“You will get through this. Not because you are getting treatment, but because of the person you are.”
“Not everyone would have accepted this illness and fought it the way you did, you are an inspiration to all”
“You look beautiful. Your hair doesn’t make you who you are. Your heart does”
“You smiling through your disease helps us deal with it better”
“When you got diagnosed a lot of lives changed. We are all in this together and with you right till it all goes away”
“You are in our thoughts and prayers always.”
Positive reinforcement is always fantastic to hear and I have been blessed to have received an immense amount. It helps us warriors get through tough days and sometimes the words spoken can be exactly what we need to hear.
However, from your perspective, it can’t be easy to respond to the news of a loved one being diagnosed with cancer. Ones instinctive reaction is to let their own fears takeover, but most often that isn’t what a new warrior needs to see or feel.
How one responds to news and acts spontaneously is of utmost importance. So as a resident of the cancer universe, I thought I could assist you in dealing with your own emotions or certain situations better while you support your warrior.
Of course this is only my perspective and each warrior responds differently, but I hope it benefits you nevertheless.
1. Chronic Disease not Terminal:
Cancer is no longer considered a terminal disease. Warriors live with cancer and they can function fine. There are numerable other diseases that are incurable but cancer fortunately has many treatments available. So yes, it is a tough journey but it doesn’t always have a negative conclusion.
I don’t know when my cancer will go into remission. It probably will or won’t, but that’s not going to stop me from planning the next fifty years of my life. Yes, I may stay on treatment always, but people with many other diseases have to live like that too.
Hence if you hear of somebody’s diagnosis, don’t let fear of death cloud your emotions.
2. Precaution not Paranoia:
When a warrior is diagnosed, the support group can get paranoid while caring for them. Everything is new and unknown, the oncologist has given a long list of restrictions along with a longer list of side effects to treatment. You will want to avoid as many of them as possible therefore you may over care.
I remember when I was diagnosed and told not to be in crowded places, I was literally not allowed outside my room. Not more than three people could see me at a time and that was permitted only if everybody was wearing a mask.
Maybe that is required for some warriors, but I was fortunate that my body accepted the treatment well. Therefore, after some tantrums from my end, counselling from nurses and experience, my loved ones and I reached a balance of caring with precaution not paranoia.
Observe how your warrior is responding to treatment and don’t let your nervousness limit them.
3. Gauge your emotions:
The reason I can battle cancer with strength is because nobody cries or acts weak in front of me. My support group is very matter of fact about my illness and we have normal conversations. Emotions on the topic from their end are kept to themselves. But that helps me; however, for another warrior your tears and responsiveness may be therapeutic.
Therefore gauge your emotions and behavior around those in treatment. Also, this needs to be done each time you are around a warrior. Our own mood can be very erratic hence your emotions shouldn’t burden further.
Some days I am happy to cry about my cancer with a friend but other times I have cut off from well wishers, because their perturbation was too overwhelming for me.
4. Take permission before sharing information:
When we know a cancer warrior and receive information about the disease, the impulsive reaction is to share it with them. And you should!
It helps us gather points on how to care for ourselves while taking away the responsibility of finding the information single handed. However, it’s polite to seek permission before you share.
Sometimes information can be overwhelming, or on a good day we want to pretend like we don’t have cancer at all, or perhaps we just aren’t prepared for a WhatApp or email link bursting to tell us something good or bad about the disease.
5. I have found a cure:
You may know an oncologist or person providing alternate treatment who has cured other warriors, but each persons genes are different therefore what worked for one person may not necessarily work for others.
So as much as one may appreciate your concern, please don’t say you have found someone who can cure cancer. Cancer is complicated. What you could say is, ‘I know this worked for somebody, would you be interested to know more? I can connect you to xyz and you can take it forward if you like. After that let the decision be theirs and try not to keep following up.
6. Respect a warriors thoughts on God and Spirituality:
As I have mentioned in my earlier blog The Good Side Effects of Cancer, many warriors discover or divorce God during diagnosis. This is a long, lonesome and personal journey, therefore do not preach if you think a warrior is upset with God. Even if it is offensive for you, respect their emotions.
7. Respect the morbidity:
Despite everything I say in my blogs, the first reaction when I was diagnosed was ‘tik tok there goes my clock’… and morbid thoughts come from time to time.
It can be difficult to hear a warrior talk about their death but be strong and listen to us. You don’t have to say anything. One hug at the end of the conversation is all that is expected of you.
8. Motivate on Vertical Days
I learnt this interesting concept from a fellow warrior when I entered the cancer universe. She said ‘Sonia, I have two type of days, vertical and horizontal. The days I am fine I am vertical- up and running and the days I am not, I’m horizontal- sleeping on my bed’. It’s been the easiest way to explain to family how I am feeling each day.
On a vertical day, treat your warriors as you would pre-cancer. Don’t be over-cautious around them. Let them move around, cook or do something interesting. Motivation sometimes needs to come from our support group. As mentioned in my first blog – Cancer Warriors, it is easy for us to stay in bed and feel sorry for ourselves, but if you see that a warrior is doing fine, push them to do better.
9. Bald is beautiful but don’t lie:
Cancer alters a warrior’s looks. Yes, we brave the changes happening to our skin and the loss of hair. It is also very nice of you to say that we carry off the look well or still look good. But it ok to agree with us and say “we miss how you looked too”. Don’t be rude, but unconditionally complimenting also doesn’t help because we may have cancer but we haven’t turned blind.
10. Be consistent in your support:
When I was diagnosed, my house was filled with people like it was a Grand Indian Wedding. Almost two years later I can count the number of friends and family still involved on the fingers of one hand.
That is ok. My treatment has been going on since sometime and people get busy with their lives. But that isn’t the case for everybody, therefore if you tell your warrior that you are going to be a part of their support group then ensure you stick around.
Maybe discuss responsibilities- that you will come for chemo with them? or maybe bring food or babysit their pet? But be there if you say you will.
If stepping away is your only option, then talk about it and inform your warrior or their support group. It’s politer than drifting apart because your absence will be noticed.
11. Create your own support group:
Taking care of a cancer warrior can be intense. Keep a support group for yourself where you can share your emotions too. Your warrior may not be your best counselor, so let your friends and loved ones get you through your tough days.
12. It’s ok to ask questions:
I didn’t know anything about cancer when I was diagnosed and I realize that most people don’t either. So I am happy to tell them whatever I can from a science and emotional perspective. However, a basic research from your end would be helpful so the questions asked are mindful and respectful.
For example: If you are going to ask me what stage my cancer is and I answer stage 4, don’t give me a shocked look. Stage 4 cancer does not mean terminal cancer. It just means it has spread to many parts of the body.
13. Develop an appetite for intensity:
Till I am positive, cheerful and hunky dory, I have a lot of people around me. The day I am feeling morbid or grumpy, not so many. Of course nobody wants to be around an unpleasant person but hey, I have cancer! I’m allowed this much. So be strong and hear us on our tough days.that is when we need you.
14. Strength is contagious:
When you interact with a warrior, do it with all your love and positivity. Be a catalyst of strength.
If you can keep these thoughts in mind, you’ll make a splendid support person. You don’t have to remember everything but if you have grasped the emotions then you’ll work your way through very well.
Qualitative treatment is developing and we are all still grappling with ways to deal with cancer. So I thank you for having the best intentions for us warriors.
If any other cancer warrior is reading this or if you, as a support person, can think of points to add, please comment below. It would help us all.