| Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Great post, Susan! I understand a person's style can really put-off a reader. It is such a shame when valuable information gets lost as a result of an antagonistic tone in a comment.
Sometimes people do not know that their comments are hurtful or offensive. A kind, compassionate, aware person will apologize and make amends when they realize they've hurt someone. I admit to have been party to it and I apologize.
Thank you, all, for your positive messages and support over the past few months. I am truly lucky to have found OCF.
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Whilst I appreciate that many people, particularly new members, on the forum are scared or sensitive and may view a comment as abrasive or insulting, I would like to put myself forward as one of the others who see the supportive comments as less valuable than the baldly stated opinions and facts.
The supportive posts may well frustrate the those who want the bald truth without the "emotional crap", and the "bald truth" posts could well offend those seeking support.
The point I am taking forever to make in an attempt to recognise everyone's style without offending anyone, is that there are many personal styles and each one is valid. Provided there are no personal attacks (eg "get over yourself" as opposed to "I disagree with ..."), we should all be able figure out whose style we appreciate and avoid or ignore those whose style we don't.
Luckily for all of us there are thousands of posts to choose from so this shouldn't be too difficult.
Karen PS I would love to tell the story of my family's weekly dinners with Mum the "Peacemaker" at one end and Dad the "Debater" at the other but that would make this post even longer than it already is.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Weighing in on this, as I have received several pm's on the subject, civility is an important and vital aspect of our community.
Some people are better at greeting than others. Personally I tend to avoid "greetings" to newbies, as a general rule, as I prefer to help people with my experience, strength and hope (and besides there are much more qualified and compassionate people on the "welcoming commitee" then myself).
I also tend to be straightforward and into the science and accuracy of the information and opinions I put forth (not that I am always right either).
I am also a passionate person so I often edit my posts and also typically preview them before I send them. Sometimes I delete them before sending. In any case, due to the frightening aspects of this disease, it would serve us all well to be sensitive to the feelings and fears of others and put ourselves in their shoes. This has to be a place of solid information, hope and support. Not a place for cynicism, judgement or getting personal in any manner.
I tend to take periodic breaks to resensitize myself and I recommend to the other senior posters to do the same. If you don't take the time to take care of yourself, you won't do a very good job of taking care of anyone else.
Dumping your stress on the forum is never a good thing as you might well push someone over the tipping point (but venting is perfectly OK if that makes any sense - especially if you are new or a caregiver).
While we're on the subject of forum etiquette I should also add that hijacking a thread is not appropriate (although we have all done it) and also, if you are new, please don't post the same information in multiple topics. It'll be much more efficient for you and responders.
The last thing I want to add is don't take others inventory and always look at the similarities rather than the differences.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | I was welcomed to these boards over 4 years ago by David .It was a post i will never forget.Boy he didnt pull his punches and really told me how it is.I will be forever grateful for his candour although at the time i was absolutely staggered.David gave me good factual information mixed with his own knowledge of the journey we were embarking upon.He delivered this in a shoot straight from the hip kind of way that i became very familiar with over the months,and as our friendship grew i came to appreciate his very dry wit as well.Some people would have run for the hills after the first post,but for me it was spot on,and put the rod in my backbone for the fight ahead.Gary and Brian have this same no nonsense approach which in the circumstances was entirely appropriate for our battle.
I too can be straight talking and forthright,but in my adopted role of "black widow" lol,i have found my niche,and now find myself being asked to liase with carers facing the ultimate diagnosis and also trying to come to terms with the changes in their lives and especially their relationships.I love this "Job" and often think of my mentor Jam who walked me through the minefield of facing the loss of a husband.In this instance a great deal of care and compassion is needed and straight talking may not be appropriate.I like to get to know posters first before deciding exactly what they need,support or knowledge.
My point is, that i agree with the concept that not one size fits all and newbies may like to cherry pick who they use to help them through by reading a few posts from us old timers and of course using the PM route to either ask for help or suggest that the method of sharing experiences is not for them.
Horses for courses we say here in the UK, and i think that is true in most cyber relationships.We need a good mix to meet all needs,and i think we get it pretty much spot on on the whole.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | So very well said, Liz - I, too had the benefit of Jam(Amy) and David's unique compassion and straight talking support. My son was 4 months behind David's treatment and I always looked forward to how David would update what was happening with his treatment so that I could see what might be coming up next with my son's Tx. I will always remember Amy's words to me of "Put your nurse from hell hat on . . ." which is exactly what I needed to do, and did and things took and upturn after that. And Liz, I agonized and cried with you many times and was awed at your strength and compassion. I am so glad you are here now to help others.
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.)
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 |
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | I often wonder how Amy (JAM) is doing and wish she would check in now and then.
Has anyone talked with her?
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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