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Things to look forward to...

John23
Posts: 1832
Joined: Jan 2007

Things to look forward to...

I don't know if I oughta' be posting here or not, since I'm only
four years post-DX and surgery, not five.

I guess I'm a "survivor" (so far, anyway), since I haven't been
abused by cancer for four years (since surgery).

They said I would be gone in 3 to 5 years even with chemo,
and without, probably -0-, but I guess I'm not a survivor of
the original prognosis.... yet?

I've never taken chemo or radiation, so I can't say I've been abused
by -any- treatment - so I'm not a survivor of cancer treatments.

But I do have problems as a result of having cancer, and they
are continuing problems.

I think that all cancer victims feel that if they manage to survive cancer,
that life will resume as it had before. Well, I have been brought to
my senses! I have an ileostomy, and all it's associated problems
of diet, nutrition, and a continual state of dehydration.

But I'm also suffering from adhesions and hernias that are causing
intestinal blockages regardless of what I eat. The pain is incredible
at times, as are the middle of the night dry-heaves and gas build-up.

I've learned that any abdominal surgery will cause adhesions and
hernias and that we can be problem free for years, and be suddenly
hit with obstructions due to the restricted movement of our intestines
(from an adhesion or hernia that's been there right along)!

Isn't that simply wonderful! The blockage can be moderate, and
partial, only giving you tremendous amount of gas and consequent
pain. Perhaps a bout of total liquid output, with cramps that double
you up like 5 minute labor pain....

Each of my blockages have lasted not less than three days.

Or, it can be more severe, as in a gangrenous situation, where
the intestine is strangulated and is dying; decaying and poisoning
us from the inside.

They say that there are only hours between an emergency situation,
and a blockage that clears itself. But there's not too much we can
do about it, since surgery to clear an adhesion or hernia only causes
more adhesions and hernias. Oh yes.... and they tell me that further
surgery can cause damage to other organs, leaving a guy impotent,
as in ED, pancreatic problems, kidney problems, and problems
of incontinence (urinary or otherwise), among other neat maladies.

Is this what a "survivor" can look forward to? Even if we miss taking
a bullet in the name of neurological problems, or radiation poisoning
due to conventional treatments, we end up suffering endlessly anyway?

I didn't suffer from intestinal blockages, regardless of what I ate,
or how I chewed, for over three and a half years.... now...? I have
had four..oops... five blockages in three months.

I just got my latest scans and CBC, and I'm all clear! But I'm told
that some serious surgery may be needed, if I expect to continue life;
a really bad blockage can be life-threatening, and can be sudden!

But the surgery involved can be as equally life-threatening.

Do we ever get a &^%^$ break?

Good thoughts to all!

John

ron50's picture
ron50
Posts: 1287
Joined: Nov 2001

And then friends compound it by telling me how well I look...SSssiiigghhhh.Ron.

John23
Posts: 1832
Joined: Jan 2007

Ron-

Yeah, it's between the: "MAN, YOU LOOK GREAT",
when they never noticed how I looked prior to cancer........

And the: "You mean you're still worrying about having cancer?
Like it just goes away if you don't think about it.....

I thought when we got far enough down the road, we became
more tolerant of others...... BAH... they still piss me off.

(haha)

John

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

We fought like hell, learned HOW to fight like hell....of course, we are passionate!!!

I will stand in a 'normal' situation, when someone is complaining about something small...and say (If I tire of it)..."Well, I'm living on borrowed time that I still pay for".

But, it happened yesterday, if the person is just an idiot, I simply take a deep breath and calmly say "Well, I hope you are never faced with the choice". A pharmacy tech yesterday asked how I voted (?) on the marajuana issue. I said I was torn, since sometimes it's the only way to fight nausea during chemotherapy. I had considered it, since nothing else worked, and I needed to continue treatment. "Oh", she said "I think that these cancer patients just need to suck it up like the rest of us, and live by the same rules!". To which I tried one more time to make my point: "Well, chemo for me, anyway, saved my life". To which SHE said "Well, some of my family died from it, and so I would never even consider it!". To which I sighed and said "I hope you are never faced with the choice!" and walked away. Then, when I got home, called the PHARMACIST and shared the conversation, and asked if they still wanted my business!!!!!!

Hugs, Kathi

New Flower
Posts: 4022
Joined: Aug 2009

you look so beautiful on this picture, and making me smile in return.

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

This was a Christmas pic from 2008...my hair is longer now...

But, I felt festive, so I thought this would bring the holiday spirit!

Hugs, Kathi

AnneCan
Posts: 3693
Joined: Oct 2009

Absolutely beautiful!

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

Agree!! She's always beautiful in her pictures, though. :-)

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Not you! ;-)
What a moron that pharmacy tech is. Some people can not show any compassion for others at all. MAYBE...just MAYBE, if she were in a cancer patient's position she might reconsider it. I guess we all should just drink alcohol instead since that has the govt seal of approval. I really find it idiotic that this is even an issue. The medicinal benefits have been documented not to mention that so much of the "illegal" drugs that come in from Mexico is pot and if there was not a need for that, the drug cartels down there would suffer and we could tax it and it could help with deficits. It's interesting how certain drugs that we know are bad for you and also dangerous to others (tobacco and alcohol) are A-OKAY to use but pot isn't.

I'm glad you called the pharmacy. I would have second thoughts about going back there. Did they show any understanding of your situation and the lack of brains on the part of their tech?

BTW: Great photo Kathi!

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

And said he would speak to her right away...

I did need to go pick up the med that I had left that day, didn't see the tech, but was treated with great respect...like everyone else, I hope!!!!

Thanks for the comment on my photo...this one turned out so well!

Hugs, Kathi

Annabelle41415's picture
Annabelle41415
Posts: 4262
Joined: Feb 2009

OK Kathi what did the pharmacist say when you shared your story? Hoping this person got fired.

Kim

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

I've had 9 obstructions. 1 full that required surgery. I learned how to clear them myself. I HATED ng tubes THAT MUCH!!!!!

As I said in another post...what makes you have the 'right' to post here or not....IMHO, is just if you have an ISSUE that qualifies: No active treatment questions - save that for the other, cancer-specific boards(I can't answer them anyway). General survival questions...living with, as you pointed out, bowel obstructions, is a GREAT one, perfect for here....

I think that if each of us remain sensitive to the fact that this board is the board of the menusha that comes from fighting the beast into submission (note, I did NOT say out of existence....). The only suggestion I have is to be clear in your subject line what the post is about....and then, we all being adults, can decide to read it or not....

To answer whether we ever get a break...well, I for one, feel I already have...I was given 6 months to live, 6 years ago!!!!

BIG hugs, Kathi

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Were seeing more long term survivors as early screening and dx give us a better chance of going many years and in cases of advanced stages of cancer, I see more survivors where there cancer has become more of a managed and chronic state then with an expiration date.

Im only a 2 year survivor of cancer but a 33 year survivor of type 1 diabetes, a 10 year survivor of heart disease/open heart surgery, a 7 year survivor of an organ pancreas transplant (to produce my own insulin as i did before my dx in 1977), and a 15 year survivor of donating part of my liver to someone else. With the surgeries, scars, and hardships this ole body has endured over the years, my focus has been much more on the emotional toll that disease and especially cancer steals from our lives. I then ask myself how one can best attempt to replace something that has been taken away and the answer is not by receiving what was stolen but to give back to others, just as we do here in CSN everyday. The greatest joy is to hear someone say, "thank you for being here, Im now in remission"

Steve

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Things to look forward to?
1- My wife & kids
2- Friends & Family
3- Sunrises & Sunsets
4- Day and nighttime skies
5- Nature
6- Kayaking
7- Making or listening to music
8- My kitties
My list goes on.....
Of course there are remnants from surgeries. I had a blockage from my initial surgery that needed "fixin" 6 years ago and there are some aches and pains that I have which are related to cancer (some to age too I'm sure)

So much of how we are now is a reflection of how we express our experiences. I don't consider myself a "survivor", I'm living with cancer. I'm fine with that. As Rob in Vancouver used to say "you haven't survived cancer until you die from something else" ;-) Many people refer to themselves as survivors and if that works, cool...

Victim? NEVER. That word is that farthest thing from my experience with cancer and with life. I've never felt like a victim at all. That's a label that only we can give ourselves. $hit happens is how I see it.

"I've never taken chemo or radiation, so I can't say I've been abused
by -any- treatment - so I'm not a survivor of cancer treatments."
I take it then John that you've only been abused by surgery? TCM has had absolutely no side effects that have been undesirable or you just follow that regime (TCM) instead of doing chemo?

Survivor of this, victim of that. This post has given me some insight to your other posts/comments on the board John. I'm sorry that you've had it so rough.
-phil

John23
Posts: 1832
Joined: Jan 2007

An abused woman that continues to be abused by her abuser,
isn't a "survivor"; she continues to be a "victim".

Being "victimized" by cancer, is much the same. We didn't ask
for it, it just came with the territory; with our life, for whatever
reason it did. And if we didn't manage to get out from under it's
abusive effects, we're still being victimized by it.

I guess it's semantics at best.... call it whatever you desire...
Me? I was victimized by it, and am still paying the consequences.

Do people consider chemotherapy and radiation "friendly" treatments?
I doubt it. Both can do severe damage, along with their beneficial
abilities. If a patient escapes the side effects and problems that others
have from those treatments, then saying that they "survived the
treatments" seems like an acceptable form of dialog....

And yes, I have been abused by the surgery. What other way to
explain how the bruising of all internal organs has caused adhesions
and hernias where I never had that before? I think the medical
profession describes the internal bruising from surgery much
the same way.

TCM didn't have any side effects that bothered me for more than a
day or two (if that long). Treatments are slow to work because the
body does the work, the treatments only help the body do what it
should have been doing.

The specific herbs I took for cancer cells, didn't have any negative
effect on me at all..... Although due to my taking too much of one herb,
it resulted in a minor problem that caused no pain, only tiredness and
fatigue, and that was resolved with one treatment of another herbal mix.

Surgery, Chemo and Radiation work fast, but along with "speed",
comes the injury suffered by body parts that can not endure invasive
attacks that occur that quickly. The treatments can work fast to kill
or remove cancer cells, but at a cost; a price paid with side effects
and possible permanent damage.

We do what we feel is best, and what we feel we have to do.

But as far as using "survivor" or "victim" to explain where we are
at this stage of life with cancer? Is there a better dialog to use?

I loveya', Phil. Not in the biblical way, as like kinda' a brotherly way.
(not that there's anything wrong with that)

John

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I really can't even talk about this stuff anymore. It's pointless.
I wish I did not bring it up.
You see things one way, I see them another, and that as they say...is that.
Under different circumstances it would be different. There are many things I like about you John.
-phil

To others who may read this thread, if you can, try to not view yourself as a victim. Since the post was about Things to look forward to... My opinion is that it enables the cancer to continue to have too much power over you. Does cancer suck? You betcha' it does but what's done is done and if you want to continue with your life, the more you can not let it have power over you the better off you will be. Not something that I want to look forward to.

Some definitions of the word Victim found on the web. Some could fit if you want them to.
Really, they all could fit if you let them.


  • An unfortunate person who suffers from some adverse circumstance
  • A person who is tricked or swindled
  • A person harmed, injured, or killed as a result of a crime, accident, or other event or action

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

Actually I don't think of myself as a victim or survivor. I just think of myself as younger days gone by use to be. Impossible I know. Even when I look in a mirror I don't change my self-image. There must be something wrong with me. In my mind I'm younger, thinner, and better looking. If I ever meet my double I'd not recognize her.

Everyone suffers from adverse circumstances at one time or another. So depends on which point of time you want to identify with.

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

You're right Phil. $hit happens.

I look forward to so much, like you. I love your list. I could copy it verbatim.... except I don't have kitties. :-)

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

They can be very calming and also a lot of fun to watch. I keep waking up with cat toys on me! Here's a photo I call "Sleeping with the enemy".
This kitty is named Chalk.
I know you don't have the best situation and they do need care. They are much easier than dogs though (IMO) If nothing else, search YouTube for funny cat videos and you'll have hours of laughs.
Hope you're feeling well
-p

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

http://icanhascheezburger.com/

got it from my stepdaughter, who can't have live kitties, but loves them nonetheless!!!

Hugs, Kathi

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

My son told me about this site too. We used to have two cats but now have a dog. She doesn't like cats.

irishangel32
Posts: 4
Joined: Sep 2011

I have dealt with 63 side effects or long term survivor conditions. At this time I just seek, compainionship and esculating need for pain relief. I have been blessed. Currently taking Daypro 600 2x a day, and 60mg of Cymbalta.
I lost 3 people due to cancer in 1 week. And after 25 years, my so called caretaker took the abuse to a new level,all out war. I sent him back to Mommy.
Then on my birthday he had a stroke. I live alone. Life is really bad when friends,family seem or are none existant. My 1 friend now is 2x as busy as before she was working.

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

I don’t know much about being alone, all through my treatment my caretaker were right there with me. Now 9 years later its been a fight but we both did it together and I love her more now then when we got married to her 37 years ago. I have a brother who lives alone he is 54 and never was married or had any long term relationships, I am not sure why other then may be he likes it.

I wish you well and hope you can find friends and family who will visit you and support you through your hard times
Hondo

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