Things no one tells you about having cancer/going through chemo

Note: I mention several products by brand name here. I have not been paid to mention them. If I mention something, it's because I'm actually using it and it's helping me cope with the physical effects resulting from chemotherapy.

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Before you start chemotherapy you will be given lots and lots of information. Your head will swim and you will feel overwhelmed from information overload. But no one can tell you what it's actually like to be a chemo patient, except another chemo patient. This coming Wednesday will be the half-way point of my treatment (YAY!).  Here's what I've learned and experienced so far.

Premeds. So many premeds. You don't just get the chemo at your infusion appointments.  You will receive probably at least four other medications. These are to mitigate side effects from the chemo (mostly to prevent nausea). Some of the meds are for side effects caused by the other premeds.

My premeds are: Aloxi, Emend, Pepcid, Decadron, Benadryl, and Ativan. The first five are for preventing effects from the chemo. The Ativan is because I am one of the lucky people who gets muscle spasms when given large doses of IV Benadryl. The muscle spasms are terribly uncomfortable. Plus, you look pretty crazy when going through them. I get this pressure in my joints and muscles and it builds and builds and BUILDS until I have to move. I can't ignore the need to move where ever the pressure feels like it is building because eventually it will jerk on its own. Honestly, for me, during the actual chemo sessions, this is the worst part because even with the Ativan it takes a couple minutes for this effect to subside.

If you have a port, like I do, you'll receive a Heparin flush just before they send you home each week. This is to make sure your port doesn't fit up with clotted blood. That would be bad.

My chemo is a total of 18 weeks divided into six 3-week cycles. The first week of each cycle I receive two chemo drugs, Taxol and Carboplatin. On those weeks, I receive all five premeds. On the other weeks I only receive the Taxol and I get all the premeds except the Emend. My doctor added the Emend at cycle two and it make such a huge difference!

The very first week I started treatment was just hell. I was nauseous and ached all over and just had absolutely no energy. This lasted for five days following my chemo infusion. I honestly thought I would go insane if things continued to be like that. I really could not picture enduring 17 more weeks of that. For anyone out there who is suffering like that throughout their treatments, I feel for you, I really do. I hope your doctor finds a way to make things better for you.

We don't have medical marijuana in GA, but, despite my inexperience with that particular substance, at the time, it was the only thing I could think of that could possibly make me feel any better. I am so happy the  Emend works for me, so I don't have to go through trying to 1) find and purchase marijuana and 2) convince my husband that me breaking the law is okay in this particular circumstance. Seriously, government, get your stick out of your ass and make marijuana legal already!

Of course, after you've been loaded up with all those meds at your chemo appointment, you're not done! Oh, no. You also have home meds to take. At first I was taking Zofran and Dexamethasone twice a day for the three days following my chemo appointment. Now that my white blood cell count has dropped to below 1,500 I also get Neupogen/Granix injections on those days as well.

 I also have a script for Ambien because I've had severe insomnia, mostly due to the steroids (Decadron and Dexamethasone).

If you have to go on Neupogen, get some Claritin and some Aleve. Neupogen causes bone pain. Bone pain sucks. I don't know how the Claritin helps, but it does. (I get why the Aleve helps). Make sure the nurse who gives you the injection (or if you're injecting yourself) does so s-l-o-w-l-y. If you feel it burning or it feels super cold (you're going to feel the needle, sorry), tell the nurse so she can slow the injection even more. The nurse should then massage the area for 30-60 seconds.

Everything you receive the day of chemo will be administered via IV, either via your port or a PICC line or a regular IV line. The chemo itself will be hung in IV bags and one of those IV pumps will be set to administer it at a specific rate. Some of your premeds may be administered that way as well (the Emend and Decadron I receive are).

The rest will be "IV push" which means the nurse will inject directly into your IV line. All of your premeds should be pushed very slowly, especially the Benadryl. If they are not pushed slowly, you will be able to tell! Benadryl in particular will cause your throat and chest to burn and you will cough uncontrollably. If this happens to you, speak up! If your nurse doesn't listen to you, ask for a different nurse and tell her supervisor. You have the right to expect the nurses to do everything they can to make you as comfortable as possible during your chemotherapy. 

Receiving chemo itself isn't really painful. Before I started chemotherapy, I imagined the chemo drugs were going to burn through my veins like alcohol on a fresh paper cut. Fortunately, you don't feel them at all. If you've ever had an IV of saline, it doesn't feel any different. Basically, when you go get chemo, you sit in a comfy chair hooked up to an IV for several hours (yes, you can get up to use the restroom--the nurse will either unhook you or you'll take the pump in with you), so it's really kind of boring.

My infusion center has individual private cubicles set up. Each one has a TV and your reclining chair. There are warm blankets and free beverages available. The meds they give you tend to make you sleepy, so most of us patients are just napping the time away. You can bring food with you to snack on and things to make the experience more comfortable for you in general.

I have a tote bag that I take each week. I have a sweater, a throw blanket, fuzzy socks, earbuds (so I can listen to Pandora on my phone), light reading material, and a needlework project in my bag. My appointments last from 3-4 hours, starting at 10:30 in the morning, so I do usually want lunch.

There's a cafe in the same building that has amazing chicken salad sandwiches, so I often send my hubby (or whomever has gone with me that week) to get me lunch from there and bring it to me. It's actually something I look forward to each week. Little things like that really help! Make an occasion out of your treatment in any way you can, so that it's not something you dread. We start the day out by getting a bagel at the shop across the street from the treatment center. Your treatment day will be the day your whole week centers around, so do anything you can do to make it feel special. Especially since the days afterwards might just suck monkey toe.

See, all those drugs will fuck you up. Your face will get puffy. Here's a pic of me the Sunday before I started chemo.

Here's a pic of me from yesterday (almost half way through my treatment).

My cheeks are fucking huge. I feel like a big melon head.

On top of that my face and my hairless scalp broke out in terrible acne. Super ugly, super deep, super painful acne. Do not let anyone pop pimples on your scalp. The pain is just not worth it. Trust me. The acne is now much improved.  I started washing my face and head twice a day using anti-acne products. In the morning I use Garnier Clean + Purifying Cleanser for Combination Skin. At night I mostly used Neutrogena All-in-1 Acne Control Daily Scrub. I'd follow up the face wash with Clean & Clear Essentials Deep Cleaning Astringent. Then I'd put on Clean & Clear Advantage Acne Spot Treatment (salicylic acid). I also used a comodone extractor to clear out any clogged pores (white and black heads) that I could.  There are a lot of different products out there. You may have to experiment to find what combination works best for you. Just know that you are NOT the only one dealing with chemo-acne!

You might get insomnia. Tell you doctor if you do so you can get some sleep meds because right now, you need all the sleep you can get.

Your muscles and joints will ache. Maybe sometimes, maybe all the damn time, but, especially when you are trying to just fucking fall asleep. Aleve helps, but what works even better for me is regular massage therapy, hot baths, and stretching.

I'll admit I'm not getting as much exercise as I should. I do try to walk when I can, but some days I'm just feeling week and it's all I can do to get up off the sofa to get a beverage or to visit the bathroom. If you feel up to exercising, do it! But be careful of overdoing it. It's far easier to overdo it that you think. I've been on the verge of collapse just from doing a regular week's grocery shop. That's just the way it is, unfortunately. There will be days when you feel more exhausted that you've ever been in your life, except you haven't done anything to cause the exhaustion. Some days you'll feel normal mostly normal, but then you get fatigued faster and easier than you expect to and you're reminded that, nope, still have cancer. Every now and then you'll have a rare day where you are able to be the "old" you again. Treasure those days. Chances are they'll be few and far between. And you'll probably spend the next three days recovering. But it's worth it!

You will get "chemo-brain." Short-term memory lapses. Harder time recalling things you know you know. Stuttering/difficulty pronouncing words and general difficulty talking, especially when you are tired. Brain fog. Can't brain, have the dumb. It will happen. It is frustrating. It is embarrassing. I've been assured it will go away. God I hope so! I am used to my brain being my friend. It's a good thing I'm on leave from nursing classes, because not only do I not have the physical stamina to do clinical hours, I don't have the thinking power to do the coursework right now. Writing this blog helps because it forces me to think and write and use my brain, but it's not as easy as it was before.

No one who hasn't been through this understands what it is really like. Chances are the nurses at your infusion center are awesome and caring, but, even though they've cared for hundreds of patients, even they don't know what it's really like. If you're going through chemo and would like to share your experiences, please comment!

Stop Effing DoingThis!

I know you feel bad about my diagnosis. I know you don't know what to do or say. That's okay. I'd honestly rather you not do or not say anything than do the things on this list.

Things not to say to someone with cancer

Some of these are said by people who I know fully mean well, but are things that just shouldn't be said. For explanations for why, keep reading. And, before you ask, yes, these are things I have had people say, in most cases multiple people, in the few short months since I was diagnosed. The "responses" below in italics I have thus far managed not to actually say...I deserve a medal and a parade and a hot fudge ice cream sundae for that.

But, you don't look sick/like you have cancer!

Thanks, what, exactly, am I supposed to look like? 

Honestly, this makes me feel like you are saying that I am lying about having cancer. I know there are horrible people out there who have done that. I am not one of those people. I also haven't gotten this one since I lost my hair, which is, truthfully, part of the reason I was actually looking forward to losing my hair. I don't care what supportive thing you mean by saying this to someone with cancer, don't say this. Say something else. Seriously.

My grandmother/sister/aunt/friend/whoever had that/cancer. She died.

Well, that makes me feel so much better! 

Why, why, why would you say this to someone??? What the ever-loving-fuck is wrong with people who say this kind of thing? My personal prognosis is very hopeful, but hopeful ovarian cancer means my cancer only has a 2 out of 3 chance of killing me within the next 5-10 years. I do NOT need you to remind me of the fact that my cancer could very well kill me. I'm trying to be positive and hopeful and enjoy what life I do have and that is difficult enough without people saying shit like this!

But, you're so young!

Do you have any idea how stupid you sound right now? There are kids with cancer. Age doesn't make you immune!

Yes, I know that ovarian cancer is more likely to afflict women age 50+. Did you know that we younger women who get it tend to have more aggressive forms of it? This remark also goes back to the whole throwing my likely shorted life-span in my face. Please don't start being dramatic about me being young and dying and all that. Not only am I not dying yet, I do have a chance of beating this and dying when I'm wrinkled and white-haired and drooling into my tapioca pudding just like everyone else.

You shouldn't do chemotherapy./Chemo will kill you./You should use X alternative therapy. 

You are an a massive fucking idiot.

First of all, no, chemotherapy will NOT kill you. Yes, it's designed to kill cancer cells. Yes, it kills blood cells, bone marrow, and epithelial cells (because these are all fast-replicating cells like cancer). Yes, it has massive side effects (see previous sentence for what causes most of those). However, the amount patients receive has been carefully calculated just for each patient (based, in part, on patient weight) at each chemotherapy appointment. Chemotherapy sucks donkey balls. It's horrible. It makes people very miserable. It makes people very sick. But what it doesn't do is kill anyone.

Anyone who says that chemo killed someone they know is flat wrong. The cancer killed them (or an infection the person was unfortunate enough to catch while under treatment). I have absolutely no idea why some people are so quick to blame chemotherapy for their loved one's death instead of the, you know, obviously deadly cancer. 

Telling anyone the only thing that could possibly save their life is going to kill them and encouraging them to stop using it and use some other thing your found on the internet is not only incredibly irresponsible, but amazingly arrogant (you really think you know more than my oncologist? than all of the cancer researchers out there? than the medical journals?). If what you want to happen is for me (or anyone with cancer) to survive, this is the last fucking thing you should ever do.

Please don't confuse alternative therapies with complementary therapies such as supportive/palliative care. Alternative therapies are unscientific and unproven and dangerous.  Complementary therapies like supportive/palliative care are used alongside medical treatment and provides relief from symptoms and side effects. Supportive care and palliative therapies are a very important part of the total treatment cancer patients receive. Such therapies include diet as advised by a licensed dietitian, massage, acupuncture, yoga, meditation, guided imagery, and support groups/talk therapy (this is only a partial list of the complementary therapies offered by my cancer wellness center, run by the MD Anderson Cancer Network).

God has a plan./It must be God's will./God works in mysterious ways./God must have chosen you to go through this for a very special reason.

Fuck you and your god.

Look, if the only way you can deal with the fact that sometimes life is shit and sometimes really shitty things happen (yes, even to "good" people) is to attribute it to "God," that's fine, but don't lay your psychological bullshit on me. I don't need to find a reason that I got ovarian cancer. I know I got cancer because won the jacked-up-genes lottery. I don't need to find some deeper meaning in order to deal with the suffering and pain of cancer. I know there isn't and I find other ways to deal, one of them is this blog.

Personally, I think attributing the shitty things that happen to what is supposed to be a benevolent God is seriously fucked up and makes no damned sense. I take much more comfort in the Buddhist way of looking at things, which, basically is, that sometimes life is shit and sometimes really shitty things happen; what's important is not why the shit happens, but how we deal with the shit when it happens and we should endeavor to eliminate the shit in other people's lives we cause. This is a much more proactive and practical way of looking at the world. Instead of being a victim, I am an agent of my own destiny.

Things not to do when someone has cancer

Again, these are things that people have actually done in response to finding out I have cancer. Don't do these.

Look at my boobs.

I know that breast cancer is the cancer most associated with women-who-have-cancer, but that doesn't mean I have breast cancer and even if I did, looking at my boobs as a response is incredibly creepy. Trying to figure out if my boobs are real or fake-because-I-had-a-mastectomy or trying to figure out if one is misshaped now due to a lumpectomy is super-fucking-creepy. Unless a woman has just asked you to look at her boobs, looking at her boobs is never the correct response to anything she says, ever. Women should instinctively know this. Yet, both men and women have done this to me.

Make it all about you.

I'm the one with cancer. You can be upset about me having cancer, but it's not about you. Your level of upsettedness does not get to determine how I disseminate news about me and my cancer. If you are carrying on to such a degree that I am now comforting you, you are making it all about you. Again, I am the one with cancer. I know I've had time to process the information and get used to the idea and all, but, really, you being more upset than I have been at any point is just re-fucking-diculous. Stop being a damn drama queen.

If your response is to go on and on about someone you know who had or died of cancer and what they went through and what you went through, kindly shut the fuck up. Honestly, I don't really care. You can mention that someone had cancer and they beat it, but, again, I don't really care. I'm rather inward focused right now. I'm normally the person who is all about caring about other people. Right now I have to care about and for myself. 

If your response is to go on and on about something you went through that isn't cancer, but, you think, for some stupid reason, is like having cancer, you're an idiot and shut the fuck up. Sometimes you just can't relate to what a person is going through because you just have to experience it to really know. That's okay. You do not have to relate everything anyone else goes through to something in your own life in order to be supportive. 

Bury me prematurely.

Basically acting or behaving in any way that indicates that you now believe I am going to drop dead at some point in the very near future or that I'm basically dying and you expect to visit me in hospice any day now or that you can see the spectre of death looming about me.

I addressed this to an extent above, but I cannot stress enough how terrible it is for people to behave like this towards me. Trust me, if and when I am actually dying, I'll let you know. Until then, please don't assume that cancer = death. Even if someone has a cancer that almost always results in death, don't do this. I've had people practically start mourning my passing upon finding out I have cancer. I'm not dead yet! I'm not even dying! Please don't chuck me in the casket or start planning my memorial service yet. For one thing, it's creepy as hell. For another thing, it indicates you've given up on me. I need your support right now and I know I'm not going to get it if you assume I haven't got a chance and I'm just gonna go and die soon anyway.

Make disingenuous offers of help.

I have never understood why people do this sort of thing. Maybe in the moment they really mean it, but then they get busy and forget they offered? Having cancer is tiring. It's time-consuming. You spend a lot of time going to doctors and to have surgical procedures and to chemo or radiation and to get blood drawn and to get scans done. Sometimes you are well enough to take yourself to these appointments. Sometimes your aren't. Sometimes what's being done to you during your appointment renders you unsafe to drive afterwards. Driving people to appointments is not fun or glamorous, but if you've offered help to a cancer patient, it's very likely the thing they're going to need the most. I'm very lucky in that my husband's employer is incredibly supportive: not only in him taking tons of time off, but in coworkers and coworkers' spouses offering to take time off themselves to drive me to appointments, but this kind of employer support is, sadly, is rare. If you know you aren't in a position to drive someone, don't make a general offer to "do anything." So, if you make any kind of offer of help, make sure you actually do it. Not following through makes you look like a jack-ass. If you aren't sure if you are going to be able to help out, don't offer. If later on you can do something, it'll still be appreciated!

Act like I'm contagious/poisonous.

You can't catch cancer. Acting like you can means you are a giant asshole. Assuming that chemotherapy is going to leak out of my pores or something to poison you makes you look incredibly stupid. If anyone is a danger to anyone's health here, it's you who is a potential danger to me. Chemo drugs don't just kill cancer cells. They also kill red and white blood cells. White blood cells basically equal our immune system. Your "little cold" or "touch of flu" could land me in the hospital's ICU ward. Please don't come near me if you are sick unless you are wearing a medical mask and even then I'd in general rather you just didn't come near me. Even if you're healthy, please don't touch me unless you've washed your hands.

Compete with me for who is sicker.

I'm not saying I'm the only one who is "allowed" to be sick, but if you do this you are a massive wanker and rather pathetic to boot. This is not a fucking competition. I will not play this game. And it's really obvious when you do this because your symptoms somehow are mysteriously either the same as mine or suddenly appear whenever I'm feeling particularly poorly. It's fucking annoying. I did not one day wake up and decide that having cancer would be a great way to get attention. If you seriously need attention that much you have a pathological psychological problem. Get some fucking help. 

Fucking disappear.

Let me make one thing fully clear: if you have a friend or relative who has cancer and you disappear from their lives, you are a a truly terrible person. If you do this, please don't bother reappearing later when I'm well as you've proven yourself unworthy of being my friend and I don't be surprised if I ignore you at family events.




I'm currently one-third the way through my chemotherapy. My cancer experience has really only just begun. I am sure I will run into other things that people shouldn't say or do to cancer patients, so this may be just the first post to address this issue. If you are a cancer patient, please add your own things that people should say or do in the comments.