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Joined: Sep 2006
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trt Offline OP
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thanks. I am also having a lot of trouble with it and not sure which is the best way for men. i.e. ignore the emotion and just pretend I am ok or accept the weakness. I think this is a lot tougher for men due to their psychological build, social conditioning. A part of me is fairly angry about not being able to just handle it myself without help of others and pissed off that I am weak or whining. I would probably much prefer to be independant and self sufficient and maybe want the help of others vs. need it. This still happens when I have to struggle to ask for help or reach out. I may think that I am allowing myself to stay depressed by not fighting and it's my fault.

I post here, but I did not tell anyone about OC during treatment and still don't tell most people. I would not mention depression; mostly I'd say I am tired, miserable, have fatigue or something like that.
I may even try to pretend I am normal on an occasional good day; this of course will make me stressed and immunity will go down. This last time I've been sick for 2 weeks. It's useful to have a place like this forum and I appreciate the kind words and support.



[quote=Pandora99]Be proud of yourself for posting about the emotional side of cancer. I am thrilled that you are dealing with it openly and are working hard to find the right balance of medication and therapy. Far far too many men don't seek help when they should - with horrible results.

KNOW that your feelings are not unusual. I have a brother in law who had kidney cancer 10 years ago and he tells me now that without DENIAL he never would have made it through. How does that go "Denial is more than a river in Egypt". We all deal with it differently. No right or wrong way.

One day at a time, on foot in front of the other. Take care of youself first - and only if/when you feel you are ready - then you can think about new relationships in your life.

Take care.

Donna [/quote]

Last edited by trt; 01-25-2009 05:26 AM.

Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Sep 2006
Posts: 149
trt Offline OP
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Woke up today pretty scared. I've been sick for about 5 weeks. now with flu symptoms. Even more fatigue, sore throat, headache, muscle pain. It's really annoying as it's making me even more housebound. I saw a doctor and he said it's viral there is nothing to do.

I managed to pull/hurt my hip flexor and this hurts a lot especially at night and I am waking up. This is probably increasing the anxiety.

I am getting more and more physically weak esp. due to the flu/whatever.

I noticed a small lump/something in my testicle. great

I emailed my primary oncologist/doc to see whether a physical therapist would be useful to somehow help me gradually get stronger but she did not respond. oh well.

An acquaintance from abroad (friend of my brother/family) said he would call today and I am actually experiencing stress over that; it's as if I wanted to avoid the computer. Finally I managed to look at my calendar to see what appointments I may have today.

Last edited by trt; 02-05-2009 09:58 AM.

Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Sep 2006
Posts: 149
trt Offline OP
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Has anyone managed to become positive and optimistic, seeing the good in things after naturally being negative, pessimistic and only seeing what's wrong. How?


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Dec 2008
Posts: 1,004
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Hi TRT,

For the most part I have always been a happy person. Is there anything in your life that you are happy about? Or, is there anything that you like to do? It is very easy to think about the bad in life but there has to be something that brings a smile to your face. What are those things?


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Nov 2005
Posts: 1,128
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I find it helpful to stop occasionally and hold my current worries up to the light to see how important they really are in the big picture -- And as we all now know, some things are a LOT less important than others wnen compared to the cancer.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Dec 2008
Posts: 1,004
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I'm gald to hear you have that type of outlook. That is important.

I couldn't agree more about the comparison to cancer. I was watching Hell's Kitchen last night and this girl was sobbing over a hurt ankle. I thought...PLEASE. GIVE ME A BREAK. I don't know how she would deal when something bad actually happened to her.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Sep 2006
Posts: 149
trt Offline OP
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Joined: Sep 2006
Posts: 149
I think it's much easier if you are a natural optimist.

There are some things about which I am happy like my daughter. They can temporarily take me away from the pain/loneliness or distract me.
The next day, oesp in the morning, the fear and catastrophizing are back.

I managed to find a therapist to see me for 6 sessions. She also wanted me to go that route. Find 3 things that I enjoy ,do them for half hour each day and note the feelings. I've only been able to do one thing

Sometimes I am almost afraid of doing something that I like for fear of coloring it negatively, somewhat like not eating favorite foods during Tx for fear of associating them with Tx.

Often I find something wrong even with the pleasant things or activities I enjoy.

The loss of physical ability, injuries and illness make it harder to deal.

I've hurt my hip and it's now been 2 weeks. It wakes me up at night. For about 6 weeks I've had flus/colds and whatever. Right not I have a strong headache feel more fatigue etc


[quote=suzanne98]Hi TRT,

For the most part I have always been a happy person. Is there anything in your life that you are happy about? Or, is there anything that you like to do? It is very easy to think about the bad in life but there has to be something that brings a smile to your face. What are those things? [/quote]


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Sep 2006
Posts: 149
trt Offline OP
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Joined: Sep 2006
Posts: 149
yeah, I used to be depressed about back pain. Now I only wish I could have back pain. Unfortunately I can't seem to do that with divorce or loss of standard of living.

Another thing is that I am in my early 40s and feel like I have not accomplished much or did much of what I wanted to do (dying in fear). I think it's easier when a person is happy with their life and feels accomplished, did what they wanted and is ok with dying (dying peacefully).

I kept putting things off or was to afraid to try. Now that there is probably not much time left I don't have the capacity, strength or will. I also seem to be lacking in purpose (purpose in life).


[quote=Pete D]I find it helpful to stop occasionally and hold my current worries up to the light to see how important they really are in the big picture -- And as we all now know, some things are a LOT less important than others wnen compared to the cancer. [/quote]


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
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Joined: Nov 2005
Posts: 1,128
[quote]I kept putting things off or was to afraid to try. Now that there is probably not much time left I don't have the capacity, strength or will.[/quote]
So, since you didn't get around to doing all the things you day-dreamed about doing, you are going to die with a low score? So what?

YOU made that list and YOU can change it.

When I was in adverse circumstances, military training cycles, Vietnam, bad time at work, etc., I would visualize places I'd rather be and things I'd rather be doing -- I still haven't done most of those things and most likely never will -- So what?

"Regret is the ultimate in self-abuse." Travis McGee as written by John D. MacDonald


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Sep 2006
Posts: 149
trt Offline OP
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Joined: Sep 2006
Posts: 149
that's a good point. I have to get out of the negative frame of ming (funny sp mistake I meant: mind) somehow.

The meds change caused slightly less anxiety, but now anger is surfacing and I find it returning about the treatment and all the fucked up stuff/sufering I went through due to lack of energy, support and docs who don't care.

Before I knew the tumor is malignant, having no insurance, I stupidly went to County USC where some unsupervised student cretin in training (Dr Yu, I think) did a biopsy on my palate with a scalpel and no analgesic. I remember the nurse asking him "is it sterile". He injected something which was probably expired..., or did not wait long enough. It was the most pain I ever experienced in my life. This was like a horror movie in a 3rd world country war prison/hospital. This is where my anxiety began: great beginning for treatment.

Of course I was alone without anyone to help or support. Just walking into that hospital is scary. The whole place should be burned down. The way patients are treated like garbage/experimental rats, without any concern for their well being angry bureaucrats. It's more like a Nazi concentration camp focused on getting people out asap.

When he was finished he just left. I felt dizzy and traumatized. The nurse immediately asked me if I am ready to go home even though I looked like I might fall/faint any second.

On the way down in a daze I somehow got into an elevator that was meant just for staff/docs. Noone said anything but when we reached the first floor and got out, a young female doc angrily told me not to use that elevator.

When I tried to get the med records, they just delayed them for weeks and never sent them. I stupidly lost a few weeks there and could have been treated earlier. I should have just gone into surgery immediately as the doc said it's the same treatment for benign and she can biopsy during surgery. But no I stupidly waited for results and more tests at the new place to make sure it's malignant.

[quote=Pete D][quote]I kept putting things off or was to afraid to try. Now that there is probably not much time left I don't have the capacity, strength or will.[/quote]
So, since you didn't get around to doing all the things you day-dreamed about doing, you are going to die with a low score? So what?

YOU made that list and YOU can change it.

When I was in adverse circumstances, military training cycles, Vietnam, bad time at work, etc., I would visualize places I'd rather be and things I'd rather be doing -- I still haven't done most of those things and most likely never will -- So what?

"Regret is the ultimate in self-abuse." Travis McGee as written by John D. MacDonald [/quote]


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
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