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Having a Down Day

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've just been on Facebook for the last hour or so. And I find that I'm sad now. Two friends are away, one in Disneyland and the other in Vegas which is her fourth time away in the past year. I haven't been anywhere in four years. I'm happy for them but I'm sick of my only positive posts being about not dying. Something other people take for granted. I don't post very often about my health but I do if there's a change that seems like something people would want to know because it's easier than telling everybody individually. So my posts are about my good news healthwise. Which is great that I have good news but nobody else has to post about something so basic. Good news, I'm not going to die soon! I'd like it to be that I'm having fun or doing something that enriches my life or somethig like that. Sorry for whining, I just needed to get that off my chest to people who understand. I'm so sick and tired of the cancer and blood lot thing hanging over my head.

 

danker
Posts: 1282
Joined: Apr 2012

Are you currently healthy enough to take a vacacion?  If so, can you afford it?  Cancer definately sucks, but unfortunately we have to live with it!  I wish yoyu well!

jen2012
Posts: 1607
Joined: Aug 2012

Yes I so get that!  I only recently got a fb acct and it's in my dogs name!  I don't want a lot of friends, because I feel that jealousy and I'd rather not even see all of the normal life posts.   It's aggravating.  Though it's the same in real life..was picking my son up right before Christmas and listening to two moms talk about how stressed they were trying to get ready for Christmas.  They just sit in the car and cry sometimes.   Oh poor babies..all that shopping and wrapping.   Stressful I know.

if you can get away for even a weekend, Try to do it.   Or a pedicure, lunch out.  Little things are a nice break in reality.

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

I am sorry you are feeling low today. It happens to the best of us, and sometimes more so when we are struggling to live a 'normal' life. Sometimes we look at others and realize things won't ever be 'normal' for us again, and that may be true, but we can do what we can do. 

I've been saving dimes and quaters for the last five years. I'm in the middle of counting them, and it looks like there should be enough for hubby and I to fly to Southern Californial to stay with Yollimbs (yes, our very own forum friend) and her lovely husband, this year. 

I also save dollar bills, and when I have enough I get a facial or something else special. 

I know it doesn't sound like allot, but if we can make sure we allow ourselves to a treat, big or small, it can make the world of difference. 

I know we're not like your FB friends (I'm always up for new FB friends if you want), but you know we're here for you, and understand these emotions. 

Cyber hugs!

Sue - Trubrit

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

Sorry you're having a down day. I agree that it's worth it to  indulge in something fun to counteract the  bad feelings.  If you  feel up to it and can afford it, go for  a vacation- even a short one to help rejuvenate yourself, or  indulge in some other activity that brings you pleasure and  enables you to push the cancer thoughts into a very small corner of your head for a little while.

I   was debating with myself over the last few days as I   indulged in my usual pre-diagnosis winter occupation of poring over seed catalogs and planning a garden.  Since I  just finished up  chemo and then chemoradiation and  won't know for a while  what treatment comes next or what the next scheduled scan will show, should I just forget ordering seeds this year? If I plant seeds, will I  even be able to take care of a garden, etc., etc.?  Then I remembered that saying, "To plant a garden is to believe in tomorrow." I just ordered the seeds!  Watching seeds germinate has always excited me- I'm  like a child discovering something new every time I  witness those tiny  little stems breaking through the soil and lifting their heads to the light. On some level, doing  this "normal" activity is an affirmation that I am still here, still me and that there are still  many things that can give me pleasure and hope.  And even if I'm not around to  enjoy the harvest (which I hope I will be, by the way) it's worth planting the seeds.  And since I DO hope to be hale and hearty enough to reap this year's harvest I even ordered a new cookbook  that  gives recipes utilizing  the bounty from the garden.  

Grace

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

I am so glad you ordered your seeds. You will love your garden as if you were new to it. 

I've never heard of that saying 'To plant a garden is to believe in tomorrow'. How apt! 

Sue - Trubrit

John23's picture
John23
Posts: 2140
Joined: Jan 2007







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A vacation for me would be nothing less than an out-of-body experience.

I have a PICC line hanging out of my right arm, an Ileostomy bag hanging off my left side, and two nephrostomy tubes, one hanging off each side of my back feeding rather large rubber bags that collect urine. My rectal stump discharges so much mucus, that I now require a sanitary pad and Depends underwear, and my “ding-a-ling” discharges blood.

I look at myself in the mirror naked…. I no longer appear human; it is a surreal experience.

People that know me say I look great. My physician said I have good color….

I said: “so does my urine, but it’s still pee”.

Cancer is a downer. We all lose so much. Very few of us escape the ravages of it. And we rarely can avoid worrying about tomorrow and if we might to be able to actually see it.

People can attempt to dive into a hobby; lose oneself in preoccupation and burrow into deep concentration in something other than cancer, but for most of us it’s useless. Oh, it works when we’re feeling OK, but as soon as we feel a pain, or a bump, or some sort of a sick feeling that we can’t explain, all the hobbies and vacations mean nothing. We sink into a sadness that comes from the despair we try so hard to disguise.

Some take happy pills… 

I’m not all that happy, and I don’t care who knows I’m not happy. I’m too busy when I’m not too sick to be busy, and I won’t have pills slowing me down. If I’m seriously depressed at times, I have reason to be.

We all, every one of us, have earned the right to be depressed. Most all of us don’t need to feel happy as much as we need a shoulder to cry upon.

Let it out. Take a ride and let it out.

Do what I do….. I see a healthy individual on the street… I give ‘em the middle finger. “Make my day”.

 

Be well,

        John

 

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I got thru Christmas and new year without talking to anybody except the cashiers at the local chemist. I agree that we have earned our depression. It is not about chemical imbalance it is about the total lack of good times. I have always been totally independent , I can do a lot of things and I can fix almost annything, that has not changed  just how long it takes to do it and fix it  not to mention the weeks of recuperation afterwards.  My boss's husband and son in law are both mechanics. Several times in the past twelve months I have asked one or both to change all of the belts in my 4x4 tray back ute. I can barely get the lid off a jar nowdays let alone undo an oil filter buried in the bowels of a diesel motor. It seems they were always too busy to do it. Mind you I was not asking for charity I was offering to pay the going rate. So during some time off over christmas I changed all the belts , the oil and fuel and oil filters. I was totally stuffeed for the rest of the hols. Now I am coping flack for doing it all myself and nearly killing myself. I may no longer have cancer but I am probably closer to dying than I ever was when I had it. Why can't people get that because someone no longer has cancer the impression that they must be well is crap . The people on these boards are the only ones I ever tell how I feel . The rest of the world can do me a favour and leave me alone.  I just do not feel that I can ask for help anymore. Do people see me as a lifetime commitment if they help me? I fear that after cancer we become refugees and no one wants to deal with refugees. I do what I can when and if I can and if I can't I don't stress I just don't do it. I don't like it but short of opting out I don't have a lot of choice. In eleven days I reach the end of year seventeen of survival. I was not unhappy with the three years they originally offered me. Ron.

John23's picture
John23
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You paid the price Ron; we all have.

I didn’t suffer the results of chemicals or radiation, but the surgeries got me. The misdiagnosis’s got me, and the misapplication of western medicine pharmaceuticals got me.

An antibiotic (Z-Pak) sent me into a downward spiral. It was one thing after another for the past two years, and my requests for a sigmoidoscopy was claimed to be needless by the gastro doc I trusted. Damned signet cell cancer in the rectal stump now. Could have been removed 1.5 years ago. Now it appears to have invaded the prostate and bladder. I’m looking at a lot of surgery. The herbs stifled the growth, but I hadn’t taken any since 2008. No need to; nothing there… And I’m waiting to hear if they’ll operate at all, or just offer hospice. I had MRI scans 1-8-16… But nothing but open surgery will provide a look at what’s going on. If they open you up and see it’s gone too far, they close you up and send you off. There’s not much sense in healing for 6 months if they only expect you to live 9…

In 2006 they gave me 3~5 years IF I did chemo/radiation, and -0- time if I didn’t.

It’s funny how life works. I was clean since 2006. The herbs worked. Now, thanks to a wrong diagnosis of a symptom by a specialist I trusted, I’m in a really tight spot that only surgery may get me out of. Cancer cells don’t worry me (much), but tumors take their toll. It’s hard (if not impossible) to knock down a tumor with herbal concoctions.

We all pay the price Ron. And no one really knows what it’s like except those of us that go through it. I’m like you, I come here because I understand what others are going through, and those that are here know what I’m going through. It’s a comradery that we never hoped to be part of, but we’re all fighting the same battle, regardless of the weapons we were given.

Best wishes Ron… (and to all those reading this thread as well)

John

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I was operated on on jan22 1998 . so ends year 18 start year 19.

fedester
Posts: 758
Joined: Jul 2004

Congrats on going into your 19th year.

I am starting my 12 year.

Cheers !!!!!!!!

All the best

Bruce

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

  Wishing You a long and cancer free life mate. we have done the hard yards now we just have to look after the small change Keep well Ron.

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

...we can't afford or don't want to take a vacation. We have to find fun activities where we live and find joy in them. I live in Los Angeles now and try to go somewhere every day. Go to a mall and look at clothes, electronics, books, furniture. Or simply sit down and enjoy a cheap meal or coffee. If I see somebody interesting I will try to make a connection. If we can't enjoy the small stuff a big fancy expensive vacation may not leave a big impact in us either. But it certainly will in our bank account.  

Laz

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

yup it is as easy as pie to have a down day with the games we have to play. I know how you feel about vacations too....who can plan such a treat.....oh sorry you have to start chemo next week.  Sometimes it isn't the vacations that get me......it is just the plain fact of not feeling normal.  I can stand on the street or sit in a coffee shop and watch people and just feel envy at their apparent normalness.  Not having to worry every second about some fresh cancer hell.  When i get out of the bathtub now there is a mirror right there but I have taken to avoiding that sight......yikes.....how much more of me can they carve away.....

yup Janjan....you can have one big fat down day if you want to

all the best love to all.......mags

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you everyone for your support and for not telling me I'm a whiner. Or I should be grateful I'm alive like I hear so often. "Yes, but you're alive!" I am so very grateful I'm alive, I know how close I came when I had the blood clot. And I'm very lucky regarding the cancer, too, because so far I haven't had any issues beyond the initial cancer, assuming the lung spots turn out not to be cancer. But we all need something to look forward to and I feel like I have so much less than the average person.

Any future plans have to be tempered by the cancer. It's so frustrating. And nobody else has to be grateful every day that they're alive, they can just live and not have those thoughts. I'll be honest, I'm so jealous of their lack of concern and joy of life and they don't even realize they have it. At the same time, however, my feelings right now are rare for me. Usually I just plug along and don't get down and am just grateful for life. But every once in a while something triggers my negative feelings and thoughts. Probably seeing the radiation guy the other day and him telling me that he's pretty sure the lung spots are cancer set me off and this thing on facebook just finished it for me. He said that there are likely seeds all through my body that came from the original cancer and can start to grow at any time. And he strongly suggested I get in shape because this will fight them off more than anything. Get in shape? I could barely walk not that long ago. And I still have neuropathy in my feet from the brain injury or the chemo I was on at that time, not sure which. Not to mention aches and pains that seem to have no explanation. My legs hurt all the time.

Anyway, I'm back to my usual self, just plugging along and accepting that my life will never be the same and things can go south in the blink of an eye. I hate this new reality and the loss of hopes and dreams. But I'm still here and I guess that's the most I can ask for.

I wish I was young enough to start a career in cancer research. At least then I'd feel useful.  

Love to all of you. And good health. Thank you.

Jan

 

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

Vegas and Disneyland, living in SoCal, I've done both enough. I know that's not your point Jan, and I feel your frustration, but I've been "riding high" enough to know it always looks better than it was or is. My wife's sister and family live in Lake Havasu and Facebook is full of photos at the various bars and restaurants, beaches, and on the lake, every week. It's like a neverending party, and here I am trying to put the fragments of the life I thought I was going to have, back into something I can move forward with. Having earned my right to be down, doesn't make it feel any better. The one thing I have going for me[and I've mentioned it before] is I can't stay down, I get tired, bored with depression. Since I can't just up and go somewhere far away, I find solace in either working on stuff, walking, taking a drive, reading, or music. Like all of us here, I have to get the most out of the little things in life. Having the granddaughter and son to figure out and provide for help with my sense of purpose, but finding contentment and any sense of wellbeing, is like catching a greased pig, very slippery.........................Dave

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

Ron, I like your refugee analogy, like we're somehow outside of who we were, and who others still are, and the lives they continue to live. It's all perception, but coping with that POV may be the biggest fight for a real quality of life, beyond  the physical stuff.....................................Dave

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

OK, it doesn't 'belong' to me, but it does; if you know what I mean. 

Ask anyone here who sees my FB posts. Canyon pretty much dominates. Birds, rocks, flowers, Mountain Lions, Creek, snow, sun, thunder and lightening, Rabbits, Snakes.......

The Canyon is my healing place. I think we all need a healing place. It doesn't have to be out in the elements; but something that works for you as an individual. 

We have to find peace with our lot. And yeah, struggle through those moments when we just wised that.......  We all have them. 

Sue - Trubrit

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

as most who post there curate their lives and only show the positive aspects of things.  This can give us a false sense of how good everyone else has it, compared to ourselves.  I'm on FB every day and I have to remind myself of this from time to time.

And on occasion I get a great reminder, like the time someone I know in a private FB group posted about how her husband had done some really awful, relationship-ending stuff to her.  Then two days later she was posting on her public profile "best husband ever!!  love him so much!"  etc.

It was kind of eye-opening really.  :/

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Yeah, I saw a post on facebook today where the person is in a flap over the fact that her TV isn't working and nobody can come and look at it for two whole days! Should she get an antenna for now? I felt like replying and saying that I'd pray for her or something sarcastic like that.

I think my problem is just a few things all at once. And, yes, I'm tired of the constant worry and never getting a real answer. If a person has an infection or the flu or whatever else they can tell when you're over it.

I'm also unhappy because I kind of feel like I don't have much of a purpose right now. I'm working in an area I have experience in but it's not a job that helps people or is fulfilling at the end of the day. I miss the business I owned and I'm still angry that cancer took that away from me.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I had to resign from my job in 2010.  The perfect position for me (I worked as a public librarian, and it was a sub job where I could say yes or no to shifts...great for raising kids while making a little cash), and it's unlikely I'll get a chance to return to it at this point.  Thinking about making some kind of career change but that's complicated too.

Cancer is a thief.  Even if we get to keep out lives (which is huge of course), it still takes away so much.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   That there is a vacumn concerning cancer. I have type two diabetes. Those that have it in Australia usually join  ndis which is a group that provides a long term healthcare plans for those suffering with diabetes. It saves me quite a bit of money. My health care group runs free clinics that cover things like diet and nutrition and do free foot checks as well as glucometer checks plus I get my test strips free. With cancer there is nothing. Colonoscopies are my responsibility and paid for by me . They check for new cancers but there is no health care plan to monitor the ongoing health of survivors , at least not in Australia. When I had chemotherapy they claimed that they were obliged to give the patient the best option which killed cancer but not the sufferer. They further told me when I asked about longterm side effects , donn't worry we will deal with that when it occurs. They haven't and they don't. Some of the drugs they use were quite unethical. For example , I was on levamisloe ,acouple of years after I was on it , it was banned for fatal side effects. They still have to be considered responsible for giving it to me. It seems to me that there are just too many survivors going thru hard times for there not to be a duty of care to them. Certainly the medical profession was not guilty of giving us cancer but they are guilty for the quality of our treatment and to some degree our long term health. In many cases survivors can not work so they can be seen to be a burden on society. Unfortunately we are not judged as cancer survivors but as sufferers of other conditions unrelated to cancer. I ust feel that there needs to be a much more honest assessment of cancer survivors and the promlems they face as a result. When I applied for health benefits whilst I was recovering from surgery and chemo , I was told there were none available as cancer is a short term illness. Rant over... Ron.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I blew up on a grocery line once.  People were bitching that the lines were long and they had to wait for 15 minutes because there weren't enough cashiers.  For a few minutes I tolerated it and then the conversation went something like this . . .WE LIVE IN A COUNTRY WHERE THERE IS FOOD AND WATER AT YOUR FINGERTIPS, WHEN YOU HAVE TO SEND YOUR KIDS 6 MILES TO GET WATER AND DON"T KNOW IF YOU WILL EAT FOR DAYS, LET ME KNOW.  AND BEFORE YOU SAY ANYTHING STUPID, I HAVE COLON CANCER BUT YOU KNOW WHAT, I LIVE IN A COUNTRY WHERE I CAN FIND TREATMENT AND HOPEFULLY BEAT THIS SO NOTHING YOU CAN SAY RIGHT NOW WILL IMPRESS ME... TRUST ME I WIN!  NOW SHUT UP BECAUSE SOME OF US DON"T WANT TO HEAR YOUR COMPLAINTS ABOUT HAVING TO WAIT A FEW MINUTES.  SOMETIMES YOU JUST HAVE TO WAIT. And with that there was silence and people waited.  lol  I think I scared people but I was pretty pissed off that day and didnt' care.  I was tired, I was sick from chemo, the cold in the supermarket was painful due to neuropathy and I still had to make sure my kids had food.  Now when strangers ***** to me on a line or about something really stupid, I tell them that I just beat colon cancer so I'm not impressed and they shut up.  Family can do it because they are family and regular life is hard enough, cancer just adds that extra are you kidding me!

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I don't know why these comments came out three in a row, they were replies to different people=)  Yup, you're so right, you're on my facebook page so you see.  There is no indication that I am in the middle of a divorce because it's not the business of the people I went to elementary school with so I don't put it on there but I am and it hurts.  Same with cancer, only the people in my "present life" are even aware I had it.  I never once said it on Facebook.  People PM me if they want to know.  Facebook is for social interraction and humor, it's not a place to tell the truth about anything. My friend posted loving pictures of her husband the week after she told me they got into a fist fight and she hit his head into a cabinet, I was like wait what?????  Why would she post these pics. I mean there is faking and there is insane and that's insane.  Between that and the arguing over politics, I had to take a month off of Facebook and I only mostly post memes and funny stuff.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I am now NED and still can't go on vacation either. It's been 5 years. Too many after cancer doctor appts. and problems with sickness and neuropathy not to mention the cost.  The cost of cancer is mind blowing not only do you have to pay for doctors and meds but there are so many days of missed work and it all just spirals.  I owe a lot of people a lot of money at this point.  I also had to tell my job that they were killing me giving me assignments I used to be able to do presurgery.  I just didn't want to be a whiner and tell them I was in serious pain.  People don't get it.  I'm sorry you're still going through it, it totally sucks.  I'm hoping to be able to take a vacation in a year or so.  My "escape" this summer is going to be the beach and walking through the woods at the local park even if that means getting up at 6am so I can have some peace and quiet. 

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

We camp at the beach every summer for several days, near Dana Point. It's cheap and easy, maybe 100 minutes from home, so I can stay there and go to work when needed. There's plenty of interesting day trips from Beaumont, the desert, the mountains, LA are all about an hour or less away. The longer trips are tougher these days, the time, the cost, but I'll figure it out. The boy turns 21 in April, and I promised a Vegas trip so he can learn the "ropes". I need a trip for the granddaughter, before going with the old guy loses any appeal, maybe north to Yosemite and other stuff. So much rides on staying "clear" besides my own comfort. I keep thinking life owes me a break, but we all know what crap that is. So I'll settle for some luck, and wish it for the rest of you as well......................................Dave

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