your doctor says your days are counting, you need to free your mind and accept that as a fact. Believe in God, whichever is your favorite. Do things you like. If you don't have enough money, you can find happiness in serving others. Don't cry. I know it is difficult but please try not to cry! Some get disheartened and cry. And some say that the crying lessens the burden. Honestly, it doesn't.

Ask your questions to your Dr and get them cleared.

Stay positive and you can sustain the cancer. Everyone is going to die. We shouldn't worry too much about dieing. Worry will bring down your confidence level and by that you are shortening the lifespan. 

All that I can say is DO NOT REFER TO THE INTERNET about the diseases. You better talk to your doctor. Not all the websites give you the correct information. You trust your doctor and trust in God.

According to the internet, Oligodendroglioma is supposed to recur and I am 100% sure it is not coming back to my head. My head doesn't have enough space for that tumor to come back and I am 200% sure that I am going to be alright! Let me say the worst case, even if it comes, I will survive all the troubles with my family's support. I will live for them. By this I didn't mean I am dieing.
I will die when I am supposed to die!

Now, I am back to my work as my Mother-In-Law takes care of my two kids and I look like this. I shave my head twice every week and I will have to do it until I finish the Chemotherapy which will be in October this year. I am enjoying being bald and I don't need to care about hair for a few months. 

After the treatment is over, I will definitely grow long, healthy hair and I am going to enjoy the rest of my life. 

Now I look like this and happy! I have high hopes on my life and have goals too! I am 100% sure I can reach them soon. 


I request all women [above 25 years] to check for breast cancer every 6 months. There are simple steps to check it yourselves or consult a doctor maybe even if you visit a Gynec you can just ask how to check. It is not a harm to ask the doctors to help you on that. DO NOT EVER REFER TO THE INTERNET FOR ANY DISEASE. TRUST YOUR DOCTOR!

I will be happy if this post helps at least someone in any part of the world. 

Not sure If I can advice others, but I had a thought my words can help someone in some part of the world!!

Last but not least, I thank my Brother-In-Law, Swaminathan Rajagopalan who helped us to get the Doctors at the right time and provided mental support to me and to my husband. And I extend my thanks to my sisters and their families, parents, My aunt,  who helped us at that crucial time and whoever remembered me and prayed for my wellness.  

My sincere thanks to the Doctors A.R Bhatt and the surgeon, Sujay Rao.