Caregivers are the silent backbone of any cancer journey. They sacrifice their own health, taking care of their loved ones. But caregivers must take care of themselves during the grueling cancer journey since they can caretake only if they themselves are healthy in the first place.
To Stress the importance of the caregiving journey, this week's unique Healing Circle was on "Acknowledging the Role of Caregivers, joined by caregivers who took care of their loved ones during their cancer journey.
About the Healing Circle
Healing circles at ZenOnco.io and Love Heals Cancer are sacred platforms for patients, warriors, and caregivers, where they share their experiences without any fear of judgment. It is mainly based on the foundation of love and kindness. The healing circle's purpose is to provide everyone going through the cancer journey a space where they do not feel like they are alone. We listen to everyone with compassion and curiosity and respect each other's different ways of healing.
About the Speakers
Anagha - She was the primary caregiver in Mr Mehul's cancer journey, a stage 4 throat cancer survivor. Currently, she lives in Ohio and works at Cardinal Health in the field of Data and Analytics.
Nirupama - She was the primary caregiver for her husband, Mr Atul's cancer journey. She has done courses in Ashtang Yoga,Advanced Pranic Healing, and Siddh Samadhi Yoga. She looks to find the beauty in every situation and has used her managerial skills as a homemaker in her caregiving journey.
Abhilashaa Pattnaik - She was a caregiver to her mother, who had stage 3 Cervical Cancer. She expired after three years of her treatment. Abhilashaa is the founder of Shining Rays, where she plans to organize ramp walks for cancer patients to make them realize that they are still beautiful after the cancer journey.
Shyam Gupta - He was a caregiver to both his father and wife. He has dedicated his life to helping the society through community services.
Manish Giri - He was a caregiver to his wife, who had stage 4 Ovarian Cancer that had relapsed thrice. They both had an in-depth conversation about her wishes, how she wanted her daughters to get married, and what all needs to be done when she is not there with them. Since their childhood, they had known each other; when Manish was in 8th and his wife in 7th grade. He believes that because of the deep conversation that he had with his wife, he is relaxed and knows about the responsibilities he has and what he needs to do after losing his wife.
Anagha:-Mr Mehul was diagnosed at stage 4 of cancer, and you were alone in the US when the diagnosis was made, so how did you manage to be courageous in the face of cancer to look for better treatment options immediately?
Firstly, when I heard the news, my reaction was that of disbelief. No one can believe it when something like this happens all of a sudden. The second reaction was anger; I was angry that something like this has happened, and both of us knew that it had happened because we had invited it into our lives. My anger carried me forward in the first few weeks of dealing with cancer. I did not start looking for alternative treatment options immediately. Still, my initial step was to talk to doctors in India to understand the treatment plans and the treatments available for him and the chances. Talking to the doctors in the US was the second step because I was not getting all the answers I was seeking from the doctors in India.
You always asked your husband to stop smoking, but he did not. When you came to know that it's cancer, did you have any anger that even after warning so much, he did not stop, and everyone had to suffer in the end?
Yes, I did feel extreme anger, but I didn't show it to him because he felt remorse himself and realized that it resulted from his own actions. It was not the time to hammer that thing at him. It had already happened, so we needed to take action on how to go forward.
Being a working woman, what will be your advice to the caregivers on how they can manage to take care of their loved ones while going to the office too?
When you become the primary caregiver, you also become the family's primary earning member since your spouse focuses on healing themselves. For us, any form of insurance or coverage we had was also linked to the fact that I had to continue to do my work. That realization helped me understand that both sides are important; if I want him to get better, I needed to focus on my work as well. I started to box it in, and we were fortunate enough as the hospitals provided us appointments late in the evening so that I could do work in the morning, come home and get through whatever things that needed to be done, and then drive to the hospital, take Chemotherapy and come back home.
When I was at work, I focused on my work, and when I was at home, I focused on him, and that's how I managed those nine months of the treatment.
At any point, did you feel frustrated that you are taking care of everything? Was it ever too much to handle, and you wanted to give up?
No, I couldn't afford to feel so because we both were alone in the US. We did not have any family or circle to rely on. It was only both of us, so there was no space for frustration.
It's really tough to hear things like "your loved ones have limited life span. How did you react to such statements and calm yourself down?
Mehul is a very positive person. He never believes that anything bad will happen to him, and if in case something bad happens, he is confident that we can come out of it. I often joke and say that he was a better cancer patient than a common cold patient. When the person you are taking care of has so much positivity, it rubs on you. Even when the doctors say, "it is one last thing we can try, and if it works, then we will have more options, and if it doesn't, then you have one month to live. it didn't affect us that much. We thought, okay, there is an option, and we would try it out. We never thought of what if it doesn't work; we always focused on what we can do.
Both your wife and father were diagnosed with cancer. So what was your experience when you got to know about the diagnosis of both of them?
The first time, it did come as a shock. Before realizing that my wife had colon cancer, I was suffering from colitis. I had known how it was developing, but the fact that she had cancer came as a real big shock. It was taken up as a challenge, and we did our best. For four years, I was looking after her, and after four years, there were 2-3 surgeries, cycles of radiation, and a lot of chemotherapies, but then she left for her heavenly abode.
It was a big shock for my father, but one has to take everything in his stride and live with it. It was such a sudden thing. I took him for some skin tests as he complained about some allergies, and there, the doctors asked to do the Blood Tests and found that the leukocytes had shot up. He was diagnosed with Blood Cancer. We did the best we could do, and he lived for six months after that. I remember when my father passed away; I was with him, and he had almost gone into a coma. I held his hand for almost 8-10 hours, lying next to him, and I could see a small twitch in his hand after ten minutes, and that was the signal that he appreciated someone holding his hand.
We should at least see that the patient does not suffer due to the Pain of cancer or the Pain of not being understood. Serve everything with joy so that at least the other person's Pain comes down to that extent. I never allowed even for a moment to make my wife or father feel that they are a burden. I learned to do everything with joy so that their journey gets a bit easier. Apart from the materialistic needs, I still feel that how much love we can infuse into the caregiving does affect the patient. If our service is in such a way that we are not servicing him/her, we are serving ourselves because whatever we do is only going to impact ourselves. We could have been at the other end, but we should make patients realize that we are there with them, we love what we are doing for them, and everything we are doing for them is out of pure love. The moment the heart and love get into serving, the other person also feels better.
It's more than seven years now. I have got more and more involved in trekking, reading, and then later, I got hooked to the serving of others. Now I am in Vipasana. It is the sense of fulfillment that I did whatever I could do, and there was nothing more I could have done. The void is there, but it has been filled up with so many things. Service has been a motto, and I am trying to help and serve people in whatever way I can.
Do you have any regret that you could have done anything different for them?
No, I don't have any regrets. I sleep very peacefully, which is proof that I don't have any regrets. I did the best I possibly could have done, and there is no room for regrets.
Your message to people who are going through the caregiving journey now?
It shows in your acts and face. Serve your loved one with joy and love. Make them feel so much comfortable that they do not feel dependent.
Mr Atul had three relapses, and you might have asked why it is happening again and again. How did you deal with the frustration and anger?
When it was first diagnosed, it came as a shock, but I was not worried because having lived in Japan for so many years, I always thought cancer was a treatable disease. His first diagnosis was in Tokyo when the doctors told us the gravity of the situation and what they are planning to do, including removing his kidney and femoral nerve. I could not show my emotions to anyone and accepted everything. He was always there, and I must say that he was actually my caregiver. He was taking care of everything so boldly; we both knew that we had to be strong for our family. It was an acceptance for both of us, and then things came on their own. We met a survivor who inspired us a lot. There was a very strong faith in God. I believe in Lord Krishna a lot, and I feel he helped me throughout our journey. I always had hope that everything will be alright.
Later, when we were following a holistic lifestyle, the cancer relapsed again in the lungs, which came as a big shock for us. We were lost, and we asked the doctor why it was happening again and again. The doctor explained that it was because of the type of cancer that it was relapsing. Accepting the situation was our only option, and we fought against whatever was thrown at us.
One of the biggest things that helped us was talking to a survivor. We were already 90% positive, but the survivor made us 100% positive.
What would be your advice to the caregivers who are going through that journey right now?
I can say that everyone's journey is different, and we all have our own ways of dealing with things. The most important thing that helps the patient is positivity and acceptance. We all think about why it happened, but we have to accept it and move forward positively. Have faith in the doctors.
How hard was it for you to have an end-of-life conversation with your wife when she knew and accepted that her end was near?
My wife was much stronger than me. In the last six months, she had accepted that she would not be staying for long. She started telling us about her wishes for everyone. I was not comfortable talking about all those things, but she started discussing what we needed to do when she was not there. It was the lockdown period, so we were lucky as we could discuss everything at home itself. Otherwise, I would have been busy with my work, and our children would be busy with their studies. The lockdown was a blessing in disguise, and our closeness and bonding got deeper.
The caregivers should never show their fears in front of the patient because they are affected by it. The most important part is to keep the patient more and more comfortable.
She used to have sleepless nights, so I used to stay awake with her. The end of life conversation was the only topic we had to talk about. However, I used to tell her that there was no need to talk on that topic because she would still live for the next 10-20 years. But since she was very adamant about it, I talked on the topic. I thought that if what she is saying happens in real, I would repent it for the rest of my life. I realized that I was fooling myself that she would survive for more years because I could see her health deteriorating.
At last, she said that she didn't want to go for any further treatment, and as I wanted to make her journey comfortable, I didn't force her. She also started the discussions about what we had to do for our daughters. I thought that since she would not be able to see our daughters' marriage, at least talking and imagining about those moments could give her happiness. I am now trying to fulfill all those wishes that we had discussed.
How would you share your experience explaining the importance of end-of-life conversation and how somebody can approach that?
You need to accept the disease and the condition of the patients. When I realized that the countdown has started, I started cutting myself off from my wife; not physically, mentally or emotionally, but I used to imagine myself when she would not be with me, though she was right in front of me that time. I used to do it ten minutes or half an hour a day. We try to escape the situation but should remember to look at both sides of the coin.
How does the fashion shows you are arranging help the cancer patients in their treatment journey?
I have dedicated my life to cancer patients. I love to do anything I can for them. I am a fashion designer, so I have linked that too with cancer. I feel that just as love can heal cancer; likewise, fashion can also heal cancer and boost the confidence of cancer patients.
Initially, when I asked them about the fashion show, they used to be afraid. But when they said yes and knew that they need to come on the ramp, they started yoga, meditation, following a good diet, and taking care of themselves. I have seen the diversion in their mindset, and they have become mentally strong.
I got a call from a Breast Cancer patient who had her Surgery. She was suffering from domestic violence, and I felt very sad for her. She called me and asked if I could do anything for her; she did not even have anything to eat. I started talking to her and gave her a separate caregiver who could take care of her and her daughter, and she is much better now.
What advice would you want to give to the caregivers?
When the end product is well, everything is well. Caregiving is an invisible art that can be recognized only by the receivers. Caregivers should take care of themselves and heal themselves. There must be unconditional love and care. The patient must feel that he/she is not alone and have their loved ones with them.
Letter from Caregiver to the Cancer Patient
Our life has changed seemingly from one moment to the next, and it feels as if we both are grappling with how to deal with a cancer diagnosis and how to relate to each other. This is a new journey that we both will be walking together now. All of a sudden, I am your caregiver, and I want to do whatever it takes to protect you, to comfort and reassure you, and to make your life as healing and stress-free as possible. I want to surround you with love, to listen to you, to laugh and cry with you in this journey. I think of my caregiving as an amazing opportunity to show you how much I love you. I am grateful for the gift that I can care for you physically and emotionally.
There are many practical ways that I can provide support; I can help to prepare medical appointments, go with you and take notes, talk to doctors, organizing your medicines, keep a calendar of all the appointments, provide or arrange transportation, doing house-related work, provide updates to family and friends on your health, assist with any related paperwork or financial support, do research about cancer or find books that you would find helpful, meditate and exercise together, cooking good meals for you and planning some outings which will give both of us some break. To be a good caregiver, however, I do need your help as well. To begin with, I would like us to figure out who can be a part of your support team. Although I would like to do everything,I know it would jeopardize my health and well-being, which would turn me into an ineffective caregiver. There are many people who love and care about you and are also impacted by your diagnosis. Let's find ways for them to support us both; it will make them feel better to know they are doing something useful for you and will reduce my Stress. For a support team to work, we need to identify what all needs to be done. If you don't know how I can support you, please tell me so that it gives us a place to start, and we can figure it out together as partners. If you hesitate to ask anything because you don't want to burden me or make my life more difficult, please understand that the lack of information is much more stressful and overwhelming. It would mean that I would need to second guess how you are feeling or anticipate what you need. As a caregiver, I also need some feedback about what kinds of things are working for us or not working. Your needs will change over time, and it's important to let me know when they do. Finally, my beloved, we are on separate journeys. Since I won't be able to understand completely, there will be times when I am exhausted, confused, angry, upset, frightened, or hurt because you are not behaving in ways you used to, or your body is not responding the way we want it to be. But do not forget that those are the moments that speak the depth of my love and caring for you.