Wednesday, March 30, 2022

“T for Tuberculosis”- word building and life-defining, the Pramadh way

 


                             17th March 2022, The evening we will always remember and be grateful for


“T for Tuberculosis”, said Ira thrilled that she could remember the word she had learnt from Papa.

This blog piece has been a difficult one to start writing. Difficult because too many thoughts, the dilemma of how much to share and how to share. Also, is there a need to share so much personal information? But then, I decided to write this in the hope that this will help someone be cautious, be aware and understand, because there may be others like us. Can a mere 1500 words sum up what we went through, the fears, the pain and the moments when we told ourselves, “One day at a time”. We are immensely grateful that we lucked out at going to the doctor at the right time. We are immensely grateful for the doctors who were with us the last year, grateful for family and friends who were there to joke and laugh with, wonder and share, be that immense silent support on tough days and help us find semblances of normalcy on days which seemed uncertain. The storm has passed, some unruly waves remain and we are tiding through them, one day at a time. This blog is my account, what I felt as a partner, what I saw him go through and how we dealt with it. Prashant is a man of few words, but silences speak too.

It is a year since Prashant and I got our first bout of Covid and isolated at home, while Ira stayed with my Mashi-Mesho and my Parents for 17 days. We had not imagined that the roller coaster ride had just begun. Ira got covid In April and recovered at home, with adequate rest, a summer camp to keep her occupied and distanced games.

Beginning of May, Prashant felt some pain, a slight discomfort in swallowing and a bit of a sore throat. A person who never does OTC meds, he met our ENT doctor. An ultra sound later, they discovered that he had inflammation of the thyroid and some nodes in the thyroid and a prominent one in the neck. Doctor said that they are seeing this in post covid recovered patients and gave him medication for the pain; and was advised a follow up scan in 4 weeks. I am deliberately not going to write the medical terminologies that were shared with regard to the diagnosis because every case differs and I know we all love google.

Four weeks later, he had to undergo an Ultrasound of the neck, followed by a CT scan of the Neck, Chest and Pelvic region, along with a range of blood tests. The CT scan showed nodes in thyroid, neck and lungs. He underwent a biopsy to confirm certain possible diagnoses. When we sat at the hospital looking at that CT report, Prashant began counting the nodes and after a number said, I think I should stop and walked into the biopsy room. I was with him at the hospital and I remember carrying Jahnavi Barua’s Rebirth to read. I must have read about a page or 2 while he was undergoing the procedure. Post the procedure, he told me how they took about 12 samples, how he was aware of what was happening, how he felt a bit woozy at that point due to the anaesthesia and then drank Appy that the hospital gave him. My throat was parched and I sat listening to this man, bewildered at his strength and worrying I may begin to bawl at any moment. However, let me take this moment to tell you an inside information. I am an experienced care giver and can manage hospital formalities like a pro, including negotiating with nurses and asking probing questions to concerned doctors. My Baba’s surgery and Prashant’s three knee surgeries are witness to that. Post the biopsy, Prashant came home with bandage patches on the neck and spoke to Ira about what the doctors did. She knew that they had found some nodes in his neck. What followed was 5 days of excruciating waiting period for the reports.

The reports confirmed that Prashant had Tuberculosis. A close friend said that this was a good thing, given the other possibilities. Guess we all try to find that silver lining in the cloud. His ENT did say that we had to continue to closely monitor the thyroid nodes over the next few months and referred us to an infectious diseases specialist. We thought ok, let us meet the doctor start medicines and that’s it. Little did we know that these medicines were for minimum 9 months, we had to test if the TB was resistant type because then the course of treatment would differ; there were expected side effects, he had to undergo multiple tests every few days, some vital functions had to be closely monitored. Ira and I also had to get a Chest Xray done and an important blood test for Ira immediately. Thankfully, our tests were clear. Prashant underwent some more tests and then his medications began. He had to immediately isolate for the next 4 weeks. This was really tough. We had just come out of two isolations but nothing prepares you for moments like this. It was when Ira also began her school, an alternative learning community that we found. Her initial days and she would be excited to share it all with Papa. The long distance conversations and games with N95 masks began. Prashant had some side-effects with the medicines. However, we have a brilliant doctor who had prepared us well. The round of regular tests and appointments began. The initial few weeks it was stressful when the results had to come. We tell ourselves it will be okay, but then we fear to feel too hopeful also. We celebrated Father’s day while Prashant was in isolation. It was during the course of this time that one day while playing word building, Ira said, “T for Tuberculosis”. Post the reports, Prashant had a conversation with Ira and prepared her for the months ahead.

10 months down the line, Prashant’s tests and scans are clear and the TB is cured. There are smaller follow ups on some vital aspects to be done, but like I said, one day at a time. All these months, he consulted the doctor online. This time we finally met her in person. She helped us understand how this may have been triggered with the immunity going low post covid. She also was cautious as we got the second bout of Covid this January. She has asked us to be wary and observant for the next two years as that is the remission period for TB. So, crossing all fingers and toes. The evening we got to know this, we went out for dinner to celebrate this moment of relief, hope and happiness over some Italian food and desserts.

The course of these ten months have been emotionally exhausting for us in different ways. We were shocked to see that there was so much going on inside, while he had no visible TB symptoms. But we will always be glad about how aware he is of his body and that he went to the doctor that morning. For someone like him, who is very rational, pragmatic, follows instructions; and believes and chooses to only share very few things; he even went for all the intermediate scans and doctor appointments alone. For someone like me, who every moment was on high alert, wanting to know if he is feeling ok. A little sneeze, cough or clearing of throat, a bit of tiredness and I would keep asking if he was ok. I may have even become like a helicopter spouse. There were nights when I woke up to just hear him breathe, and if someone snoring gives you immense happiness, I was there because I felt he was soundly sleeping. I had many quiet days and what kept me sane was work. Will always be glad for friends and colleagues at work- both my training space and college. Not many knew what we were going through and we hold on to the ones who did and stood by like the strongest pillars of support possible.

Prashant has a huge pain tolerance and I know this was hard for him. The number of medicines that he had to take, the effects they had. But he never cribbed, not once. He (I guess) found solace in his work, the carefully planned holidays we did, in the books he read and all the netflixing. We all have our ways to fight our battles and He did it his way. One of his friend said that why were things happening to him one after the other and all we could do was wonder. Prashant had no co-morbidities or health issues prior to the covid bout which was quite bad for him. But post-mortems in moments like this don’t help, it is important to look ahead and deal with it. Having said that, I did all the post mortems in the head and out loud too. Didn’t I say, we all have our ways to deal with things. Ira was concerned for him and she knew somedays he was in discomfort. But after a point, she almost forgot that he had TB till we did the final set of tests and he told her he is cured.

So, next time we play word building and she says, T for TB. We will only be glad that it doesn’t define our present but is a time in the past.

#Pramadhs #Us # Love #Gratitude #Ira #Iraisms #IraAtSeven #StoriesAtSeven #Conversations #Covid19 #TB #Reflections #ExistentialThoughts #PragmaticHim #PostCovid

Thursday, March 3, 2022

Art and Story on World Wildlife Day, the Ira way

 




Today is World Wildlife Day. Papa asked Ira if she would like to make a drawing on wildlife and she decided to draw her favourite animal and write a poem. 

Later in the day, she read the following article on Mongabay India- https://india.mongabay.com/2022/03/fantastic-beasts-and-why-plastic-is-bad-for-them/

Post that, she did another drawing and this time there were dialogues, just like she has seen in comic books. 

Discussions on every day things and what is happening in the world when seen through the eyes of an almost 8 year old can seem very fascinating. Sometimes the strongest messages come out through the simplest words. 

#Ira #Iraisms #WorldWildlifeDay #IraAtSeven #StoriesAtSeven #Parenting #Pramadhs #Learnings #EverydayConversations #Reading #ArtByIra #PoetryByIra #StoryByIra 

Rima, you are deeply loved

                                                  Rima at Infinitea, Bengaluru Dearest Rima, I wish I wasn’t writing this letter to you. B...