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How do you all cope when you have your down days?

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

just wondering how everyone copes? tips, pointers from the old timers (lol, please don't be offended not saying that age wise, saying it as some of you have had cancer longer or are NED and have experience)

Just sometimes I get down, think all sorts about the cancer. My husband usually snaps me out if it, but he is going back to work next week so will be on my own. So wondering if anyone can share? My family/friends at work or uni during the day, I can't go driving as I'm still recovering from surgery. Started drawing again to keep e busy, reading etc. Wonder if meditation is a good idea lol

Hugs
Sonia

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Sonia,

Take comfort in the fact it is totally NORMAL to have down days! And down thoughts! No matter how happy you are, or how you have the support of husband and family and friends... the bottom line is you have been diagnosed with this monster called cancer... and it IS scary! Anyone who says to you, "Oh don't worry... you are going to be fine!"... punch them in the mouth (That might not solve the problem, but you'll feel better! LOL!!) :) :)

Of course you are going to be fine... you are going to learn to adapt to the fact you are living with cancer. Not dying from cancer but living WITH cancer and if you are dx'd as Stage IV, you are going to be living with cancer for the rest of your life. The unknown here is... how long is one's life? And it is that question that you will be mulling over and over, day in and day out. I can totally relate to that and I bet if everyone is honest with themselves, they all will tell you the same thing.

Yes, we all strive to be NED (no evidence of disease) and the first time you hear those words you feel like your heart is going to burst with happiness and you think, "What am I going to do to celebrate? I am going to do something really special for myself and my loved ones!"... but once the elation dies down a bit and you return to normal life, although you are still feeling great because you are NED, there is always this voice at the back of your mind that asks, "I wonder if it is going to come back? I wonder if I'm going to have a recurrence and if so, WHEN? What will that mean to me and my health if I DO have a recurrence? I know I'm NED now but what if..." So even when you have been given the ultimate words you want to hear... you are always going to dwell on "What if it returns"... so you end up living with cancer even if you are declared clean and no sign of cancer anywhere.

I was just given wonderful news yesterday... that although I DO have multiple nodules in my lungs, they are sooooo slow growing, they are almost dormant. They are so small they do not need any treatment... not even maintenance. So short of being told I am NED, this is the next best thing... but as soon as I was told this, my mind starts up with "What if they decide to grow? What if they start growing real fast? If they are in my lungs what's stopping cells from going from my lungs to elsewhere in my body? (Ok, even I know that my CEA would be the first clue because CEA is a good indicator for me, and mine right now is perfect).

So yes, your questions and constant thoughts of cancer are going to be there and it's totally normal... BUT (you knew there was going to be a "but")... you can't let these thoughts take over your life. Otherwise, the monster has a hold on you and it's not even having to work for that hold ;)

While you are still in recovery mode for the surgery, definitely start some indoor hobbies like you have. Bring out the art supplies, get yourself a pile of books you've always wanted to read but have never had the time, start a new hobby such as scrapbooking or card-making. Once you are a bit more mobile and can get outside and/or drive around... if you aren't going back to work, then sign yourself up for some classes. Take this time to do stuff for YOU... stuff you would have brushed off before or said, "I'll do that some year when I have more time". Well, use the time now between doctors' appts. and scans to do some of those things!

Obviously, you can always come here and ask questions or just yak with others who know exactly what you are going through. But when you want a break from "cancer", then go out with non-cancer friends... and join in with what they are doing since they do not have to live with the thought of cancer 24/7.

Of course, you can always volunteer for a cause you really believe in... be it animal rights, human rights, your local library, theatre, nursing home... whatever you think would give you satisfaction that you are contributing to a cause :)

I'm sure there are millions more ideas that others will pop in and mention :)

Huggggggs,

Cheryl

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hey Sonia...

Here's a short piece I wrote a few years ago on a "down day". I hope it's not too long...

-------------
"Don’t let anybody kid you! There are lots of down days on this journey...

Surgery, radiation, chemo… they each take there toll. Recurrences and metastases contribute their own special horror. Add to this the stress of scans and blood tests, the emotional rollercoaster of fear, frustration, anger, and despair alternating with relief, joy, peace, and hope… well you get the picture. It’s tough on survivors, and just as tough on their loved ones.

Don’t get me wrong, I’m as positive as the next person when it comes to living with this beast. I think the right attitude and the “will to live” are important. But so is honesty and authenticity. Part of the reality of this disease is that it knocks the stuffing out of you!! Some days are really dark and tearful. We need mechanisms to release our sadness, fear, anger, and despair. It is not a sign of weakness, of losing, or of giving up. It is a sign that we are human, and an acknowledgement that letting go and release are part of the journey.

Music, meditation, and movies can be helpfully “cathartic”…
Catharsis : a Greek word meaning "purification" or "cleansing" derived from the ancient Greek kathairein "to purify, purge," and adjective katharos "pure or clean".

My colon cancer friends will appreciate that this word has also found its way into the medical lexicon as a bowel cleanser or purgative, cathartic. But I’m thinking of it more in terms of the emotional cleansing, or catharsis, that can happen when we are moved through compassion by tragedy, death, love, redemption, hope, or any of the other "really real" things in life."
----------

Sonia...
Do whatever nurtures your own soul. Sounds like you are on the right track with things like drawing and meditation.

Sometimes this work is the most private and personal we do since many of our family and friends do help us to be, and perhaps need us to be, upbeat. But if you are lucky enough to have a friend who can just let you "be" with your emotions on dark days, you may find it helpful to share with them.

And hey... there is always us!! This is a great place to dump heavy stuff and find compassionate support.

Peace and blessings...

Rob; in beautiful, sunny Vancouver

“I cry a lot. My emotions are very close to my surface. I don't want to hold anything in so it festers and turns into pus - a pustule of emotion that explodes into a festering cesspool of depression.” Nicolas Cage

shoppergal
Posts: 118
Joined: Mar 2009

Hi Sonia,just remember that it's normal to feel that way at times.Besides having to deal with the diagnosis of cancer don't forget that your body just went thru a tramatic experience. No matter what kind of surgery, your body has to heal, give it time. Try to do things for you that make you happy. I found that keeping a journal really helped me, it gave me a chance to express whatever I was feeling and no one was ever going see it unless I wanted them to.I wish that I had had access to a computer when I was diagnosed and going thru chemo. Talking to people here that have been thru or are going thru similar things as you are the best people to talk to because they really get it! If you feel the days that you are down are exceeding the days that you feel good, its time to talk to your dr, ther are always meds that can help. I eventually had to do that and I find that it made a big difference. Keeping a positive attitude and having supportive family and friend is still the best medicine!

trainer's picture
trainer
Posts: 242
Joined: Sep 2008

When the down days are upon me, I visualize the eagles and words in Isiah 40:31-- You shall mount up your wings like eagles. You shall run and not be weary. The imagery of eagles locking their wings and letting themselves rise above the winds of the storm--surviving and winning, has always given me a boost. I'm not pushing the Bible at you, but that passage has worked magic for me over and over again. I let it fill my mind to focus on winning and push the bummer thoughts out of it.

Hope this has been helpful and helps lead you to find your own solution. We are all in it for the duration and by sharing we can make it a better trip.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I try to make time for things I enjoy. It could be forcing myself to play guitar even though I may not be into it, listen to music (love the blues), or take a kayak ride (now that the lake is no longer frozen over). I actually have gotten to be a better blues guitarist and I owe some of that to cancer. You gotta suffer if you want to play the blues. Other times a good cry either with my wife or alone helps too.
There are as many ways to find comfort as there are people.
There is meditation and medication too. Whatever works, I feel all options are open.

Also, wait for tomorrow, sometimes that does the trick

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Sonia: I have been fighting for three years, and everyone tells me what a great attitude I have, but sometimes, it really gets to me and I fall apart. I am extremely blessed that I have a three year old that tends to snap me out of any deep funk, but I also have tried the following: I write a journal where I can express my deepest feelings without freaking anybody else out; I use this site as my reality base when I need it and reading everyone's struggles reminds me everyday I am not alone, even though sometimes I feel like I am; I stay away from negative and/or pitying influences that make me feel as if I am a sick person, rather than a normal person battling an illness; and most of all, when I do get into a funk, I let myself cry and all that, but refuse to give cancer any more of my life than it has already taken. I have even gone so far as to take anxiety medication for a short period of time in order to accomplish this. I hope some of these ideas help, but ultimately, you will find what works best for you. Best wishes, Sonia. Monica

PS - Meditation is amazing if you can accomplish it. Unfortunately my mind rarely stops long enough to allow me to get deep into it, but the couple of times I did, it helped tremendously.

spongebob's picture
spongebob
Posts: 2598
Joined: Apr 2003

Sonia -

Monica and others have captured it quite well. I was in the midst of a really nasty divorce, hadn't seen my kids in months and was living alone away from friends family or anything else that might keep you sane. I also had to get a 2nd job to be able to keep up with legal bills, pay for my apartment plus the marital home, and - oh yeah - have some food in the house (good thing I wasn't hungry very often!). Sometimes I really wondered what it was all for? I really thought some nights that it would be easier to just let the cancer have me.

Anyway, I focused on the light at the end of the tunnel and came through the storm. Remember, when you get down, there is DEFINITELY a light at the end of the tunnel. Focus on that and push ahead. I also agree that meditation is very helpful. About a year ago one of the officers that worked for me got me a book called "The Calm Technique" (http://www.amazon.com/calm-technique-Meditation-without-mysticism/dp/0760715246) I guess I was getting a bit too stressed out. It's an excellent book that works you into a daily meditation routine without all of the mystical magical mantra mumbo-jumbo that so often accompanies meditation books.

Be well.

- SpongeBob

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

Nowadays, when I am having a down day - I come here. Sometimes reading other's stories makes me realize that I don't have it as bad as I could. Other times I spout here and they all make me feel better. Coming out of surgery was a tough one, since I have no friends here, or any family at that time, Once Nick left for work and reality set in that I was alone, I started a journal.. Somedays I would just write and throw it away - that was always great therapy for me in lots of situations. My mind won't stay quiet long enough for me to meditate!

I've started doing some arts and crafts again also - started a hook rug, started painting again. Currently trying to find white wear - I like to make Christmas villages (my ex burned them all too). A friend bought me stuff to start making my own cards, only I have no idea what to do with the stuff yet..

FAPMom47
Posts: 68
Joined: Feb 2009

It does have it's ups and downs, but everyone is right keep yourself busy doing what you like. Just take one day at a time, I learned the hard way to do it. I cried all the time,wouldn't go anywhere that had alot of people. I like staying home, I had to start getting counceling. Everyone worried about me, so now I get on my computer and jusy read posts here or play games. It just depends how I feel, don't let it get this bad for you. I do better now that it is getting warmer, I will be going to my 4 1/2 year survivor Relay For Life on May 15th. I enjoy going and seeing people like me. It gives me hope.

Much Love and Hugs
Jackie

kmygil
Posts: 881
Joined: Feb 2007

Hi Sonia,

This is a very, very good topic, because anyone who says they stay upbeat & positive at all times is a liar:-) We all have or have had those dark times, even on antipressants (LOL!), and we all have different ways of coping. I am a fortunate person inthat I have a great denial mechanism. When I start going there my brain sort of immediately switches to some other topic, like "Where exactly are the hummingbirds now in their journey north?" or "I wonder what my dog is thinking about?" When that mechanism fails, my body just goes to sleep on its own; Boing! Just like that, I'm asleep. I have honed these "skills" over a lifetime of depressive bouts. Yes, Cleopatra, Queen of Denial! Now that I am on antidepressants I cope much better and face reality a bit more without mentally removing myself from the situation. The dark times come and go, but I have found that our innate compulsion for survival trumps everything and we forge on. Now that I have blathered on, just remember, a dog is excellent therapy!

Hugs,
Kirsten

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I'm not in denial, I just create a whole new reality....hehehe. Yeah, sometimes when I'm upbeat people assume that I don't really understand the 'gravity of the situation' or I'm in denial. No, I get it and so do you. I have just decided that if I don't like the reality I have, well then, it's time for a brand spankin' new one! I really like the idea of wondering what the dog is thinking - what a great diversion!

You crack me up!

Kimby

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I'm going to steal your "Cleopatra, Queen of Denial"! I agree with Kimby, I don't believe it's denial as much as a very efficient method of coping. One can only stay at a heightened state of anxiety for so long before the dam breaks. I merely work it around in my brain for a bit, then life goes on, as it always does (at least until I am called home!). There's nothing wrong with mental diversions, they keep us sane and able to fight, whatever the near and present danger. I don't have a dog, but my brain does ponder strange things, as anybody reading my blogs can see! I actually think that ability is what makes me strong and it's what makes you strong!
mary

kmygil
Posts: 881
Joined: Feb 2007

Both you and Kimby are right! When I have to do something distasteful like mopping the floor, I pretend I'm a scullery maid 18th century England. I blather on in what I imagine to be the accent of a scullery maid in 18th century England, and I keep it up until the chore is done. Time passes quickly when you're thinking up dialogue! On long commutes, I imagine that I am commander of a starship crewed entirely by criminals who had the choice of death or exploration in dangerous space. BTW, I, too am a criminal commander--I stole a spaceship and only got caught because it broke down in a wormhole & got spat back out.

You want more? When I clean the bathroom, I imagine that a bloody massacre took place there and EVERYTHING must be sanitized. I imagine the massacre, why it happened and who did it. Or I imagine that aliens carrying a lethal virus were housed there and everything must be absolutely clean. This gets me through toilet scrubbing etc.

Yes, I'm nuts, but I enjoy it.....

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

OMG! I got a wonderful belly laugh from this post! Now that you have actually committed this to ink, you will NEVER live it down!!!! :) The mind is a terrible thing to waste, as they say, and it sounds like you have a WONDERFUL way of using your brain to entertain yourself and make the boring things in life fun! Wish we lived closer, you must be a blast at a party!

ETA: I imagine what people's lives are like when I am out at appointments and such to pass the time! I make up wonderfully fantastical things that are going on with them that I might have to intervene for! ;)

mary

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

And we know I'm all about fun! You have a much better imagination than I do. I'm so jealous. What a hoot! This canzer gig must be a piece of cake for you - LOL. Laugh in the face of it. Laugh loudly and from the belly!

Kimby

tiny one
Posts: 467
Joined: Jan 2009

For me my depression didn't hit until I had my ileostomy reversal and was in alot of pain. Get around people don't stay alone. My cancer support group has been a Godsend. Another Survivor understands how tough it is. It's hard when it's time for screenings also. I kept a journal and that was helpful. There's some good books on dealing with depression. One is the Cancer Conqueror. Some people find meditation to be helpful. Kick your cancer to the curb. Shoot it right in the behind and only focus on your healing. God bless.

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