When Tilotama stormed into my friend’s life, our lives were in disarray. We were scrambling to find solutions unaware of the newer problems lying ahead. I was chasing every support group offline and hawking several others online. “Unfortunately, in India, cancer is still taboo. Many don’t come forward to talk about it,” said a few working in this area. While there are plenty of books available on the subject, not many have the patience to buy them, read them and then gear up for what’s in store. “I am not in the frame of mind to talk to anyone and understand what I’m getting into. Please leave me alone,” my friend said, when some of those cancer survivors expressed their wish to talk to her personally. As a cancer carer and a journalist, I found it hard to find support.
Through the journey fighting Tilotama, my friend and her support system, including me, discovered a few hacks, learnt some from others and invented some too. I do not wish for anyone to play into the hands of Tilotama or any of its kith and kin. But, destiny can turn bitchy overnight. And when it does, here are some of the hacks that worked for us.
Food and fluids:
Chemo drugs can make you feel queasy. Always carry nausea candies and lemon water. Normal water may not be of any use. Salted buttermilk is another option. Remember that you need to drink a lot of fluids.
Patients may lose their appetite. Have a couple of options in hand, you’ll never know which dish from the menu will make it to the palette.
Sweets may not be suitable for the palette. Some chemo drugs can be sweet-tasting and can linger longer making the patient detest the taste. Have salty or tangy snacks in store.
Mucaine Gel aids not just in digestion when one’s stomach feels weird, but it also helps one swallow the food after taking one spoon because it forms a layer over the mouth ulcers.
Smoothies can fuel the body and can be served with some protein powder. They are easy to swallow and they can be made tangy if sweet smoothies are not preferred. Milk may not be palatable for a patient. Try oat milk or almond milk as substitutes. You can add protein powder too for additional nutrition.
Make sure you eat fibrous food. You cannot afford to get constipated as that can lead to other complications. It’s hard to follow, but fiber gummies and other such substitutes can be handy. In case you are, please don’t worry. There are multiple items - from 4 Ply tissues, Tucks to Lox Gel, Sitz Bath tubs - available online for your help.
Hair:
Hair loss may be inevitable. Please do not hold on to the strands and wait to go fully bald. Clumps of hair on the pillow are also a source of infection. Always better to raze your head sooner than later.
With baldness, sweating and irritation of the scalp are unavoidable. Use cotton caps and satin pillow covers. Cotton caps are soft on a sweaty scalp and satin pillow covers can make it comfortable when the scalp has exclamation hair.
We weren’t lucky with cooling caps to prevent hair loss. However, there are cooler versions available now.
Smell:
Watch out for mouth ulcers. Bland food and odour-free medicines are the best way of treatment. Smells can trigger nausea.
Be careful about smells. Make sure there is an air purifier, carry a fragrance-free sanitizer, use fragrance-free detergents and cosmetics. The smell of food too can irritate a chemo patient.
Clothes:
Different parts of the body can experience different temperatures. Hand warmers in case the hands are cold. Leg warmers for the legs, socks for the feet, gloves for the fingers. There are times when just the chest or the ears are cold. We tailored cloth masks into ear gloves for this. Body warmer packets and heating pads are useful too.
Those with chemo ports can wear t-shirts that are available with zips to provide access to the chemo port during your session.
Hands, legs, nails:
Keep moisturising and massaging the patient’s hands and legs once everyday. This can help ease one of the side effects - neuropathy.
Discolouration of nails is possible. It may take a long while before the original colour is restored.
Your fingertips could feel weird. The tip of your toes too. My friend often said that it felt like there was a layer over the tip of her fingers and that the sensation of touch felt different and annoying.
Mouth:
Always carry a lip balm or a petroleum jelly as one’s lips and mouth can remain dry throughout your chemotherapy. Biotene Dry Mouth is a mouthwash that will help with dry mouth. Again, be careful with the flavours as some may find a few flavours irritating on the tongue. Same applies to the choice of toothpaste. They are all part of a trial and error.
Mind:
Patients generally have a lot to process. Do not keep asking them how they are doing and make them feel more like a patient.
Do not ask them too many questions, they can’t process them all together. You take the decision and make it simple for them. Similarly, do not ask them - How can I help? Give them an option - Can I bring you lunch? It makes it easy.
Chemo brain is a phenomenon where one’s brain isn’t very active. There were times when my friend forgot what she had set out to do or she forgot what she intended to say.
Talking to a psychologist can do wonders to your mental health.
Menstruation:
Menstrual cycle halts during chemo. Yet, wearing a period panty during chemo sessions can be helpful as some drugs can release some discharge.
Injection:
Prilox is an ointment that can be applied on the surface of the skin. This will numb the area before the doctor or the nurse pricks you with a needle.
Stuffing a pillow between your arm and the body can help relax the arm muscle when you have to be administered a subcutaneous injection on the arm. Similarly, drink lots of water so that your veins pop out aiding in the case of intravenous injection.
General:
On days when you are feeling better, do enjoy the day, but remember to conserve your energy. It’s better to get your important tasks done in the first half of the day, as the body will not be able to remain active for long.
In my friend’s case, chemo drugs took a week to act on her body. Result - drop in blood count. We were able to figure this out when she complained of severe stomach pain. It formed a pattern. A week after the chemo session, when her stomach pain surfaced, she got the blood test done, and further action was initiated.
My friend is now ready to talk to those grabbed by Tilotama or its myriad avatars in a wrestling hold. She hopes she can help others fight it like she did. “It is different for different people. I hope I get to be useful for someone,” she keeps saying. With a good doctor, a comfortable support system and a kind psychologist, you can fight your way out. Just, hang in there!
