Never know when they could come in handy

When Tilotama stormed into my friend’s life, our lives were in disarray. We were scrambling to find solutions unaware of the newer problems lying ahead. I was chasing every support group offline and hawking several others online. “Unfortunately, in India, cancer is still taboo. Many don’t come forward to talk about it,” said a few working in this area. While there are plenty of books available on the subject, not many have the patience to buy them, read them and then gear up for what’s in store. “I am not in the frame of mind to talk to anyone and understand what I’m getting into. Please leave me alone,” my friend said, when some of those cancer survivors expressed their wish to talk to her personally. As a cancer carer and a journalist, I found it hard to find support. 

Through the journey fighting Tilotama, my friend and her support system, including me, discovered a few hacks, learnt some from others and invented some too. I do not wish for anyone to play into the hands of Tilotama or any of its kith and kin. But, destiny can turn bitchy overnight. And when it does, here are some of the hacks that worked for us. 

Food and fluids:

• Chemo drugs can make you feel queasy. Always carry nausea candies and lemon water. Normal water may not be of any use. Salted buttermilk is another option. Remember that you need to drink a lot of fluids.

• Patients may lose their appetite. Have a couple of options in hand, you’ll never know which dish from the menu will make it to the palette.

• Sweets may not be suitable for the palette. Some chemo drugs can be sweet-tasting and can linger longer making the patient detest the taste. Have salty or tangy snacks in store.

• Mucaine Gel aids not just in digestion when one’s stomach feels weird, but it also helps one swallow the food after taking one spoon because it forms a layer over the mouth ulcers.

• Smoothies can fuel the body and can be served with some protein powder. They are easy to swallow and they can be made tangy if sweet smoothies are not preferred. Milk may not be palatable for a patient. Try oat milk or almond milk as substitutes. You can add protein powder too for additional nutrition.

• Make sure you eat fibrous food. You cannot afford to get constipated as that can lead to other complications. It’s hard to follow, but fiber gummies and other such substitutes can be handy. In case you are, please don’t worry. There are multiple items - from 4 Ply tissues, Tucks to Lox Gel, Sitz Bath tubs - available online for your help.

Hair:

• Hair loss may be inevitable. Please do not hold on to the strands and wait to go fully bald. Clumps of hair on the pillow are also a source of infection. Always better to raze your head sooner than later.

• With baldness, sweating and irritation of the scalp are unavoidable. Use cotton caps and satin pillow covers. Cotton caps are soft on a sweaty scalp and satin pillow covers can make it comfortable when the scalp has exclamation hair.

• We weren’t lucky with cooling caps to prevent hair loss. However, there are cooler versions available now.

Smell:

• Watch out for mouth ulcers. Bland food and odour-free medicines are the best way of treatment. Smells can trigger nausea.

• Be careful about smells. Make sure there is an air purifier, carry a fragrance-free sanitizer, use fragrance-free detergents and cosmetics. The smell of food too can irritate a chemo patient.

Clothes:

• Different parts of the body can experience different temperatures. Hand warmers in case the hands are cold. Leg warmers for the legs, socks for the feet, gloves for the fingers. There are times when just the chest or the ears are cold. We tailored cloth masks into ear gloves for this. Body warmer packets and heating pads are useful too.

• Those with chemo ports can wear t-shirts that are available with zips to provide access to the chemo port during your session.

Hands, legs, nails:

• Keep moisturising and massaging the patient’s hands and legs once everyday. This can help ease one of the side effects - neuropathy. 

• Discolouration of nails is possible. It may take a long while before the original colour is restored.

• Your fingertips could feel weird. The tip of your toes too. My friend often said that it felt like there was a layer over the tip of her fingers and that the sensation of touch felt different and annoying.

Mouth:

• Always carry a lip balm or a petroleum jelly as one’s lips and mouth can remain dry throughout your chemotherapy. Biotene Dry Mouth is a mouthwash that will help with dry mouth. Again, be careful with the flavours as some may find a few flavours irritating on the tongue. Same applies to the choice of toothpaste. They are all part of a trial and error.

Mind:

• Patients generally have a lot to process. Do not keep asking them how they are doing and make them feel more like a patient. 

• Do not ask them too many questions, they can’t process them all together. You take the decision and make it simple for them. Similarly, do not ask them - How can I help? Give them an option - Can I bring you lunch? It makes it easy.

• Chemo brain is a phenomenon where one’s brain isn’t very active. There were times when my friend forgot what she had set out to do or she forgot what she intended to say. 

• Talking to a psychologist can do wonders to your mental health.

Menstruation:

• Menstrual cycle halts during chemo. Yet, wearing a period panty during chemo sessions can be helpful as some drugs can release some discharge. 

Injection:

• Prilox is an ointment that can be applied on the surface of the skin. This will numb the area before the doctor or the nurse pricks you with a needle.

• Stuffing a pillow between your arm and the body can help relax the arm muscle when you have to be administered a subcutaneous injection on the arm. Similarly, drink lots of water so that your veins pop out aiding in the case of intravenous injection.

General:

• On days when you are feeling better, do enjoy the day, but remember to conserve your energy. It’s better to get your important tasks done in the first half of the day, as the body will not be able to remain active for long. 

• In my friend’s case, chemo drugs took a week to act on her body. Result - drop in blood count. We were able to figure this out when she complained of severe stomach pain. It formed a pattern. A week after the chemo session, when her stomach pain surfaced, she got the blood test done, and further action was initiated.

My friend is now ready to talk to those grabbed by Tilotama or its myriad avatars in a wrestling hold. She hopes she can help others fight it like she did. “It is different for different people. I hope I get to be useful for someone,” she keeps saying. With a good doctor, a comfortable support system and a kind psychologist, you can fight your way out. Just, hang in there!

Painful goodbye: Tilotama changed us forever

“I don’t think I mean anything to you because you never bid me a tearful adieu when you head back to Singapore. I’m the one crying buckets,” I’d always say to her. Each time I would drop her off at the airport, she’d carry a tissue pouch to handle the ‘water works’. “That’s not true. My heart sinks too and I just don’t show it,” would be her response.

This time, it was different.

I wanted her to go back to Singapore and pick up life from where she left. But I wanted her to stay here too. “I really want to go back soon. I am already missing so much at Google,” she said. Agreeing with her, I replied, “You will very soon. I can’t wait to see this Googler in action.” Wait, did I feel that lump in my throat, as I said it? 

There was a lot to be done before her return. It seemed better to focus on this long list. It made me feel like her return lied ages away. 

As always, my friend took out her notepad and wrote the headline: Things to do. This included ‘thank you’ gifts to the doctors who treated her, doctors who gave their second opinion, doctors who operated on her, doctors who advised and guided us out of sheer goodwill. That’s not all. We had to thank a lot of my friends, who gave me the right contacts, who supported me when I was in a spot, who arranged last-minute items needed for my friend. We also had to thank her friends who helped her sail through this journey from Bengaluru, Chennai to even Singapore. This covered her school gang, college mates, gym buddies and her work friends. Then we had a whole bunch of relatives to thank for their timely help when the family was stranded during emergencies. And finally, those well-wishers, who brought a smile to our faces while passing through those difficult chapters of life.

“This is indeed a team effort, baby,” my friend observed. I concurred. We settled on giving them plants with a personalised, hand-written message for each. “Plants are a good idea, baby. I was wondering if the doctors might hesitate when we give them gifts. But they seem to like plants,” she noted excitedly. 

The personalised message was different for the hero we admire - her oncologist. “When are you leaving?” was the first question he asked when my friend entered his room. “Thank you very much,” she said, with a pout and a wink. The room resounded with our laughter. The hand-written note contained a record of his dialogues that we often fondly recollect. I still remember the times when she’d return home from her chemo, almost ready to collapse, but flashing a faint smile while mouthing the oncologist’s ‘dialogue of the day’. My friend can never design things without tables and charts. This card was specially printed at a photo studio with a table that explained the context, date and the punch dialogues of our real-life Superstar. “This is different. I will read it at leisure,” he said.

While we were making our rounds thanking those who made a difference, she constantly complained about her vision and her headache. “I still can’t see, and my headache shoots up when I look into the monitor,” she complained, while slowly easing herself into meetings. She constantly sported a wrinkled brow and swallowed an Ultracet. 

We decided to get her eyes checked. The ophthalmologist explained that this could be a migraine and prescribed Naxdom. The doctor also suggested that she consider progressive lens if her vision doesn’t improve. However, Naxdom was of no use. “Ultracet seems to work better. But flashy lights and hunger trigger my headache, which is very migraine-like,” she commented. 

Otherwise, she was doing okay. Her appetite was back. “Voracious appetite this is,” she remarked. Her general physician did say that this was natural. A body starved for months due to chemo can try to overcompensate once better. We just need to give it time. 

The review was closing in. She met almost everyone. We had to plan hard to make time for this ‘thanksgiving’ activity as each of our folks were now yearning to spend private time with us respectively. We also wanted to roam the streets of Bengaluru. “I want to walk down Malleswaram’s 8th cross like we did in college,” she remarked. Our bucket list comprised: watching the latest Kamal Haasan movie, visiting the latest coffee shop opened in the city, walking down Church Street, dining at the latest 5-star hotel and having breakfast at popular restaurants. “I wouldn’t have done all this, if not for you,” she purred. “Yes, otherwise you are very boring,” I mumbled. Trust me when I say this. She is a home bird. 

And man, by the time we ticked all that we finalised in that wishlist, it was a nightmare. Managing parents’ demands, curfews and family obligations, and executing our plan was akin to a NASA scientist launching a rocket while he had a gun pointed at him. “I should build a temple in your name for handling all this patiently and diplomatically,” she teased. 

The headache was still a bother all along.

The oncologist suggested we meet a neurologist, who is also a headache specialist. During our consultation, the neurologist said that this looked more like “status migrainosus”, where the migraine lasts for more than 72 hours. At the same time, he recommended an MRI in the background of cancer. “This is just to rule out anything,” he announced. As we walked out, I was terrified. “Shall I book the MRI slot?” I asked her, trying hard to swallow my tears. “Calm down. Don’t be silly. With cancer, any doctor will suggest a scan first,” she said, hugging me. Tears of panic rolled down my cheeks. No matter how strong you are, you can never stop dreading Tilotama’s return. 

We decided to let our oncologist take the final call. He said the MRI scan is not necessary now. “Onco said no need. I like our onco!” was a line she kept humming as we drove home. 

She opted for progressive lens. Her headache was a wax and wane issue. She managed with Magrium tablets (containing magnesium), prescribed for two weeks. “I strongly feel these lenses will help me with my vision and headache,” she claimed. I just hoped her claims would be proven true soon. It may be a minor headache, after all, for many. But when Tilotama’s horrors lurk in the background, a headache is no longer trivial. 

Headache aside, there were many challenges before her return. Her landlord had increased the rent and she was wondering if it would be worth it to find a new place. She virtually hunted for many accommodations, but the soaring prices and the added pressure of shifting home as soon as she landed there drove us into abandoning the plan altogether. “I think I’ll just continue here with the new rent. Perhaps after a year, I can consider moving. For now, I’ll have a home when I get there,” she declared. It made sense. There were added expenses in the form of cleaning, changing bulbs and servicing the AC.

Another challenge was an e-mail from Google questioning her status on the booster vaccine and questions raised by the Singapore ministry. When she received the notification from the ministry reminding her about the due date for the booster dose, she was halfway through her chemotherapy. She sent them a detailed e-mail explaining her condition, but did not keep Google in the loop. “I just don’t know how that slipped my mind. These days, I forget a lot of things. I guess it’s chemo brain,” she said. I’ve noticed the same. If there is an interruption, she forgets her trail of thought. Unlikely for a person who’s middle name is ‘multitasker’. Meanwhile, Google was intimated and the staff there obliged to help her out. “I have to take that vaccine soon as I land,” she added.

Her review was done and everything seemed good so far. When she was earlier confronted with challenges, she wanted me to travel with her to Singapore to help her settle down. I thought it best to travel later when her parents are back in India. I felt that’s the time she’s going to be lonely. Of course, thereafter she’ll have to manage life on her own. So, the tickets were booked for August 4 for my friend and her parents from Bengaluru to Singapore.

We were busy the week before her return; packing and re-packing, weighing and re-arranging. “Looks like we need to send one package through an agent,” she said, and that was organised too. With her parents heading with her, and items accumulated during her one-year stay, there were cartloads of clothes, medicines, food items, cosmetics and more. Another issue is these items are mainly used only by her. It’s better that she takes them along. I was quite shocked to find that I had one large suitcase too with my items alone. That means, I am heading back to my place, bag and baggage. 

It was D-day. I started the day with a message to my mom. “Don’t worry. Think of Singapore as another area in Bengaluru. You can keep visiting this backyard,” was her heartwarming reply, followed by a GIF. I don’t know how she does that. She manages to find the right GIF for the right mood or occasion putting an unexpected smile on my face. Through all these months, she has been a silent force of unending support with her listening ears and her lending hands.

My mind raced back to August 29 last year when my friend arrived dragging her feet. We have come a long way, haven’t we? She sure knew what I was thinking. “You know I’ll always take care of you. And will remain ever grateful?” she affirmed. I didn’t make an attempt to stop my tears. They just kept rolling. She came to me with a tissue box and scooped me in her arms. I sobbed uncontrollably. 

Her favourite aunt and cousin came home to bid farewell. Some of her aunts got together and gifted her a pair of earrings and a pendant. She looked elegant when she wore them. “Do you like it?” She bellowed. “Absolutely!” I whispered. 

It was time to head to the airport. My dad called to say that his left leg was giving him trouble. “There’s acute pain and I'm unable to walk,” he cried. My friend asked him to stay home and rest, but he insisted on travelling to the airport to send her off. After all, we were all there together to receive her last year.

As we entered the airport, I felt my heart fall to pieces. I took a deep breath and got out of the car. I tried to keep my thoughts on helping them with the baggage trolley and arranging the porter, when she suddenly hugged me tight and said, “You’ve become a habit. It’s hard to say bye to you. Don’t make me miss you too much. Come to Singapore soon. Thank you for putting your life on hold for me. I promise I won’t rest until I put your life back on track.” Whoa! Did I hear her reduce to tears? I burst into tears as well. Her parents were silently weeping with their hands folded, expressing gratitude. 

My friend quickly composed herself, took charge and led her parents into the terminal, all the while waving goodbye to me as I stood at the departure gate. I waved back with my mind dancing with glee (looking forward to her new life) and my heart drowning in sorrow (thinking old habits die hard). 

We drove back home in silence. 

P.S.: They say great villains make a great story. So, thank you Tilotama!

Passing the first test with flying colours

 

“I’m stuck here because of COVID. I hope I’ll be able to travel in 6 months. I want to be there for your surgery,” my friend said, sitting in Singapore during the advent of the pandemic. I was found to have a fibroid in the uterus, which needed to be surgically removed. I decided to postpone the surgery keeping in mind the uncertainty of the raging virus and my friend’s absence. 

In 2021: “I think you need to get that fibroid surgery done. I can’t see you in pain each month and I want you to be fit since you are going to take care of me through this long, arduous journey with Tilotama,” my friend insisted, when she was diagnosed with Lymphoma and was getting set for her first chemo. I gave it serious thought and came back to her. “If I get the surgery done, I need to rest for a week. Also, I might be restricted from carrying heavy things. With your chemo scheduled every alternate week, I don’t want to be in a position where I’m unable to hold you, should you fall or trip or remain incapacitated. I don’t know what to expect from these chemo sessions,” I stated, fraught with ambiguities.

She tried her best to convince me, but I was adamant.

It was the first week of June, 2022. “I guess it is now time to focus on you. I want to be there is what I told you, right? Let’s get that surgery done,” my friend ordered. “But on one condition,” I cut in. She looked up, quizzical. “I want to enjoy a solo trip. I just want that break, away from everything and everyone,” I said, expecting this overprotective figure to get into combative mode to deny my wish. “Go ahead, I’ll book your tickets. Have you thought of a place?” she asked. I jumped in joy.

If you thought this seemed easy, a challenge came in the form of my father, who wasn’t too happy with this solo trip plan. “Don’t you want to go with your family? Have we become strangers to you?” was his instant remark, laced with sarcasm. It took me exactly 14 days to convince my family, decide on the destination, make the booking (actually my friend did), and get set to fly to Mangalore. I took the help of my dad to arrange the cab and accommodation so he can be at peace knowing he is sending his daughter to a known location. 

While I know Tilotama gave my friend a hard time, I had my share of troubles - handling people, making time for each, worrying about those I couldn’t make time for, handling those who were sensitive and insensitive to the situation - all this while stressing over her health. I was buoyantly headed to the airport when she called, “Have you made an itinerary of the places to visit there?” I responded saying yes. “Okay, send it to me so I will remind you,” she remarked. I interrupted, “No way. I don’t want you chasing me with your ‘it’s late, get ready’ and ‘it’s late, get back to the hotel’.” We both laughed and she agreed she wouldn’t bother me with her fastidious nature.

The two days of my trip flew by. I went to the beach, kept watching the waves wash away the mindless vandals residing in my brain. I gorged on chaat items and Mangalorean delicacies (strictly vegetarian). I walked the lengths and breadths of the city’s shopping streets, vlogging the journey too. I met a few friends, some even sent a few goodies to my room. I sailed on a boat, dancing to the backwaters rippling under. I spent quiet evenings with a drink. I even tried the native arrack. I dawdled back to Bengaluru.

I returned just in time as my surgery was scheduled the very next day - June 21. We rushed to the hospital with my parents and my friend. My parents kept saying, “Why are you troubling your friend? She is just recovering.” They never believed me when I said, “To her, this means the world. She wants to be there and she won’t take no for an answer - be it me, you or her folks.” I know the feeling. Just as I wouldn’t rest in peace if I weren’t there when she is unwell, forget being hospitalised.

We didn’t sleep that night. I was on edge, and I knew all of them were too. We arranged three passes at the hospital. Nobody was willing to stay back at home. Whenever my friend was hospitalised, she never let me sit on the patient’s bed. This time, she didn’t let me sit on the bed, nor wear the patient’s gown until it was time for surgery. When the IV needle was inserted, she was, as usual, holding her breath. “You can apply this Prilox. It will numb the skin there,” she told me, biting her nails. I asked her to close her eyes. The cannula was set and I was steadily wheeled into the operation theatre.

Oh! I forgot to mention that I had a swollen lump below the jaw on my left a day before the surgery. The anesthetist examined me at the operation theatre and said that a tube would be inserted down my throat to facilitate my breathing while I’m knocked out. “I don’t think that should interfere with this swelling. Seems like an enlarged lymph node pointing to an infection. Anyway, we’ll complete this surgery first,” he commented. I was made to lie down on a flat, metal bed. It was mighty cold. I saw my gynecologist who said hi. I was just thinking if my friend would have found all this overwhelming when she was in the OT. That was the last thought and I was out like the light.

I woke up groggy. My eyes kept closing and my body kept shivering. I felt pain in my abdomen. “No, not pain. It’s those cramps,” I screamed. It was still dark. I felt a nurse cover me with blankets. I was familiar with this. I have seen nurses do the same to my friend at the recovery room. “Am I in the recovery room?” I blurted aloud. My eyes opened a bit. I saw several beds. I saw a few nurses running helter skelter. I felt that pain. My abdomen was cramping. I held my hand out trying to call the nurse. I told her about the cramps. It’s like period cramps. “Calm down. You are on painkillers,” she comforted me, while adjusting the warm bags near my ears. “Ah! I like that,” I said, before drifting back to sleep. 

After another ten minutes, I woke up and I saw the time. 11.30 am. I was wheeled in at 8.30 am. What could have taken so long, I wondered. I saw the nurse frantically dialing a number at the desk. I called out to her to find out if she was trying to reach my folks. She nodded. I gave her my friend’s number and stated, “I’m sure she must be waiting outside.”

There she was as I was wheeled out. “Hi baby!” she exclaimed. I smiled. She tagged along as I was shifted to the ward. My parents were waiting for me there, feeling miserable that their numbers weren’t reachable when the nurse tried calling. “Don’t worry. I know this girl would have insisted on staying there throughout,” I mentioned. All agreed. “I didn’t even want to go up for breakfast. I knew you were there for me throughout,” she gasped, “I even wanted to buy some juice and keep it with me, just like you did.”

“The nurses will give me juice here,” I croaked. My throat was sore and dry. I was still very sleepy. They narrated to me the entire ordeal outside the operation theatre, while I was under GA. Apparently, the 15-minute surgery went on for nearly an hour. The doctor was supposed to insert a hormonal intrauterine device called Mirena, which acts like a contraception, but could be useful for my periods. “The doctor decided against it,” my mother said. Just when I wondered why, the gynecologist walked in.

She is tall and very smart. Hearing our conversation, she explained, “I took out 90% of your fibroid and I am very happy. It was CT-guided and I successfully managed this. That’s why the surgery took time. If I wasn’t able to succeed in that, I’d have opted for Mirena.” I questioned her about the persistent cramp-like pain. She said it would be there for a day or two and that I could take a Dolo. She also examined the swelling and that's when my genius buddy revealed to the doctor about the cavity in my mouth. The doc put me on antibiotics and asked me to visit her a week later. 

I was bleeding. The pain lingered through the day. My friend was on her toes and I didn’t even ask her if she was feeling okay. She helped me to the restroom, fed me, tucked me in my bed, and fussed over me. Of course, my parents were anxious and putting themselves out because this is the first time they are seeing their daughter in the hospital. I slept better but I don’t think others did.

The next day, I was better. I was ready to be discharged from the hospital. I felt a bit exhausted and I couldn’t fathom what my friend would have gone through in the last few months. She kept a reminder for my tablets, she’d even hand deliver them. I just don’t know how she found the energy or the resolve. She was there through the entire week, taking care of my every need. 

The review went okay. I completed my cycle before the visit to the hospital. I was definitely getting better with the cramps. The scan went well. The swelling receded. I was advised to visit the dentist soon but I did suffer from constipation. The doc advised me to ensure loose stools and I was good to go.

“See baby, I’m back in action. This was my test. My endurance test. I pulled it off, right!” she beamed. I hugged her tight. I couldn’t thank her enough. “Just like you’d say, I couldn’t have done this without you,” I asserted. I realised the importance of good support systems in recovery, and we found that in each other. We’ll continue to.

From an aggressive no to a passive yes

“Will you fill my water bottle?” I asked my friend after letting my hair down at the Freshers’ Party in college. “No. You can do it yourself,” was her immediate reply. Before I could nudge her, I ran up to the stage to dance as they played one of my favourite numbers. I forgot how thirsty I was. 

After 30 minutes, I walked up to where my belongings were stashed in the corner of the auditorium to pick up the water bottle. I realised it was filled to the brim. I turned around to look at my friend and smiled. She winked in return.

She has always been like that. Her first response is always a ‘NO’! And later she’d come around to say, “I did it ‘cos you asked me to.”

This time around, she kept saying no to the Fistula surgery. “I’ll get the chemo port removed for now. I’ll live with this Fistula for a while. I can manage the pain. I can’t do two surgeries,” she whined. I nodded and stayed silent. 

Many in the family told me, “I think you can convince her.” I was biding my time. 

“What do you think?” she asked me two days before our scheduled visit to the hospital for pre-surgery needs. “I think it’s better to get both done. I’m worried that the Fistula may suddenly spiral out of control when you are alone in Singapore. How will you fight Godzilla then?” I declared. She fell silent. I gave her time to dwell on this thought.

We left for the hospital the next day. We started with a consultation with the vascular surgeon, who’d remove the chemo port. She then said, “Baby, let’s meet the GI surgeon and see what he has to say about the Fistula surgery.” I smiled. “I haven’t decided yet,” she added. I said, “Yes, ok!”

The Fistula needs to be removed. Even if the pain is manageable now, this will end up in surgery later, confirmed the surgeon. One conversation flowed into another as we walked between departments - from package lounge to anaesthesia clearance, blood tests and more. We walked out of the hospital late afternoon having fixed both the surgeries for 7am on May 31, 2022. 

“Happy? You have a knack of convincing me,” she commented, as we sat in the car. “I kissed her on the forehead and assured her that it’s going to be okay. “You have to be in the hospital with me again. Be prepared,” she mentioned with a smile. “There’s no without me,” I stressed.

I had to travel to Chennai to attend a function organised for my late mother’s sister, who was going to fly down from the US. I was prepared to skip the event, until my friend forced me to go. “I won’t do the surgery without you. I’ll wait till you get back, I promise. You haven’t seen them for more than 5-6 years. Go and meet them. This will be a good break,” she chirped. I decided to follow her advice.

On May 23, I went with my family to one of my favourite destinations - Chennai. I stayed with my favourite foster parents, attended the event, and broke down upon seeing them. I enjoyed spending time with my cousins. I returned by train two days later. I was petrified while on the train. I was worried about COVID and all sorts of infection. I was literally bathing in sanitizers. I landed home on May 26 and left for my friend’s place the very next day.

I was suddenly running temperature and my throat was scratchy. I was dreading the RTPCR. “Please pray for me,” I told my mother, extremely concerned. “Did I make a mistake by going to Chennai?” I asked my friend. She just hugged me to say everything is going to be fine. “Let’s be prepared. In case this turns out to be unfortunate, I’ll try to postpone the surgery,” she said. I was devastated. This was the last stretch and this was all on me. The result was out on May 29. It was negative. I went and thanked God immediately. I prayed that my friend and I would visit the Hanuman temple near my home.

On May 31, my friend, her dad and I rushed to the hospital by 6.30am. By the time the admission formalities were done and we were in the ward, it was 7am. Her vitals were being checked after she changed into the patient’s gown. 

She was nervous, she was trying to meditate, she was fidgety. I was anxious, I was pacing up and down, I was jittery. But we found calm in each other. We knew we were going to get through this. As if reading my mind, she said, “We are almost there. Tomorrow this time, we’ll be done.” I replied, “We are in the last leg. C’mon baby!” We gave each other a high five. Our smiles were hiding the pain endured through all these months.

The doctor arrived to first say that her surgery will be done at 11 am since the admission formalities were delayed. However, after a while, they accommodated her earlier. She was wheeled in at 9 am. The doctor said the cannula will be inserted at the theatre. I was standing out worried if she would find that painful. 

Her fistula surgery was scheduled first. They said it would go on for half an hour. Her father and I decided to quickly have breakfast at the ward. Just as I was taking the last bite, I received a call from the doctor asking us to get to the operation theatre. While I knew it was going to be a regular update saying, “Operation successful,” - like what we see in movies, my heart was still palpitating. 

“What if the cannula wasn’t inserted properly!”

“What if the sudden start of her menstruation interfered with the surgery?”

Her father interrupted my thoughts, “Hope there’s nothing to worry about, right?” I hid my thoughts in the backburner and said, “Of course, it’s going to be nothing.”

As we reached the OT, the doctor was waiting at the entrance holding a small bottle in hand. “I thought you might want to see the Fistula that we removed.” I took a picture of it thinking my friend would want to know how her Godzilla looked after all.

As this surgeon said bye, we saw the next surgeon saying hi to us as he sashayed into the theatre. There were no seats outside. Our legs were screaming in pain and the security personnel was screaming while directing us to clear the area. I asked her father to wait at the ward. My friend’s mom too was on her way to the hospital. I was dancing on my toes trying to wait for my friend while swallowing the pain. 

I tried counting numbers, chanting some prayers to keep my mind distracted. I noticed another lady doing the same, squatting on the floor. She smiled at me. I walked closer and introduced myself. As we got talking, she said that she is a gynaecologist from Agra, who came all the way here to get her son’s jaw fixed. “It’s a complicated procedure. If we don’t get this fixed, he wouldn’t be able to eat and he’d starve to death,” she lamented. Every home has a tragic story buried behind smiling faces. 

I missed seeing my friend being wheeled out to the recovery room, but I saw the vasco surgeon. “We have successfully removed the chemo port. She is fine,” he said, patting my shoulder. A sense of relief swept through me. Her parents were waiting at the ward. I conveyed the news to them as I hurried to the recovery room.

I saw her at the far end of the room. She was wrapped in blankets with warm air blowing in to keep her warm. She was drifting in and out of consciousness. She did catch a glimpse of me beside her. I said, “Hey, I’m here!” She immediately began crying. “I’m in pain!” she cried. My heart broke into two when I saw her lips curl and eyes well up. I dragged the nurse in to show her that this girl is in pain. She said, “Calm down. The painkiller is being administered.” I noticed the drug flowing in slow motion into her system. I whispered into my friend’s ear, “The painkiller is on, you will be fine soon.” She looked at me and feigned a smile in all that pain. “We did it!” she cried. I held her face and said, “We wouldn’t have had it any other way!”

After what seemed ages, she was wheeled back into the ward. The mother waiting for her son outside the operation theatre waved to me and my friend as we got into the lift. Her parents greeted her with smiles and tears at the ward. I showed her the chemo port that was removed and the picture of the Fistula. The time was nearly 3.30pm. “How are you?” she asked, remembering my throat infection and fever. I was surviving on Dolo and kept the throat pain at bay with painkillers. “I’m all good,” I replied. She shook her head, as if to say, “Don’t lie!”

She slept through the afternoon. She then took a sip of the juice we got from home, and then some water. She had a tightly wound bandage on her chest. “This is pulling my skin. It’s hurting!” she complained. The doctor later explained that the removal of the chemo port will leave a vacuum in the chest area, which is why the bandage is tightly pressed against her chest leaving no room.

Her parents soon left the hospital and I gave her some porridge. “Can you give me some more? I liked it,” she remarked. I was overwhelmed. I quickly made her some more and ate some dinner. The nurse advised her to not walk to the loo, but she could use the help of a diaper. My friend was unable to relieve herself while on the bed. Until the doctor cleared her to walk to the loo in the night, she just held on. “Ah! I am finally relieved,” she laughed. And I laughed along, “Mad child!”

I was dog tired. I knew I’d sleep like a log. I put my phone on charge, kept her phone beside her and asked her to ring me if she needed help in the night. Before retiring to bed, the nurse came in to give her the antibiotic through IV. Her veins started freezing. “I can’t take it anymore. Please, please stop,” she yelled. I asked the nurse to check with the doc and make it oral. She came back and said that the antibiotic can be oral but she needs to give the paracetamol through IV. The nurse and I kept rubbing her hand gently as every drop of the paracetamol entered her vein. It took almost 40 minutes before things settled down and we hit the sack.

I didn’t know what hit me. I was out like the light. I woke up with a start at 6.30 am and the first thing I saw was my friend entering the loo with the nurse. I was fuming. “Why did you not wake me up?” I raged. “You were fast asleep. I even called you,” she stated. I looked at the phone and noticed five missed calls. I felt like a heel. How could I have missed these calls? How could I be this careless? I was overcome with guilt. I felt ashamed. I wanted to jump out the window.

I hugged her and I wept. Bitterly. She said, “I know you are tired. Please don’t cry baby. I don’t want you to ever feel bad. You are already doing so much.” My heart was wringing. I felt like I let her down, I slipped. She said, “Will you please help me brush my teeth and we can have coffee together?” I complied. We had coffee and breakfast and were all set waiting for our favourite - the oncologist.

“So, you got that out?” the oncologist asked her as he walked in, referring to the chemo port. “I even got this out,” my friend said, referring to the Fistula. “All that is remaining is for you to get out of India then,” said the doctor and we guffawed. 

My friend mentioned that her cannula is removed and that she is on oral antibiotics for the next few days. “The only painkiller they have prescribed is Ultracet,” she said. The doctor replied, “You are a walking, talking ambassador of Ultracet. What is there for me to tell you!” He sure knows how to lighten the situation. 

The surgeon, who performed the Fistula surgery, arrived to check on her. He ripped off the bandage and advised her to continue with the sitz bath. “It will be painful for the first few days. You can sit, stand and walk normally. Just make sure you do not constipate. You will be fine,” the doctor announced. The nurse immediately waltzed in with a wheelchair that had seating arrangement to facilitate a sitz bath. “I can’t do this. You need to hold me if I have to sit on this. This nurse is so fragile, her back will break,” she said, agitated.

The nurse and I decided to arrange a tub to be placed in the loo for her to sit. The height and the circumference were not convenient. We forced her to sit on that while we held her. “Are you both okay? Can I get off?” she asked every two minutes. “Shut up and wait here for at least 10 minutes,” I screamed. She kept quiet the last five minutes before we were done.

We soon received clearance for discharge from hospital after the vascular surgeon’s visit. He removed the large bandage and replaced it with a smaller one. He asked us to return after a week so the wound could be examined. I quickly gave her some lunch and packed everything while the discharge summary was being processed. Her father had come to escort us home. I tried looking for the woman who had accompanied me outside the operation theatre. The nurses told me that her son was discharged from hospital earlier that day. 

“Why not organise lunch for these nurses? They were so sweet to us all the time,” she suggested. I quickly transferred the money to the head nurse to organise a pizza party for all the nurses on the floor. We quickly left the hospital and got home by early evening. She was in pain, both near the chest as well her buttocks, but she managed to catch up with some sleep that night.

The next day was painful when she had to hit the restroom. She was in tears as the open wound was hurting her. There was no way out. She will have to wait it out. The week passed with sitz bath and painkillers and it was time for a follow up at the hospital. The vasco surgeon removed the bandage and stuck a simpler one, which he said could be removed after two days. He also said she can have a regular bath and not be worried about the water on the wound, thanks to a spray he gave, which will form a film over the wound. The GI surgeon said that her wound in the rear was healing well. 

“Let’s hope this is the last visit to the hospital as a patient,” I declared to my friend. “Let’s come back with a ‘thank you’ gift to all. You need to think of an appropriate gift,” she stated. As we headed home, she kept ranting out different gift ideas and I kept rejecting them all. They say the best advice may be found on the pillow, but I was glad to notice her sitting without the donut pillow for the first time after her encounter with Godzilla.

It’s a beautiful mind

“What happened? You seem agitated,” I asked my friend, who looked perturbed upon her return from work. “What if the client doesn’t like my campaign idea?” she said, concerned about the outcome the next day. “It’ll all be fine. Just be patient,” I said, giving her a comforting hug. 

An hour passed. We sat down for dinner. She wasn’t eating at all. I looked at her admonishingly. I knew she was still thinking about her client. “What to do? Mind is a monkey,” she answered. 

This monkey friend of mine hasn’t changed since.

We were set for the last session of Brentux. “Yes, after this, I’m done,” she said triumphantly. I gave her a fist bump as we sat in the car. Each visit to the hospital has been preceded by a small prayer that I chant 108 times as we drive for nearly 40 minutes from home. This time, my prayer was marked with gratitude rather than agitation.

Our oncologist was caught up. My friend and I were disappointed. Our next milestone - Fistula surgery. We thanked the doctors in his team. Keeping in mind the fear of secondary cancer, she asked them, “Can I retain the chemo port even while in Singapore?” They said no as the port will need to be flushed every month and doctors elsewhere would hesitate handling a port inserted by another doctor/hospital. 

“My Fistula has been behaving well. I can’t remember the last time that it turned into Godzilla,” she beamed, while adding that she’s considering postponing her Fistula surgery until her next review.

I didn’t react. We decided to take some time to gather information and celebrate this remarkable feat.

She craved her favourite - burgers the size of barn doors. “I am going to relish a burger after nearly a year!” she raved. As she bit into that burger, her parents and I were worried about the raw veggies sandwiched between the buns. “Oh my God! You people know I don’t have cancer right?” she joked, as she set aside those veggies to assuage our fears. 

Are we still treating her like a patient? I wondered. While I kept assuring myself that Tilotama is evicted from our beloved one’s system, that deadly evil kept haunting us, including her. 

My friend made her first visit to my home. She sprinted excitedly from my room, to the balcony and then to the kitchen. “I can now eat all the delicacies that your mom makes. Yay!” she yelled excitedly, as my mom dished out homemade pizzas from the oven.

As she went home, she visited her aunt and her cousin. She began video calling a chosen few from the family circles.

“I am somehow not comfortable when people say ‘it’s good to see you recovering’,” my friend revealed to me. “The reason is they don’t know how tough my journey was. They must be thinking I made all that up when I narrate the ordeal. What they see now is not what I was, right?” she explained.

I remembered the time when some in my family said, “Good to see your bestie back in action. Has she started going back to work? When is she planning to go back to Singapore?”

And I wanted to tell them this isn’t a spinal issue where you rest for a few months and then get active with physiotherapy sessions.

“There are so many minor issues to deal with. This is a disease that has set a new normal and nobody seems to understand that. If I have to start working, I need to first get my vision sorted,” my friend huffed. 

As a carer, I always fussed over her. We were at a coffee shop and she went berserk. Though she eats very little, she enjoys food. “Born to eat,” has always been her motto. As she bit into that quesadilla served with some raw veggies, I looked rattled. “Don’t look at me like that,” she said. And I immediately felt guilty for treating her like a patient. 

It’s a fine line between making her feel normal and acknowledging her struggle. “Sometimes, I fear for my future and I wonder if I can get back to being my independent self. Other times, I want to start fresh soon,” she expressed, stuck in a dilemma. 

Another day, she said, “I still need to fix my joint pain. I get tired when I exert myself. I need to keep going for reviews. This is never-ending. When will I get things done here and move? It’s still such a long way off. And I feel it’s never going to happen.”

I told you, her mind is a monkey. And I often get tongue-tied, not knowing how to address or put to rest her countless thoughts.

My friend’s sister always insisted that she meet a psychologist right from Day 1 of her chemo. After visiting three doctors, she was comfortable with the fourth psychologist, who was aptly recommended by her oncologist. My friend, at the beginning, kept saying, “What am I going to talk about baby? I’m not great with random conversations like you.” All you need to do is try expressing your fears, I replied. 

She found the right psychologist at the right time - just when she was hitting her life’s low in December. After four months, I asked her, “Do you still wonder what to talk to her, during your therapy sessions?” Her immediate response was, “No! I just keep talking. I like her. She’s good. You know, she’s sweet. She just knows the right things to say.”

Well, my friend is right. When she was worried about getting back to Singapore, while fearing a secondary cancer, the psychologist had told my friend, “I’m glad you have stopped worrying about Tilotama now and you seem to be looking into the future anticipating Tilotama - Part 2.” 

I realised how true this was. The mind sure needs a positive perspective, especially when the world is full of people, who have no idea what ‘cancer etiquette’ is. 

I still find people who come up to me to say:

“I honestly thought your friend wouldn’t make it.”

“Is her treatment done? Is her hair growing?”

Here’s the last straw:

“These days, cancer is like diabetes. Everybody has it.”

“Now, when I think about it, I feel like laughing. At that time, I felt like I was stabbed,” my friend said. This is a classic case of mind over matter, you monkey!