interact – Lets Talk Cancer

It’s never easy interacting with a cancer warrior; after all, you have to consider a list of factors before entering into a conversation with them. How is their mood, how are they feeling on that particular day, gauge how they want to be spoken to, keep your own emotions in control… along with many other aspects. I haven’t been on your side so I can’t comment with assurance but it’s what I assume.

On the other hand, I can confidently confirm that no one deliberately speaks rudely to a cancer warrior, however one can express themselves in an unintentionally insensitive or offensive manner.

Therefore, having lived in the cancer universe for almost two years, I can boast of a decent sized list of such comments to share with you. Not because it gives me pleasure to publicly embarrass myself, but because some of these comments are so often repeated, that I had to conclude that many well wishers don’t realize what they are saying is being counterproductive to their objective of motivating or cheering me up.

So without offending my well wishers,

Here is presentingggggggg 10 things to not say to a Cancer Warrior

1.Cannabis?

“Can your doctor prescribe Marijuana”? he asked. “Ermm, I don’t know.” I replied with a grin. “Do you think you can get me some?”. “No way!”. “C’mon it’s the least you can do for me, you’re anyway going to die.”Haha, no I am not!

While I found this conversation quite hilarious, my family was deeply offended by what was said and I haven’t met him since.

Well, there is a school of thought that endorses cannabis to cure cancer by citing that many doctors admit it helps recede the disease. Still I suggest not to ask this favor of a warrior. I also suggest you don’t offer them some if you have access to it.

2. We were nice to you because you have cancer:

This wasn’t told to me directly but to my mum. The guy was lucky that mum handled the situation with dignity. If he’d said this to me directly, his tender parts would have received a kick from my foot.

I was deeply offended by his comment and let me assure you that no warrior wants sympathy or pity and we do not need anybody’s fake niceness.

3. How can he/she be getting married/travelling or doing XYZ when she has cancer?

This is another one which angered me very much! I fail to see how people can sit and judge my friends and family’s lives from the outside.

How do they know what conversations have taken place among us to arrive at the said conclusions? Do they know that it was me who insisted that my friend get married or my family member travel in the first place? And why is it anybody’s moral responsibility to put their lives on hold while I fight this disease?

We all come with our Karma and it is mine to see through cancer, I would hate to pause anybody else’s life till I go into remission.

4. There are healthier people dying before you

The most common form of ‘consolation’ I have received from well wishers is with them telling stories of knowing someone perfectly healthy pass away, so I should be happy I am alive.

Let me tell you something- I have cancer so I am sad; you told me about somebody else passing away, that also makes me sad. How am I supposed to see a silver lining in this?

Yes, I see the point that is trying to be made, but all I can say is that there is a lot of difference in dying suddenly and watching the clock tick with the uncertainty that the disease will take you.

5. Share stories of others who died of cancer

Know a warrior who battled cancer and survived? Great tell me all about it. But telling me about someone who didn’t, what goal is that going to achieve and what is the expected reaction from a warrior?

This is the opposite of what you would learn in ‘Cancer Support 101’ or ‘Cancer Support Giving for Dummies’.

I can’t count the number of times I have had to politely ask my well wishers to stop their story mid way.

6. When will your chemo get over? When are your next round of tests?

Maybe this doesn’t apply to all cancer warriors, but such questions make me uncomfortable. Primarily because I don’t know when I will go into remission. I should have by now and I surely want to. But each time I am investigated and I say “I don’t know” I feel like I have failed an examination and I am letting everyone down.

Having got three back to back bad reports, I don’t feel like telling people when my tests are. Not because I am superstitious, but because they will follow up to know the result and if it isn’t good again, I am going to feel like a failure… again.

7. When will your hair grow back?

When my treatment ends? When my treatment changes to something targeted? When the world ends?

We have cancer. We have lost our hair. We are not in remission. How will we know when our hair will grow back? But more importantly, what are you going to do with that information? If you want to make small talk, there are loads of other things to chat about.

8. Cancer or no Cancer?

They: “How are you feeling?”

Me: “On top of the world :D”

They: Oh, you are healthy. yaaayy.

few days later

They: “What are you doing?”

Me: “On my way for chemo.”

They: “Oh! But you said you were fine”

Ermm, no I didn’t.

As I had mentioned in my previous blog How to interact with a Cancer Warrior, A warrior has vertical and horizontal days post chemotherapy treatment. On a vertical day, one can still feel on top of the world while having cancer.

Therefore:

Feeling ill [horizontal day] ≠ going to die

Feeling well [vertical day] ≠ cancer free

But the opposite is a common assumption many make.

9.Sobbing hysterically “I spoke to my astrologer, he said you are going to die.”

WHA???.. No comments.

10. Oh! There are various types of treatments available, you’ll be fine.

When I tell people I have breast cancer I’ve received responses like “Oh, that’s an easy cancer.”, “There are so many options available for you”or “You’ll be fine in no time”

Really? Then why after almost two years I am still not fine? Also, I’m sorry my cancer is ‘easy’ should I choose a tougher one next time?

I understand that these are well wisher’s way of communicating with warriors in the best way they know. But some statements can sound down right ridiculous… easy cancer?

Well wishers and support people should evaluate what information they share with warriors and when to refrain from speaking. It doesn’t mean that you coddle us, but it surely means that you don’t tell us that we are going to die.

I’ve recently had a mastectomy without reconstruction and I’m prepared for the next series of insensitive comments. You never know, there might even be a Part 2 to this blog. 😉

“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”

“Sunshine Girl”

“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.

Tag: interact

What not to say to a Cancer Warrior