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I am not a Survivor

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

Ill try to make this brief. Rattling the cage, only annoys people. Theres no way out and venting doesn't help. I am not a survivor. I am not a fighter. I never will be. I have spent the last two months of my life trying to find the internal resources within me to have the courage and strength to fight cancer. Its not there. Right now im holding on to the support of another person with cancer who is a actual survivor and fighter. More than likely I will die before the end of this year. I will not commit to a vigorous chemotherapy regiment. I can deal with and manage pain but nausea is my achillies heel. Only low dose chemo if tolerable. And surgery if resectable. My mental state will continue to decline. I dont know how to live anymore. This elephant is going to be on my back until the day I die. I live by the very little sand left in my hourglass. And I fear dying and death itself. Its just endless greiving from now til as far as the eye can see. I cant function, focus or do anything I enjoy anymore. I am permenantly emotionally and mentally traumatized and paralyzed. This is it. The only fight I have left is internally. Acceptance. Coping. And somehow hold on to whats left of my dignity. Dont go insane. I know there is not anything anyone can do or say. The prognosis is what it is and my symptons are getting worse. Im 40 and I can barely move around. I admire that will and burning desire you all have. Its not something you can come on a forum and learn or read a book about. Its something you have to have been born with. Something you have to already have there. Ive read probably a hundred of inspirational stories, had mentors call and speak to me for hours, and have a wonderful friend I met here that is giving her time and effort to never allow me to feel hopeless or alone. It is a big, bitter, jagged pill to swallow after all I have gone through in life. 

Since this is the only place ive been posting, and is still relevant to my condition, I will continue to post here even I have pan cancer. Cos there is not many posts in the Pan C forum, and I know why. 

I might try to use this forum as a journal. I have to have some sort of reference to my slow descent into mental deterioration and incoherence. And have some place to pour out my emotions, and just scream out silently. Not for help. Im just a fly in a spiderweb. Screaming at the black demon hovering over me that takes joy in watching me flail around hopelessly and cry. For it to just go ahead, get on with it and get it over with now..... please. 

 

 

Spunky2u
Posts: 1
Joined: Mar 2019

My heart is breaking for you and I know it is not your intent.  I came to this site because my dear friend has just found out she has colon cancer.  The depths of your pain is palpable in your writing.  I am here listening if you need someone.  My name is Mary and I live in Dallas.  I dedicate my day to you with humbleness and kind thoughts.

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

Rod, my heart is breaking for you. You're very eloquent in your descriptions of how you feel. The world will be a poorer place without you here.

Mary, that was very nicely said and welcome.

Hugs,

Jan

 

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

I'm so sorry that you are feeling such despair.  You are right, one cannot come to any site, read any book or just flip a switch to make yourself feel better or happier.  Cancer is a lonely road to travel sometimes, especially with family and friends around it sometimes feels like your mind is consummed with fear and doubt.  Just know that we are here for you.  Just know that my prayers are with you.

Kim

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

As a longtime cage rattler, rattle away. I’m sorry to hear you are going through a hard time. Getting diagnosed can very easily be a devastating blow to all of us. It was for me. I saw from your profile that you are newly dx’x. I’d like to ask you a few questions. 

  • Are you being treated at a reputable cancer center or your local hospital?
  • Have you gotten the very important second opinion from an oncologist who’s an expert in their field?
  • You seem to be having a very hard time emotionally. Have you spoken with a professionally trained therapist? If not, I urge you to go ASAP.

I believe there’s no right or wrong way to deal with one’s cancer. It’s unique to each of us. I haven’t read any other posts you’ve written but from what I’ve read here, you seem to be going down without a fight or exploring your options.

Pardon my bluntness but as I said earlier, I’m a longtime cage rattler who was given less than a year to live 15 years ago. I didn’t get here by accepting the first thing I was told.

phil

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

So glad to see your post.  Just thinking about you two days ago and wondering if you were still lurking.  You look great and pleased to see you.  Thanks for all your support throughout the years. 

Kim

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I'm still here! You look great too. Love your new profile photo. I recently celebrated my 15th Cancerversary ☺️. While I'm still in treatment things are quite good. I've been pretty busy doing real estate photography. I started my own business 2 years ago. I'm just busy enough since I do have days when I'm in a 'daze'.

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

   You put in an appearance phil I was starting to get increasingly worried about you. Glad to see you can still hit the keys mate, Ron.

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I will certainly let everyone know when I'm dead. Hopefully, before I'm dead ;-)
Glad to see you're still here as well!

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

I know why too, the same reason there were few posts in Brain Cancer, where I looked for my wife,  you've got to carry some hope, even if very small. Outside of that hope, my philosophizing would just be rattling your cage, so I'll just keep wishing you some form of mental, emotional peace, however you may find it................................................Dave

feckcancer
Posts: 94
Joined: Jun 2018

 

please try not to be scared. whatever happens you will meet some of the most kindest and bravest people that you have have ever met. Some doctors are looking into a link between depression and cancer & who knows, as you get better your depression/mental health issues may as well too.

if there is a link does the cancer cause depression or does the depression cause cancer?

there were a few post re this before this site crashed and it seems alot on here did have bad depression as i did myself. 3 years on no cancer no depression but i am only starting to feel as i am healing now but thats okay, it is what it is. 

Can i please make a suggestion? you say you obsess. make yourself obsess on a cure and follow it through, only focusing on that. research what is helpful & disregard the rest. You know you have to do the chemo etc but make it work more powerfully for your good by anything that is positive towards cure be that prayer, crystals, tumeric, medical MJ, not eating red meat, not smoking, meditation whatever. if your doctors okay it do it and only worry about the other stuff if it happens. if you are not dead at this very moment in time don't waste time you could be using to learn about helping to heal yourself 

i hope this is helpful for you. so easy to go down a black rabbit hole when you hear the word cancer. i was so scared but it was ok but had the attitude whatever i had done to contribute to me gettinng cancer by my unhealthy habits i had to stop. fix what you can & trust your doctors. you have to be brave. You have to be tough.

BTW for me i went into hospital for chemo because i was attached to a drip and had chemo 24/7 for a week twice. two serperate occasions of a whole week of my body being flooded with chemo for 24/7. the only break was when they changed the drip. and guess what. no sickness, no nausea, no baldness. nothing. was out shopping the day after i left hospital.

Take care

 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

"was out shopping the day after i left hospital."

I love this last sentence of your post. LOL! I am just at the beginning of my cancer journey, starting fifth week of chemoradiation. Having some regular side effects,not too bad,but no energy to do anything else than to take the local transit to the hospital for radiation and back home. Chemo Xenoda twice a day at home. 

I so miss going to stores to check on spring fashion,to see the bright colors after the gray winter.I just can't do it now. In 8 days I'll be sort of free....waiting for my CT scan,MRI and surgery some time in June...probably. I hope to get my energy back to go shopping,or at least looking and enjoying the spring atmosphere every where.

Your post gave me a bit of hope I'll be able to do it.

Hope you are doing well and wish you all the best!

Suzy

feckcancer
Posts: 94
Joined: Jun 2018

Thank you. i am doing so well thank you (3 years NED) and i hope you continue to do well too. fatigue is a huge issue. 3 years later i still get it occasionally and looking back i now realise how fatigued i was but i put it down to other things. i had a bit of an attitude of okay, done treatment why aren't i feeling better? now realise i had to heal. is not the same as antibiotics take x1 pill x3 times a day for 10 days . get better.  in hindsight my poor doctors. still remembering the look on his face after i demanded why wasn't i feeling better at my 6 week check up. v early days he murmered. about another 6 months before you even start healing. WHAT? lol

anyway don't forget online shopping Laughing. take care. you can do it. 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Don't let the fear of having nausea stop you from fighting. Your oncologist will prescribe the anti-nausea medication for you while you're on chemo. Although I didn't have any while I was on but I heard cannabis edibles also help with nausea and gives you a good appetite because as you know having nutritional meals help with  good body weight, maintain strength, keep your body tissue healthy which decrease any side effects from chemo. Putting on some extra body weight also benefit yourself while you're on the treatment. Also having a positive attitude plays a major role in handling the cancer treatments. I'm not saying that it's going to cure the cancer but it definitely helps you cope with it. I read a lot of articles when I first got diagnosed and I remember reading one that said that positive thinking helps relieves stress and makes you feel less anxious. With that you can focus on getting through your treatments. Just remember that if all of us stop fighting, none of us are here posting. I wish you the best! 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

I understand that you feel broken and hopeless, I get it. I feel like I've had a bad attitude since I was diagnosed. It just felt like a death sentence. I really pushed back against getting chemo or radiation, my sister pushed me a lot. Now she's gone (I think she decided I was too much for her) She was not much of a sister or even a friend anyhow!

None the less, I have continued to survive and took what treatments I could handle. I'm still here after 2 plus years, I don't look sick but inside I definitely feel that something is terribly wrong.

The one optimistic thing that I do cling to is "Where there is life, there is hope". So while we are still on this side of the ground, I think we should do what we can to survive. No one can predict what the future holds, not Doctors, not anyone.

I do see a therapist and I think it helps, at least you can get out all the terrible thoughts you are having and surprisingly to me sometimes it does end up making me feel better.

These are just my experiences and opinions, take what you will and leave the rest. I wish for you to find some peace, that to me is a very important thing and could make everything much better...I do wish that for you so much.

Much love,

Karen

Twinzma
Posts: 212
Joined: Jan 2018

Look Rod, Life has dealt you some pretty low blows. But to say you are not a fighter, can't be further from the truth! You really do not give yourself enough credit at all. You came here, have poured your heart out that took a lot of strength. You have tired to get out of your funk, well that takes strength to attempt you know. You have read positive outcomes looking to find hope in your darkest hour, well that too took a lot of strength. So please don't say that you are not a fighter, because honey you ARE a fighter! You are so strong, I just wish you could see it and stop beating yourself up. 

You have been given some good advice here by the others, so I will leave it at that. I just wanted to add my two cents....That you are very strong! 

 

linda7408
Posts: 21
Joined: Mar 2018

I have to tell you that nausea was my biggest fear too. I told my doctor and he said where are you hearing this? I told him from eatching movies. Everyone is always puking their guts out. He told me I get nausea pills before and during the treatment and then two bottles of two different kinds. The first time with chemo I took them just in case. And they told me at the slightest little wave of a yucky tummy, TAKE THEM. Never did I get nauseus. I swear!

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

Good point. It's important to take them to prevent it, not to make it go away. Pain pills are the same. When I worked in dental offices and we had to give an Rx for pain meds I always reminded the patient it's easier to prevent pain than to make it go away once you have it.

Jan

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

i think theyre cutting out everything except my heart. 

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

Glad they are doing surgery as that means they are cutting out the diseased tissue.  Please keep us informed and know that you are always being thought of. 

Kim

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

I talk to my oncologist again wednesday. He cancelled the endscopy to biopsy the pancreas. It seems he will be freelancing through the surgery because as of now they only know from scans I have cancerous lesions on my pancreas but as far as the mass on my colon and the lymp nodes, the pathology report was inconclusive. This is basically going to be a pancreatectomy and colorectomy simultaneously. He went through so many organs he have to remove or cut out it made my head spin. As of now their "theory" is it could be two primaries. Im numb, and depressed and I havent been able to even talk about this much or post on the boards. I told Jan I just dont have anything encouraging and positive to say, its just the rantings of a man who ran out of luck, and time. Ill keep you updated but other than that I just dont know what to say anymore. 

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

You don't have to say anything right now except I'd wait until after the surgery and see what the surgeon says about it.  It might be that they can get it all and do mop up treatment after that.  It sounds like the surgeon has a plan and that's good.  I'm glad that they have done tests to determine what approach to make.  I'm always thinking and praying for you. 

Kim

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I posted this earlier but did not see a reply from you so here goes again.

  • Are you being treated at a reputable cancer center or your local hospital?
  • Have you gotten the very important second opinion from an oncologist who’s an expert in their field?
  • You seem to be having a very hard time emotionally. Have you spoken with a professionally trained therapist? If not, I urge you to go ASAP.

I understand that everyone handles things differently. It hits most of us like a ton of bricks. I was given less than a year to live 15 years ago. That was totally unacceptable for me. We all have to make the choice of what’s acceptable. I hope you find your inner strength. 

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

The clinic I attend is the best available in the city. The hospital in conjunction is one of the best, though there are better. I have two oncologists I see now. One is a oncologist surgeon, the other is a medical oncologist. They so far have been pretty much in agreement with their interpretations of the pathology report and the need for surgery and adjuvant chemotherapy. The only deviation is that one suspects I may have lymphoma. 

I have been seeing a therapist for 18 years. Since my diagnoses, therapy and my coping abilities have been ineffective and im currently being transitioned to a more experienced therapist who specializes in post traumatic stress and emotional support. I also attend a support group. Due to being uninsured this is the only mental health clinic I was accepted at and best available in my area. It does not have the most qualified people but they are trained and compassionate. 

I hope i find my inner strength as well. 

pamness
Posts: 513
Joined: Nov 2007

nausea, a really awful side effect of chemo, if this is your weak spot.  It was mine.  I had a Nissan, prior to my cancer diagnosis, which basically means, I can not throw up.  Imagine nausea, nasty enough, but not being able to do anything about it without getting to the er.   I survived, six rounds of folfox, 25 days of radiation, with 5 fu.  Anti nausea meds are probably better now, but for me 12yeats ago I had to use zolfran, compazine, ativan, amend (not sure of the spelling) and a strong steroid.  i am currently 12 years Ned from colon cancer and 5 years from a subsequent breast cancer diagnosis.  You can do this!

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Manapart.  You are you.  You can only do what you can do in life.  I have PTSD myself and I put one foot in front of the other to the other side.  Look to other cancer patients, they can be the best support.  I support you in anything you can handle.  Cancer is EXHAUSTING.  Do whatever you can handle.  You are stronger than you think in that many of us have these same feelings.  I did chemo, no nausea, Ativan is the best pill in the world because it not only relieves your anxiety, it gets rid of the nausea.  I am exactly the same way about nausea, just the idea of having a stomach virus in life puts me in a panic so when I found out there was anti nausea medication that would also help my anxiety, I jumped right on board.  Never even had an ounce of nausea, took those pills like clockwork daily.  Helped me get through.  Believe me, you're not ranting.  So many of us have these same feelings, cancer is very scary.  Once you hopefully allow yourself treatment and face the surgeries, which are extremely scary, there is a sense of relief that happens.  I hope you are able to get there and I support you.

feckcancer
Posts: 94
Joined: Jun 2018

even though i didn't have any sickness with chemo  , the first round of chemo i was given anti nausea tablets as a preventative measure & after 3 days i had extreme restlesness. one of the very rare side effects of one of the anti nausea tablets. this is so rare they didn't even bother to mention it when they were talking about side effects (or i wasn't listening more like it) so i had no idea what was going on and i was a bit embarrassed because i felt like i was whinging because i felt so well apart from not being able to keep still. anyway treatnment was oral clomazapam (v enjoyable BTW) that night which stopped it within 1/2 hour  followed by a zopiclone a few hours later to make me sleep. they stopped that medication but i still had others. 2nd time i didn't have any anti nausea tablets but didn't need them anyway. just thought i would add this in here in case it happens to anyone else so if it does they can deal with it straight away

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