What happened with this site?

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RE: What happened with this site?

by Sdurnell on Mon Jan 27, 2020 11:27 PM

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Johnsonly1,

I am the Susan PopPop referred to in his post. I also had my throat close up completely, which was a side effect that we didn't anticipate, even though I made sure I was very well informed about treatment and its effects.  We are all different and no one can predict how this barbaric (but often succesful!) treatment will effect any one of us.

I have had around 20 dilations over the last 8 years or so.  But all of mine were balloon type. It took a series of them at first to get me eating again, and afterward usually 2 or 3 a year to keep me eating.  But the last one has been successful for over a year and a half.

The success of these treatment greatly depends on what the damage to the throat is.  I had a very high stricture;  my ENT tried to dilate it but was not successful.  He found me a GI who had a lot of experience with tricky cases, and that doctor was the one who was able to do the job.

I was on the feeding tube, which I needed for all of my hydration, nutrition, and medication, for more than a year.  During that time I had a lot of problems with it, but also learned to make peace with its necessity.  We did some traveling, flying across the country one way and driving back the other, and I realized that I could do pretty much anything I wanted to, tube or no tube.

So I don't fear the possibility that I might once again be dependent on a feeding tube.  My dad had one for his last five years, and was happy with it.

I suggest some counseling for your husband.  Maybe talking to a minister in your faith would help him see the value of all human life, no matter what constraints exist.  I think this could be of value whether or not you find some medical help for his condition.  

The bougies the sometimes use for dilation work on kind of the same principal as balloons do, but might be better suited to his case.  From what I can tell it's just a doctor's preference which type to use.

Please do seek out other opinions;  I would never accept what I'd consider a bad situation on just one person's judgment.  Go to the biggest cancer or ENT or GI center you can find, and get on the list to see someone with a lot of experience.  That was key for me.  And don't hesitate to be an advocate for him, or to encourage him to advocate for himself.

Life is never quite the same for us head and neck cancer patients after treatment, but it is life, and it can be very good.

All the best to you both,

Susan

RE: What happened with this site?

by CeeDee on Mon Jan 27, 2020 11:40 PM

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Dear Susan,

Wow. I just now read this post, so sorry about the one i just sent to you...This site is confusing, or it is just me.

If a person knew they would live 4-5 years with the cancer, and be able to eat, drink and have no tubes, then pass away, would it be better? Better in terms of the other option of living a little longer because of "treatment," but living with a low-quality of life?

Did you feel this way--like i do pre-radiation treatment (starts in 2 days)--i mean, going back and forth with treatment indecision? I have been driving everyone crazy, because it is such a hard decision for me to make.

Are you really glad that you went through with it? No offense please...i am very head-spinningly, undecided! If i was in my 30s or 40s, there would be less indecision as so much life ahead. 

Also, to change subject, our daughter asked what would happen if a nation-wide quarantine took place while a person is in treatment? If the treatment had to stop, would that make the cancer go wild?

Thank you! God Bless You.

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