When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it. Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.
This is one of many reasons why I wrote my book Everything Changes. I wanted advice that didn’t make me regress to toddlerhood. I wanted really smart advice that I hadn’t seen anywhere else. I wasn’t finding it in other books or cards or tee shirts. So I found it in long intimate conversations with other cancer patients.
The end of my five-hour conversation with Wafa’a really stuck out to me. She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends. (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism. And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away. Here it is:
“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”
I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
November 22nd, 2009 at 8:58 PM
pretty much I would say what she said with a few side notes. I would NOT say- this happened for a reason, there’s a silver lining to it, you’ll have some lesson in it. That life will be better once I was on the other side of it. that thyroid cancer was a good cancer to have (oh don’t get me started on that one!!!) I hated when people said things like that to me.
I would ask how they were feeling about the news. Validate whatever feeling they had. I would not say everything will be OK. Or that God only gives us things we can handle. I would say whatever they are feeling is OK. Then I would offer to call to check in in a few weeks- if that would be helpful and that if they didn’t call back I would understand, but I wanted them to know I cared and was thinking of them.
I might ask what the steps were, what the doctors were saying… I am hesitant about advice, but asking questions and being supportive, and really listening….that cann give someone with a scary diagnosis some power back. I wish more people had done that for me when I was first diagnosed 2 years ago.
November 22nd, 2009 at 10:06 PM
Take someone with you to all appointments. Something about hearing the word “cancer” shuts down your brain and you don’t hear what they say anymore. Having someone to take notes and remind you of what your questions are helps tremendously. (take someone who is somewhat versed in medicine and not an alarmist if possible….)
November 22nd, 2009 at 10:29 PM
I don’t typically offer advice unless I’m asked for it. The volume of unsolicited advice that I received hammered that in for me. That said, when asked, I’m a little verbose:
In May of 2007, I went to the doctor with trouble breathing. Two days later, I was admitted to the hospital with a preliminary diagnosis of non-Hodgkin’s. Two weeks later, with a final diagnosis of Hodgkin’s, I started chemotherapy.
I won’t get into all the gritty details here—that won’t likely do you any good. I do want to share things that helped me to get through it, in hopes that some of it will help you, too.
I learned quickly that I needed to be assertive about my care. I asked lots and lots of questions, I kept track of what they did, and when and why they did it. There were a couple of times that I corrected the nurses. It’s not that they do their job poorly, but everyone is fallible. Questions. Ask questions. Lots and lots of questions. It doesn’t matter if you annoy them — it’s your body and you deserve answers to all of your questions. (And if they’re good, they won’t be annoyed.)
I learned to be assertive about my informal care. I told the people around me (husband, friends, family) what I needed. We are so used to giving and to make sure interactions are balanced … With cancer, we’re much closer to the “it’s all about me” mindset that we usually are so far from. It feels weird to fall into that, but it’s largely true. You’re taking on cancer. If you need people to be around and chat, tell them. If you need people to leave you a lone, tell them. I’m not advocating for rudeness, but just to be straightforward with your needs.
I learned that many people are willing to spend time just sitting nearby, even when I wasn’t good company, didn’t feel well, didn’t look well, didn’t talk much (or at all). It was nice (for me) to have company, even if we weren’t our usual social selves. I learned that I didn’t need to be my usual self for people to want to be nearby, and that I needn’t feel guilty about having them there.
I did visualizations of the chemo burning away my tumor. I did affirmations regularly about being strong, being healthy, being healed.
I used the free services at the hospital: the counselor, the massage therapist, the music therapist. If you are at a hospital that offers any servies, take advantage of them.
I was pretty strong through the whole ordeal, but sometimes, you just need to cry. We’re told to be strong and positive, but no one tells us it’s OK to cry.
It’s OK to cry.
Think about all of the things you will do when you’re healthy. Talk about them. Talk as little about what’s going on as you can, and more about what good things there are to come. It is uplifting to your mind and body.
Distance yourself from people who are negative. The most insidious ones are those who “are just being realistic.” This is no time for realism ;)
That said, I had to tell people very explicitly that it was OK to talk about things that were not health-related. They could still talk to me about whatever was going on in their lives. There was a strong sense of “what I’m going through isn’t as bad as what she’s going through, so I’m not going to talk about it,” but that made me feel like I was living in a bubble. I told people it was OK, and they relaxed a little, and I could just chat again. I found that to be very grounding — it let me “live in real life.”
November 22nd, 2009 at 11:49 PM
Second the idea of taking someone with you!
Feel free to drop the f-bomb on anyone that tries to say anything like “You’re so lucky, now you can really appreciate life”, “All things happen for a reason” and/or “God has a plan” I seriously regret not telling a few more people off when they told me that.
Ask questions of your doctor, no matter how stupid you might feel and write them down before you go in and write the answers down before the doctor leaves the room.
Don’t let your doctor leave the room before you are done. I can’t tell you how many people have said they feel guilty for taking up their doctors time. If your doctor makes you feel like that FIND A NEW DOCTOR.
November 23rd, 2009 at 9:56 AM
I, too, was regaled with often phenomenally unhelpful advice - advice I usually didn’t ask for - and that is one of the reasons I speak and write about the importance of communicating compassionately with people who have cancer or are otherwise traumatized.
“Asking my permission can spare me pain” is one of the “20 things people with cancer want you to know” from my book. This includes asking permission before offering advice, visiting, and sharing information about a friend’s medical condition.
I did ask my best friend for advice, however. What she said, paraphrased below, stays with me and I share it frequently with others, when asked.
“I encourage you to just allow yourself to feel whatever comes up. You’ll have up days and down days; some feelings may knock you over like a giant wave, other days you’ll feel exhilaratingly alive. Don’t beat yourself up if you can’t or don’t want to think positively, because depression and anger are natural reactions to a cancer diagnosis.”
And the best advice, after all that? “Call me anytime, day or night, I mean it - if you need to vent, or just talk. Remember how much I love you and how much you mean to me.”
Lori
http://www.lorihope.com
November 23rd, 2009 at 3:30 PM
just a few things:
“Shit! That sucks!”
“What can I do?” “When can I come over to help you feather your nest?”
“Where would you like to go for lunch? my treat!” “Do you have enough booze in the house?” (depending on the person i guess …)
And offer a hug if you feel like its the right thing to do.
I would work to keep my tone direct, not overly emotional, and keep it in the moment. I got the best healing from the friends who related to me in a normal way, and who acted like this was a crappy situation, not like I had suddenly morphed into a victim or damaged person.
November 23rd, 2009 at 10:48 PM
It’s a bit different for me, because people come to me knowing I am a physician-survivor.
When I speak with newly diagnosed patients I reassure them, “You have the resources needed to learn what you need to learn to get the best care.” And I remind them that they do NOT need to learn everything right away.
I explain, “The most important thing happening now is working with your physicians to make the correct diagnosis/staging and to make the best treatment decision.”
If they are having pain or other medical problem (insomnia, anorexia), I encourage them to make sure their physicians know.
“They want to know, so they can help. You don’t get brownie points for suffering.”
And I usually share that for me the most stressful time of all was the interval between knowing I had cancer and beginning treatment. I let them know that it usually gets much better.
If they tear up or cry, I reassure them that no matter how much they cry, they will never catch up to me! I cried buckets and buckets in the early years of my illness.
I usually share with them a copy of DIAGNOSIS: CANCER. A Guide to the First Months of Healthy Survivorship.
This is a nuts-and-bolts guide through diagnosis, evaluation and treatment. It is short and easy to read. Question and answer format. You can go to the topics that interest you and skip topics you are not ready to read. i offer succinct, realistic, practical, yet always hopeful answers to tough questions.
Lastly, if nothing else, I reassure them that I will be here to help any way I can.
With hope, Wendy
November 23rd, 2009 at 10:50 PM
My advice to the newly diagnosed: first and foremost, you need to put yourself first. Make sure you have a good support network of caring, helpful friends and don’t feel ashamed to ask them for help. These are the people you know you can rely on no matter what, who will understand when you have bad days and be a listening ear for when you feel the need to have a good rant/cry. Take time out for yourself when you need to but don’t isolate yourself - your good friends will really want to help you, let them!
You will undoubtedly encounter a few ‘foot in mouthers’ along the way - check out http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=10270&hilit=stupid+things+people+say, it’s good preparation for some of the things you are guaranteed to hear! (unfortunately the thread descended into a bit of a religious debate but it was good at the start!)
DO NOT research survival rates. But do enough research so that you know what the standard treatments are for your cancer, what the latest clinical research has shown and what clinical trials are underway (ask if there are any that you could be eligible for).
Make sure that you end up with a surgeon and oncologist that you trust and are comfortable with. Make sure they are appropriately qualified and well respected in their fields.
You are perfectly entitled to seek second opinions - most surgeons/oncologists will expect this.
November 23rd, 2009 at 11:47 PM
What I would NOT say is , “Be positive!” Oh how I hate that!
Similar to Wafa, I would say something similar to the one day, one moment, one challenge at a time, cause I found that’s one of the major things that helped me through, as cliche as it sounds.
Something how everyone deals with it differently, there’s no right way, let yourself feel what you want to feel. And things may be especially crazy at first and you feel a mess, but that’s normal, that’s ok.
On a practical note, I recommend to hook up with your hospital social worker right off the bat, to look into not just emotional, but other practical resources, financial or whatever. And if you want to look into some stuff on your own, I recommend not going crazy on the internet, but connecting with a few main groups, American Cancer Society, Cancer Care, and whatever the “parent organization” is for your particular diagnosis.
November 24th, 2009 at 8:56 AM
I echo all of the comments above…every time someone says “at least thyroid cancer is the good kind of cancer to have” I want to scream “you try having it!” It’s still cancer and still requires bloodwork and surgery and scans and doctors visits. I would tell that person not to feel guilty about being selfish. Do something every day that is just for yourself, no matter what else you have to do in your day. And don’t feel sorry for it. Do get angry, do fight, and do let those close to you know your feelings when you are ready. There will always be people who don’t know how to handle it, but there are also those close friends that are willing to be angry with you, to listen to you scream and cry and laugh. Take it one day, one hour, one minute at a time if you have to…just realize that, in the end, this is the most important fight you have in that moment.
There are days that I just want to stop, say “no more” to doctors and scans and labs and biopsies, but I have to pull back and realize that whatever else is going on in my life needs to take a back seat, just for a bit, while I fight to stay alive to get back to those fun things in my life that make it all worth while.
November 24th, 2009 at 9:40 AM
* Cancer is a marathon, not a sprint. Treatment can take a long time, and the potential physical and emotional aftermath can last much longer. At the same time, treatment is a finite experience (one hopes) that you will survive and from which you will recover.
* If you don’t like your doc or diagnosis, shop around. Getting a second opinion is just being a good consumer, and if you’re going to spend months on end with a person, the two of you should have a good rapport.
* You are not your tumor. Your personality and accomplishments and relationships were not wiped away with your diagnosis.
* Write things down (doctor’s orders, side-effects, etc). You think you’ll remember, but you likely won’t.
* Stay ahead of the pain (and alternately, nausea, dehydration). Don’t find yourself in a hole you can’t climb out of.
* You have one job as a cancer patient, and that is to eat, hydrate, and rest. Try to delegate as much as possible. Spending 5 hours in front of the TV isn’t laziness, it’s you recharging your batteries. You have to keep your energy up to stay in the fight.
* People won’t understand what you’re going through. It sucks, but unless they’ve been there, they simply can’t.
* Above all, do NOT be too proud to ask for help and use very pointed specifics when you do. If people offer assistance, take them up on it from the very beginning. If you wave them off too many times, they won’t be there for when you really need them.
November 24th, 2009 at 12:28 PM
What people say or don’t makes a great difference to me. I want loved ones/friends to be perfect, but alas, sometimes out of love, things come out askew, unintentionally hurtful.
The best things said were clear, simple: I’m so sorry. Can I (fill in the blank: bring you dinner, walk your dog, drive you to the dr)?; specific things, not: What can I do to help?)
Things that also really helped were books, sent by friends who’d had their own cancer ordeals (survival is too loaded, complicated):
• the memoir as graphic novel-Cancer Made Me a Shallower Person
http://www.washingtonpost.com/wp-dyn/content/article/2006/05/22/AR2006052200450.html-can scroll for examples
(I’ve it read twice now during my treatment this summer/fall)
• Called Back: My Reply to Cancer, My Return to Life, Mary Cappello-
http://www.alyson.com/9781593501501.html, literary, gutsy, a life-line
I also went/go to the Young Survivors’ group at Gilda’s, and this buoys me to have folks to talk to who understood the emotional and physical territories we’d all been shipped to.
Plus, having dogs. Dogs are the best listeners.
November 24th, 2009 at 1:05 PM
I think I’ve said all of the recommended things above, and they’re all the same direction I’d go.
But more than *saying* something, when I speak with someone newly diagnosed, I *listen*. I might prompt, with a question or two, but I try to give what I needed most at the time - a safe place to say whatever the heck they want, to vent, to talk, to express themselves and their questions and fears. I will absolutely share resources and information, but that’s me talking and in my experience, what people who are newly diagnosed need most, first, is someone to listen.
Preferably, listening in a platitude-free environment. ;)
November 25th, 2009 at 1:04 PM
trust people, and allow yourself to ask for help. anything, no matter what it is.
November 25th, 2009 at 8:09 PM
Love what ALK and PAT said about asking questions and listening is better than giving advice. Amen to that. I discovered the power of that statement when I started writing my book and traveled to the houses of complete strangers, plunked myself down on their couches, began asking questions and really, really listening. Often I was for 5, 8, 12 hours because people want to not just talk, but to be heard.
Great that H LEE D points out how we need to be assertive in telling our friends and family what we want and need. I’d love it if they could be mind readers but they aren’t. We gotta steer them. WENDY talked about telling people they do not have to learn everything about this disease right away. Such sound advice. In Everything Changes, I have section on how to conduct your own research. In that department, I suggest setting a timer for how long you will spend online, and/or ask a really research savvy friend of yours to do the work for you. Information overload can zap your physical and emotional energy.
I found CANDY’S point interesting about “do not research survival rates.” I think for some people this can be useful. We hear cancer and we automatically think “death.” But for many cancers that are commonly found in young adults such as thyroid, lymphoma, and testicular cancer, the survival rate is relatively high and I can imagine that those numbers would bring hope and encouragement. For those whose survival rates sucks, I can imagine it would be helpful too to know what you are dealing with. A percentage is just that – it’s an odd and you don’t know which side of that odd you will land on. To me the most important thing is not the number but how you use the number to inform your path as a proactive patient. I know it can be hard to see and number and not cling to it in your head. And I understand these numbers aren’t for everyone. This is a great issue that Candy brought up and I think merits a blog post of its own.
BRIGITA’S point about staying ahead of the pain is so prudent and I think one that young adults especially need to be reminded of.
November 26th, 2009 at 4:31 AM
Yes, fair point on the survival stats.
I guess I’m coming from the perspective of a confirmed realist (other people might label me a pessimist) and I’ve got a cancer that is somewhere between 60 to 80% likely to kill me in the next 5 years (it’ll most likely get me in the next 1-2 according to my onc).
Rather than think ‘someone has to make up the 20-40% who survive, why not me?’, it’s more in my nature to figure that despite all the odds against me getting this type of cancer at my age, I still got it. So why on earth would I be one of the few who survive it? Knowing what’s in store really makes me dread waking up each day. I feel like I am trapped in limbo, it’s so paralysing knowing I’m going to die while all around me, my friends are getting married, having babies, buying houses, travelling, getting promoted…
December 1st, 2009 at 5:50 PM
Ah percentages….. if it’s true for you it’s 100% true. The rest of it is just odds and some of which is not accounted for in percentages — skill of the surgeon, willingness of the patient to be complient with meds and follow up treatment. What if you have something with a very low rate of occurance. For example, in addition to having had thyroid cancer, I have epilepsy — only 1% of the population has epilepsy. I shouldn’t have it then. When there was a lump on my thryroid the nurse called to tell me not to worry- only 5% of them were cancerous. Well I told her I’d only speak to the dr. and then when the Dr. called back, I told her that I did not appreciate a nurse minimizing my situation. That for someone who suffers from a 1 % disease, that 5% was a lot. (PS then I found another endo). PPS it was cancer.
So here’s what I think about percentages. They only count if they are true for you. If your numbers are scary then just be the outlier. Candy, I am sorry that you are suffering. It sounds like the not knowing is really hard for you right now. All we have is the moment we are in. The rest we don’t know about. Epilespy taught me that. It’s a condition of not knowing. (Not knowing why you have it, when you will get the next seizure, where you will be when you have one, if you will get injured, if you will get better…. (I couldn’t live with all that uncertainty making me crazy and that after a certain amount of time, I just couldn’t take the constant worry anymore and let it go.
Accepting that we actually don’t know anything about our futures is freeing, somehow, really freeing. It’s a bit zen for some, but it’s the only thing that kept me sane. I started with health problems in my early 30s so I understand the life passing you by thing. I have felt that dearly at times. But the why part? that’s hard. there’s no answer to that but there’s no logic/connection to why you have what you have and why you hopefully will be one of the people who are in the 20-40 percent who survive. Also drs are not gods. they don’t know how long people will live.