Dr Junia Deborah (Hodgkin’s Lymphoma Cancer Survivor)
Life has an uncanny way of challenging us when we least expect it, putting our resilience and strength to the test.
The Healing Circle is a place of sanctity for cancer patients, winners, and caregivers as they share their cancer journey without the fear of biasness or prejudice. Our Healing Circle is built on the foundation of love and kindness. Each audience listens with compassion and empathy. They honor each other's unique way of healing through cancer.
ZenOnco.io or Love Heals Cancer does not advise or amend or rescue, but believe that we have an inner guidance. Therefore, we rely on the power of silence to access it.
We welcome Dr. Rohini Patil to our Healing Circle Talk. Dr. Rohini is a gynecologist with an expansive career spanning over more than 30 years. During her career, she had taken various responsibilities ranging from a private practitioner to Chief Surgeon at reputed hospitals and also as Medical Officer in Central Reserve Police Force. She is a certified Lymphedema Therapist from ACOLS, USA, and also trained in palliative care. Dr. Rohini also been awarded the Prestigious Time Women's Achiever Award. She is a Breast Cancer winner herself.
Our prestigious guest, Dr. Rohini, is the discoverer of body image self-esteem issues within cancer patients. Apart from the trauma of breast cancer, Pain and side effects of the treatment, the patient has to deal with the feeling of losing a breast. This often affects physically, psychologically, mentally, and sadly, permanently.
The traditional breast prosthesis are too expensive for common population. Dr. Rohini Patil started a movement called Knitted Knockers India, where she and her volunteers make handcrafted breast prostheses and give them free of charge to those who desire.
Knitted Knockers India is committed to bring comfort, dignity and smile to women who have undergone a mastectomy, lumpectomy with radiation. Even though demand is high, Knitted Knockers India continues to focus on increasing the awareness and accessibility of Knockers, especially for women from rural areas.
I am a Breast Cancer survivor myself. It all started in 27 July 2002, when I was doing my regular Breast Cancer self exam. Later, I will explain the steps for breast self examination. Going back to my own Breast Cancer self exam story, I could feel something like an irregular rib.
After repeated steps for breast self examination, I found that it is not an abnormal rib; it is a nodule which is bony hard. I went and met my surgeon, and it was very difficult for him to palpate the nodule because it was deep-seated.
First, he said that no, I am not able to find out anything, so I took his finger and made it palpate at a specific place and said, See sir, it is here. That is how he was able to find that deep-seated small nodule. My Journey of Cancer then got started, and I underwent a mastectomy and four Chemotherapy cycles. Now, it's been 18 years to that.
Steps for breast self examination is uncomplicated. I'd say that Breast Cancer self exam is essential, and every woman should begin it from 20 years of age.
If you are menstruating, you should do the steps for breast self examination on the 7th and 8th day of the menses. That is a time when the breasts are less tender. If you are post that, you should fix the day of the month and each day of that month you should do it.
If you are pregnant and you don't have menses during that time, then again, you should fix a day and do it.
Because of Breast Cancer self exam itself, my Breast Cancer was detected early. That is why, I always say that follow steps for breast self examination religiously.
Men have breasts too, but the breast tissues are less. Men also can have breast cancer, but it is often detected at the very last stage. This is because they are not able to feel their tumor, which can be cancerous. They think any lump may seem to be something normal. Breast Cancer is less prevalent in men. However, compared to females, their death rate is high!
Whether you are a doctor or not, basic emotions and responses are same to entire humankind. It is important to accept them. A doctor knows what cancer is its mortality, mobility, reoccurrence.
Everything that they know make them stressed, but it's very important to accept it. The greatest challenge is in acceptance. Majority of the people are in denial phase that cancer cannot happen to them.
So, for me, the first thing I did was to accept my diagnosis. Then I accepted that whatever treatment I take, I would accept the same. My surgeon was confused that how was I able to accept everything so quickly.
I made him believe that I have accepted everything, and I don't want to waste my time in thinking much before my Surgery. I know that we should evaluate everything and give ourselves time, but we should not waste too much time on it. The key to survive Breast Cancer is to accept the disease and its treatment.
My cancer journey gradually ended, and I healed from it. I always felt that I am among those lucky people who get diagnosed at an early stage. It became my mission to ensure that every Breast Cancer patient should get diagnosed at an early stage. So, I started the breast self exam awareness camps.
People should be aware that they need to go for screening. They should be educated about the disease and its symptoms. So, I started doing screening on-site. This part included me visiting educational institutes, especially in rural areas. I increased my focus on these rural locations more, because screening is generally not available for them. They are not able to reach us conveniently. I went to one school and during the screening, I found some thickening in one of the persons. It was neither a nodule, nor a lump. My staff was with me, and we examined her. She was detected early; it was just a few millimeters' growth. She got operated and did not even need Chemotherapy. Her recovery very quick, and she was back to her normal life.
I was 36 years old when I opted for mastectomy. So, many surgeons were surprised that why at such a young age, I'd opted for a mastectomy surgery, especially when the lump size was small. It was my choice that I did not wish to have it again with me.
Mastectomy was accepted by my mind. It was easy for my body to accept it because mastectomy itself has negative effect on survivors mentally, emotionally, psychologically and socially. They seclude themselves, but for me, because of acceptance, I never underwent that phase.
Then I went for four Chemotherapy sessions. Everybody should know that yes, we have Hair loss in chemo, and chemo has many side effects, but we should look beyond that and think about the life that we have after that. Now, Breast Cancer Treatment is very advanced; many effects and Pain are now reduced.
You experience side effects of the treatment, but how you take it, matters the most. I had vomited a lot, and I used to experiment what I should eat or not. I loved pista ice cream, and I would say that now I know two tastes of it one when it goes in and one when it comes out!
People used to wonder and say that what am I blabbering; how you take it, is all that matters. I would have cried that I love pista ice cream, but I couldn't eat. But it is okay if you just aim at the benefits; it becomes easy for you to take the effects.
I kept trying new things for my appetite. Sometimes, I did not like water. Instead, I liked Rasna. So, I used to drink that. Even long after the Breast Cancer treatment, your journey does not end. You should accept; once you accept, your mind and body get ready to accept. This is how the relationship between our mind and body works.
My hair was long, and my son used to love it so much. So, I needed to explain him that if I need to stay strong, I have to lose my hair. I was totally bald, no eyebrows, no eyelashes. But trust me that is a temporary phase.
Your hair will come back. I did not like wearing a wig, but I tried wearing different scarfs in many new ways. Many people would think that she is undergoing cancer treatment, and still, she wears new scarfs daily. I would say, Yes, why not? Why not enjoy? I used to take it when I got operated, and also while preparing for my chemo. I never took a blunt cut, so had to take one before the chemo. I was able to do that also. One can realize that there can be so much of positivity while going through the cancer journey. I was able to do things that I had never done before.
Every Breast Cancer survivor experiences a fear of recurrence. I had decided to go for regular Breast Cancer check ups that my doctor had recommended. Even till now, every July, I get myself tested.
Breast cancer survivors should not worry too much about recurrence, because they disturb themselves while thinking of it. Reoccurrence and metastasis can happen, but if you are vigilant, you can catch it early. Also, you have treatment for it. You can reduce the risk of recurrence by following a healthy lifestyle.
My family was my caregiver. Their support was my most prominent pillar. Caregivers play an essential role. Your will power and people around you matter. Accepting the disease is vital for a caregiver too. When a caregiver accepts it, she / he plays additional role in supporting and motivating the patient.
When I was undergoing my Breast Cancer journey, I was the only medico in my family. So, I had informed my family that when I undergo chemotherapy, I will have mood swings. You will have to accept your mood swings, and let others accept it too.
I was a single parent to my child. So, I explained it to my family and son about everything. My son could witness me low on energy for the first time. I had told him not to be surprised if I got irritated without any reason. It would be a natural phenomenon for me to be irritated on one day, and calm the next day.
All these happen because you are going through a major phase in your life. These chemotherapeutic agents not only affect the cancer cells, but your mind also in total. They affect your hormones and your mental state. You have mood swings, and you are low on energy.
Your caregiver should understand these things, because how they see you also matters. I was lucky that I told my caregivers very clearly whatever I wanted. If you do not tell your caregivers what you wish, how would they offer you help?
This disease has taught me to accept help. It is not just you; everyone goes through this journey. A caregiver plays massive role in your journey. My eight year old son was my biggest strength. He taught me so much. He knew chemo, but he could not fathom the benefits of chemo.
I told him later that if mamma has to take chemo, then she needs to stay strong, and if she stays strong, she will lose her hair. He said that do not take chemo. But after I explained to him, not a single day was when he saw me bald, without eyebrows, eyelashes, and he did not smile at me. Every time he was with me, he used to smile.
I always wondered how he would accept me because when I used to look in the mirror, I had that typical cancer patient look. However, I did not experience a single day when he did not smile at me, or took his eyes off me.
I used to see myself through his eyes; I would say I am looking beautiful. I am thankful to all who were with me because they all together pulled me up from everything. I am also grateful to my patients; I used to find my happiness in their happiness.
You'll be pleased to know that I was working throughout my Cancer Treatment. Maybe that is one of the reasons why I am able to successfully speak at your Healing Circle Talk today.
I still remember Saturday, I had my excision biopsy, Sunday I was at home, and on Monday I was present in OPD. My surgeon was also present in the same hospital. He asked me that what happened, if there is any problem, etc. I said, No, it is my OPD time, and I have to see my patients. He could not believe that I had my excisional Biopsy on Saturday, and I was ready for my OPD on Monday.
After my surgery, I did a Caesarean section for my patient. I got the motivation to work because I always had a sense of responsibility toward my patients. Yes, I was going through my cancer phase, but then, I am a responsible individual. My patients had confidence in me; they were visiting me. Me being an obstetrician and gynecologist, some women were also booked for delivery.
So before my stitches were removed; I did cesarean for my patient. When I was with my patients, I would always think of my patients; there was no distraction or disturbance at that time. My patients included infertility patients; when their urine tests would come positive, I would feel the happiness on their faces.
I continued my work throughout my Chemotherapy sessions. On Saturday, I used to take chemo, on Sunday I would be at home and on Monday at OPD. Keeping myself busy and spending time with my patients helped me a lot in my cancer healing journey.
When someone goes through mastectomy, they actually have lots of requirements. Somehow, people do not understand that. Post-surgery, I used to wear a saree. I was so occupied in different things that I totally forgot about prosthesis; it did not come in my mind.
When I went for a second opinion, the first thing the doctors asked was why I had gone for mastectomy; and the second was why I had not opted for a prosthesis. It then clicked me that I had forgotten about it! Later, I did get my prosthesis done. It was a very expensive procedure, but anyhow, it was a gift from my brother. I told you earlier that I had lovely caregivers and my family's support was my pillar.
I am certified in Palliative Care. So, I used to meet the rural population. I realized that they are uncomfortable; they seclude themselves socially. During those awareness camps, there was a lady who met me.
I thought there might be some problem because she was a cancer survivor herself. I assured her that it was okay; requested her to talk to me. However, she told me to first check all the cancer patients; she would speak to me only later.
Later when we spoke, she disclosed to me that she had not stepped out of the house for ten months, because her clothes would not suit her now. She did not like mixing socially, as she was worried about how people would see her. She did not know about the option of a prosthesis.
It was hard to explain prosthesis to the rural population. Also financially, it was difficult for them to afford it. The thought kept playing in my mind. I was certainly not in a condition to donate silicon prostheses breast to everyone, as it was financially challenging.
So, I used to keep trying different things. By this time, my son was studying in the United States. So, I often traveled to USA to meet him. At that time, I used to meet the American cancer groups.
So, while meeting the survivors, I learnt that majority of them are not using silicone breast prostheses. Instead, they are using knitted knockers. Then I contacted the founder of Knitted Knockers USA. I asked him to teach me because I used to do knitting in schools, but I want to resume.
So, I was taught how to make knitted knockers. So when I came to India, I searched for a cotton yarn, and started making knitted knockers here in the country. Initially, we were just three people. Now, we have a group of volunteers, who make these prostheses items.
When we give these knitted knockers to government hospitals, the ladies are in tears. They say, we never thought someone would think this for us. According to natural human tendency, people want to be in their natural selves. It gives me so much peace when I see happiness on people's faces when they take breast prostheses.
We now have sub-centers of Knitted Knockers India in Pune, Bengaluru and Nagpur. We provide a breast prosthesis for free.
Everyone should have a healthy lifestyle, which comprises of diet, exercise, and most importantly, sleep. If you control these three areas, it will make a very good lifestyle.
First and foremost, the exercise part everyone fears
Post-surgery, Breast Cancer exercises are as important as Breast Cancer self exam. Exercising brings back the range of movement, flexibility and elasticity. It also plays a vital role in fighting with fatigue; it increases your strength, self-esteem.
It helps in preventing and decreasing the risk of lymphedema. Strength training and cardio exercises are essential. Most important is Yoga. It is not only the poses; it is a way of life. Diet, exercises, stretching, breathing, and meditation your mind, body and spirit connect through it. Yoga puts you back in your life.
You should listen to your body. Muscle-strengthening decreases the risk of lymphedema. Obesity puts you at the risk of having Breast Cancer and recurrence, so fat should be reduced. Exercise also helps in your insulin sensitivity.
Diet plays a vital role. It is not only what you have, but the mealtime should also be under consideration. If you have a late meal, whatever you eat is not consumed, and it goes into the store, and it is always a fat. So you should have a proper mealtime, and whatever you eat, you should have a balance.
After the diet part, eight hours of sleep is essential because there is a hormone called melatonin, which is secreted when you sleep (that is, only a nighttime sleep). The culture of the younger generation is 24/7 on; that is where the problem is.
This Melatonin hormone only secretes when there is no white light stimulation, that is, only at nighttime. People remain awake the entire night; they and say that we will sleep in the daytime and cover the sleep, but Melatonin is not secreted in daylight. Melatonin has a role to play in Breast Cancer protection; it also helps in reducing the chances of Breast Cancer reoccurrence.
Many people misinterpret Palliative Care as the end of life care. But it is not the end of life care; in fact, it is only the beginning. It helps you from the onset of your treatment to the end, and beyond the treatment.
When patients undergo chemo and radio therapies, the main things are Pain management and psychological well being. In Palliative Care, a caregiver is trained on feeding and care. These play significant roles.
Palliative Care is a holistic way of being with them, and I want to be with them. So, I got my certification in palliative care.We try to make the patient's journey as easy as possible. Palliative Care is about improving the quality of life; it is crucial to spread Palliative Care awareness too.
Firstly, always find 'Can' in Cancer. There is a 'Can' in cancer; it is not that dreadful. If you are able to find that 'Can' in Cancer, you will be able to fight and win it.
Secondly, 'Prehab' is always better than Rehab, so always have that.So, always get your habits in place first.
ZenOnco.io and Love Heals Cancer thank Dr. Rohini Patil for sharing her awe-inspiring journey and Breast Cancer winner and expert in The Healing Circle Talks.
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