The emotional journey of breast cancer survivor Mrs. Swapna Rao

Mrs. Swapna Rao comes across as a happy and cheerful person. Nothing about her suggests that she is a cancer survivor. Living with cancer hasn’t been easy for her. It never is. But she chooses to face what life has thrown at her and make the best out of it.

Cancer is not uncommon. As the number of cancer cases is increasing every year in India, there is hardly anyone who doesn’t know a person suffering from the condition. And when it hits you, it turns your world upside down. It can be very traumatic to be diagnosed with cancer. Living with cancer is a big challenge, but it certainly doesn’t need to mean the end of the world. Whether you are waiting for your test results, have just been diagnosed, are going through treatment or worrying that cancer will come back (recur), be aware that cancer is treatable, and many survive and live a near normal life too.

Coping with cancer diagnosis

Mrs. Rao first felt a lump in her armpit while doing pranayama (a deep breathing yoga technique). Her first reaction was denial. After all, she had undergone a master health check-up just a couple of months back, and her test results were nothing to worry about. She postponed going to the doctor and went ahead with her preplanned vacation abroad. But she noticed that her lump had almost doubled in size by the time she was back from her trip. A visit to the doctor and some tests later, her breast cancer diagnosis was confirmed.

Feelings of fear, anger, shock, disbelief, hopelessness and guilt may crop up when you are told you have cancer. Your mind may become very negative and anxious. You may not be ready to hear that you have cancer. No one ever is. But you need to resign soon and accept it. ‘I don’t think it sank in,’ says Mrs. Rao who was diagnosed with breast cancer on women’s day. ‘After the diagnosis, it was like a whirlwind. There was no time to think. I didn’t want to know what stage it was. I blanked my mind out. I went to the women’s day celebration and danced there. I just refused to think about it,’ she adds. Relax and tell yourself that it is not the end of the road. Start developing strategies for coping with your condition. No two people are the same. Everyone has their own way of dealing with cancer. Find out what works best for you.

For Mrs. Rao, it was pranayama. She had been practising pranayama for a long time and that gave her the inner strength. ‘There should be no sympathy, no tears. That’s not going to help me in any way,’ she recollects telling herself. Meditation is vital to maintaining your peace of mind. Try some meditation and other relaxation techniques to manage your stress. According to research, meditation can ease anxiety, fatigue and pain in women undergoing breast cancer biopsies.¹ You can find solace in yoga. The power of yoga is such that it can calm and strengthen your mind to mentally prepare you to fight the disease. It will help you heal emotionally and physically.

You don’t have to cope with it alone. Confide in your near and dear ones about your disease. Tell them you expect their full support and understanding. Their support will help you get through it. ‘I didn’t want to stay home because I knew I might cry and that would affect my husband. I had to share it with someone. I couldn’t talk about it too much to my husband because it would totally destroy him. I was worried what he would do if something happened to me. So I told two of my friends about it,’ reflects Mrs. Rao. She and her husband broke the news to their son after few days. The unknown and uncertainty bring fear. So make an effort to understand and maximise your knowledge about your ailment. Getting all your facts right will help you face your fears about life after cancer. It will also help you take the right decision about the treatment options. Don’t go into a shell once and cut yourself off from your social circle when you discover you have cancer. Make connections. Join a self-help cancer support group. Discussing your fears and apprehensions with others will make you realise that you are not alone. It will also help you exchange advice on treatments or ways to cope.

Seek professional help if you have trouble sleeping, feel depressed or have suicidal thoughts. But not all who came to sympathise are sensitive about the condition. Sharing her experience, Mrs. Rao says, ‘There are some things which you are not supposed to ask when you come to sympathise or offer help. Either give positive examples or best is you don’t talk at all. Some people wrote me off. I realise they mean well, but they don’t know how to talk.’

Life during treatment

It’s a misconception that cancer means the end of life. If the condition is diagnosed in the early stage, it can be treated successfully, and the quality of your life can be improved. Be regular with check-ups, follow-ups and investigations. Inform your oncologist if you are considering alternative therapies. Mrs. Rao underwent surgery 15 days after the diagnosis. She can’t believe from where she got the superhuman strength to be very calm and cheerful on the day of surgery. She broke down once just before the surgery when alone in the OT. ‘I had held myself together for so long, and I needed to cry,’ she points out. After that, it was all medicines and anaesthesia. After surgery, she had to go in for chemotherapy. But before that she got her hair cut. ‘I thought let me look pretty before my hair becomes very short,’ she says with a gleeful smile. She underwent six chemotherapy sessions. Her friends were a great support. They stayed with her in the hospital because all her close siblings were abroad.

The prospect of undergoing chemotherapy for a cancer patient can be disturbing and painful. When you undergo cancer treatment, you endure a lot mentally, psychologically and physically. The experience of insertion of port for delivering chemotherapy drugs was very unsettling for Mrs. Rao. Finding her surgeon’s attitude a little barbaric and wishing that the surgeon would have been a little gentler, she says, ‘I had to go through the insertion of the port into the large vein leading to my heart. The doctor cut through my skin under the collar bone under local anaesthesia. I could hear her saw through.’ And in one instance she recollects, ‘During my breast MRI, I had to lie on my stomach, and my face was against a pillow. And when I went through the tunnel-like thing, it was so hot, and I couldn’t breathe.’ The rigours and side-effects of the treatment can leave you with very little energy. Terming the chemotherapy sickening, Mrs. Rao says, ‘After the first chemo, I had a kind of reaction and had to be rushed to the hospital. I survived that. The whole body revolts against it. You breathe out a strong chemical kind of smell. Your urine smells.’ ‘It was better after a few days,’ she adds.

Put conscious efforts to stay positive. If your mind is negative and anxious, your body doesn’t respond to therapy or medication. Focus on living with cancer and not on dying from cancer. Believe in yourself to beat the disease. ‘Physically, I was completely drained out after six chemo sessions. It left me so weak I could hardly open my eyes. But still I tried to cook because I felt it will help me survive,’ she reminisces. ‘You have to give yourself something to do, something to hang on to. You need to push your energy up. Learn to fill yourself up with energy and rise or float along. I did my routine walks. I kept pushing myself,’ she reiterates. Pointing at the beautiful painting on her living room wall, Mrs. Rao notes, ‘It is always good to have something to focus on. I focused on this painting. This is my best painting what I did through my chemo – leaf by leaf, stem by stem.’ Her experience with radiotherapy wasn’t any pleasant either. ‘Cancer had spread to my nodes. I had to go through radiotherapy. The radiation damaged parts of my heart and lungs,’ she says.

Adequate family care and immense emotional support can give you the strength to deal with the illness and aid in faster recovery. Small tips and anecdotes from your cancer support groups can lighten the burden that you may be feeling. ‘My sister came down for a month after the first chemo. It helped to have someone to talk to. I was worried more about my husband. That period must have been very traumatic for the partner. He was very stressed out,’ Mrs. Rao reveals.

Good nutrition is crucial. Drink plenty of water and fluids, and eat small but multiple meals with a variety of pulses and vegetables. Include all the vitamins and nutrients. Yoga, massage, and Reiki can help decrease stress and anxiety, improve mood, and enhance overall health and quality of your life. Reiki can also help reduce the pain associated with your cancer to a greater extent.² The practice of yoga can be beneficial for coping with the psychological aspects of cancer and the difficult, and distressing side effects of your treatment.³ Simple asanas (postures), kriyas (techniques) and easy pranayamas (breathing) done effortlessly can help control the disease. Pranayama, a series of yogic breathing techniques, can help improve sleep disturbance, anxiety, and mental quality of life.⁴

A neglected side effect of chemotherapy is the changes in taste perception.⁵ Taste alteration, first perceived at the beginning of treatment, can become more severe over time and negatively affect the quality of your life. Eating bland foods, eating cold foods, eating smaller, more frequent meals, drinking more water, avoiding strong-smelling or strong-tasting foods and oral care before eating can help.

Low sex drive and infertility are the other two issues with chemotherapy. The health concerns and the fight to survive may exclude sex as a priority. You may feel uncomfortable and even feel guilty to complain about sex. But surviving an ordeal does not mean you should stop enjoying your life. Confide in your doctor who can advise some safe sexual dysfunction interventions. Your chances of having a child need not end with cancer. You can opt for fertility preservation – sperm cryopreservation for men and oocyte cryopreservation for women – before starting your cancer treatment. If you are a female, a new method may help you retain your fertility after chemotherapy.

Life after treatment

Cancer is not a death sentence. Most get over their ailment and live a normal enriching life. The heightened attention and concern of family and friends may diminish after your treatment. You will have to deal alone with the issues of survival, recurrence and an uncertain future. Start living an organised and healthy life. Maintain the prescribed diet and lifestyle patterns for life. Cultivate a hobby like drawing, painting, music, dancing, etc. to stop thinking about your ailment. Continue practising meditation and yoga. Here are seven practices of yoga for leading a healthy life with cancer. ‘What helped me through all these were my spiritual practices, meditation and pranayama. The love of friends also helped sustain me. People around me were positive. A big group of people praying for me gave me strength to know that someone cares,’ Mrs. Rao admits.

You may be left with some physical changes after you survive your cancer. You may lose your hair, breast, limb, etc. The changes may cause body image issues and impact you psychologically. A strong support system and counselling can help ease this distressing phase of your life. Losing my hair didn’t matter to me. I had made myself very tough mentally. Losing my breast mattered to me. But I didn’t cry too much about that. I told myself that there are people without legs and hands,’ Mrs. Rao says. If hair thinning or losing hair dramatically with chemotherapy worries you, ask your cancer specialist about a technique called scalp hypothermia which may help prevent your hair loss. There are various options to combat hair loss in cancer survivors. You can choose to have artificial prostheses to replace a lost limb. Special bras, artificial breasts or breast reconstruction can help a woman breast cancer survivor improve her external appearance and boost confidence. You may become dejected and isolated, and may suffer from post-treatment depression. Psychological counselling in such instances can be beneficial. ‘The period of isolation is difficult. You are stuck for almost a year at home. At the end of radiotherapy I went through a bad depression,’

You may become dejected and isolated, and may suffer from post-treatment depression. Psychological counselling in such instances can be beneficial. ‘The period of isolation is difficult. You are stuck for almost a year at home. At the end of radiotherapy I went through a bad depression,’ Mrs. Rao confesses. ‘If you pray or if you have some kind of faith in yourself, that strength will come to face what you have to face. There is no fight. I said I’m just going to trust Him. That’s when spirituality helped me. My meditation helped me retain my sanity throughout,’ she points out.

‘After I finished my treatment I joined music classes. I continue to sing. I continue to walk. I keep myself busy with artwork, tuition classes, cooking, etc. The first year I enjoyed myself. I went out for trips with cousins. I was full of enthusiasm. Last year I had some complications. A huge clot had formed around the port. My heart muscles had weakened. I couldn’t breathe. Now my heart is functioning only 45%, she reveals.

‘Today I’m better. But each day I have some problem or the other. I’m tired. My bone hurts. I’m on hormone and heart tablets. But my faith and love and prayers of my friends have kept me going,’ she admits. ‘I stay happy and cheerful around people. But there are times when I’m alone at home that the questions about life and the fear of what lies ahead crop up. You understand, and you feel what it is to ‘not be there’. I go every six months for my PET scan. There is always a fear of relapse,’ she discloses. ‘The thought of death comes more often. There is a constant awareness of temporariness of life. For me now every day is a birthday. I have one day extra I’m happy. I don’t want to waste any time. I’m in a kind of hurry to finish the things I want to do,’ she declares. ‘Life throws up certain things at you. Take that experience and make the best of it. The knowledge you have surfaces at the right time and helps you out,’ she signs off.

Living with terminal cancer

Not every cancer patient is fortunate enough to survive the condition. The chances of survival are bleak when the cancer is terminal. And succumbing to cancer is seldom quick and painless. Terminal cancer is a painful process. It can challenge the spirit of the strongest and the bravest too. If you are facing the possibility of your own death, it is wise to accept the situation. Easier said than done, but you need to learn to co-exist with your condition. It is a testing time for both you and your family. Openly address your fear of death and dying. Attempting to ignore it may not do any good. Learn to cope with this eventuality. Try to improve the quality of your life.

Make arrangements to fulfill any cherished dreams. Take your time to heal. Terminal cancer can change your perception towards life. A philosophical attitude can contribute to making the dark situation more tolerable and help you gain control over your condition. Look for inner peace. Spirituality can be a useful coping mechanism to deal with incurable cancer. Facing death can strengthen your religious beliefs. Terminal cancer is feared primarily due to pain. Your pain is managed in a graded way. Initially, when the pain is less intense, non-habit-forming milder painkillers are prescribed. Narcotic painkillers like morphine may be used in the later stages. You can make use of hospice care, if available, at this stage. It caters to your medical and nursing needs in the terminal stages. Your family won’t be burdened with the responsibility and pain of watching their dear one die. It also offers an opportunity for you to die with dignity.

References:

1. Soo MS, Jarosz JA, Wren AA, Soo AE, Mowery YM, Johnson KS, Yoon SC, Kim C, Hwang ES, Keefe FJ, Shelby RA. Imaging-Guided Core-Needle Breast Biopsy: Impact of Meditation and Music Interventions on Patient Anxiety, Pain, and Fatigue. J Am Coll Radiol. 2016 May;13(5):526-34. doi: 10.1016/j.jacr.2015.12.004. Epub 2016 Feb 4. PubMed PMID: 26853501.

2. Rosenbaum MS, Velde J. The Effects of Yoga, Massage, and Reiki on Patient Well-Being at a Cancer Resource Center. Clin J Oncol Nurs. 2016 Jun 1;20(3):E77-81. doi: 10.1188/16.CJON.E77-E81. PubMed PMID: 27206308.

3. Sisk A, Fonteyn M. Evidence-Based Yoga Interventions for Patients With Cancer. Clin J Oncol Nurs. 2016 Apr 1;20(2):181-6. doi: 10.1188/16.CJON.181-186. PubMed PMID: 26991712.

4. Dhruva A, Miaskowski C, Abrams D, Acree M, Cooper B, Goodman S, Hecht FM. Yoga breathing for cancer chemotherapy-associated symptoms and quality of life: results of a pilot randomized controlled trial. J Altern Complement Med. 2012 May;18(5):473-9. doi: 10.1089/acm.2011.0555. Epub 2012 Apr 23. PubMed PMID: 22525009; PubMed Central PMCID: PMC3353818.

5. Zabernigg A, Gamper EM, Giesinger JM, Rumpold G, Kemmler G, Gattringer K, Sperner-Unterweger B, Holzner B. Taste alterations in cancer patients receiving chemotherapy: a neglected side effect? Oncologist. 2010;15(8):913-20. doi: 10.1634/theoncologist.2009-0333. Epub 2010 Jul 28. PubMed PMID: 20667968; PubMed Central PMCID: PMC3228016. Image source:

Shutterstock (Image for representational purpose only)

Published : August 10, 2016 3:05 pm | Updated:August 16, 2016 9:33 am

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