GLASS HALF FULL - HALF EMPTY

hopper52 · June 2011

When I first joined this site in April after being diagnosed with EC (T3N0M0) I found a wealth of information and found myself intertwined with those sharing the same struggles. In the past couple of weeks, I've noted disention on what should be and should not be posted and just generally depressed at some of the (for a lack of a better term) "bickering". In my short time here I've heard of many folks who have died of this horrid disease. I believe that people should be able to post their feelings and experiences, both positive and negative without being ostracized one way or the other. Always one should consider what they write here are going to be read by others, notably scared, lonely people who have just been diagnosed. My Lord says, "Love the Lord God with all your heart, all your soul and all your mind. This is the first and greatest commandment. And the second is like it, "Love your neighbor as yourself. Upon these rest all the Law and the Prophets." (may have misquoted a bit....going from memory).

As I have posted before, I am a recovered alcoholic by the grace of God. In Celebrate Recovery we have a small group guideline, "We are here to support one another, not fix one another."

For those who have decided not to post here any more, I am truly sorry. Sherri, your tips have been invaluable to me, especially since your husband received treatment at Moffitt. I haven't found too many people that could offer any insight into this cancer center. You will be missed. God bless you.

I will continue to post here detailing my experiences both positive and negative in the hope that in some small way I'll be of help to one of those lonely, hurting people. But as it stand now, it seems that this site as a glass is now half empty which is sad.

Michael Daniels
Brandon, FL

TRK411 · June 2011

I could not agree more. The
I could not agree more. The reason I joined this board was to see and hear of others' experiences. I accept the good and the bad.

ArchTB · June 2011

And how are you, by the way?
Michael,

I share your opinion. I was happy to find this side and grateful enormously for all the advice and support I got from people here. I hope to continue getting this support and advice going forward.

I remember the first days after Tom got his diagnosis and people's reactions to the news. I could not stand people around me saying "it's ok, everything is going to be alright"! I understand they want to comfort me. But why?! Why would people make blank statements like this? Give me the reality! Give me something I need to know to deal with it! I want to be prepared, I want to make the best possible decision! I don't need pink glasses, I don't want to close my eyes on the reality. I came to this site and read 6 months of forum history in one night, swallowing all the bad and good, and I cannot express how grateful I am for that.

But, Sherri is right - enough said. No need to go back and forth about it. I think people are able to make their own decisions on what to read, what to write, what to accept and what choose to ignore.

How are you, Michael? I have not seen much update on your own well-being.
Best regards,

Olya

dodger21 · June 2011

ArchTB said:
And how are you, by the way?
Michael,

I share your opinion. I was happy to find this side and grateful enormously for all the advice and support I got from people here. I hope to continue getting this support and advice going forward.

I remember the first days after Tom got his diagnosis and people's reactions to the news. I could not stand people around me saying "it's ok, everything is going to be alright"! I understand they want to comfort me. But why?! Why would people make blank statements like this? Give me the reality! Give me something I need to know to deal with it! I want to be prepared, I want to make the best possible decision! I don't need pink glasses, I don't want to close my eyes on the reality. I came to this site and read 6 months of forum history in one night, swallowing all the bad and good, and I cannot express how grateful I am for that.

But, Sherri is right - enough said. No need to go back and forth about it. I think people are able to make their own decisions on what to read, what to write, what to accept and what choose to ignore.

How are you, Michael? I have not seen much update on your own well-being.
Best regards,

Olya

Information
I am from Australia. I was diagnosed in March. While listening to my doctor in total shock she explained the treatment plan. If the first two plans didn't work the third plan was surgery. She didn't say the name of the surgery then, but told me it has a mortality rate with people developing heart problems after surgery and dying of the heart problems. A few days later I found this website and, like Olya, read 6 months of postings in one night. It was then I was able to find out there are different types of surgery, one called MIE and another Ivor Lewis. It is from this site that I was able to say to my doctor that America has MIE does Australia have surgeons who do that. Thankfully my first lot of treatments are responding and we haven't had to discuss surgery for some stage this year. But my point is I read every single post and America seems way ahead than Australia on treatments. I would love to still be able to say to my doctors "in America they are starting to do this with this result, are we close to doing that soon in Australia?" I would love everyone to keep posting their medical experiences and their tips on coping with fatigue, types of food to easily swallow etc, so I can keep up to speed on the latest in this wretched cancer.

hopper52 · June 2011

ArchTB said:
And how are you, by the way?
Michael,

I share your opinion. I was happy to find this side and grateful enormously for all the advice and support I got from people here. I hope to continue getting this support and advice going forward.

I remember the first days after Tom got his diagnosis and people's reactions to the news. I could not stand people around me saying "it's ok, everything is going to be alright"! I understand they want to comfort me. But why?! Why would people make blank statements like this? Give me the reality! Give me something I need to know to deal with it! I want to be prepared, I want to make the best possible decision! I don't need pink glasses, I don't want to close my eyes on the reality. I came to this site and read 6 months of forum history in one night, swallowing all the bad and good, and I cannot express how grateful I am for that.

But, Sherri is right - enough said. No need to go back and forth about it. I think people are able to make their own decisions on what to read, what to write, what to accept and what choose to ignore.

How are you, Michael? I have not seen much update on your own well-being.
Best regards,

Olya

UPDATE
Thank you for asking Olya,

I've finished 21 radiation treatments......7 left to go. I have one round of cisplatin this coming Monday, Xeloda until I finish radiation and then the waiting game will be on.

I've tolerated the chemo/radiation fairly well. Nausea and fatigue are the biggest effects. More difficultly swallowing so I have dropped some weight. I was 205 shortly before I was diagnosed and now am about 180. Of course I continue to work and I work in a 90-100 degree environment so I generally lose some weight this time of year anyway. I just keep pounding down the calories.

Hopefully the chemo and radiation works and I'll be looking at surgery later in the summer.

Michael Daniels
Brandon, FL

ArchTB · June 2011

hopper52 said:
UPDATE
Thank you for asking Olya,

I've finished 21 radiation treatments......7 left to go. I have one round of cisplatin this coming Monday, Xeloda until I finish radiation and then the waiting game will be on.

I've tolerated the chemo/radiation fairly well. Nausea and fatigue are the biggest effects. More difficultly swallowing so I have dropped some weight. I was 205 shortly before I was diagnosed and now am about 180. Of course I continue to work and I work in a 90-100 degree environment so I generally lose some weight this time of year anyway. I just keep pounding down the calories.

Hopefully the chemo and radiation works and I'll be looking at surgery later in the summer.

Michael Daniels
Brandon, FL

You have a lot ahead of you
Michael,

Glad to know you are handling the chemoradiation so well. I cannot believe you are still working while going through all of these! I have to caution you though that based on my husband's experience and everything I've read about the chemoradiation, the last week and a few after the end of the treatment are the toughest. Tom has lost any interest in food and was throwing up almost daily. He also had problems swallowing and had no energy. I did my best "Russian mama" performance nagging him into drinking protein shakes. He had no more room to loose weight - he was 175 before the surgery (he is also very tall), and went down to 150. A string bean! He did not have j-tube because he was able to eat by mouth.

But with all the scary stories, rest assured that it gets better! About 2 weeks after the treatment he was able to swallow better. We were figuring out what food he was craving (probably not the right word, since he still had not much appetite, but food that he showed at least some interest in). Sometimes really weird stuff. Like vinegar. So I was making him sandwiches and adding pickles to provoke appetite. About 4 weeks after the chemoradiation, he was not having nausea anymore, or at least very little. All in all Tom had 6 weeks of rest before the surgery. By the time he was able to get the operation, he was 154 pounds - a huge victory!

I talk a lot to other patients and families in the hospital and check on various forums. It seems that Tom's experience is very typical. So, I hope it would give you a bit of heads up on what to expect.

Good luck!
Olya

GLASS HALF FULL - HALF EMPTY

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