So this one has taken me a very- VERY- long time to post. But after consulting an amazing friend who was diagnosed over a decade ago, here it is... my humble opinion on what to say (and not to say) about Cancer.
"I have Cancer"... No matter how fun and optimistic the delivery, those three little words no one ever wants to hear from a loved one or friend. It is like opening a door into a hallway where there are so many other doors, it is daunting, overwhelming and there is no clear path. In response most people get scared simply slam the first door shut and hide in their room. Why? because no matter which of those doors gets opened in that hallway they are all weird, uncomfortable, complex, full of emotion and nothing you say seems right. Ok, so this isn't the best analogy I have ever come up with... but imagining that long hallway from a horror movie is actually quite akin to some of the conversations I have had since publicly sharing I have Cancer. I hope and pray that no one ever becomes an expert (unless it's your profession of course) to talk to people with Cancer, but I have learned that in lots of cases people slam that door and don't talk at all! So today I am sharing my thoughts around what to say and not to say when you find out someone has Cancer.
"I am so glad they caught it early." Sigh, if only they did. This one is hard for me because I instantly want to say- they didn't- but I also want to be kind. I want to protect the person, because they aren't saying that for me, they are saying that for them. It's like reassurance that everything is going to be ok, because let's face it everyone wants it to be ok. My tumour was 14cm, basically my whole right boob, it had progressed to 4 out of a possible 14 lymph nodes and my skin. Part of the reason I actually chose to write publicly was so that folks didn't have to ask these tough questions if they didn't want to, as everyone has very different ways of receiving and processing information. I personally like to hear alternatives such as "I am really sorry to hear of your diagnosis" and for me I am also ok with "it F'in sucks". This is also a great time to share your friend with Cancer is still your friend, you know them, you know who they are, and what they like. If they are funny - be funny. If they are sensitive- be sensitive. If they swear- swear! But please don't treat them like a six eyed cancer monster, bury your head, run or stare.
This leads me quite nicely to "So what's your prognosis?" Now as you have probably realized from reading my blog I can be quite dry and sarcastic, and I have to resist looking at my watch and saying "I' m ok for the next 15 minutes!" It really is an unusual thing to be asked because as a cancer patient you don't really want to think about your mortality. What I really should say is you don't generally want to talk about your mortality, unplanned. I have chatted in depth with my insurance providers, my wealth advisor, my lawyer, and my executor... because for all of you reading this who know me you know I need to have a plan. But talking about it unplanned is weird for me, if I say everything is fabulous I'll be fine it feels like I'm playing roulette with fate, that I might jinx myself, and yet I have the most positive attitude and outlook. On the other hand this is a complex journey with many steps, and I have friends who's outlook isn't, or hasn't, been favourable. I think this is my long way of saying, keep this line of questioning for those very close to you.
Not long ago I was in a conversation with someone I don't know well but is vaguely familiar with my journey. They casually commented "well at least you're still here," meaning alive. I was mortified. I've had the "we should celebrate every day on this side of the soil" and varieties of the same. I am so thankful for this fact, as I recently attended the funerals of two dear friends that lost their battles, more than anyone could know, but again the reminder that speaking of your mortality is daunting.
It's really nice to be asked things like "where are you in your journey?" and acknowledgement that I might not always want to chat about cancer, "I'd love to know how things are going but I totally understand if you are exhausted chatting about it". I also really appreciate it when people take a minute to read my updates, because when life is low on energy credits it's not that I don't want to personally deliver the message to everyone, its just super exhausting. WOW- that sounds so selfish doesn't it, or that's how I feel as I write it. I am so very lucky to have people who care about me, and I wish I had more to give, but simply there are days I just can't. I worry about who might not have seen an update, who isn't on social media that cares about me, etc. etc. etc. It's a real thing.
As I speak of energy credits I am reminded about a line of commentary that can only be called - Trying to help me find silver linings. I have learned over time, and it's been a hard lesson, that sometimes people tell me things not because I need to fix them, but simply because they want to be heard. As a natural "fixer" that took me lots and lots and lots of conversations, that took me to a place where I simply now ask, "are you telling me this because you need my help or you want to be heard?" It's powerful, I challenge you to do the same, because I can tell you I am often telling people about my situation not because I need them to fix it, but simply because it's nice to be heard. Some of the "fix it" commentary comes from a lovely place, as I said help me find the silver linings, but it's hard to know how to respond when you are told "you must be loving the time off work", "at least you get to spend extra time with the girls", and so on. No, No I am not. I miss work, and I'm not over here having a holiday. Yes, I have seen more of the girls, but is it really quality time, No. And I certainly wouldn't have picked cancer to have more time at home.
I was also told by a deeply caring person, that this was "the world telling you to slow down." How do I even process this, that somewhere in all of this my deep commitment to my family, my work, my community had resulted in cancer. I know it did not. I have an incredible oncology team that time and time again have reassured me this isn't my fault, I didn't bring it upon myself, there is nothing knowingly that I did to end up with cancer. So no, this isn't the universe telling me to slow down, punishing me for being a loving, caring, giving person. So please, I beg you, if your friend with cancer is a busy person don't tell them this is the world telling them to slow down- even if you think it is.
One of the nicest things to be asked is "how did you find the cancer?" Maybe it is because I do have that personality that wants to help fix things, but simply put this feels like a way to help. I'm not a fan of the word "educate" as it feels condescending, but more sharing of the experience in the hope that it could help someone else. I have an unweaving hope that by sharing my story I am, and will, help someone in some way. This is also probably a good time to share that if you don't want the answer, please don't ask the question. Cancer can be uncomfortable, even simple questions like "how are you?" can be big, messy and complex. So if you don't have the time, or the capacity to listen just don't ask. In fact it's a gift to preface a question with "hit me with it- good, bad or ugly." And while I mention it please don't forget to share your news with them. I had people not share great news, because they felt guilty, or bad news because they didn't want to add more to my plate. In my opinion that's Cancer winning, when people feel I can't be me. In response I know I have to be brave and let them know if I am not up to more, discussing in depth today, that's a hard thing for a person to do, and believe me it isn't because they want to postpone, they will look forward to the day they get all of the details!
When things are weird or scary, or both, I have friends with Cancer, or family members of friends with Cancer, and we chat. Often we find ourselves gravitating to a place where we share stories of the strange things, or beautiful things people have said. One dear friend lost her husband, and we giggled about some of the interactions. I am lucky, I got this, we are getting through this, but not all are so lucky. As I mentioned I lost two friends to Cancer and the family of one shared how amazing it was when people would visit and reminisce. They got the opportunity to laugh (and occasionally cry) but learn so much about the person they loved, while they were present. A series of "remember when" allowed them in a very short period of time to learn so much, and see the joy that that brought. On my worst days when I fear the worst it's about the kids not knowing who I was, lost and forgotten. At one of the celebrations of life I learned so much about my friend. Her and I had only known each other for three and a half years, and I felt robbed, I wish I had heard the stories first hand, but appreciated beyond compare to get a little more of her through the stories. I beg you, don't leave the cool tales and chats until after the person is gone.
Writing this I feel "lucky", lucky to have incredible professionals taking care of me, and an amazing family and support team, lucky compared to those I have lost. BUT please if you don't have Cancer please don't call a Cancer patient lucky. In my opinion it should be an unwritten rule, because there is nothing about this freakin' ride that really is lucky. Someone I care about deeply had a person refer to her diagnosis as "lucky Cancer" because it does have a defined treatment plan, and a great survival rate. But as I see what she has endured, the sacrifices she has made, the quality time with her young family, the lasting effects, it's so far from lucky I want to scream. I know that's a double standard, I can call myself lucky, but you can't call me that, but I hope as you read through my blog you understand why.
As I did my research for this article- and by that I mean asking my husband what was the weirdest thing someone said to him- my oldest piped up, "I have one". Miah had shared with her friends that I had Cancer, and she had been asked "are you sure?!" Unfortunately we are sure, and it is all real, we wish it wasn't but that's how the cards were dealt. We have also navigated JK with our youngest who has a very matter of fact approach to Cancer, and informed the world "mommy has a nakey head, don't worry hers will grow back papas won't", and, as plain as if I was having a tooth extracted, "mommy's having her boobs cut off".
As I think about having boobs cut off, I have wonderful people in my life who have had elective breast reductions who have said "I understand what you are going through". This one is hard. Very hard. I don't know what a breast reduction feels like, and they don't know what a double mastectomy with lymph node removal feels like. I shouldn't compare but as proud pictures hit Instgram within weeks and I can barely move my arms, with holes in my chest and deep ugly scars, I can only draw an educated parallel that they aren't the same. Maybe it is about choice too. This wasn't really a choice for me, and by not really I could have kept my left side. I could have lived everyday worried about every twinge, and gone through the process all over again. For those who might think that electing a mastectomy is easy, it is not, but for me it was the only decision in my mind, and knowing what I know now there are zero regrets. As I write this I am going to share the weirdest of reflections. As a person who has always had large breasts, and then having Izzy, I didn't like my body. In fact I was going as far as saying I was jealous of those who had had a breast reduction and it was certainly something I would have considered. When I was diagnosed with Cancer it felt like I had jinxed myself, that it was punishment for not being happy. How totally unreasonable is that. It's so unreasonable I have deleted this part and rewritten it... people will think I am nuts... but it is also very real, because in all of this you can't be rational all of the time.
I understand what you are dealing with/feeling/your treatment because my mother, brother, aunt, uncle, sister, friend went through this...
This folks is the most common and complex of all. It stirs up so many emotions, and reactions, and they are not always the same. It is a mixed bag of, you get it, but do you get it? Was it the same, was it worse? This isn't a competition, I don't want it to sound like a competition, oh my goodness I wonder how the person is, I wonder if it's happening now, or was it last month, last year, last decade? I'm afraid to ask, I want to sound polite, oh god I hope they don't want to give me advice, I should be thankful for advice, I can't process advice right now...
In some way yes you do know, but as my family doctor warned (informed) me the treatment plan, especially for Breast Cancer, is so well researched and funded it is in constant evolution, and the protocols change often. I was naïve going into this about the different types of Breast Cancer, how they differed, what that even meant, and the variety of treatment regimes. My baseline was my Gran, diagnosed 42 years ago at the age of 38, and although ist was widely known, and her ongoing success celebrated, we had never discussed in detail. So yes, you have an idea of what you are going through, and the conversation with me will quickly pivot to asking, how is the person doing?, Thank you for sharing, that must have been a complicated and challenging time for you, they were lucky to have your support... but you don't really know how I am doing or feeling. You would if you asked, or if you said to me "I read your update and I remember the XYZ... that was hard for us, that was a celebration for us, that was a big milestone." What I am trying to say is no two journeys are the same. Like a bowl of spaghetti we all get to, or will get to, the end but there are so many different routes (can you tell I've been cooking a lot recently).
Hand in hand with this is the advice giver. At the relatively early stages I had one or two people question why I was undergoing the treatment plan that I had been prescribed by an incredible team made up of my doctor who has known me for 20 years, my oncologist, and some of the most respected surgeons in this area. If you don't have a PHD please don't diagnose me, or prescribe me. One person was adamant I should do it differently because that's what their mom had done. At this point they had no idea what type of Cancer it was, how aggressive it was, and that IT WASN'T AN OPTION. I feel the wave of anger rising, trying to remind myself that the person had my best interests at heart, but didn't have a clue. I would have died to have the treatment plan her mom had, it wasn't an option for me. My Cancer was too big, too aggressive.
Recently I had a person approach me who was diagnosed. I too was terrified to chat with them, I knew they had read my story but I wanted to be light hearted and hopeful. I wanted to be real and helpful, but not over step. I wanted to answer questions truthfully but not scare them. I hoped I could reassure them, while not setting them up that they should be able to do it all. It's important to ask for help, and by chatting that is what they had asked for- help. They wanted answers, but didn't have all of their facts. I questioned, am I strong enough to do this?, can I do a good job?, they deserve the best. IT IS HARD. There I was a person living the journey and still feeling all the feels.
Simply put- YOU got this, because getting it wrong is better than not doing it at all. In a world that is full of noisy chat, go back to basics, listen hard, be brave and speak from your heart- your friends are your friends and they need and appreciate the well thought out you.
It's so weird to write this down. Read it, put it on a shelf, write a little more, delete a little, read it over again. This post is by far the most challenging I have compiled, deeply concerned I am going to upset someone, or hurt someone's feelings as they perhaps have said one of the many things above to me. I know that everything that is said is said from a place of care but if I don't share how I feel, as a Cancer patient on the receiving side, who will? With every person who tells me I look great, and I want to scream "no I don't I just look better than I did bald, or in chemo, or drugged up to my eyeballs after surgery." That every changing part of my look or my body is fair game for open discussion, whether I write about it or not. If I am going to tell you that I am being honest and transparent in my feelings I have to do this, because if it was just the stuff you wanted to hear then I might as well take an ultra filtered, from above selfie, telling you the world is fabulous.
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