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I'm tired, I'm pissed

nkeelty's picture
nkeelty
Posts: 18
Joined: Nov 2015

I am s tired and so pissed off. I am 2 and a half years into this lifetimetime of chemo. I am so sick of being sick and tired. I want my energy back! I want a life that doesn't revolve around chemo, blood tests, scans and doctors appointments! I want to live a life that has energry, that has a meaning! I want my life back!!!!

blessed39's picture
blessed39
Posts: 90
Joined: Dec 2016

Dear tired, it doesn't seem fair does it? Just like me, you asked your self why me? What did I do to deserve this?

I'm a good person. I love my family and friends. Nothing in this life seems to make any sense, right? Please read my story on my blog

entitled "How I Beat Stage Four Colon Cancer" If nothing else, I think you will find it interesting. God bless     blessed39

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm sure most all of us have felt that way at some point. I've found that the tougher the treatments are, the more I miss my pre-cancer life. Try to keep in mind that life always has meaning. One of my favorite quotes by Joseph Campbell (the other JC) is this one:

"Life is without meaning. You bring the meaning to it. The meaning of life is whatever you ascribe it to be. Being alive is the meaning."

Sort of a Life is what we make of it thing where it's our responsibility to have meaning in our lives, not someone or something else's responsibility. There is another thing that a friend told me years ago when I was first starting out. She said "Sometimes we have to go through things, not around them" which I found to be helpful during the tough times.

I didn't feel you were asking Why me? like Blessed39 suggested. I never had those feelings at all. I viewed it as Why not me? I was just very happy that it wasn't my wife or our sons. The one thing about cancer is that it's equal as far as who gets affected by it. 

Try to hang in there and also allow yourself those times to get pissed off!
-phil

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

I agree. I keep thinking I'll be 'back to normal' at some point but I'm slowly starting to accept that this probably is normal for me now. I'm also tired of not having the life I had and being so tired and in pain every day. Every. Single. Day. I keep waiting for the day I'll feel better but I doubt it's ever coming. It's good to be alive but a little better quality of life would be wonderful.

Jan

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

really miss being "normal". For the first few years, I had to adjust to a new normal. After a while, I saw that there's no going back (for me). I can't tell you how many times I start sentences with "I used to..."

 

plsletitrain
Posts: 253
Joined: Jul 2017

I know we sometimes reach that point where we've had enough and we just wish all of this is a nightmare.  Please try to do the things you did pre-cancer (as long as your body can tolerate it) so you'll feel the normalcy despite our "normal" not being the normal of people who don't have cancer.  Rise above yourself and tell yourself this too shall pass.  

Msmoxie
Posts: 46
Joined: Dec 2017

I am one of those people that cannot even take the treatments since I have multiple cancers going on at the same time.  If the Oncologists did what they typically do for each of the cancers I would be dead in just a few short months.  I am not pissed about that.  I have twenty seven friends and family that I have lost to cancer/treatments in the past ten years and not one of them have escaped the side effects:  chemo-brain, fractures, loss of hearing, mucositis, radiation burns, mouth sores, and so on.  I was only diagnosed seven months ago and everything is T3 with node involvment ...my gastroenterologist said that breast cancer doesnt metastasize...my breast cancer doctor said it is the number two met...breast to gi tract ... I am basically under palliative care and no one knows what is going to happen with all of this but I am reading everything I can in the professional journals, NIH, Sloan, Mayo, MD Anderson, American Cancer Society, and several dozen more sites.  In each cancer they are still studying doses, timing, intervals, breaks, combinations, targeted therapies, radiation strength, etc. etc.  What really pisses me off is that the doctors know that they are treating the cancer ... until they don't know what else to do... THEN they treat the patient.  I am thankful that my primary care physician and my radiation oncologist (who knows he cannot give me any radiation to help shrink my tumors)... these are the two doctors that understand my concerns and help me with whatever I need to alleviate spasms and pain and prescriptions of Lomotil and Immodium that help me to still be able to go out and work and take care of my eighty-two year old Mom.  

My entire career has been in health sciences and medicine and the doctors know that the standard protocol is highly toxic and that the radiation causes horrific burns and they know that they must find a better way... even a recent NIH article regarding removing lymph nodes in regards to anal cancer is "merely speculative"  ... how's that for wanting to strip out your lymph nodes??!!  My point being.... READ EVERYTHING... not the patient portals (they just want you to listen to your doctors)... read what the doctors should be reading.  I never in a million years thought that I would be fecal incontinent with tumors on my sphincters, fistulas and the never ending cleanup... There has to be a better way and I am trying to find it.  

I Thank my Dad and Mom for making me so strong-willed, strong minded and genetics made my physically strong until my fifties... from what the doctors say, I have had these tumors for five to ten years... they just missed them on previous screenings... 

Thank you for being another soul out there ... not always happy... sometimes PISSED!!

Moxie : )

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Your story touched me. I never thought I'd agree to chemo or radiation, but endured 28 radiation treatments and Xeloda last Summer because they refused to do surgery until I tried to shrink my main tumor. I had a large tumor in my rectum and all naturopaths I consulted agreed it needed to be removed to give me a fighting chance. I am grateful for my surgery, which also meant a permanent colostomy. The colostomy is nothing compared to what that tumor was doing to me! 

Anyway, I admire your strength and courage. Keep reading and researching and find more doctors who are willing to help. I have settled on an anthrosophic approach. Mistletoe injections have brought me back to life! Next scan will reveal if they are stopping the spread. My quality of life is quite good now and I work full time. I also do intravenous Vitamin C, Cannabis oil, and various supplements. 

We are all unique, as are our cancers. We need to do what feels right. 

Best wishes to you, -Beth

coleadams
Posts: 7
Joined: Mar 2018

no cure for cancer, but wait.... remember the ibm 360 computer, with its tape drives etc, 1 ibm 360 would take up the space of  500 sq ft or more in hardware... now fast forward to now... you can pack 1000 ibm 360's into the size of your cell phone... now is that a miracle, no technology and innovation.. and they can't find a cure for cancer..give me a break !! Nixon declared the war on cancer in 1973, 45 years later, no cure... and don't give me that bs about 5 years and 1 day, as survival...

beaumontdave's picture
beaumontdave
Posts: 1062
Joined: Aug 2013

So what are you asserting is true here?

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

My butt hurts when I sit in my recliner. Went to see my Oncologist today and let him poke around. The pain is in my right cheek an inch or so away from my anus. I didn’t feel any pain as he pushed all around my rectum with his finger. No blood.

Who knows?

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I'm sorry that you are going through this.  There are times when people just get down and feel they have had it with the situation but gather more strength for another treatment or another ray of hope.  I'm wishing you some light and hope that you get it soon.

Kim

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Life can seemingly throw many toils and tribulations at us. And so metimes it feels so unfair. And sometimes It is overwhelming! Then, in the end, we all die. 

For me, cancer has been a radical spiritual intervention. It has brought me face to face with my mortality. Smashed me with the truth about my human existence. And left me wondering about the meaning of life.

Unfortunately I can’t tell you I have found meaning that solves the pain, fear, anger felt throughout the cancer battle. 

I still have pain, fear, frustration. But I am trying to remind myself that my life is NOT about me. For me, the purpose / meaning of my life is about me being present for my wife, children, siblings, friends, family, colleagues. And somehow the pain, fear, frustration, are obstacles that MUST be seen as exactly that. Something to be overcome, worked around, busted through. 

This was a tough week for me, but on Friday I got to hold a beautifu ten month old grand daughter. To laugh with her and to appreciate her mesmorizing beautiful blue eyes. When I held her the pain and fears seemed to escape me. Maybe it was the Motrin I took before picking her up? Regardless of what helped me overcome the issues, the point is that holding her, laughing with her, that is a moment that gives my life meaning.

And holding my wife’s hand.

And enduring many toils at work, helping my colleagues push forward.

And texting with my daughter, struggling through a tough miscarriage. 

These are all examples of why I fight, endure, and search for meaning that makes dealing with pain, fear, and frustration obstacles something I just have to do.

 

Ottawamarc1234's picture
Ottawamarc1234
Posts: 148
Joined: Feb 2018

Cant sleep at night. Picc Line Itches..Wax buildup in ear...stiff neck. Did one week chemo...Radiation 5 days a week. Anal HPV tumour right butt cheek. Weird pain and never ending pooing problems....

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Adapting to change is tough. 

I get very frustrated with the side effects of cancer treatment. It's been 2 years since my diagnosis and I still have no not adjusted. I'm still in "get through" mode. 

One thing I have learned though. I want to be here. I don't want to die. I'm not afraid to die, I just don't wanna! I want to be here to see all the changes that come. 

I get so tired of it all but I keep on. I hope you can too.

K

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

     One was that it if life didn't live up to your expectations, change your expectations. I've found that I've had to live by that rule. Pretty well every day when I wake up alive I have to change my expectations. Can I do what I used to do ??? NO WAY.  It has been twenty years since my cancer was removed. I was dxed at 48 , in two days I turn 68. I am still working four days a week{because I can) , I can still get around under my own steam but only just. I still drive but I need a medical certificate to  do it. I still breathe but there is a machine on my bedside table that helps with that. I live alone because I would not expect anyone to share my existence . After 20 years I still get prodded and poked for cancer... they removed 4 tubular adenoms last scope. I take dreadful drugs still, i need cyclosporine twice a day and warfarin every day to keep going. I have four serious auto immune problems but they have no Idea of the cause. Everytime I have to go into hospital I suspect I won't come out. I can't find anyone with a magic wand so I suck it up and do what I have to do to get by in my normal everchangig life. I guess if I cant live the life I want i'll just live the one I've got , Hugs to all. Ron.

aoccc2015
Posts: 37
Joined: Sep 2017

I totally feel you..i am year and a half into lifetime chemo and if it wasnt for the motivation of seeing my 2 year old girl every morning before i goto work, i would have already found a nice place to go and die it out. Cancer has made me go out and do everything, people, god etc that i  used to take for granted. Even with crohns slamming me for 20 years while still trying to work a full time job, i didnt get the hint and lived my life the way I wanted. Now I live for others and it feels much more of a purpose. Im 40 now and if i lived in any different era, in any other country, I would have not been gave a second chance and would have died with that colon blockage. Ill make the best out of what god has gave me until my third chance:) Take care everyone.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I wanted to write the same thing today about how tired I am of this disease. I'm so inspired by all the comments. I also find inspiration in my family. Let's all keep defying the odds. And just enjoy every day. My doc reminded me today that every day you feel good is a gift. So very true. 

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

Like Ron who has been here forever has written so much passion about dealing with all of this for so long, we all feel drained.  I've been 9 years and although not going through treatment everyday, I'm dealing with side effects just from the treatment.  It's humiliated me when I've had accidents, it's kept me from family functions, it's kept me from a sex life, it's taken away my dignity and I'm still able to wake up and thank God that I'm still here to see my husband another day and my kids and grandkids.  It's down right not fair. I'm hoping that you get some good days ahead.  It's hard though.  Praying for you.

Kim

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  Even though my condition isn't as bad and I'm not even a year since diagnosis and within a few weeks of ending the final treatment, I've said that same thing over and over.   I'm sick of being sick.  Everyone has so we're all in the same boat. Knowing someone who's had it and beat it is probably the best medicine.  Hey, that's me! Just be sure to follow the doctors advice.    

 I never really got too overwhelmed with the illness but it was enough to stop me from doing the things I really wanted to.  Like, being away from a toilet for more than 30 minutes. That's something not many consider.  That was a while back and at this juncture I'm able to hold things until I feel like it, most times.  A little hand foot syndrome which looks God awful but that will pass just like the occassional red eyes along with a valve near the prostate getting cooked by radiation.  It's one of those things you just have to accept as changes to endure.  Sure, we'll feel sorry for ourselves and cry a bit but that's what being human is.  At least we're still alive and that's a gift from God. 

 What may help is focusing on what you'll do once you get cured. Just remember, it could be a lot worse so stay focused on what you have, not what you don't

beaumontdave's picture
beaumontdave
Posts: 1062
Joined: Aug 2013

At nearly 60, I don't think in terms of being cured, too much else can happen. I'm satisfied to be NED, and I do celebrate that I was able to work and function through the chemo and surgeries, that I still have my home and business, that I could get my last child and grandchild to adulthood without them suffering the loss of both of us. It really has been hard, but I don't know where my mind would be if I couldn't see the relativity of ways in which it could have been worse. Relativity isn't the best way to view fortune and meaning, or your place in life, but until I can grasp the kinds of peace and mental discipline I've heard and read about, it will do.............................................................Dave

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Nice to see you back.

BTW, I asked my surgeon about the "Male Issue" and she told me what she thought it was and we'll likely discuss it in the future. It doesn't really matter for now. I started a thread on it a few weeks ago if you want to take a peek. I put "Men Only" but nobody observes those things.

My current frustrations are that most people treat me like I'm normal - which is probably due to me trying to appear normal. But I have a lot of challenges that you all know about. For the most part, others are trying to get me to take on more responsibilities and work and it's not happening. I have three more cycles and looking forward to getting it over with.

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  I've gotten the same reactions.  "You don't look sick..."   Jesus, and then they act as though you're not and you end up getting extra things dumped in your lap.  Been there done that.  Maybe we ought to shave our heads and drag an IV around to make the point.  

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Wow! Thanks to all for sharing. This forum is so inspiring…

Cindy

Ugur
Posts: 62
Joined: Mar 2018

Stop asking yourself the questions without answers.

Focus on what you have and on the solutions.

Take responsibility, for example I have just been diagnosed as stage 4 colon cancer. How do you think does it affect me to see messages such yours. I am terribly sorry that we all have to live this, but being whiny will not help to anyone. 

Once a wise man told, anger is a gift. Don't just spend your gift, but make it useful. Make it wake you up every morning.

Every person has different things to worry. Ours is just a bigger burden.

Keep strong, with love,

U.

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

Nkeelty's feelings are real and should be expressed.  Things are very different when one is on chemo longterm and you get turned down for other treatment options because your cancer is too advanced.  It's not just about feeling a little tired.  I tolerated FOLFOX pretty well in the beginning but at the 7th month it felt like I was being poisioned to death.  Then I found out that the chemo was damaging my liver and spleen.  In addition, FOLFOX is no longer controlling the liver tumors.  My apologies if that sounds too depressing.  I am not able to spin it in a way to make it sound happy.  Some days will be better than others.  I have moments when I just cry and I don't thiink there is anything wrong with that.  Am I supposed to pretend that everything is fine?  I am finding that that is the way many people prefer it because they can't deal with it.  I don't understand it.  It seems so fake to me and not who I am.  But 'everything is great' and 'just be happy.' 

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