How I got diagnosed
It all began with just a simple cold and constant headaches, migraines and a cough that wouldn’t go away. I had shortness of breath along with these symptoms, hence I visited my primary care doctor. They prescribed me medication but that didn’t work.
One day when I went to pick up the phone, I realised that I had lost hearing in my right ear! I was alarmed! That was the one symptom that really alerted me to find out what was wrong with me. I went to see an ENT doctor; they took a hearing test that showed that I had complete deafness in my right ear. After multiple studies and a number of tests they couldn’t find anything. They thought that it was probably due to a really severe infection or allergies, but I continued with the symptoms of coughing, a lot of shortness of breath, even having cough attacks to the point where I felt like I couldn’t breathe for a few seconds.
Then a year after all of this I started having random double vision, and that’s when I decided to go to the emergency room where they did an MRI scan of my head and neck. I guess they missed the tumour in the MRI and they sent me home. Then the next day when I was at work, I got a call from my doctor telling me that they had found something positive in the scans and they needed me to come back immediately. When I heard that I immediately dropped everything I was doing and rushed to the hospital.
My husband was with me at the hospital when they told us that they had found a tumour but they didn’t know what type of tumour it was. So they admitted me into the hospital and after hours of testing and lab work
I was told that I had a brain tumour and it was at a very complicated and risky location. They told me that they would need to prepare me for surgery and the preparation would take two months to make sure that this is safe for them to remove.
It was hard for my family and me to hear about this cancer, especially because I was 25 years old and I never had any health issues aside from this. Though it was nice to have my family there with me comforting me and also the way the doctors came in and they sat with me to explain everything.
I had an 18 hour long brain and neck surgery. But the doctors were not able to remove all of the tumour. They were able to remove most of it, but the part they were not able to operate on, they couldn’t remove. Two months later I had intensive therapy because after surgery I had facial paralysis on my right side, I had difficulty swallowing and I couldn’t eat, my tongue was deviated to the right.
A month later they decided to do 33 rounds of radiation directly in this area and they had to schedule me for two weeks of chemotherapy. But, unfortunately I was only able to complete one chemotherapy one week of chemotherapy because after the one week my body just started failing me. I was very nauseous, very weak, and I had to be hospitalised.
The radiation didn’t shrink my tumour. Later my oncologist and they told me about this new treatment called Lutathera and it was a radioactive targeted therapy. I gave it a shot as I felt like I had nothing to lose. I had four infusions of leukothera.
The treatment was definitely the hardest process for me in my life. I started journaling. My family and friends were there for me. I didn’t know what was going to happen, those moments were uncertain. All other cancer patients sharing their journey gave me a lot of hope.
My emotional wellbeing
I spoke to my husband; I spoke to my Mom; I spoke to my therapist in the hospital. More I spoke, the more words I got to share. My therapist advised me to start journaling, so I started writing. Instead of focusing on what I couldn’t do, I started focusing on what I had. I kept praying. The prayers gave me strength to keep going.
Lifestyle changes I made
I learned to slow down, taking one step at a time. I was not taking care of my diets before thinking I was healthy. After this episode I started watching what I was eating; I added more fruits, vegetables and fluids in my diet. I started observing my feelings and talking about it with my family and friends.
I started being more present. I started meditating and exercising everyday. I continued with my journaling and walking even after the treatment was over.
A Parting Message!
This type of cancer is rare. It’s a long journey and a whole village needs to be involved in it. My faith was greater than my fear. It’s okay if it doesn’t work out, but we don’t need to be hard on ourselves.
Forgive yourself; forgive others; accept everything. I felt my life was ending. But now I feel I have changed a lot. I learnt how to live during this time. Earlier I was just working, not really living.