cancer

“So how are you doing?”… Do you really want to know?

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Remission does not always mean recovery. I read an article recently about how life after cancer can be difficult for survivors, but everyone thinks since the cancer battle is over, you are fine.
But here we are, years later, still putting pieces together. All of us survivors.
Never considered “in remission” or “cured”. Just NED: “no evidence of disease” {insert “right now”}.
My life is very different from most. I just don’t even think about what life would be like without constant tests, bloodwork, scans and worries. Most women my age have calendars booked with family, friends, outings, vacations… I have those too, but they are scheduled around doctor’s appointments, tests, scans and procedures.

I get the question, “are you doing well now?” I sometimes don’t know how to answer.

Physically: I don’t have cancer. That’s the important part. That’s what they want to hear. But I do have residual effects that most cancer patients have, but won’t tell you about. Because after all… It’s not cancer so we know we are lucky.

Emotionally: I don’t have cancer. I should be thrilled. I am a happy person. But sometimes it’s assumed that once you make it through something like cancer, everything else is a piece of cake. Let me tell you. Some things are harder than cancer.

Financially: I don’t have cancer. So the medical bills should be gone right? It’s like college, you are paying it off for years. And the constant tests just add more and more.

Family: I don’t have cancer. So we should all be falling right back into place. Living a full life. Except that there is somewhat of a paralyzing fear of “what if”. Decisions are made based on “what if”. Loved ones struggle to move on because the trauma of what happened is difficult to come to terms with and the fear of “what if” keeps them from being able to move on. Cancer affects the whole family. Sometimes being helpless while you watch your loved one come close to death is too much to handle. They put on brave faces too. No one asks how they are doing.

Friendships: I don’t have cancer. My friends are thrilled and supportive and amazing! Cancer brings new friends, which is great! But they didn’t know me before cancer. They didn’t know how different I was then, how worry-free I was. They didn’t know the me that wasn’t scarred inside and out. And many of those friends who I knew before cancer have moved on with their lives. I lost years it feels like. I’m just now putting pieces together but I feel like I’m playing a different game than they are.

So when I’m asked “how are you now?” I say “I’m good thanks!” Mainly because it would take too long to say all of this.

Milestones

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1 year ago today, I received my last chemo treatment. I didn’t know it was going to be my last, but a month later I was lying in a hospital bed wondering if I would ever make it out. The chemo was so hard on my body (for reason that I don’t think we may ever fully understand), that my doctors and I decided to drop the 6th round. So May 14th, was my 5th and final round of chemo.
I think back to a year ago, and how I felt. How exhausted I was, and how much pain I felt. I couldn’t walk to the edge of the yard without it leaving me breathless. Going to the grocery store was too much to handle and playing with my kids consisted of “I will sit here and watch”. I was angry at myself feeling so helpless. I was angry at the cancer and chemo for dragging me down and not letting me live my life to the fullest. I wondered when or IF I would ever feel like myself again.
A year ago seems like such a short time… But when I remember myself then, it seems like a lifetime ago. My energy slowly returned, my stamina is still lacking a bit, but nothing is stopping me any longer. I can do everything that I want to do. I feel better than I have felt in 3 years and I am ENJOYING every minute of it!
There are still bad days. There are still times when I wonder if the cancer has returned. There are days when I still struggle with the effects of chemo, even a year later. But there are so many more good days!
So today, being one year past chemo… Being one year out from the poison circulating through my body…. I celebrated. I went to the grocery store, I walked to the edge of he yard and beyond, I ran a bit, and I played with my children. I even took a karate class with my son. All things that I couldn’t do a year ago. All things that tell me that I am doing well and feeling great! I am still breathless at times, but its from laughter… not exhaustion. Milestones are important, because they remind you how far you have come, and I feel like I have come full-circle.

15 Things NOT to Say to Someone with Cancer:

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When I made my diagnosis public, I received an outpouring of support.  So much love, kind words, prayers, cards… but cancer scares people.  Sometimes, it’s hard to know what to say to someone with cancer.  Do you talk about cancer or do you talk about the weather?   Some people want to be private – so do you say anything at all?  It’s difficult for the person on the other side, so I never got angry towards those who meant well, even though their sentiments weren’t exactly helpful.  With every cancer diagnosis comes an immediate membership into the “bite your tongue” hall of fame, AND a free pass into the “grin and bear it” club.    Survivors, you know what I’m talking about, right?.  I once had a person tell me after a few chemo treatments, “Oh, you look great!  And you even lost some of your belly weight!”.  That’s exactly what I was going for – killing cancer AND losing weight!  Everyone should try it… It will be the newest Hollywood weight loss fad!  But I knew she meant well, so I just smiled and nodded.  And then there was the person who said, “Oh, Ovarian Cancer… well isn’t that a good kind.  Don’t they just take them out and you’re OK?”  Yes, someone ACTUALLY said that to me. I proceeded to tell her the survival rates and statistics and by the time I was finished, she was horrified – but INFORMED!

So, for those of you who know a cancer patient, or will ever know someone with cancer, I have compiled a list of things to say and NOT to say.

What NOT to say to a person with cancer (NEVER EVER):

1) DON’T SAY: “You don’t LOOK like you have cancer”:  Exactly what does a cancer patient look like?  It can affect anyone – healthy people, young people, children even!  So what exactly are we supposed to look like?  The stereotypical image of a frail, bald, pale person may not apply to all cancer patients, so don’t assume that everyone with cancer will look that way.

DO SAY:A simple, “You look great!” will do wonders for anyone (even if they don’t have cancer).

2) DON’T SAY: “Everything will be ok”:  This diminishes and invalidates the emotions that the person is feeling.  I wanted someone to listen to my fears, not tell me that I didn’t need to have them.  And of course, it goes without saying – you can’t KNOW that everything will be OK.

DO SAY: Instead, try something like “I hope everything goes well”.  HOPE is a very important thing to a cancer patient.  It’s ok to say that you don’t have answers – and to rely on hope.

3) DON’T SAY: “How are you feeling?”  What would you really say if the person actually said, “I feel horrible!  I am so tired that I can hardly move, I can’t eat anything because of the nausea, and I hurt all over!”  What we say instead is “I’m good!”  And by that we mean “I don’t really want to tell you how horrible I feel because I know it would worry you, so I’ll say I’m doing well and you’ll be satisfied”.

DO SAY:  Instead try something like “I hope you are feeling well”.  As a side note, other survivors CAN say “how are you feeling”.  Knowing that they truly understand what you may be going through makes it easier to open up to them.

4) DON’T SAY: “Oh, you have Ovarian/Breast/Prostate/eyeball cancer, can’t they just remove it?”  I know this probably needs no explanation, but I am going to say it anyway.  Cancer spreads – quickly. It doesn’t matter if it started on the tip of your pinky, just removing it may not do the trick especially for cancers that are known to spread.  And even if they were lucky enough to have no need for chemo or radiation, and even if the surgery removed all of the cancer, they still had to have a part of their body removed and that’s no small deal.  And by assuming that the process is a simple one, you are invalidating all of the pain and emotional turmoil that the person has endured.  It’s never simple – NEVER.

DO SAY:  “I don’t know a lot about that type of cancer, what are the treatment options?”  Don’t be afraid to ask questions.  But it may be a good idea to preface that with “do you feel like talking about it?”  Sometimes, you want to do anything but talk about cancer.

5) DON’T SAY: You have a 70% (80%, 99%) chance of surviving the next 5 years… “well that’s good!”:  In the words of a friend of mine, “when I woke up this morning I had a 100% chance of surviving the next 5 years so what the heck is good about 70%!?!?”  I think doctors often get in this habit of looking at everyone as a statistic.  The prognosis is good; survival rates are great – only 10 of every 100 people die from this.  That’s great, unless you are one of those 10.

DO SAY: “I’m very glad that it wasn’t worse” or “I’m very glad that the treatment is expected to work.”

6) DON’T SAY: “Isn’t that the good kind to have?”  Many seem to think that there are good and bad kinds of cancer.  Ones that are easily treatable or easy to remove are “good” – thyroid cancer patient are often told this.  There is NO GOOD cancer… Cancer is in its nature very bad.  Being told you have cancer is never easy, even it is the “good kind”.  Similarly, don’t say “You were lucky to have caught it early”.  Yes, it may be true, but “lucky” and “cancer” just don’t go together.

DO SAY:  “I’m so glad that it was easily treatable” or “I’m so glad you listened to your body and it was caught early”

7) DON’T SAY: “Let me know if you need anything”:  How easy is it for you to ask someone for help?  Most of us are very independent and have difficulty accepting help from others.  Having cancer doesn’t change that, it may even make it more difficult.  I had a hard time coming to terms with how much I needed others throughout treatment.  Independence is just one more thing that cancer tries to take from you.  I was very thankful for those friends who didn’t ask – they just did.  One friend brought dinner over every Wednesday.  I didn’t have to ask, she TOLD me she was bring dinner.  Plus, chemo brain is real!  Asking what you can do to help requires thought and planning which may not be easy to someone who is exhausted and may not feel well.

DO SAY: “I am going to bring dinner/pick up the kids/ drop off groceries”.   Tell them how you are going to help.  Or, “I am here if you need me” (although, don’t expect a call 🙂

8) DON’T SAY:  “My sister’s, husband’s, aunt’s brother had cancer and they breezed through treatment”:  This is meant to provide a comfort.  If someone else can do it, then you can too.  And it’s a way to relate to the patient.  But every person is different, every cancer is different and every treatment is different.  For example, the chemo drugs used for testicular cancer are very different from those used for ovarian (or breast cancer or any other type of cancer).  The drugs used to treat blood cancers are very different from those used to treat tumors.  Each drug has different reactions, side effects and durations of effects.  So don’t assume that because you knew someone with cancer and who may have gone through chemo or radiation, that all people are going to have the same experience.  And if someone else had a better experience than me, does that mean I’m flawed?  Why didn’t I “breeze” through treatment too?  Why was I in the hospital for a week an unable to continue chemo?  Am I not as strong as that sister’s, husband’s, aunt’s, brother?

DO SAY:  “I hope that treatment goes well for you”

9) DON’T SAY: Similarly, don’t say “if ‘so and so’ can do it then so can you!”  Again this implies that if I have a more difficult time with treatment or if the cancer spreads or reoccurs, then I have failed in some way because ‘so and so’ did it and I couldn’t.

DO SAY: “You are very strong and have a great attitude and you are surrounded by love and support.  I hope that makes things a little better for you.”

10) DON’T SAY: (This one is important for those with a recurrence).  “Well, didn’t you have both breasts removed? How did it come back?”  Or “Didn’t they get it all the first time?”  Again – cancer spreads.  Perhaps the first treatment was thought to be successful, and for an unknown reason it reappeared.   THAT is the fear that every cancer patient faces.   So, don’t rub their noses in the fact that it did come back like they didn’t do enough the first time to keep it at bay.

DO SAY: Sometimes, it’s just better to not say anything.  Asking questions that no one knows the answer to like “why did it come back” doesn’t help anyone.  The person dealing with a recurrence has already asked all of those questions dealt with that disappointment.  A simple, “I’m so sorry” or any of the other things mentioned here would be better.

11) DON’T SAY:  “I know how you feel”.  Don’t try to understand the person’s emotional state, unless you have been there.  Don’t try to project what you think they should feel.  I once had someone tell me, “I know you want to curl up in a ball and just cry and you feel like a horrible mother for being so tired all of the time, but you CAN do this!”  That is wrong on so many levels.  I held myself together pretty well (most of the time).  I didn’t feel like curling up in a ball and crying… I felt like kicking cancer’s butt.  And sometimes I felt guilty for the time that I was missing with my children, but I had been able to come to an understanding that it was just a means to an end.

DO SAY: “I can’t imagine how you are feeling, but I am here if you ever want to talk”

12) DON’T SAY: “You can do this!”  I never doubted that I could, and while I appreciated the vote of confidence, pep rallies should be saved for football games.  “You can do this” implies that I have some sort of control over it, which then implies that if something goes wrong it’s somehow because I wasn’t good enough at fighting the fight.

DO SAY:  “I love you and I am here for you”.  Really, that is all that needs to be said.

13) DON’T SAY: In the case of someone with lung cancer… “Did you smoke?” or skin cancer “did you lay in a tanning bed?”  Or any other variation.  Never imply that the person did anything to contribute to their cancer diagnosis.  The reason seems obvious, but then why do people still ask those questions?  Trust me, every person with cancer has already asked themselves, “what did I do to make this happen.”  Coming to terms with the “why me” is a very difficult part of the process and they don’t need to relive that by answering to you as well.

DO SAY: “Cancer is so unfair!”  Yes, it may seem simplistic, but hearing it may be just what that person needs to reinforce their own feelings.

14) DON’T SAY: “God gave this to you for a reason”.  This is a tricky one.  If the person is religious, relying on God’s ultimate plan may make the healing process a little easier.  BUT, it has to be something that THEY realize as they begin to work through their grief and eventually come to acceptance.  It can’t come from someone else.  I have said many times that I believe God gave this trial to me because he knew I would do something with it.  I am using my experience to try to help others who are facing cancer.  But, it was a conclusion that I made, when I was ready to accept it.

DO SAY: If you know the person holds strong to their faith, you may say “God is with you” or “God is watching over you”.  I would still shy away from the “God can heal you” sentiments because that then leads to the “why didn’t God heal me” if the outcome isn’t favorable.

15) DON’T SAY: “I’ve been researching and you should do X,Y,Z”.  I had so many people telling me about special diets and herbal remedies.  While I appreciated their concern and that they were trying to help, I always wondered if they thought I was just home twiddling my thumbs.  I was the one with cancer – did they not think I was doing every bit of research possible!?!  I realize this may not always be the case, and even in those cases – sharing your concern and offering help can be accomplished in a less patronizing way.

DO SAY:  “There is a lot of information out there about various things.  If/when you feel up to navigating through it, I am here to help you if you’d like”.