What to say…what not to say 

There are lots of things to say to somebody facing cancer or any other serious life situation: 

-“it sucks”

-“I’m sorry this is happening to you.”

-“what can I do?”

-“want to go for a walk? To a movie? For coffee? Have a visit? (spend time with me?)”

-something funny.

-“I’m here for you.”

-“guess what happened at work today…guess what my mother-in-law said today… I’m so pissed off at my husband”.
That’s right, go ahead and complain to me, or tell me good stuff. I don’t want to be spoken to like you are writing me a greeting card, and I would much rather talk about what’s going on with your life then have you say some of the things that I’m going to discuss below. It’s OK to complain about your stuff, I still want to be a good and supportive friend and it is quite nice to talk about something that is not cancer. 

There are also some things not to say, that are hurtful and upsetting (unless you know 100% that they are part of this persons beliefs): 

-“everything happens for a reason”. 
Everything might happen for a reason, but I can’t really think of any good reason for getting cancer. If you have one for me, I cannot imagine what it could be. Unless you will be prepared to say “everything happens for a reason” if I die (because that could be the result of this), don’t say it. 

-“It’s just hair”. 
It is just hair, but losing hair is horrible. It is heartbreaking, it is visible, it is a 24 hour a day 7 day a week reminder to myself and everybody around me that I have cancer. Most women I know spend the majority of thier beauty/personal care budget on thier hair. There is a reason for this, we love to love our hair…and I have no hair (except, oddly, random hairs on my neck and chin still grow. How unfair is that?). It might be just hair, but it changes everything about how I look, and how I feel, and my hair won’t look as I love it again for a long time, it may not ever because I don’t really know what changes this will bring to my hair. Everyone says my hair will be better than ever, but the truth is that’s just something to say, maybe it will and maybe it won’t. Today when I logged onto Facebook this picture popped up, a picture I posted two years ago. I posted that picture because I loved my hair in it so much. It broke my heart to see it today. I want to wake up and look in the mirror and see this person looking back at me:  

-“You look so good, you should keep your hair short”
It’s nice to hear I don’t look hideous, but it would be nice if people didn’t suggest that my cancer haircuts/head make me look better. Even if you think it does, hearing it doesn’t make me feel better, it makes me feel worse. The last thing a vain girl like me I wants is for people around me to think I look better with cancer! It could even make me take up smoking!

-“You are so thin, it must be the cancer”. 
Well no, actually a lot of people gain weight on this treatment, because of the steroids and lack of activity. I haven’t lost or gained weight, I have maintained my weight because I am
busting my ass to keep up my fit-bit steps, go to yoga or lift when I’m up to it, and not give in to the constant cravings for flavorful food to take away the taste of metal in my mouth. As somebody who values fitness (and anybody who knows me knows I do) I’d rather my hard work be acknowledged thanyouverymuch! Also, it is never nice to comment on somebody’s weight unless you know they want you to (have disclosed to you that they are on a diet, etc). Even if I did lose weight because of cancer, I would be well aware of that and rather not know that it’s obvious. I certainly wouldn’t want to know if that it’s obvious if I gained weight on my treatment! 

-“you are going to be fine, I know you are”.
I don’t know that. My doctor doesn’t know that. There is no guarantee that I’m going to be OK, there never is anyway, but there is even less of one for me than for your average cancer-free girl. 

-“A positive outlook is the most important thing”.
Unfortunately, this is not true. I wish it was, because I try to be very positive, above statement aside. But a positive outlook is not a cure for cancer. No matter how positive I am, I could still not be cured, I could still have a recurrence, I could still die of cancer. When you say things like this, the insinuation is if I don’t have the right attitude, it might be the reason that I do not overcome this. It’s not fair to put that on me, or on all the people that have, unfortunately, died or will die of cancer or any other life threatening illness. A positive attitude is important because it makes it easier for me to live my life, and it is more important because I have children and other loved ones that need me to be positive. But it’s not what’s going to save my life. Treatment, luck and early detection will (I hope, and usually believe).  

“Did you use….have you considered…you need to eat…” Discussing my lifestyle and suggesting lifestyle changes, unless I ask for them. Even more so suggesting that maybe something about my lifestyle caused this. Nobody knows what causes cancer all the time. Yes there are things that are correlated with it, and yes there are things that are correlated with a lower risk. But at the end of the day we all know people that did everything “right” and got cancer, and people that had lots of risk factors in thier lifestyle and and didn’t get cancer. I fully intend to spend the rest of my life maintaining a lifestyle that reduces my risk of recurrence, but that is between me and my oncologist and whatever research I choose to use and whatever professionals I choose to consult with. Unless I ask you, it is just as rude to tell me what I should be eating or not eating, what kind of deodorant I should use, or what kind of bras I  should wear as it is to tell that to anybody else.  

“I’m praying for you”. 
Unless you know the person you are speaking to believes in prayer, or they have asked for prayer, this isn’t really a great thing to say. Anybody that knows me knows I don’t believe in God. You can choose to agree with that or not, but it is my reality. Faith is something people have or don’t, if you believe in God then I doubt that I could change your mind, similarly I don’t think you could change mine (and if you could let’s face it, now would probably not be the time), so it’s not really worth arguing. Hearing that you are praying for me doesn’t change anything for me. Also, I haven’t seen much evidence that it saves people’s lives. The other potential outcomes that one might be praying for; going to heaven, having an easy painless death…they’re just not too appealing to me right now. 

I’m sure some of you are going to read some of these things and say but “this is what I want to say, this is what I believe”. I get that, I really do. But at the end of the day this is about me not about you (because I truly believe that anybody that is saying the above things to me is trying to say something to make me feel better, that it is coming from a place of kindness. Which is why I won’t get angry about it, but that doesn’t mean it won’t hurt or upset me). Whatever you want to say to yourself go ahead and say it. If you want to tell yourself that I got cancer for a reason, that you’re praying for me, that my hair doesn’t matter, that you know I’m going to be just fine, that this probably happened to me because I used anti-perspirant, that you hope I start taking cannabis oil right away, go ahead and say it to yourself. But don’t say it to me if I’m telling you that it doesn’t help me, certainly don’t say it to me if I’m telling you it hurts me. 

Please remember, even though I’m doing pretty well in spite of all of this, this is still a really big deal. A life changer, scary and horrifying and sad and painful and I could die. Because of how treatable they (Who? They!) say breast cancer is, because of how well I am tolerating chemo, because of how “normal” I seem…everybody assumes that I’m am and am going to be fine, and seems to forget that I’m still facing a life-threatening condition. I have read about women whose diagnoses started out just like mine, and were gone within a couple years. Please remember when you’re talking to me that even though I seem almost like always (and finally look my my twin brother), you’re still talking to somebody who is dealing with a life changing situation, with somebody who has a life threatening illness, and speak accordingly. I may act like I’m just dealing with something as fleeting as the flu, but I’m not and I know it. 

It’s Not Bravery…it’s Just Me (and More About Wigs)

I have gotten such lovely feedback about Beauty and the Bald, and also some shares which I really appreciate! I write because I love writing and always have so much to say that I feel if I said it all verbally, people would always be walking away from me, but I also think I have something to share and I love to see what I wrote appreciated and passed along.

Since that post something has been on my mind. A lot of people have talked about how brave I am. I don’t really know if I’m brave and I don’t think cancer has anything to do with, I think crossing the starting line for my first half marathon was a lot more brave than being in cancer treatment and walking around bald, because these are scary things I don’t feel like I have much choice about!

With regards to walking around bald, I don’t do it because I’m brave (or strong, or whatever lovely things people have said), I do it because it’s what’s comfortable for me. I would hate for anybody facing hair loss to read that blog post and think there was something wrong with them if they chose to not walk around bald. There isn’t.

When I first realized I would most likely need chemo, I assumed that I would cover my head at all times, I assumed I would even cover it at home in front of my family so that nobody would ever have to be subjected to baldy Jill. I read on bulletin boards about women that wanted to wear wigs but were so uncomfortable they couldn’t, and hoped that wouldn’t happen to me because I loved the idea of having wigs more gorgeous than my own hair (which I do) and wearing them all the time (which I don’t, I have worn a wig for exactly 3 hours in the last week, I did for dinner with my family last Sunday, I was so uncomfortable I took it off in the car before driving home). Obviously assuming I’ll be covered at all times at home was silly, I am in my own home and I need to be comfortable! However there certainly are many women that choose to cover their bald heads at all times out of the home and every time somebody visits, and they are no less brave than me. I decided to start walking around bald because I’m not comfortable in wigs, do not like how scarves look (this may change, I will certainly experiment with them more in the spring, since it’s winter right now hats just make sense anyway), and sometimes hats make my head too hot or start to give me a headache. If I was comfortable enough in any of the options to wear them all day long, “rocking bald” never would’ve happened and it would not make me a different person than I am now.

Choosing to share it on my blog and Facebook also did not make me brave, it was just something I did.

I chose to share my bald head for 3 reasons:
1. To prepare my friends and family members for when they see me. It seems a bit easier to do online (with a great selfie!) than in person.
2. Because over the years I have often shared beauty tips on this blog, and it seemed like an opportunity to do that again, with a little bit of an extra twist.
3. Because I want to use my blog to help teach people a bit about living with a cancer diagnosis and treatment, particularly people that are facing it, but also anybody else that is interested. After all we are old touched by cancer!

Since so many people are asking, here is what I find difficult about wigs:
1. Once it is on, you can’t really take it off and take a rest from it. I guess you could, but it would be weird if you didn’t do it in private. The other day I was standing in line at Starbucks and got hot, I took my hat off and held it in my hand for a while. That would look really odd to do with a wig!
2. Even though they seem so nicely styled, I still find it quite hard to get them right. Which also goes back to my first point. If you take it off, it’s not so easy to put it back on. It’s not like a hat: you need a mirror and some time. I do anyways.
3. I cannot tuck my hair behind my ears. That drives me crazy when I am reading or eating.
4. Although I would not say that they hurt, I do not find any of my wigs particularly comfortable. They press on my head in a way I don’t like, and one has a lace front that I find itchy. I have one that my friend’s mother loaned me that seems quite comfortable, but when I put it on I immediately look like my own mother, who is lovely but who I do not wish to look like. I have considered buying one by the same manufacturer (Raquel Welch) in a style I like more, because this one is so comfortable, but I’m just not sure that it’s reasonable to do that at this point, now that I’ve started to feel okay without them.

****If you are considering getting a wig, please do not let my issues turn you off (and check out Raquel Welch!). There are many women that wear wigs every single day for many different reasons; religion or alopecia or chemo or style. I assume if I forced myself to wear my wigs more, I would eventually get more comfortable with them, but I’m just not inclined to do so. Likely it would be easier if I was not working and could do it a few hours at a time (which I did do on my chemo week), but once I put one on at 7 AM, it will be there until 5 PM, and I just know I cannot tolerate that!

 

Matar tofu 

One of my very favourite foods is Matar Paneer….it is an Indian meal, cubes of cheese and peas in a yummy creamy tomato curry. Obviously giving up dairy has put a crimp in this meal. Since tofu has a similar texture to to paneer, I decided to come up with a vegan version.

   

Ingredients
-1/2 package extra firm tofu, pressed and diced
-1 can diced tomatoes
-handful frozen peas
-1 can light coconut milk
-1 teaspoon curry powder
-sprinkle of onion powder (if I’d had fresh onions, I probably would’ve chopped one up and tossed it in), garlic powder, salt, and turmeric. 

Directions
-mix all ingredients but tofu and peas and bring to a boil
-drop in tofu and simmer on low heat until curry thickens (about 20 minutes)
-toss in peas before serving over rice or with bread, naan

*this delicious curry could be used with a lot of different ingredients, definitely you could toss in some different spices, or use whatever vegetables you want. The recipe is actually very similar to a falafel curry I made recently, surprisingly falafel balls taste delicious! I also think it would be great with cauliflower and will try thet next! If you aren’t vegan, try it with paneer! 

Beauty and the bald 

I am quite vain. I have always been into my looks, make up, hair, clothing, and generally looking my best. I’ve even got it in the back of my head that my vanity and pride in my body was part of what made me get cancer. I know that’s silly but it feels like karma. I know that breast cancer treatment, and then the meds I’m going to be on for 5 years afterwards (hello menopause, you’re early!), are probably going to ruin it. Regardless, I am doing my best to maintain my body and my appearance.

I did not do cold capping, but only because my hair is quite fine and thin, and I knew that even a moderate amount of shedding would leave me very unhappy.

I love my hair, I’ve worked very hard on having it just how I liked it (which was quite a process with curly fine thin slow-growing hair, but I did it!). Now that hair is gone, it won’t even start growing back for about three more months, and it will probably be at least a year until it is a length that I am happy with.

Oh well. Chemo is a badass cancer killer, right?

I have to say that as heartbreaking as it was to lose it, I do not mind how I look bald. I had assumed it would be awful and I would want to hide it all the time, wearing wigs and hats. Turns out I only wear wigs when I am out with my friends or family and want to look “normal” (for their comfort) and I only wear hats when I need to because my head is cold. Usually I go bald. It was hard to do the first time, but once I experienced the comfort of not having something popped on my head and pressing into my skull all day long, there was no going back!

I actually think I look beautiful. I work hard on my eye make-up and my eyes are the focus of my face. I have gotten so many compliments. Some people are just nice I’m sure, but I have friends that know how important looking my best is to me and would tell me honestly if I should be wearing a wig! When people see me bare-headed for the first time, they look amazed, in an honestly positive way. Or so it seems to me, if I am wrong I will keep the delusion thankyouverymuch.

Some beauty tips for those facing chemo and/or hair loss, should you want them:

1. If you normally wear waterproof mascara and/or eyeliner, switch to washable, one that will wash off easily when you wash your face with a gentle cleanser. You want to be gentle with your eyelashes to slow down loss. So far I have all my lashes, but I know that might change.

2. As soon as you realize you’re going to be doing chemo, start getting in the habit of enhancing your eyebrows with a pencil or powder. I did this, and by the time my brows started really thinning was such a habit for me to colour in my brows that I barely noticed. Now, people compliment my eye-brows all the time and tell me how great it is that I haven’t lost them at all, but they are actually thinned to about half and the outer edges are gone! As a sidenote, even when I had all my brows they look so much nicer with a bit of shading, I will probably never go back to not doing this!

3. Eye-liner is your best friend! Line your upper lids somewhat thickly and under your lower lashes lightly. If you do nothing else but this, your eyes will stand out and take the attention away from your head. Add some light eyeshadow under the brow line and you are good to go. I’ve heard liquid eyeliner with a bit of a cat-eye tip camaflauges lost eye-lashes. I will let you know if and when the time comes!

4. If you use anti-aging or some other specialty skin products, you may want to consider changing to a gentle sensitive skin product. As soon as I started chemotherapy, my skin started to feel tight and irritated, I decided that the anti-aging retinol products I was using were too harsh and switched to sensitive skin products and it improved ASAP.

5. If you don’t normally use concealer, you might want one! I broke out a bit after chemo and from what I’ve heard that’s not unusual. I also was reaquainted with a mark on my head that is normally covered by my sideburns. I don’t always cover it up, but I probably should!

6. If you don’t normally use lipstick or coloured lip gloss, you may want to consider it. I find that my face looks very washed out without the definition of hair or lips, and also having coloured lips  takes attention downword from my head. It also seems to give my whole face colour, and makes me look healthier.

7. Blush too!

8.  Earrings! They show so much more when you don’t have hair, even if you are wearing a hat or scarf. So try to remember to wear them every day, and treat yourself to some pretty new ones! This morning one of my earrings broke in the car, I was on so upset I almost cried! I bought some new ones on my lunch break though, all better.

Hanging in

I am now on day five of cycle two of chemotherapy. Basically, I’m actually doing pretty well;  I haven’t had a lot of side effects, I’ve only had to take antinauseants a couple times. I’ve been getting out and walking the mall every day, getting activity. I wish I could walk outside, but it’s been very cold and windy which makes my nose run, which hurts my skin which is very sensitive! Of course I have to take it a bit easy or I get tired or queasy or dizzy, but all in all I can’t complain, I know how badly some people are hit by chemo.

Emotionally, I am a bit of mess. I think part of it’s losing my hair, of course I was expecting it, but being faced by it is still very very hard. It doesn’t look horrible exactly, but it is certainly not how I like to look. I’m not sure if I’m going to share with the public or not, since it’s winter in Toronto I guess I have a while to decide. As it is I wear hats almost all the time and inside, and I’ve started wearing wigs a bit more when I go out, I might try wearing one to work on Tuesday. I’ll throw a scarf in my purse so if it gets uncomfortable I can change. Since most people I work with know what’s going on, it won’t be a big surprise, it’s really just how I want to look when I look in the mirror.

I think the steroids also might be impacting me emotionally. I’ve never been on them before, but I’ve heard they can mess with the emotions and it seems to be true. I’ve been weepy a lot and bitchy and the edgy a lot. I try to keep it under control around the people I love, but it’s hard. Luckily I am only on them four days out of every three weeks, today is my first day off them this cycle! I will probably fall asleep around 7 PM, but I’m still glad to be done with them for a few weeks. On the bright side I have heard they can make people swollen, and eat a lot, and gain weight. I haven’t had any of these issues.