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#23834 07-21-2007 03:22 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
It's true, what David says about how we all deal with the cancer demons in our own way. My son and I didn't find out about OCF until he was half way thru his Rad treatment and it has been a lifesaver even though he found it difficult to come here for help himself. When something in particular applied to him, I would tell him about it and when he resisted, I printed out copies to leave by his bed and from the comments he made later, I knew he had benefited from someone's compassionate advice. In all, he has only posted maybe 3 times. Perhaps the reason we don't often see both the patient and the CG posting together is that either one of them may not wish to expose their own worries or weaknesses on the other. I once suggested to my son that I could stop accessing the site, or posting, so that he could talk about whatever worried him without his mother knowing or being affected by his comments. He declined. When we first found out about my son's SCC, the first thing I wanted to do was check the internet for everything I could find out about it, but I was afraid to find out - afraid to find out the worst that could happen. It was several days before I could do it and only because I knew I had to find out so I could help him in any way I could. Just typing the words "squamous cell cancer" was so painful for me. So I can well understand the reluctance of either CG or Survivor to both post here. My son is 7 months post treatment now, still with some dry mouth issues - energy and tastes not completely normal - but he's ever so much happier and doing extremely well. And I am too! Annie - things do get better.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#23835 07-21-2007 04:23 AM
Joined: Jul 2007
Posts: 22
Annie M Offline OP
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Posts: 22
Regarding the thyroid issue-they did leave a part behind which will be removed this October, followed by Radioactive Iodine? So maybe that is why he's not on the meds you mentioned. To be honest with you all, it seems like we were dealing more with the treatments, going back in the hospital (no PEG), ER visits that it was kind of difficult to keep up with everything. His visits with the endocrinologist seem like they were ok; I just didn't realize what a difference a partial thyroidectomy vs complete was. Thanks for the help with knowing what to ask/look for at our next visit which is in two weeks with the radiologist.
As to the mental aspect, thank you David,Anne-Marie,Caregiver in Fla. I am so happy to hear that even a few months make a difference. I think he was disappointed because he made some strides after about 2 months post tx but then hit a plateau so knowing that there is not just hope but genuine possibilities to make further progress is HUGE! Also, Anne-Marie, I am not even going to tell my husband that I am on this website just yet; I can understand the issues you felt with your son. I am just not "there" yet; I don't know how else to describe it. Thank you all again!!

#23836 07-21-2007 11:06 AM
Joined: Apr 2005
Posts: 2,676
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Posts: 2,676
Annie,If you are not telling your husband that you are a member of OCF [and by the way- joining is one of the smartest things you could have done for yourself and him] how are you validating to him that some of the things you are learning and are suggesting to him are, in fact, from very experienced oral cancer patients and caregivers?
For the 1st 4 months of John's diagnosis and tx., he didn't want to learn much about his disease, and I told him that I had joined OCF to become a better caregiver and to have other people to talk to that understood what we were dealing with. Before long I had him reading forum printouts and telling me to ask questions.[He never got on the site because he didn't like computers] Being a member of OCF has always been a source of strength for me, never a sign of weakness. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#23837 07-22-2007 04:24 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Ditto what Amy said - I think in my son's case it wasn't until I gave him print outs to read that he was able to see that the things I was telling him were not just his mother "telling him what to do" but actually very good, knowledgeable, experienced suggestions which truly worked! I think it is possible that some people who are very, very intelligent (my son is one of them), tend to think that if they can't figure out the anwer to something, they think no one else can, which of course isn't true. Finding OCF is a really good thing you did!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#23838 07-22-2007 07:09 AM
Joined: Jul 2007
Posts: 22
Annie M Offline OP
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I have given this much thought and I believe you are both right. Just as it was a huge revelation to me about David progressing after 6 months and the physical/emotional aspects, I think my husband would get even more out of it because it is coming from a fellow survivor (not just his wife, as you mentioned). I also think that because he is a very private person and has, at least so far, decided not to attend counseling/support groups in person that is forum would let him ask questions/discuss issues more freely. I also think it would help him tremendously because this foundation addresses all aspects of the cancer (physical, as well as emotional, etc.).
Thanks for the ongoing advice; it is so helpful to have the help from others who have been through this. He and I will discuss the forum tomorrow (he is on a driving trip with our son and doesn't get back until then). I want to talk to him in person about the website and maybe even go to it with him, if he wants to.

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