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Affirmation and positive thoughts

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

I've decided that not only am I praying every night- which I always did- and asking for help- which I don't usually do, I usually just ask for help for others like everyone on here or am thankful-, but I'm going to tell myself every day at least once that I'm going to beat this and tell my body to fight it off. I've been kind of gliding just letting the treatments do their thing but I'm feeling like I need to do more and I'm really at a loss as to what that is. I'm hoping positive thoughts and prayer will help.

Now that I know my digestive system has a number of thinner areas where the opening isn't as big I'm really having a tough time finding things to eat that don't scare me. And veggies are one ot the things that can be really bad for blockages because they don't digest. Potatoes do but that's about it. Anything that doesn't break down like the skins on each kernel of corn or skins on grapes or anything like that is a concern. I try to carefully chew everything but it takes forever and my food is generally cold by the time I'm done. With nausea being an issue this is really difficult. I wish I could just take a pill to fill my stomach because I'm not enjoying food at all.

Sometimes I just feel worn out and emotionally drained from all of this.

I see the radiation guy tomorrow and my onc on Thursday. Hopefully they can do radiation. And I'm seriously thinking about trying the Vectibix that wrecked my face again. I;m still scarred and probably always will be but make up covers the scars at least. I just don't want to feel that miserable again. I hardly left the house and was crying a lot but then trying not to because my tears stung my skin. Everything made my face hurt like I'd been scalded. And you can only go so long without washing your hair but that was out of the question. I remember thnking at the time that if that's how I was going to feel for the rest of my life or if that's how burn victims feel I can understand why they sometimes take their lives. It was more horrible than I can ever really convey.

Anyway, feeling almost normal finally after the last blockage. Finally, ugh!

Jan

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

I know it can be hard but I wish you the best.

P.S. I'm scared too.

plsletitrain
Posts: 253
Joined: Jul 2017

I've realized that cancer doesn't only mess up with our physical being, it also messes up with our mental and emotional capacity.  I may say I understand how you feel, and although we've got all the love in the world, I know we sometimes think "you're not in my shoes.  You will never understand how hard it is".  I've always said how its easier said than done.  It is.  Especially when you've got little children to take care of.  The uncertainty of their future is what really scares me, that's why sometimes when I wonder if I could live to see their graduation, I just cry.  And then I try to think of happy thoughts.  I work on something else, watch a movie, or a comedy show, just to make me forget.  I think the best weapon we can have is not to think about it.  As I've read in another post, everyone of us is terminal.  We can die anytime, anywhere, if God willed.  

I pray for our physical and emotional health.  You can do it Jan! After my diagnosis, I've devised an analysis for my whole treatment.  It is, the inverse proportionality between cancer and positivity.  If you weaken your positivity, the cancer strengthens.  But if your positivity is strengthened, the cancer weakens.  Remember, we should not let cancer beat us.  

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

I don't think a good attitude ever hurt anyone. I know it is not easy to maintain that. I can't do that and I get scared as well. The emotional toll can be huge as well.

You're in my thoughts Jan 

Woodytele
Posts: 163
Joined: Apr 2017

i know exactly how you feel, physically and emotionally drained, good days and bad days.  This stuff is no joke, stay strong because you know you will have good days coming up, all my best!! 

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Just know that you all are in my prayers even when I've been absent on this board since my brother died in 2015.  I've recently started posting again but all of you are always in my thoughts every day.  My journey started on this boad in 2009 and still continued and tried to give support to people like you are doing now.  Please remember that praying for yourself isn't wrong because I'm always praying for myself.  God knows this and always listens.   I'm hoping that this treatment you want back on will help.  Digestion can always play a role in our lives.  Living wil colon issues will always create a problem you never had before so it's always a learning process.  Hope that you get some answers on Thursday that you are looking for.

Hugs!  Kim

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

Prayers for you and hope that you are able to begin eating normal soon.  "Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us."  Hebrews 12:1

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

Thank you all so very much! I'm so happy I can post this and not be judged. Thank you for the support and kind words, thoughts, and prayers. May we all beat this beast. 

Love,

Jan

danker
Posts: 1280
Joined: Apr 2012

Try the brat diet for a bit and see how you tolerate it.  Brat stands for Bananas.Rice.Applesauce,and Toast.

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

Thank you!!

Jan

beaumontdave's picture
beaumontdave
Posts: 1130
Joined: Aug 2013

They should call it the BART diet, since everytime I see BRAT diet, I think "that wouldn't be hard, eating sausage on a regular basis" Must be my Wisconsin origins showing through...................................Dave

Trubrit's picture
Trubrit
Posts: 5417
Joined: Jan 2013

When the going gets tough The tough get going. 

Its a tough ride, and you have to keep your head about you or you'll sink. 

We are all allowed our down time. When the bad news keeps on coming, its hard to get back on your feet. Top the news with the active treatment, and its a surprise anyone can get up from it. 

You a tough one. I mean, real tough. You've already been through so much. Take your down time and run with it, just don't let it outrun you. 

You're in my prayers. 

Tru

Canadian Sandy's picture
Canadian Sandy
Posts: 699
Joined: Jul 2016

Love your picture Jan! Never give up!

 

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

Tahnk you Sandy and Tru! I got some more bad news today. They do think there's a small mass at the resection site that's causing the blockages. The radiation guy doesn't want to do radiation at this point because it causes so much damage. I see my onc on Thursday- actually she's on holidays so a different one- and I'm going to go back on the Vectibix and hope I don't get the same reaction as last time. I still have scars from that one. But, when they put me on it I was having a period of several months where I was getting hives for no reason. Apparently it's something that can happen to adults occasionally. So I'm hopeful that because that's over with I won't react the same. My skin isn't so 'angry' at this point. Even if it is as bad I'm going to have to tough it out. I'm not working so I don't have to worry about going anywhere and the stress of missing work. But my onc had a test done on my original tumour and it responds well to the Vectibix.

So, another summer ruined. I should just get used to it. And, if this doesn't work there's not going to be very many summers for me anyway.  

What a crappy afternoon. I got the results. My husband was freaking out and ran out of the room crying. He never cries. The he wanted to get something to eat after so we went to a Japanese place. I had beef and noodles. Once I ordered I got a migraine. Haven't had one in years. I don't get the pain, just the 'aura'. Like sparkles that start to cover your vision. So I'm trying to eat while I can hardly see and I have to pick out things that are blockage dangers. I get almost halfway through and my nausea starts. I hadn't taken my nausea pills since the morning and it was three in the afternoon. They boxed up stuff for us and we ended up with an axtra empty container, thank God for small mercies, because we got a couple of blocks away and I started throwing up violently. 45 minute drive home through the city and then on the highway to our small town. I threw up 8 times. By the end it was just bile and I was like a dishrag with exhaustion. Got home and went to bed and just got up from sleeping and had a cup of tea with my ant-nausea meds and I feel totaly normal now. 

I seriously can't win for losing...

Thanks for the compliment Sandy! I took that last night when I was out with my boy. 

Jan

plsletitrain
Posts: 253
Joined: Jul 2017

Jan, I'm so sorry that you received some bad news.  But I don't think you should lose hope.  I don't know what to say to ease your worry but I hope this song, which I also posted on my other thread, will at least give you some motivation to not give up.  The title is Don't Give Up by Gregorian.  Gregorian's vocals aren't clear, but listen intently to Sarah Brightman's vocals and the lyrics, they're very touching. 

Here's the link: https://www.youtube.com/watch?v=oeEoR6PQV8U

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

Jan, so sorry that you are not feeling good.  I am praying that God will ease your fears and discomfort and place his healing arms around you.

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

Thank you both. I woke up at 4 am and couldn't stop thinking about it. The things I need to do before I'm gone to make it easier for my family, the things I want to do- my bucket list- which is now very much shorter than it was because of my health, the dreams I must give up, who I need to reach out to that I haven't seen for a while, what will happen to my horse and dogs, all of that stuff. It's hard to turn your brain off at times like that.

I'm so sad but not really crying much. I knew this was the worst case scenario so I'd already kind of accepted that it could happen despite my attempts at beng positive. And I could switch chemos and still be okay longer than they think. It's possible. I'm hoping it happens. I hate seeing my hisband crying and upset and knowing it's because of me. I didn't tell my daughter. They said at this point they'd only use radiation for palliative comfort if I need it. I told her that they don't want to do more damage for now and would rather I tried the other chemo. I've never lied to her but hse doesn't need the burden.

Damn, this really sucks. I pray that the new chemo will at least hold it at bay for some time. Maybe I can get five years out of this. Last fall I was told ten and I was upset. Now I'd be thrilled to get ten more years. 

beaumontdave's picture
beaumontdave
Posts: 1130
Joined: Aug 2013

I hate that early morning wake-up, where your brain is fully engaged in trying to deal with worst-case-scenarios and things you can't do a thing about at 3-4 in the morning! I'm sorry Jan, that recent tests have put you in such mental/emotional turmoil, it really is the worst part of this disease, in my mind. Sending you peaceful, easy thoughts.............................................Dave

EissetB
Posts: 135
Joined: Apr 2017

I got real upset when I started reading your post...I wish I could give you a helping hand. I will keep on praying for a healing hand from Him. Nothing is impossible when asked His healing power by heart. You are a tough young woman and I know you'll pull yourself through this. 

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

Thank you EissetB! I just got home from my family doctor and he said he's never in 36 years of practice seen anyone with such a positive attitude and as tough as me. He said anyone else would be dragging themselves around and lying in bed. He told my husband "she's tough, tough, tough as nails!" He said he wouldn't be surprised if the chemo worked and I'm back to feeling a lot better. He said that he's never seen anyone have so many hits against them yet be so enrgetic and doing things. He said I'm an inspiration. He also said that the chemo was tested on my tumour and should work, as my onc said. So I'm a little more hopeful than I was. And his kind words were a boost. He's my angel. He's the one that pushed to get the colonoscopy moved up when the other guys thought it was fine and cancer wasn't a concern.

My husband walked in on me on my knees last night praying. I hope that inspires him, too.

Jan

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

Your acts of faithful praying may be just the nudge your husband needs.  Keep up the positive spirit.

plsletitrain
Posts: 253
Joined: Jul 2017

...and remember, its not yet over until its over.  Keep the fight! We can do this. Prove the doubters wrong, cancer won't win this time.

 My prayers for you and to everyone on this board.

phuckcancer
Posts: 63
Joined: Apr 2016

sending you big hugs!!!!

Bellen
Posts: 281
Joined: Aug 2016

Hi Jan - I will pray for you that you will get positive results from trying this chemo again.  There are many who believe in the power of prayer.  I have a small intestinal stricture - a scarred area caused by pelvic radiation yrs ago -  the blockages cause very painful spasms that can last hours.  When I was diagnosed, the nurse gave me a "low residue diet" - a list of foods that are easily digested and do not cause bulking in the intestine - limited fiber, no nuts, seeds, grains, fresh vegetables, lettuce, potato skins, etc.  The list includes foods that are easy to digest and those not easily digested, such as the ones I just mentioned.  Websites on the internet have lists of low residue foods and those that you should avoid. They are not necessarily foods that are particularly good for you, but ones that go through your system easily.  I wonder if this "diet" might help to prevent any blockages.  I have still had blockages, but I do follow this diet pretty strictly, and believe that it has limited blockages or made them less severe.  Are you familiar with this "low residue diet"?  Again, sending you all the best.

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

Thanks Bellen! I'm going to look that up. I was just thinking about that yesterday, if there's a list that's helpful somewhere.

Jan

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

I'm so confused at this point. I saw the onc that's there while mine is away yesterday. She went over my results and says that they're not sure that I have another mass because they can't see one, they're going by the likelihood of it being one due to what's going on. So now I have half saying they think it is and half saying they don't know if it is. I don't know what to think because obviously nobody knows but I think about the neurologist saying my husband and daughter should give consent to pull the plug on me after the PE because according to their data, I should have been very badly damaged mentally. And he was wrong. You can't always go by stats. I remember at one point when I was in the hospital after that when they decided I had an internal bleed because some level- I don't remember what it was- had dropped. So statistically that meant I had a bleed. They did a bunch of tests and were all concerned but they never found anything. I figured they wouldn't, I didn't have a bleed. The human body is an amazing thing. And it doesn't always follow their books.  

Jan 

PamRav's picture
PamRav
Posts: 306
Joined: Jan 2017

dont know who is cuter you or the horse !!

You're in my thoughts and I'm sending positive energy and big hugs your way.  I hope you can tolerate the new chemo this time around, wonder if they could cut the dose a bit or if there is something they can give you concurrently that'll cut those nasty side effects. 

All the posts here are so kind and supportive that I don't know what I can add!   Keep the faith. do your best to keep that positive attitude going.  All the best to you  

Pam

Canadian Sandy's picture
Canadian Sandy
Posts: 699
Joined: Jul 2016

I know how you feel Jan. In my short experience with cancer I have found that doctors really don't know a whole lot. Hopefully there isn't a mass. You are always in my prayers.

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

Thank you so much Suandy!! You are in mine as well!

Hugs!

Jan

darcher's picture
darcher
Posts: 298
Joined: Jun 2017

  Ain't that the truth.  The more we get into this the more we find out how little the medical profession really knows.  Reading up on chemotherapy and how it operates I was surprised to learn that it doesn't specifically target cancer. It kills everything in its path.  Radiation is no different with the exception of proton therapy.  As we all know, it's used because of the ratio of good cells to bad.  That's a hellava way to cure something, kill everything along the way.   

  On top of that some chemo drugs can induce a 2nd cancer due to the methods used to interrupt cellular mitosis.  We don't have to worry about that but image that as a side affect.  I have to wonder why that specific activity is targeted instead of looking for other possible avenues of undermining cancer cells.  Why not stop it from feeding or cut off the blood supply? What do they "eat".  Look for specific enzymes, vitamines, or what ever that it needs that other cells can do without.  It's a different cell so... WTH. Find what's unique and go after that.      

  I'm praying for everyone to make it through this nitemare.   

 

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

I was told that most of the colon cancer chemos do dut off the bllod suplly to the tumour. That's how I ended up with a blood clot and why they can cause blood clots. I'm not sure of the tie in, I just know that I was told that any chemo that deal with it on a vascular level can cause blood clots.

Fun with chemo! My paraphrase of Big Bang Theory's Sheldon's Fun With Flags show.

Jan

EissetB
Posts: 135
Joined: Apr 2017

Jan, I drink Pro Performance Weight Gainer from GNC store when I can't eat the things I used to eat. This drink has 50grams protein which our body needs for energy. I mix it with banana, peanut butter and milk in a blender. I chose the chocolate flavor. Taste real good!! My oncologist said it's a good supplemental for me. They have Vanilla and also Strawberry flavors as well. Hope you'll find this helpful. God bless us all

Eisset

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

Thanks for sharing that! I'm not sure I've heard of it. The last thing I want is to gain weight, I have to say. Despite hardly eating anything for weeks I've only lost 6 pounds. Figures...

Jan

Inishbofin
Posts: 11
Joined: Jul 2017

hi-  I've been lurking on these boards for  the past month or so, as I wrap my head around a diagnosis of stage 4 colon cancer w mets to liver.  I have to say,when I was  lying in the hospital for 10+ days, I found these boards To be scary, informational, but most importantly, supportive and  hopeful.  Jan, I would look forward to reading your posts when I couldn't sleep at night.  Your honesty, kindness and attitude throughout your ups and downs has been remarkable.  Hang tough and don't give in. This newbie from Boston is rooting for you, and everyone else here! 

 

ps-I like your new picture too!!

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

You're so sweet! Thank you! I try to be positive but realistic. I want people to know you can live with cancer and there is always hope. It's not an easy road or fun but it's doable. I start back on the Vectibix this coming Friday. I'm kind of looking forward to it just because right now I'm off the Xeloda so I'm doing nothing to fight this. But I'm terrified of having the reaction I had previously. And I just wanted a good summer so this kind of breaks my heart a little bit. Every year I think 'this is it' and I hope I'm going to have a good one and then I don't. But I'm alive and I have a good life and peope who love me so that's what really matters.

I'm so sorry to hear of your diagnosis. Every time someone new comes on I'm glad they've found this forum because its so helpful and positive but I also die a little inside knowing another person has had to be told they have cancer. As you read, stage four is not necessarily a death sentence, there are options. I pray that you'll get on the right track to battling the beast as soon as possible and see results soon! Good luck and keep us all informed and ask any questions you'd like. The lack of knowledge is one of the worst things about this. And all the garbage information that's out on the internet. 

Thanks for the lovely comment about my new pic. I took that the other night and it turned out okay. I hate having my picture taken. That's my boy, Prince. He's having health issues, too. If you know about horses, he has Cushing's disease. I love him so much! He came to the hospital when I was very ill and in the ICU. To the door, they wouldn't let him come right in. But it was amazing!

Take care,

Jan

 

Lily Flower's picture
Lily Flower
Posts: 254
Joined: Jul 2017

Jan, I truly believe the positive attitude is the complementary medicine for this awful disease. And some laughter too. when they first told me finding the malignant tumor in my colon and they said it doesn't look good. I was so shocked and I was already planning my own funeral in my head. My older daughter was sitting next to me. She said mommy we're going to fight this and get rid of this nonsense inside of you. Right away I felt my strength build up and my positive attitude changed my whole outlook. When you're feeling down, think of the people you love and your Prince. :) You can truly draw strength from your loved ones. I applaud you for fighting so strong with courage. Even though I just joined this site not long ago but I find this as my extended family. We're all here for you! {{{HUGS}}}

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

    For the first 48 years of my life everything I thought was serious turned out to be nothing. For the last twenty years everything I think is nothing has had a shot at trying to kill me . I think part of my DNA may be cockroach. One of my friends always reckoned that if the bomb ever went off I'd be elbowing the roaches out of the way to get out of the rubble. That is not exactly true and sometimes I get a little scared but I have lived on my own for the past 11 years so if I get a bit scared nobody knows. It is hard to stay strong all the time so sometimes you have to cut yourself a little slack. When push comes to shove cancer has thrown everything it can at us and still we survive. Push back a little harder ,sometimes we have to tell doctors what to do not the other way around.  Jan it has been a tough road but I have no doubt you can get thru this as well, Hugs from Ron.

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

Thank you Lily and Ron. Your support means more than you can know. Today I am havng a good day for the first time in almost a month. I'm enjoying every minute of it. Weak but very little nasuea or pain. It's awesome! Kind of sad to know that my good day would have a normal person going "es, I feel like crap" but I'll take it.

Ron, you are the toughest of the tough. For you to tell me that I can get through it and to tell me I've had a tough time means so much. In comparison to you I've had a walk in the park. You are so inspiring!

We went to a wildlife park an hour and a half away yesterday. We rented a golf cart so I could get through it. I was exhausted last night and should be an empty sack of yuck today but I feel pretty okay. Nice! I'll take it!!

Jan 

Lily Flower's picture
Lily Flower
Posts: 254
Joined: Jul 2017

So glad to hear you're having a good day! 

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