My blog posts on the ‘C’ word here, and others on this topic, gives the impression that I never faced any setbacks. You will be pleased to know, that I did. 😊 Naturally. In this post, I’ll show you how I managed to keep my spirits high, in spite of the setbacks.
The worst parts
Accept that there will be bad times, (Otherwise, it wouldn’t be such a horror.) It is a process which will take a toll on you and your family, from a physical, spiritual, Intellectual, social/emotional and financial point of view. So, you’ve got to learn to deal with it from each of these aspects. In fact, this is what I’ve explained in my Ted Talk. Once you do it categorically, on a weekly basis, you have got yourself covered.
When it gets bad, staying calm and reciting verses which strengthen you is the best. Do whatever has to be done. Listen to Surah Rehman, and stay quiet. When you get better, do not repeat all that happened. Just move on to the better parts of your life.
Dealing with people.
Specially in the beginning you’ve got to focus on your illness and its treatment. This is why it is wisest not to share about your illness with anyone other than your core group. That’s it. You’ve got to keep yourself fully focused on yourself. Study your case well. (You do it through YouTube, meeting with doctors, talking to patients undergoing treatment in cases similar to yours.) You know, you don’t have much time. Quickly make the right decisions and take the right steps.
In our country, the moment such ‘news’ goes viral, there are people coming to ask about your health. They arrive late, then overstay, exhausting the patient and the family. Worst of all, hurtful and upsetting things are mentioned. Our people have no idea what to say, or how.
Bet on it, they will mention at least one to four family members who got it and died in the most gruesome circumstances. Then looking at you with pity, and praying for you. But, the damage is done. This is why, it is best not to share your news with anyone till you are better.
Choose right people to talk to. Keep the conversation off this subject after the first fifteen minutes. Throw questions at them regarding their own life. Your true friends will go by your cue.
The rough-tough patches:
You will have your own worst parts. Many times you are taken into a situation unaware, and later realize that it upsets you. On the other hand, there will be situations which you thought will be horrific. But you are fine. For instance, I was scared of feeling nausea and vomiting during chemo, most people have it. Believe me, I had none. Alhamdolillah! However, I got severe diarrhea after my first chemo, while most folks get constipation. (One day I went fifteen times to the loo.) It was a disaster. I felt so weak that I told my daughter, ‘I cannot take this – no chemos!’
Of course, once I was better, I was ready for the next chemo. But it felt like a soldier going again to the battlefield. Each time, there were new symptoms to deal with.
How I dealt with it:
Knowing that the stomach is one’s second brain, I did counseled myself by dealing with my baggage of this disease in my mind. Around nine years ago, I had witnessed my husband die of brain tumor GBM IV. The words ‘chemo’, ‘radiation’ and ‘surgery’ all brought horrific flashbacks. So, I sat and told myself that this is a different type of cancer. My circumstances are much better, facilities have improved. Allah is blessing me at every step. So, after thrashing out all the ‘memories connected with this disease,’ I was in better shape to deal with my own case. My journaling on this topic helped a lot.
You have to forget all other connotations you have with the name of this disease, and move on to build your own story of it. Focus on success stories, and meet cancer survivors.
Learning from my mistakes. I developed strategies to overcome my previous dilemma. So, I took an Imodium the moment my tummy showed first sign of getting loose. That sorted the problem.
Every day, I’d dress up after a nice hot shower, put on my best clothes, even if I am to be at home in bed all day. That made me feel good. After all, they are my clothes and made for me to wear!
Till now, when I go to the hospital, people ask who is the patient? People find it hard to believe that I’m a cancer patient.
Prolonged treatments – feels like an endless battle.
It becomes a pattern; you go through rough patches, then recover, then feel better. Then the next round of chemos begin. Or the next step. Whatever it is, it includes: normalizing being poked, scarred and injured. (Yes, the battlefield!) So, if a needle poked harder, I’d remind my Allah of His promise that He will reduce my mistakes of the past through these hardships. So, I’ll be a winner. Awesome.
Har mushkil kay saath asaani hai… (with every hardship there is ease…)
My morale boosters:
You know that this illness can take months and even years. It is a long run. So, when sportsmen are on a ‘marathon run’, the manner of keeping strong will be different. You need to pace yourself. Also have a number of ‘tricks’ up your sleeve to be able to give yourself a boost, and keep your spirits high.
1. Sort finances:
If a person is eligible for receiving zakat, or have access to free cancer treatment then its fine. Even then there are bound to be expenses. Though, I’m entitled to free treatment from the Air Force, but I wanted to go for the best in this field, and within my limitations. Air Force or CMHs are designed for army patients, not cancer. So, having made my choice, I knew I’ll have to come up with hard cash for treatment. It is important to figure it out first. If you have land or plots to sell, or jewelry then this is the time to do so.
Keep some more aside, as at the so called ‘end’ of the treatment, there will be more needed. Depending on the type of cancer and treatment. In my case it is extremely expensive, as it is a very aggressive one; Mine is er, pr negative and Her2 positive.I’m talking 20 lacs minimum. It can go up to 40 lacs. Actually, even more. So, make arrangements. Then forget about it. If you are going to fret about it. It isn’t worth it. Stress is bad for this illness.
2. Dress up and look good:
Take a shower daily or on alternate days. Put on makeup and be as close to your ‘normal’ self as possible. Put on a bright lipstick, and cheer up. The blackening nails,can be covered with bright red nail polish, or mute nude shade (the breathable ones). I used tea tree oil on my nails every night, it helped in not getting worse.
3. The hair fall issue:
I was clear about not fretting about hair fall. I got wigs and scarves and used these. Thank fully, all were gifted to me. When the hair started falling I quickly got rid of it, never looked at it afterwards, nor at my bald head. Quickly, I’d put on my razzle dazzle wig, (sent by Saira, my daughter Nataliya’s friend.) scarf or cap.
4. Tests and Machines:
The innumerable tests were okay but the machines made me upset sometimes. Specially, the bone scan one and the CT scan. I know it is crazy to get claustrophobic in a donut shaped machine, but I did. So, my friend would take an anti-depressant or something about half an hour earlier, before going into the room.
I never took one, or I took an ALP too late. So, I’d have my daughter Waliya talk to me throughout the time I was going through the process.
I know one feels very weak, but when I got better, I’d write my feelings in my diary. It helps to clear one’s mind and thoughts. (Ended up being notes for my blog posts.)
6. Drives with friends:
Whenever possible, I went on nightly drives with Sadia Ejaz my friend. During better days, I’d drive myself. That would give me the biggest kick! 😉
7. If you have pets:
Get the pets properly inoculated and cleaned, and let them in, whenever possible. Pets can be very comforting.
8. Meeting close friends:
After all, one does go to hospital and have nurses and doctors get close to one. So, why not meet friends too? The low immunity, needs you to be very careful. Still, I couldn’t stop meeting my friends. So, I compromised by meeting them one at a time, we observed Covid19 social distancing and wore masks. Most folks become recluses, I couldn’t. I knew I needed to meet my friends, to keep my spirits high. Use the video chats a lot and talk to friends as often as possible.
9. Charity work:
Do continue with your personal charity work. It is more important now. My insistence on keeping up with my food drives and sadqa kept me afloat too. It motivated me to maintain my well-being. So many people were depending for their meals on me. The tough filing in of data in the excel sheet was done on my ‘good’ days. Knowing I’ll be feeling bad again, I’d do two weeks, at a time. Thank God, due to my system, all donations are in proper record. I was able to personally manage it throughout.
We even did other charity projects during this time; We got a right hand for an amputee, Shakeel. The smile on his face was enough to make my days bright. My donors also continued sending donations, even those who knew my condition. May Allah bless them. May He accept our humble efforts.
Give special donations covering milestones of chemo, surgery, and now radiation, from my side. Watching those people collecting silently outside our home, standing in a line to receive the free food, (enough for around 160 persons daily) was a heartwarming experience. I had to stop the bridal projects as I realized it was not possible when I’m unwell.
10. Accepting gifts:
All my friends and total strangers, sent me cards and gifts. It was such a heartwarming experience. I cannot name how many folks sent me flowers, chocolates, food, soups and fruits, along with books, blanket, and even a pink scarf from Ethnic. Saira’s gifts of three wigs and scarves, Afaaf’s gifts, and those from Aisha from Seattle, and Sahar sent me fruit. My two friends who are cancer survivors came with their gifts Mahjabeen and Hina. Munazza Qasim came and so did Naia, and so did Tanveer, Fairy, Fitrat, Ayesha and Riffat from Lahore. Riffat stayed four days. Farkhanda Niazi made tasty dishes for me and taught me special duas.
There was Sumayya from Rawalpindi, who is a cancer survivor, sending me a basket full of goodies. Even Nadia Jameel the cancer survivor sent me a video ‘get well soon’ message! Friends came from Lahore, to meet me loaded with gifts, I was totally emersed in prayers and good wishes from my followers and friends.
11. My three daughters.
They did so much for me that there are no words to express. Starting from paying for the huge cost of chemos, to all the gifts and their presence. Nataliya and Nadiya, flew across the world to be with me. Waliya has taken care of me throughout, especially handling all the hospital payments, appointments, prescriptions and whatnot. Even staying with me in hospital during my emergency landings, and getting admitted for surgery. I made it clear to my daughters, that no one will shed a tear in front of me.
12. My mother’s faith:
Mum said, ‘you will fly through it!’ Right from the time I told her. It is amazing. After all, she is an army officer’s wife, who saw her husband go twice to battlefields in two wars. Now her daughter was going to another kind of battlefield.
13. No sad-bad talks:
I made it a point not to talk about anything depressing. Also, if someone started it, I’d try to divert the person. You cannot be positive if there is negativity around. So, I made sure we stayed positive.
14. Doing exercise daily:
This is an extremely important aspect. I have the app on my phone to count steps to make sure I do some exercise daily. Best is to go to a park for a walk, when you get tired, sit on a bench and relax when you feel tired. Being out in nature is the best. Do this for thirty minutes daily.
15. Staying hydrated:
Make sure you take at least eight glasses of water daily, if not ten.Have juices and black tea or green tea along with these.
16. Watch your food and beverages:
Most important to cut out sugar completely. One can replace it with honey, agave or shakkar. Also avoid or reduce dairy products and meats. Focus diet on fruits, vegetables and daals or legumes and nuts.
17. Be happy about weight-loss:
This is good news my dear!Otherwise, maintain your weight if it is already at the correct one. Make a conscious effort to eat well. Even if it is tough, due to bad taste or blisters in mouth. When you eat appropriately it will make you strong enough to fight it at all levels.
18. Listening to music & videos:
I love watching YouTube lectures, and Ted Talks, so I continued with those. Making sure the topics are pleasant and even funny. Listen to a variety of music and movies which are light. When any medical procedure was about to be done, I watched the YouTube videos of it before hand, for instance the tru cut, or CT scan or radiation. There are some very good videos on chemo also.
19. It is natural to be fearful.
Accept death as a reality – don’t we all? Those who don’t have cancer also die. It is natural. Know that it has nothing to do with this illness. Only that it will come on its own time. Going to Allah and the next world is inevitable. All prophets went through it. We all are going to Allah, in the end. He has taken great care of us throughout our lives. You think He will leave us, when we need Him the most? I’m sure He will take care there too. I’m also convinced that He is the most Benevolent and Merciful.
Just do all that needs to be done, so be prepared, as much as possible.
20. Avoid feeling low
Depression and anxiety is a reality. The doctors give you medications for it, as a part of treatment. My ‘go to’ medicine is ALP as it helps with sleep also, it is mild, and you can get out of it easily too. Yet, I avoid taking this too. The heavier anti-depressants are also, I feel, happiness-suppressants. I feel they can put you into a zombie state. This is why, my aim is that you do not have to take these anti-depressants at all. I didn’t. I’ve been fine throughout.
Actually, we all have our own thresholds. So, if you feel it helps, do take it.
My objective on it is that if you ‘mind your mind’ well, so that you won’t need an anti-depressant. 😊
Even my friend who has been my guide, took prescribed anti-depressants. So, actually, I didn’t have anyone as a mentor for this. But, I was determined not to take it at all. The good thing was that Dr. Farrukh supported me in this. He was the one who encouraged me to speak at the Ted Talks too. Now, six months down the road, I can safely say that I’ve done it without a proper anti-depressant. I’m feeling great. 😊 Alhamdolillah.
21. Be in control of your treatment.
Make sure you personally communicate with doctors. Try to understand your situation. Make them talk to you, and explain to you. Do not over-react, or they won’t share everything with you, next time. Be calm and show your willingness to learn about your condition. Remember, we live in an amazing world now. Any word you don’t understand, note it, and look it up on YouTube or Google. You can simply ask the doctor, yourself. (Warning: sometimes google can give you more than what you need. Remember, everything doesn’t apply to you.) Recently, I looked up radiation, I saw such horrific pics and realized, I don’t connect with any of those, as mine is a different case.
22. Avoid anything that makes you feel bad.
It is as if you are in the ICU, and go to each cubicle asking each patient what he or she is going through. How will you feel? So, avoid getting involved with other patients. Choose a few like-minded ones. You must know that your case is one unique one. Stay away from the other cases, as their cases do not apply to you.
23. Reading books:
So, be careful regarding your research. I read half the book by Azra Raza, The First Cell. I’ll complete it later on. It was not the right time for me to read it when I was in middle of treatments. Her book is highly recommended because it has facts. She is a Pakistani who is an oncologist in America and lost her American husband to cancer. So, you can imagine. What I really liked is the fact that she is very candidly discussing all that we apprehend. She is great enough to accept the handicaps in today’s allopathic medicine. She has a research institute in USA. Her intensive notes on how the research in US has holes, spending more time on the failures, rather than the successful cases. We need to study the successful cases and see how to spread these more.
24. The spiritual side is vital here.
I won’t write about it. You will find them in my other posts here and here. Of course, the charity work and sadqa is part of spiritual work. Reading and listening to sections of Holy Quran (or any religious matter or meditations that you have tried.) It does wonders. Listening to Surah Rehman has been proven to be effective. As I’d be reading the Surah Fateha, and verses, I could feel its calming effect throughout my body.
It is believed that during treatment is the best time to ask for forgiveness from Allah. Also, that your chances of getting prayers accepted are doubled when you are ill. So, use this time wisely. Believe me, it will all pass. Most of my cancer survivor friends often mention, ‘I can’t remember much of it!’ So, you and I will also forget it soon.
Anyhow, I hope that I’ve helped you in some way or another. Do leave a comment if it was helpful, or even if it wasn’t!
Stay blessed and protected from all illnesses on this earth. 😉