Author: Sunil Srivastava
Let me start with a disclaimer. I am neither a qualified counsellor nor an authority on Cancer. The contents below are purely based on my personal experience and I am lucky to be able to share them.
Once you know the diagnosis, don’t panic. Your anxiety and fear will rub off on your family and dear ones. So, stay calm and positive. This is what I did when my first results were told to me after an ultrasound scan.
Do not be morose, be cheerful. Any disease or ailment can be handled with a cheerful and positive attitude. Believe in power of positive thinking.
Consult your Doctor for referral to an Oncologist or ask your friends for reference. Then go and meet them to check your comfort level. Remember your Doctor and the team is going to be your guide and support for the entire duration of the treatment, so it is very important for you as a patient to be comfortable with your Doctor. Do not go by what others say, you decide.
Before treatment……..
Once you have decided on the Doctor, have total faith and trust on him / her. This is very important. Yes, you can discuss and clarify all your concerns but do not have any doubts on the line of treatment. Putting yourselves in the hands of a capable doctor also gives you lot of relief and builds confidence.
Always remember a good Doctor is equally concerned about you and would do everything in their control to treat you. Your confidence in them will make this easier.
Once the Doctor has decided and discussed the line of treatment, clarify all your doubts. Remember the Doctor may not have the time to clarify all your doubts, so be precise. Better still ask the Doctor to put you in touch with a good counsellor (all Cancer Hospitals have Counsellors to talk to patients).
A good team of Doctor and Counsellor will be able to provide all answers to your concerns. While the Doctor will handle the medicine related aspects the Counsellor will advise you on physical and emotional issues for you and your family. Again, remember that both play an important role in your treatment so heed their advice and listen to them carefully.
During treatment….
Depending upon your case the Doctor will advise Radiotherapy or Chemotherapy and the number of cycles. I had undergone 8 cycles of Chemotherapy (one cycle every four weeks). Some of the more common side effects of the treatment are:Risk of infection (due to very low immunity), Nausea and vomiting, Bowel problems (constipation or dysentery), Fatigue, Hair loss, Dry&itchy skin, Sore mouth (oral mucositis). You may get some or all of them.
During treatment the Doctor will advice you to take extra liquids. Check with them about the specific quantity. This is very important as for someone having 4 glasses of water a day increasing it to 6 is extra. But this is not enough. I was advised 2 litres of water AND 2 litres of other fluids like milk, juice etc daily.
Your Doctor will also advice you to have a high protein diet. If you are a non-vegetarian then you have lots of options like Egg whites, Fish, Chicken etc. apart from the vegetables. For vegetarians it can be Dal, Paneer, Soya bean, Corn, Green Peas, Palak (be careful to wash them very well before use).
Since your immunity is low and going to get lower as the treatment proceeds, you need to be very careful about what you eat. Avoid food from hotels, open stalls and home delivery service however tempting they may be. At home also try to have freshly cooked food, avoid stored or stale food.
Due to low immunity you need to be very careful not to catch any infection. Personal hygiene is the first and very important step for this. Ask your counsellor to guide you on personal hygiene. Some basic aspects of personal hygiene are – Washing hands (7 steps process), Brushing your teeth and using mouthwash after every meal (to avoid any dental infection due to food residue), Avoiding contact with persons for outdoors especially persons who have come by train, bus or flight (most public transport are carriers of bacteria which can be harmful for you due to your low immunity), Disinfecting your toilet before use (especially if someone else apart from you also uses the same toilet). Sanitising your hands with a liquid sanitizer before eating or drinking anything. I have a liquid sanitizer bottle in every room plus small bottles to carry in my pocket.
Chemotherapy can be quiet taxing so be relaxed on the day of your session. I used to be cheerful and joke with the nursing staff to make it easy for myself, them as well as the family.
The day of the chemo and a couple of days after the session you will feel very good as the steroids given as a part of the medications ensure this. However, as the steroids are stopped, you suddenly will feel down and may develop nausea as well as lack of appetite. This is the beginning of the challenging stage.
I was lucky to have a friend who would make me do about 15 – 20 minutes of meditation at least every alternate day, if not daily, during this period. This helped me a lot to get over these difficult days. You may also not be able to concentrate much so reading could be a strain. Try listening to some soothing music. Avoid taking phone calls as the radiation of the mobile phones can be harmful and also mobile phones are the bigger carries of bacteria. I did not touch my mobile for almost 3 – 4 months.
I have known people who try to be superheroes and go back to work or take up normal routine including partying immediately after the chemo session because they do not feel any major discomfort. Also this is due to misplaced bravado of “being positive”. To me this is most risky and sheer stupidity. You do not need to show positivity. Such actions can lead to you catching any virus / bacteria and more complications. So always be cautious and look at your long-term goal rather then missing out on immediate fun. Remember your body is weak internally and does not have the resistance to handle any viral attack. Also it is always better to be safe than sorry.
As far as possible avoid visitors. There will be a lot of your friends / well-wishers who would like to meet you during this difficult period. The best thing they can do for your wellbeing is keep away from you. Your body is highly susceptible to any infection and even the smallest of infection carried by them could be very harmful for you. Even a simple cold can be very dangerous for you. DO NOT ALLOW anyone with a cold, fever or any infectious disease to enter your house. If however you have to meet anyone then ensure you take the following steps – Ensure that all visitors remove their footwear before entering your room ( I did not allow any visitors into my room except immediate family members). Ask your visitor to sanitize their hands with a liquid sanitizer. Make sure you wear a mask (not any mask but N95 Respirator, all others are useless) before meeting them.
There is a possibility that your daily routine can go awry. You may feel tired and sleepy at odd hours. Do not let this bother you. Sleep or get up when you feel like it and not by the clock. I had stopped looking at the clock and am very happy for this. I let my body decide my routine. Sleep is good to increase your immunity and recharge your system.
Your skin may become dry so use a moisturiser all over your body. I did not make mush use of any cream. Instead I used to have 20ml of pure coconut oil first thing in the morning on an empty stomach. This helped me in keeping my skin from drying. You can additionally also put a few drops of coconut oil in your navel and rub it in gently just before going to sleep.
Make sure that you do not skip any meal however little you eat. As this ensures that your body get adequate nourishment to recoup (and be ready for the next chemo session). Since this is also the time when your blood count may be at the lowest you need to be very careful with what you eat. Avoid outside / street food, raw and uncooked food. Also do not eat stale and reheated food. If possible, avoid using microwave cooking. Have your personal set of crockery and cutlery. Have filtered / boiled / Mineral water as far as possible so as to avoid water borne disease. My wife has a separate set of crockery for my use which is even washed and stored separately so that it does not get mixed with general use one. Apart from this she also ensured that all my meals were cooked / served separately fresh and piping hot. Salads are absolutely banned.
Normally patients are encouraged to have fruits, but in this case, you need to be careful with fruits. Have only fruits with hard shell / with peel that can be taken off as they are not easily contaminated eg: Banana, Pomegranate, Oranges.
Avoid green leafy vegetables from the market as they can be contaminated. If possible, you can grow them in your kitchen garden to ensure purity. I was lucky that my wife set up a small garden which gave me fresh and organic spinach, baby tomatoes, brinjals and green chillies. Also ensure that all vegetables are soaked in water mixed with baking soda for an hour before cutting / cooking them. This will ensure that any harmful chemicals are washed away and does not enter your body.
Depending upon the treatment, by the second or third cycle your hair may start falling. Do not panic. This is all a part of the game. For hygiene have your head shaved. For some this can be a traumatic experience so be mentally tough and also know that this will grow back again. On the positive side you may also get a better and more luscious hair growth. I had my head shaved immediately after the second cycle and did not wait for the hair fall to become a problem. I also enjoyed my “AnupamKher” look. If it is wintertime, then ensure that you keep your head covered either with a scarf / bandana / cap to ensure that you do not catch a cold. Remember your immunity is low.
After treatment….
Depending upon you case you may have 6 – 8 sessions of Chemo lasting about 8 months. This is normally the end of the treatment, but you are not yet “cured”. The end only signals that your ailment has been “treated”. As my Doctor explained there is a subtle difference between the two words – Cure means relieve a person of the symptoms of a disease or condition whereas Treat means give medical care or attention to; try to heal or cure.Your body has to be monitored at regular intervals for any recurrence. According to the Doctors only when you have had five clear years can you be considered to be cured. However, in case of Lymphoma there is always a chance of recurrence. It is very important to go to all of your follow-up appointments, because lymphoma can sometimes come back even many years after treatment.
It is very important to keep your medical records and test reports carefully so that in case of recurrence at a later date, your doctor will know all about your previous history. Another thing to remember is that henceforth your first call for any medical issue should be to your Oncologist and let them know of your problem. They are the best persons to decide on further action.
There is a possibility that some of your tastes may undergo change post treatment. Do no worry this is normal. For example, I used to be very fond of Coffee but now I cannot stand the smell of this and have become a tea drinker. Lot of my choices in veggies have also undergone a drastic change. These are minor issues. The transition to life after cancer treatment can take time. Take each day as it comes. Accept that you may have both good and bad days. Some people may feel pressure to return to “normal life”. It is important to allow yourself time to adjust to the physical and emotional changes and establish a new daily routine at your own pace. Do not rush things. Take the time you need to adjust to changes in your body or physical appearance. Do things at your own pace and rest between activities. Remember, your body is still healing.
You will benefit from maintaining or adopting a healthier lifestyle after treatment. This could include achieving a healthy body weight, eating a healthy diet, being physically active, protecting yourself from the sun, stopping smoking or cutting down on alcohol.
Physical activity has a range of other benefits for cancer survivors. It can boost energy levels, increase muscle strength, improve mobility and balance, relieve stress, reduce the risk of heart disease, improve sleep, and decrease fatigue, anxiety and depression. It is a good thing to start exercises like walking, yoga etc. This helps in getting over the stiffness in your body and also keeps you healthy. I found yoga very helpful for me.
You can reduce your cancer risk after treatment and improve survival through healthy lifestyle choices. Eating a variety of vegetables, fruit, wholegrain breads, cereals, pasta, rice and other foods low in fat, salt and sugar helps to maintain a healthy body weight. Eating more dietary fibre can help too. Limiting your intake of red meat and cutting out processed meats. Quitting smoking can have a significantly positive impact on your survival. Limiting or avoiding alcohol will reduce the risk of cancer and improve your general health and wellbeing.
In the end it is about Positive attitude…..
Having said all this I am of the very strong view that while medical treatment and the above steps are very important, the most important thing for cancer treatment is your attitude. If you can have a positive attitude, then I see no reason why you cannot beat cancer. Surround yourself with positive and cheerful people.
Now my personal experience – the day I heard the diagnosis, I was clear that I will conquer this disease come what may. I never let any fear sink in. Infact when I walked out of my Doctors chamber smiling, she was a bit perplexed and asked me as to why was I not worried. My answer was that I had passed on my problem to her and it was her worry to treat me to maintain her reputation and so I had nothing to worry. This was the beginning of a great relationship – as it conveyed my total trust in her gave my confidence a big boost.
I never let pain overpower me. The way I looked at was if you cannot avoid it then just bear it. There is really no point whining about it. This does not reduce the pain.
Similarly, I looked at the Chemo sessions positively as this gave me a chance to leave home and go for a long drive. Also, instead of brooding about eight chemotherapy sessions I would mark off each session and light-heartedly say, “Wow—I’ve made it through two sessions and I only have six left!” Instead of grieving the loss of my grey hair, I would joke that maybe the new growth would be black and shiny. I made friends with all the staff in the hospital so every visit there was like a meeting friends and not dreary and dull.
I also looked at my free time as a time to take up some hobby which I had always wanted to but did not have the time. So I learned Paper Craft and made number of decorative pieces as giveaways and festive decorations.
I could maintain such a positive attitude thanks to my support group – the great team of Doctors, my wife & son and four of my childhood friends. I cannot thank them enough for their support.
_____________
Sunil Srivastava
Managing Director, Balaji Railroad Systems Pvt. Ltd.
(A Global Rail Engineering and Consultancy Firm.)