cancer survivor, but...
David Azose
cancer (13 years ago I also had a cancerous lesion on my tongue
removed). I did not have an easy time of it, having undergone concurrent
chemo and radiation therapies, and unable to tolerate the stuff they
wanted to feed me via a feeding tube. And now I keep reading and hearing
about other survivors who have a much more “realistic” and positive
outlook on life. They live a fuller, richer life knowing how precious it is.
My experience is totally different. I am much, much more tentative now.
I mostly just sit home. I know I’m somewhat depressed. I don’t know if I
would call them flashbacks or daydreams or just compulsive behavior, but
I’m very frightened that I will have to go back into the hospital, and I
think about that possibility all the time. I was in the hospital the
better part of six months, the last 2 weeks with aspiration pneumonia.
I don’t know if my experience is unique. If there are others in this
group who have experienced something similar and gotten over it, I would
be very happy to hear about it.
David Azose
Guybrush Threepwood
Hello David,
I had a metastasis found last year from a testicular cancer in my spinal column in 2003. I had to pass chemo. and radiation therapy
for a second time and I am feeling a little similar to you. I think I am isolating myself more and more and I am a lot more
sensitive than before, thinking all the time that people are not understanding what is going on inside me. Physically I have almost
recovered now, so that at work my colleagues think "I am back" as before...but I am not. I feel a lot less resistant to stress than
before and am very tired all the day.
I think, we just need a lot of time to get back to normal life....but sometimes I ask myself "what is normal?"
Best regards from a german living in france.
--
Gruß Guybrush
>Mails landen im Mülleimer!<
Janet Wilder
I was diagnosed with squamous cell cancer on my tongue in May of 06. The
tumor was bigger than anticipated and I lost half of my tongue in
surgery. I then had to undergo 30 radiation treatments in case there
were any microscopic cells floating around. The radiation was horrible.
I did not tolerate it well even though I tried really hard to maintain
a positive attitude.
With only 4 more treatments to go, my colon ruptured probably as a
result of an obstruction caused by the pain meds. I had to have an
emergency colostomy. While still post-surgery in the hospital, I
finished the last 4 rads. Then the full-blast of post-radiation effects,
which, in my case, were worse than the effects during treatment hit. I
was in the hospital for 2 weeks. I was dehydrated and starved. They had
opened my incision on my stomach to drain and the bag took up most of
the rest of it, so even though I needed a feeding tube, there was no
place to put one.
I only wanted to die. Every morning I awoke angry that I was still here.
I hated the colostomy bag. I hated my burned face and neck. I hated the
2 inch deep and 6 inch long bright-red gash in my stomach. I hated my
burned up and constantly sore mouth and throat that made even swallowing
water painful. I missed the 3 teeth the oncological dentist had pulled
prior to radiation. I felt like I had been violated. The opiates that I
needed for pain management kept me awake and I only slept in 20 minute
snatches, usually toward dawn.
Then one night, the opiates finally left my system and I slept for about
3 hours straight. I awoke that morning and decided that if I was going
to keep waking up in this world, I might as well make the best of it.
I fired my husband from his job of helping me irrigate the ostomy every
morning and I began to do more with my day than lie in bed hoping to die.
Two and a half months after the ostomy, I had it reversed. By that time
I had resumed bowling and socializing with friends, though I was always
certain that everyone could see and smell the ostomy bag. It took me
about 5 months to get back on my feet and regain my strength, my energy
and to stand upright. It took 3 full months for the incision of the
reversal surgery to close.
I am one-year out of radiation and about 11 months out of the ostomy
reversal surgery. I have no evidence of disease. I have gained a few
pounds and no longer look like something the cat dragged in. I am
bowling once a week. I do my own house work and walk on the treadmill.
Tuesday I went deep sea fishing and helped 4 other people limit out. I
caught the most keepers that day. We caught red snapper in the Gulf of
Mexico.
Tomorrow DH and I leave on my "survival" gift: a three week cruise-tour
of Australia and New Zealand.
I still have issues with the scars from the abdominal surgery. I have
only half a tongue and can't eat certain foods that I like. I speak
with a slight lisp which amazes my ENT who thought the results of a
hemi-glossectomy would produce less clear speech. I just had a physical
and my labs were perfect for cholesterol, blood glucose, kidney, liver,
etc. Healthy as can be for a 61 year-old grandma.
I, too, am terrified of the cancer returning. No more radiation if that
happens and I can't afford to lose any more of my tongue, but I refuse
to let it steal from me whatever time I have left. There is nothing I
can do to prevent any further cancer. If it happens, I will deal with it
then and make my decisions. Right now, I'm enjoying the gift of life and
health.
I was dealt a bad hand of cards in the card game we call life, but no
card game consists of only one deal. The cards get shuffled and
re-dealt. It's then up to us to play the new hand as best we can.
No one can make your depression go away but you. If you want to live
that way, then I supposed it's your right, but what about all the people
who love you and care for you? What about all of those friends and
relatives who prayed for you and sent their good wishes? Does immersion
in self-pity pay them back for all the positive energy they expended on
your behalf? Aren't you hurting them by your behavior? If you can't get
better for your own sake, think about all of those people who care for
you and do it for their sakes.
Off my soap box.
Janet
--
Janet Wilder
Bad spelling. Bad punctuation
Good Friends. Good Life
xela56
"> Tomorrow DH and I leave on my "survival" gift: a three week cruise-tour
> of Australia and New Zealand.
Have a wonderful trip, it sounds like a great one. You deserve it, I except
to see a review on the other board you post on.
>
David Azose
Well at least I know I'm not the only only one feeling this way. What
I'm trying to do is to get involved with friends I know who are
interested in photography, as I am. I'm hoping that photography will be
a kind of "occupational therapy". I have signed up for a photography
workshop in Death Valley, California in February.
I too feel tired most of the day. But as I have retired (I tried working
soon after getting out of the hospital, but I just couldn't do it), I
take naps which helps a little, but then I feel guilty for not doing
anything. I am hoping things get better for both of us. Thanks for
sharing your story.
David A.
David Azose
I think you had a much more difficult time than I did. I admire your
attitude. I just wish I could emulate it. I'm trying. I signed up for a
photography workshop in Death Valley to be held in February 2008. That
at least should get me out of my "do nothing" routine.
Good luck on your trip.
David A.
turtletrot1
>
> Hi,
> . I have signed up for a photography
> workshop in Death Valley, California in February.
Death Valley is fantastic for photography. I know you will be amazed
and fascinated. Wish you the best. Blessings
betsyb
MZB
Mel
"Janet Wilder" <kellie...@yahoo.com> wrote in message
news:4717d65d$0$21851$c3e...@news.astraweb.com...
Figgertoes
news:1192820391.2...@i13g2000prf.googlegroups.com:
Hi, Turtletrot,
Annie who posts here some (not Anne) is on a trip that included Death
Valley. Annie was also Penny's friend. She's quite a photographer too.
You might enjoy her stuff:
http://s223.photobucket.com/albums/dd175/lens2life/?mediafilter=images
Eye candy...
She hasn't posted all of the narriative, but some of it is here:
http://www.livingwithcml.blogspot.com/
Fig
turtletrot1
>
> ........Annie who posts here some (not Anne) is on a trip that included Death
> Valley. Annie was also Penny's friend.......
> Fig
Thanks, Fig. Our trip to Death Valley was one of the high points for
my beloved Franzi. It really is a wonderland. Thanks, too, for
recalling Penny. I still have her blog to access. She was one in a
million and missed every day even by those who never knew her except
through this venue. Blessings.
csm...@hotmail.com
Thanks for the post, Janet. You pretty much define "inspiring" with
your soap box.
Keep your head up, David. You can always come here for support.
---
CSM
Una
>I don't know if my experience is unique. If there are others in this
>group who have experienced something similar and gotten over it, I would
>be very happy to hear about it.
You can count me as one. In my case, the cancer was in my unborn baby.
I was a basket case for many months, rarely going out or doing anything
but feed the baby and obsess. I am glad that I obsessed, up to a point,
because it turned out I needed to take charge to ensure proper followup
after my baby's surgery. But eventually I reached the point where I
was miserable and knew I was miserable. So I started working a little
on re-establishing my life apart from being my baby's "cancer mommy".
Surviving cancer is a life-changing experience, a time to reassess your
priorities, take stock, clean house. Out with the old, in with the new!
The trick is to find the new to bring in; if you don't look for it,
you can waste years just sitting there doing nothing. I found it very
therapeutic to remove loads of unwanted stuff from my home to a thrift
shop and freecycle.
David, you do sound depressed. Maybe you would benefit from drugs or
therapy, or maybe you just need to get out of your house and find some
new, fun things to do.
Una
Una
>I had a metastasis found last year from a testicular cancer in my
>spinal column in 2003.
Maligne Keimzelltumor? That is my nightmare. My baby's tumor was a
teratoma. It appeared to be pure teratoma (so benign) but now her
AFP tests are looking bad.
Una
David Azose
Thank you for the good words of encouragement. Your suggestion to clean
out the house is very timely. I have lots of stuff in the basement that
I never use (and don't really need) and have been thinking about
cleaning it out. But of course, inertia (and depression?) take over so I
haven't done it yet. Maybe now.
I have be doing a little more photography and liking it. That has gotten
me out of the house a little. I'm working on it. Thanks again.
David A.
Una
>inertia (and depression?) take over
They sure do. Like cancer, they too are your enemies.
You're recently retired and mostly staying in the house? Odds are, you
are not getting any real exercise (meaning, where your heart rate must
accelerate for a sustained period). Perhaps not eating all that well.
Being hospitalized for months makes a big dent in your muscle mass and
cardiovascular fitness; if you don't rehab afterward, you are bound to
feel weak and become exhausted easily.
Allow yourself to take naps without guilt; they are part of healing.
Assuming you are in the US of A...
Contact your local YMCA about getting into a physical fitness assessment
clinic, and maybe also a conditioning program. Those are very good for
rehabilitation. One popular conditioning program, offered at many Y's,
is water workouts in a swimming pool.
>I have be doing a little more photography and liking it. That has gotten
>me out of the house a little. I'm working on it. Thanks again.
Excellent! Would you like to contribute photographs to Wikipedia.org?
Look at Wikipedia pages about subjects that interest you, find one that
needs an illustration, and go out and take a photograph to illustrate it.
Why not go down in your basement right now and grab a box of something
you have not used in years, and get that one box out of the house. Put
it in the trash, or on the curb for scavengers, or take it to a thrift
shop. But just do it. Do it now. This is a small experiment just to
see if it helps you feel better.
Una
Guybrush Threepwood
Hello UNa,
I am very sorry for your baby. I had a pure seminom which is a "maligner
Keimzelltumor". The metastasis was of the same kind.
My doctor kept telling me that it responds very well to chemotherapy and
radiation.
All the best for you and your baby.
--
Gruß Guybrush
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