Why I stopped posting

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scottyg
Posts: 135
Joined: Tue Apr 17, 2012 6:40 pm

Why I stopped posting

Postby scottyg » Tue Jun 09, 2015 11:04 am

When I was in active treatment it seemed that all of my senses were heightened. Everything seemed just that much more than it had been in the past.
When my treatment ended it felt like I had been cut loose without the coping skills to deal with what I had been thru.
Being stage 4 I fully expected that I was going to die from cancer. It has not been the easy for me to go from getting my affairs in order to... living.
I spent every penny I had just getting diagnosed. Pet scan cost me 8 grand. I sold/ got rid of a lifetime of stuff At 49 I started over. I can no longer do what I used to do for a living.
I have gone back to school trying to gain some skills so I can maybe be employed again. Even still I am looking at bankruptcy if I become employed again.
Please don't get me wrong I am very happy to be alive. Its just that... I have lost that feeling of being so damn aware that I am alive to just semi-normal life.
I miss that feeling of being so alive. I am not the same person I was physically or mentally. A very good friend of mine, an ex US Navy SEAL, told me last night that he could relate.
He said that while he never wants to see combat again he missed that feeling of being so very alive. Life goes on.
There was a person a couple of years ago that spoke of this. He was flamed badly by some people that I respect. He was accused of being ungrateful, of being insulting to
those still in active treatment. I realized then that what I was / am going thru was not part of the accepted dialog around here.
Even though it is part of MY cancer experience. I still log on occasionally to check up on the people here I respect.
Not sure why though
Flame away
Scott
DX Nov 11
Stage 4
6 Folfox + Avastin Dec 11 - Feb 12
Surgery March 15 Took part of Colon and Part of Liver
Folfox + Avastin May 12 - July 12
NED!!! Yippee!!!!

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: Why I stopped posting

Postby jalusa » Tue Jun 09, 2015 11:10 am

No flame here. I search long and hard for Stage IV survivors. Each one gives me hope. Post away.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

kathybrj
Posts: 51
Joined: Tue May 06, 2014 1:33 pm
Location: Graham NC

Re: Why I stopped posting

Postby kathybrj » Tue Jun 09, 2015 11:25 am

I'm not understanding why someone got flamed for this point of view but that's just the nature of dealing with other human beings. I can definitely understand a "heightened sense of awareness" while going through treatment- you have a goal you are working very hard toward. That energy-momentum- is what keeps lots of people going.

At home now we're in this "lull" period- DH has been done with treatment since January. His CT was in march and now he isn't seeing a doctor again until the end of the month. The hectic-ness and high energy have dissipated. For me, I feel like we're in a holding pattern kind of period- he was NED in March and I'm just waiting for the next CT. For him- he's trying to get back to the activity level he was at before. Nothing has pissed him off more than the neuropathy. His goal now is, obviously, working toward being NED for a long time, but it's not an active type of "work" like treatment was- when everything he did we were very aware of.

Anyway- I get what you're saying. Please continue to post! It's great to see a stage IV survivor post!
Blaise (DH) dx 3/31/14 (age 49)
Stage IIIb Rectal - 4 lymphs involved
Xeloda and Rad 5/5/2014
Surgery 7/29/14 Illeostomy Placed
FolFox 9/11/2014 x 9 treatments
Reversal 1/27/15
NED 9/29/2015
Kathy-Caregiver

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Why I stopped posting

Postby radnyc » Tue Jun 09, 2015 11:44 am

I most heartedly agree with you Scot. You have a right to feel how you feel, cancer changes us all. I also had my life turned upside down, financially, emotionally and physically. But, I'm doing good, it's not too hard, I've gained a sense of survival that not many people will ever understand, kinda of what your military friend went through. By the way, I had no choice but to declare bankruptcy 2 years ago, and now I know it's one of the best decisions I could have made. It freed me, we already have too much to worry about, without having credit card companies calling you all the time. And, by the way my credit has quickly improved, to the point that I'm getting credit card offers in the mail again.

Take Care

Al
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Why I stopped posting

Postby cathy123 » Tue Jun 09, 2015 11:46 am

I worry sometimes before I post because I am (relative to many on here) lucky that mine was caught at stage 1 as far as we can tell. So my struggles are less than many others and I have a pretty decent shot at moving on with my life after this year. But it still is a really crappy thing to deal with and I am still scared that it will come back. 90% sounds good, but a 1 in 10 chance of dying before I turn 50 doesn't sound quite as great. So yes many would love to trade places with you and be stage 4 Ned, but you are still justified to feel how you do and I hope this can be a place of support for you. I haven't gotten there yet but have read that post treatment can be a tough place because you are expected to just move on, but there are many emotional and financial and physical issues that don't go away.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Why I stopped posting

Postby aja1121 » Tue Jun 09, 2015 11:50 am

Yes, thank you for posting. Any Stage IV survival stories are wonderful to hear. That said, although I am a caregiver and not a patient, I can appreciate what you're saying and would never flame you for it. There is something to be said about the momentum it takes to get through this experience. My husband's treatment is almost complete, and I definitely have some trepidation about the next phase of our life. I worry about what will happen when we arrive at the waiting stage. I do know that many things will never be the same again. I'm not sure if he's realized that yet. I also struggle with depression and am already getting down on myself about it... feeling like I should be facing each day with joy and happiness because he survived, but it just doesn't seem to be in my chemical makeup.

(Kathy, my husband's neuropathy has worsened considerably in the past few weeks, and it is making him very angry as well.)
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

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Sharon Brent
Posts: 288
Joined: Mon Oct 06, 2014 5:19 am
Location: London England

Re: Why I stopped posting

Postby Sharon Brent » Tue Jun 09, 2015 12:34 pm

Hi,
I'm really glad you decided to post again, and maybe things have changed since you last posted but I have found this forum a great help since my Husband passed away.
There is no right or wrong way to get through what Cancer brings, every diagnosis and journey is different, so whatever you feel and want to say is fine as its your own personal journey.
What you have gone through with Cancer, treatments and now carrying on with a new type of living is by no means easy, there are bills to pay and money needs to be made so a post on here can help to settle the mind, gain some support or just have a laugh with some friends.
I hope to see you posting more :D
DH, 47yo, Dx Stg IV, mCRC, lvr, lng 1/14, Tx Capeciabine 9 rnds
Children 5 & 1
DH 48th Birthday 6 November in Hospital
Home palliative care on 12 November 2014
Called back to Jesus 4pm 15 November 2014
Life Celebration in Nigeria 8 January 2015

andy21
Posts: 376
Joined: Tue Jun 26, 2012 4:07 pm
Location: N California

Re: Why I stopped posting

Postby andy21 » Tue Jun 09, 2015 12:45 pm

Scottyg,

You are part of Seal Team IV that has survived the most difficult medical challenge thrown at you.
That is very inspirational. It keeps hope alive for so many people.
Hope you write a book as nowadays it's easy to publish free on Amazon as a downloadable ebook.
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Why I stopped posting

Postby Bev G » Tue Jun 09, 2015 12:59 pm

Hi Scottyg,

It's nice to see you back. If you get flamed for your position I will be astonished, and would immediately block anyone who responded negatively to your thoughts. I totally understand everything you said, and feel the same way. I'm so glad you're NED---it's just that we find out that NED doesn't mean healthy and A-OK.

Please stick around.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Why I stopped posting

Postby weisssoccermom » Tue Jun 09, 2015 2:05 pm

I agree with Bev....if anyone says anything because of your position....well then they need to have a reality check. Scott...we ALL face some issues like that where we wonder and even get a little angry that cancer has taken so much from us. I have a very good quality of life being a stage II rectal cancer survivor BUT...I still have times when I almost resent the fact that I am just not the same person and do have some, although few, restrictions. Sometimes I envy those people around me who seem to be able to not have to deal with 'bathroom' issues and, in comparison to most on this board, mine are mild at best. Still I am extremely happy to be alive (particularly since I choose a different pathway than the 'standard of care') but still, there are times when I almost resent that my life is slightly different.

When I was 8 or 9 years old, I badly shattered my left wrist in a swim meet. I hadn't yet mastered the 'flip turn' and didn't see the wall and slammed my wrist into it. Back in the 'olden days' they didn't have the technology that they do today when the 'fixed' it so that even though it 'healed', I didn't regain the same function that I had before. I can't, for example, turn a door knob with my left hand without actually turning my shoulder and elbow. There are other things I also can't do and over time, I have had shoulder and elbow surgery because of that break. Finally, about 20 years ago, I had a partial wrist replacement to ease the pain but still, I just can't do what 'normal' people can. Sometimes I get angry but, over time, I've learned to just adapt....and I don't even think about it anymore. I'm not saying that this will happen with you.....but give it time. You know the old saying that 'time heals all wounds'....and while we normally think of that saying to be applicable to times of 'grief', you have to remember that you are also going through a grief period with your diagnosis and your change of lifestyle. You're saying goodbye to the old 'normal' self which was all you knew from day one....and now you're faced with a new 'normal' that isn't just confined to how you eat or go to the bathroom. Cancer changes everything in our life....the physical, monetary, emotional and relationship, etc. aspects of our life are all changed.

Everyone here should understand and if they don't, then I feel for them, because likely they will come face to face with those same feelings someday. Maybe it won't bother them as much....maybe it will....but I think all of us face some of those feelings at sometime or another. Just like it took me a long time to figure out how to cope with a wrist/hand that just didn't work right (it sounds trite but seriously, when you have to learn to depend on just one hand....it can be really devastating, frustrating and downright pissy) and I took it in baby steps. I had to do what I had to do. Thankfully, because I was young, I don't think I recognized it as much and my parents didn't allow me to get away with anything.

Scott...you have every right to feel frustrated, down, whatever you want to call it. I am hoping that for you that one day even a small amount of that 'zest' for life will appear back in YOUR life and you will start to emotionally and physically feel a little better about all of it. Until then and even after, please continue to come back and post now and again and let us know how you are doing.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: Why I stopped posting

Postby jillbugs4110 » Tue Jun 09, 2015 2:48 pm

I completely understand. I would love to go back to.the fearless hopeful me.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: Why I stopped posting

Postby jillbugs4110 » Tue Jun 09, 2015 2:54 pm

Ya know what else it is like monopoly full of straight to jail cards no one wants to play. It is lime going to.prison and if you make it.through it's like getting out.of.prison if you beat stage 4 then you are broken because.you are bankrupt financially and emotionally....You are honest and realistic.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

WifeOfMike
Posts: 1495
Joined: Thu Dec 20, 2012 9:53 pm
Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: Why I stopped posting

Postby WifeOfMike » Tue Jun 09, 2015 3:13 pm

Dear Scotty,

Shame on the idiots that flamed anyone HERE for expressing their true feelings. I think "we" have all learned the right to speak openly & honestly about anything that has to do with the "Cancer Experience"-which includes mentally, emotionally & physically. By "anything", that excludes the taboos of religion, race, gender, politics :oops: , and direct "personal" attacks. IMO- your post is very much in line with the dialogue that belongs HERE. Your post may help you & anyone else facing this same issue. I admit that now that my hubby is gone, I too sometimes look at my agenda, which no longer includes trying to save his life, and it seems unimportant in the big scheme of things. It is now focused on my mom, 3 sons and how we are trying to heal & move forward. Important, TRUE- as important or all consuming- NO. These deadlines are pale in comparison.

I Guess I have seen it though :shock: - when someone has on "off day" & it is "easier" to direct a flame thrower at someone else, perhaps to make their dilemma not quite so bad. Sad days, Very SAD DAYS indeed.

PLEASE do not duck for cover, or feel like you have to stay away. I m positive there are many HERE in similar shoes, who may be able to lend a comforting ear & shoulder for you to lean on. Cancer can screw us up big time.... like PTSD, it takes it's toll mentally, emotionally & even physically. If you cannot find what you need here- I encourage you to not leave this bottled in. Find someone- friend, family, professional or US to help you through & find the sparkle in your days. Gosh only knows, I have been through a tsunami of feelings throughout my hubby's journey & sometimes it feels even more so in the aftermath with our 3 sons. THIS PLACE has been my safe haven for holding onto my sanity, more than once.

Maybe start a sport that gives you a little "edgy" feeling, like cliff climbing.... if even in an indoor environment with a pad at the floor, ropes & harnesses to start, LOL
I'm sure your SEAL buddy may be a willing partner :lol:

CONGRATS on making it to the other side of a Cancer Diagnose
That news will be like sweet music to many still struggling
A friend,
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Why I stopped posting

Postby Ron50 » Tue Jun 09, 2015 4:12 pm

Hi Scotty,
My motto has always been 'surviving survival ain't easy.' I have no reason to change that opinion despite being out to nearly 17 years post an aggressive stage 3 c tumour into 6 nodes. My surgeon and onc both suggested that I would not survive and to get my affairs in order. I didn't chose to , instead I just tried to continue on with life. Not easy! My wife was sick of being sick and asked me to leave. I did. We went thru a property settlement but a whole bunch of specialists have burned that up. One of the chemo drugs I was on was banned because of sometimes fatal side effects a couple of years after I was on it. It may or may not be to blame for my problems but I suffer some serious auto immune problems some of which are life threatening and require powerful immuno suppressants. I am in Australia and I have a good friend in New Zealand ( though we have never met) . Virginnia was on the same chemo regime as me. She was stage 4 and had a colon tumour removed and a wedge section to remove mets in her liver. Last January I ended year sixteen of survival and last December she finished year twenty. She suffers similar auto immune problems to me. We both find life a struggle and we have never lost the feeling of being in battle. We both do all of the right things to get by. We never miss our scopes and check ups even tho we both ask the question why do we bother. We both ask the same question as to why no one in the cancer industry has bothered to contact either of us to try to find why we survived so long. Neither of us can understand why we survive , we figured we both just fell thru the cracks.
I hope you can find a way to make your life a little better at least you are trying , you have my best wishes and I am sure Virginnia would feel the same, hugs Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Why I stopped posting

Postby Val*pal » Tue Jun 09, 2015 4:16 pm

I'm so sorry you got flamed. Shame on that person who did it.

I'm also sorry you have lost so much since your cancer diagnosis. Having one's finances in shambles is extremely and unrelentingly stressful, so I hope you recover some stability.

Thanks for sharing that you are NED and Stage IV. So many Stage IV people need to hear this since it gives them hope. My husband was diagnosed around the time you were, and sadly he did not make it, but it's good to know that some, for whatever reason, do well.

My life has never been the same since the day my husband was diagnosed. I won't pretend my experience is anything like that of a cancer patient, because it isn't, but that damnable disease sends out wave upon wave of change that affects so many. I know that my husband was never quite the same after his diagnosis - he was unable to totally recover his childlike love of life, and I hate cancer for doing that to him. It's only now, almost year since his passing, that I can remember him like he was before he got the bad news.

Hang in there, and I hope you continue to post.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest


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