#18450 08-16-2005 02:25 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Karyn,
Sites like this didn't exist when I and Brian and Cathy were diagnosed which is why Brian founded this wonderful site. Those times were really scary doing this alone. Hang in there and we all will try to help you get through treatment. Keep us posted and keep asking questions. Take a deep breath and as Danny says 'the road is rough', we'll try to get you down it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#18451 08-16-2005 02:39 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Karyn, It helped us to have a notebook and a small calendar with us at all times once John was diagnosed. I wrote down every date for every scheduled test, etc. and kept a running list of questions to ask each Doc. we saw. Then I would get on this site at night and read and write down more questions. It helps alot to keep your mind focused on understanding the language of cancer treatment and being able to ask good questions. Best of luck as you get going. Amy
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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#18452 08-16-2005 03:02 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Re the book for keeping track of things, there is a really good cancer organizer on Amazon that people really like...wasn't around when I went through all this and Ingrid also took copious notes. I highly recommend it. you can keep track of tons of things in it. Please, if you buy it there, use the OCF link on the message board page or the books page to go into Amazon...they give us 2.5% of all sales that come through our links and it dosen't cost you a cent more. http://www.oralcancerfoundation.org/products/books.htm First one on the list - the cancer patient's workbook. Having said that for those of you that buy anything on Amazon, please remember to put the page with our entry link to Amazon on your tool bar and go to them via it. They will then know that you came from us, and we'll get our small cut. Every cent helps!!
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#18453 08-17-2005 03:22 PM | Joined: Aug 2005 Posts: 17 Member | | OP Member
Joined: Aug 2005 Posts: 17 | Hi again, the notebook sounds great. I am in the process of ordering one now. I am scheduled for my first appointment next Friday the 26th August (Daffodil Day Cancer awareness here in NZ). I have finally been put in contact with another survivor here in NZ so I look forward to catching up with them. Thank you so much for all your advice and kind thoughts. I will keep you posted on progress and in the meantime I am getting everything organised with my family before I go for treatment.
Take care...thinking of you all. Karyn
SCC left tongue Stage 2. 34 years old. Free flap and neck dissection 12/09/05
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