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Post CK emotional waiting game
pbp214
Posted: Tuesday, October 28, 2008 5:13 AM
Joined: 10/10/2008
Posts: 193


I also posted this on the ANA discussion forums but post this here now as some here do not use the ANA forums. I would love to get everyone's thoughts on this (yes, even the docs as well as maybe they can share patient stories as well if they are aware of some).

 

=====================================

 

i all,

I wasn't sure if I wanted to post this here, the "Post Treatment" or in the "Cognitive/Emotional" Forum but since this is solely noting for post-radio treatment, I've opted to put this here.

Over the many years, I have spoken and seen much written by folks that just endured one form or another of AN radio treatment (any of the radio treatments, CK, GK, FSR, etc).  Also in my talks to those that contact me (either by the WTT list or via email), there are many that note the post treatment issues, but mostly physical in nature (ie: edema, diminished hearing, balance issues, etc).  What is rarely discussed is the post treatment emotional ride of waiting out the treatment results.

Many times in my discussions with potential radio-patients, I will sometimes bring up the reminder that folks have to have an extreme amount of mental strength to wait out the ride.  Sometimes, I have to remind folks that things may crop up that we are educated to look out for that could/could not occur.  But, many folks tend to forget about the emotional impact of post-radio. 

The waiting game post-radio is not easy.  It is not to be brushed off.  Many have the mental strength to wait it out... many don't.  Unlike the microsurgical approaches to AN removals, with radio treatments, we don't have "instant results".

So, for those researching radio treatments (or for those that just recently endured radio treatment)...... maybe the "veteran" radio patients here can share how they waited out the journey post treatment.  What got you through it, when we jumped at every twinge (not all to be ignored, of course!)?  How did you withstand the mental waiting game?

For me.... as many know, I have a great deal of mental strength... but trust me when I say that there were many days that I sat back and said "I'm tired of the wait, I want the sucker done with now!".  I had the love and support (and still do) of those family and friends that helped feed me positive energy and cheering me on, reminding me that I have done what I believed to be best for my situation and to have faith and courage to forge forward.  They let me cry (I certainly earned that right) if need be...... I tried to switch my focus to other things (ie: I was planning my wedding immediately post-CK, thus, I was able to easily put my focus elsewhere... the wedding occurred 6 mos post CK).  I tried to remind myself to forge and move forward with my life and have faith in the "man upstairs" (or woman upstairs, depending on your  point of view....) that the end result will be what is chosen for me.

So, this thread is to share with all potential and recent radio patients that you can draw mental strength for the post treatment waiting game through us... and for the "veteran" radio patients to share ways to deal with the waiting game.

Hang tough all. No one says the waiting game and what may come along with it is easy..... but, you CAN do it!  Hang in there! We're here for you!

Phyl


===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


radsrus
Posted: Tuesday, October 28, 2008 6:34 AM
Joined: 10/10/2008
Posts: 4435


Be interesting to hear the responses. Share with us what is said at ana-usa

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org


 

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102


paamboli
Posted: Tuesday, October 28, 2008 1:37 PM
Joined: 10/20/2008
Posts: 43


Phyl,
I can identify with everything on your post.

Is anyone doing follow-up on folks in our situation?

paamboli  ( barbara )

radsrus
Posted: Tuesday, October 28, 2008 1:43 PM
Joined: 10/10/2008
Posts: 4435


Yes. But we often aren't told everything that is going on. And it is difficult to evaluate things that cannot be objectively measured, bothersome though they may be.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org


 

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102


pbp214
Posted: Wednesday, October 29, 2008 5:00 AM
Joined: 10/10/2008
Posts: 193


Hey Pam/Barb,

 

Thank you! How have you dealt with the waiting game?  Besides tolerating us, how have you gone through it?

 

Dr. M (and all), folks on the ANA thread are starting to share their stories of how they deal with it.  You can read current responses here:

 

http://anausa.org/forum/index.php?PHPSESSID=2a0e0883177b912a4c3221d17bb92378&topic=7875.0

 

Looking forward to others chiming in so we can all learn how to handle what can sometimes be a difficult road to travel.

 

thanks all!

Phyl

 



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


paamboli
Posted: Wednesday, October 29, 2008 11:32 AM
Joined: 10/20/2008
Posts: 43


Phyl.
I don't know if you will ever see this,  as I am having one hell of a time logging on and navigating the new site. It is either my 'squash rot' or a glitch somewhere.
I am not coping well with either the emotional waiting game or the post-CK side-effects of edema and zork. Fortunately, I have longtermcare insurance which is providing me with assistance at home before I croak from a combination of Burger King and TV dinners.
Medbury says that a CK follow-up questionaire would be difficult, and I say POO to that. You and I could whip one up for them, but I doubt that Accuray would go for it.
I was raised in Chestnut Hill, and my father was a volunteer and trustee at the B.I. for many years, so at least we have other things in common.
My frustration with the new site is crazy-making, so if you feel like getting in touch, email me at barbara@coastside.net.

paamboli

pbp214
Posted: Wednesday, October 29, 2008 12:31 PM
Joined: 10/10/2008
Posts: 193


Oh, I see it Barb.  I've kinda-inna-way alerted the powers that be around here that you are noting these issues .... hang in there... new sites run into glitches. I'm giving it a good solid month before these things start to calm down. Don't hit your computer or monitor... just see how many languages you can use to curse. Trust me, I have the ability in a few different languages that I can share off-line!

 

How come you aren't coping post-CK well?  You know I've been following along as best as I can to what is going on, post treat, for you and for many (I try my best). You and I know that the waiting game just totally stinks.... but, by us chosing CK (or any other form of radiation), we know it's part of the territory.

 

I never say never to Accuray's potential interest in post-CK surveys by a variety of post-CK patients (did the powers that be hear that?!?!?!?! Me thinks they did!)

 

didn't know you had such a close affiliation with BI.  I bet your dad did them proud!  Chestnut Hill!? Oh, let's go shopping!

 

Hang in there... please note here why the waiting game totally stinks for you... we may be able to come up with some remedies to help you out along the way!

 

Phyl



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


radsrus
Posted: Wednesday, October 29, 2008 12:36 PM
Joined: 10/10/2008
Posts: 4435


I don't think that Accuray or anyone else would object to such a questionnaire, but there are problems: 1. It would have to go out repeatedly 2. Many of the things people complain of are things I would have never thought of putting on a questionnaire 3. Following up on previously unknown issues gets into HIPAA issues A previous CK patient is thinking about putting together an ongoing questionnaire site but I don't know where that stands.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org


 

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102


paamboli
Posted: Wednesday, October 29, 2008 1:49 PM
Joined: 10/20/2008
Posts: 43


Phyl,
If this works, maybe I'm finally getting the hang of things. They fixed my log-on problem again, which helps.
The primary reason that I am not coping well is due to the location of my meningioma, which is pushing into the left frontal lobe of my brain tissue. Things like emotions, planning, organization, and executive functions all hang out there, and damage in that area can cause depression and anger to flare up. It's like real estate...it's not the size that matters, but location, location, location! My neurologist says it could take 3 or more years for my healthy neurons to re-route around the thing.The emotional waiting game is just that. My first post-CK MRI was given opinions of growth, no growth, and smaller. The July MRI showed no growth. As in maybe dead. I keep wondering, but just momentarily, if I should have gone for potentially dangerous surgery, but I would have experienced edema and tinnitis with that as well, plus a long recovery due in part to my age, which is 69. I've got Frontal Lobe Syndrome. If you Google that, look for the post from iafrica.com, where I was, unfortunately, able to find parts myself, although I have not turned to felony. I have not given up, am still fussing, and have good days, but this is not one of them.
paamboli



radsrus
Posted: Wednesday, October 29, 2008 6:22 PM
Joined: 10/10/2008
Posts: 4435


It is the fear of the unknown that probably drives people batty. We see the same thing in breast cancer. Women who have a mastectomy have much worse outcomes in terms of body image, sexuality, sense of well-being etc. But during the first year after treatment, women who have lumpectomy and radiation have higher anxiety, despite the fact that ultimately the y end up psychologically much better off.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org


 

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102


pbp214
Posted: Thursday, October 30, 2008 4:17 AM
Joined: 10/10/2008
Posts: 193


Dr. M... you touch on a terrific point... "fear of the unknown".  As with many things in life.... for me.... the fear of what is going on inside my head (ie: is it still growing, has the growth stunted, will there be a regrowth, etc?) pretty well is "spot on" as my British friends would say.  Add to that the time that is needed to see if our radio-treatments have worked and voila! Instant anxiety.  So, what can be done about it? Ways to conquer it?  The thread on the ANA board is still growing, some noting about staying busy... keeping focused and busy during the time it takes to get end results... yet, in the world of AN's... is there truly end results as we should always have head MRI's in our lifetimes to make sure nothing else is going on.

 

I dunno. I have no true answers on ways to conquer the waiting game anxiety other than trying to keep busy. Would love others thoughts as well.

 

I need more coffee.

Phyl



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


radsrus
Posted: Thursday, October 30, 2008 4:19 AM
Joined: 10/10/2008
Posts: 4435


I think the important thing is to focus on the 95-98% control rates.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org


 

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102


pbp214
Posted: Thursday, October 30, 2008 4:45 AM
Joined: 10/10/2008
Posts: 193


True Dr. M... keeping sights on the postive and knowing radio-treatment options do have a high success rate is helpful.  Thus, for me, I have never questioned my decision knowing, for me, I chose what would give me the highest success rate possible for my goal in having CK (ie: saving my hearing).  For me, that is what has helped me during the waiting game, as I had proof along the way that my hearing remained intact.

 

Barb, just read your last post and I know its been difficult for you.  You noted that yesterday wasn't a good day... and we all know that we have earned that right to have our "not so good" days.... and I'm hoping today is a better one for you.  I know you are trying to keep busy and try to stay as focused as you can during this time..... so my question to you is this.... what do you surround yourself that is positive on a daily basis?  Is it a hobby you enjoy doing? Spending time/chatting with someone that means the world to you?  How do you create your own positive fun on a daily basis?  Not trying to be nosy or step out of line.... but trying to find out what do you do for yourself that helps to you feel good.  If I'm being out of line, please say so.... no worries,

 

Phyl



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


paamboli
Posted: Monday, November 03, 2008 4:58 PM
Joined: 10/20/2008
Posts: 43


Phyl,
Briefly, I am also trying to cope with a long-standing diagnosis of PTSD, which seriously compromises everything.

Do you know of a top-notch and reasonably nice Neurologist in Boston for my cousin Geraldine? She does not have a tumor, but went backwards down the cellar stairs awhile back, and the concrete floor she landed on insulted her brain. She is having residuals, and has been treated by doctors who sound quite clumsy and uninformed.
Many thanks for your help,

paamboli

Russ Korte
Posted: Thursday, November 06, 2008 8:38 PM
Joined: 11/6/2008
Posts: 1


Hi; You're not alone Phyl. I know that doesn't help much. I've NF-2 and have been w/w on the second AN for 8 years for the common total deafness and disequilibrium which often accompanies NF-2. The spinal tumors are w/w also. P-doc said I may have PTSD with all the stressors in life also. Fibromyalgia has been Dx'd. Course, the P-doc may have his own set of issues! : ) First AN was resected at 27, disability at 47, and w/w another two ANs actually, since 2000. I think PTSD and related, may be more common to long term stress of chronic illness than credited.
Russell V. Korte M.S.H.S. ABONOCE
paamboli
Posted: Saturday, November 22, 2008 8:23 PM
Joined: 10/20/2008
Posts: 43


Russ,
Before you start labeling yourself with PTSD, I suggest that you check the DSM-1V.

paamboli

Sheryl
Posted: Sunday, November 23, 2008 11:01 AM
Joined: 10/11/2008
Posts: 31


Paamboli - check your private messages - I sent you a note.

Sheryl


calgirl
Posted: Thursday, November 27, 2008 9:46 AM
Joined: 11/25/2008
Posts: 8


I am having memory issues now.........but I do feel I don't allow myself down time and I put to much on my plate at once...........then out of frustration I get anxious and impatient. I am almost 4 years out and having more issues than when I started. There are sooooo many things that concern me and inhibit moving forward......is the AN growing again? Balance is awful..........must sit or lay....most of the time. CK is a marvelous invention and I am grateful for it.....I just need to know what's all this side issue stuff nobody told me. My friends and especially 3 sons don't get it.....I can't do it anymore...........thus here I sit on Thanksgiving alone......why??? For 40 years I created a "Martha Stewart" turkey day...........and fabulous Christmas event.......now I'm alone??? When my AN started to change my life I took children and grandchildren on incredible holiday trips.....creating memories for my "little darlin's"..........now what???? It's not that I'm sad just at odds with myself.....I'm a widow of 13 years....68....financially comfortable.....small family but closely knit for so long....large home to fit all comers.....love to cook .....and so much more.....being with my family is the most important element.......now nothing. This stupid dime size varmit has invaded my head......bingo!!! It ALL changed very quickly....Is this a pity party or what.........Not my style!!!! My eldest son is going to drive me to the mountains to hopefully catch some Fall color and have dinner at a lodge.......it WILL be a nice day! He is alone and volunteered to help me get out of this funk. To all of you out there with issues you don't understand and fear I wish for you at least 1 peaceful.....contented day. Let's come together in spirit and make it happen. Bless all of you for being here and sharing your trials......it is soooooo helpful.I'm truly not alone because of you.

calgirl........Judy in California

 


radsrus
Posted: Friday, November 28, 2008 4:54 AM
Joined: 10/10/2008
Posts: 4435


Have you seen anyone about vestibular therapy? Have you tried low dose Valium? Those things might help the balance issues. As for the rest...dinner in the mountains amid fall color must be at least SOMEWHAT helpful. Hope you had a nice day.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


calgirl
Posted: Friday, November 28, 2008 7:18 AM
Joined: 11/25/2008
Posts: 8


I had a wonderful day yesterday..........#2 son came over and was issistant that we come to his house.....it was great! I have tried vestibular therapy....no luck.....BUT the valium does help to calm things.....go figure. I am recovering from hysterectomy (4 weeks ago) fabulously except balance and the strain on my body to stay upright affects muscles and joints. I have to take the strain off by sitting/laying by afternoon......energy level wanes also.........so I try to be productive ...do necessary things by12-1.....then give it up. I'm learning! Positive input is definetly a plus and this site provides that..........thanks.........One blessing is......I am NOT going out on "Black Friday"
radsrus
Posted: Saturday, November 29, 2008 4:59 AM
Joined: 10/10/2008
Posts: 4435


One thing you might consider is water aerobics. Balance is less important in the water, and you can get exercise without stressing joints and so forth.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


pbp214
Posted: Saturday, November 29, 2008 7:28 AM
Joined: 10/10/2008
Posts: 193


Have honestly been contemplating water aerobics but... for those that have met me... the thought of me in a bathing suit.... eccch! 

 

Back to original discussion, I am hearing from many that are pursuing CK or other radio-treatments for their AN's and do not have the mental strength, post-treatment, to withstand the wait. I know of some that have gone into a depression, have spoken to their physicians (mostly PCP) that have been prescribed meds to "help curb the edge". I have shared with many that I speak about the emotional waiting game and the true mental strength required to go through the wait. My concern is that some have opted for a particular AN treatment (regardless if microsurgical or radio) and don't do well post treatment.  Knowing sites such as this one (and the ANA Patient Discussion Forum) truly do help as others that walk in our shoes truly do understand... yet, to speak to someone one-on-one (whether by phone or email), trying to help someone understand post-treatment potentials (or, if they are running into something), trying to help them understand that no decision for treatment option should be 2nd-guessed and that we have all done what is best for us and our particular situations (for those that had options.. .and even not) is not easy.

 

My concern is many do not have much mental strength to go through a wait... or to fully understand or grasp what may occur post-AN treatment (surgical or radio).  Many end up full of anger, depression, withdraw in life, etc.  I try to support everyone as best as I can (keeping in mind that I am also an AN patient along with many other ails in life, too).  Discussion forums such as this one, the ANA site and many others are extremely helpful (if someone does have a computer... I know of many older patients that don't). 

 

My ultimate question is... how can we get our treating physicians to work with their patients to help them understand and help guide them through the emotional aspect of this (or any other) journey?  I know of many compassionate dr's that truly do "hear" their patients and work with them regarding the emotional aspect (I could name 1 or 2 here! ).... but many don't.

 

Dr. M or Dr "J"..... do you all offer your patients appts with radio-social workers or such prior to treatment? Is there a radio-SW or such as part of your treatment teams that reach out to patients?  I know, in the case of BI, they do have a radio-SW as part of the team (I met with him before my CK). When the CK teams all get together for your "secret society" meetings ..... do you all discuss the emotional aspects of the treatments as well? Inquiring minds would love to know!

 

Thanks!  BTW, Go Sooners!

Phyl

 

(footnote: so thrilled that this thread is being read and participation is a such... hoping it helps folks.... glad to see it continues on. Thanks all for your very valuable inputs. Plus, I wanted to have fun with the "italics" option Phyl)


===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


calgirl
Posted: Saturday, November 29, 2008 8:45 AM
Joined: 11/25/2008
Posts: 8


Phyl.....what a great commentary....I'm almost 4 years out from CK....and it is still a waiting game for me.The side effects are often very difficult to deal with. This site is a lifesaver.I am recovering from having a hysterectomy and my balance is upside down.........so walking is both difficult and painful. Tinnitus....headache...sinus/allergy? pressure etc. My emotions/mood swings.....tears...frustrations.....questions/fears make me impatient etc. I don't want to be around me....let alone others. The fatigue issues are very depressing....I want to do stuff....enjoy family and friends. I've been doing some online Christmas shopping....attending financial matters via computer....puttering around the house etc. Nothing seems to distract me from worry/concerns about "HOW LONG" is this going to last. I'm 68...widow....mom...grandmother...very supportive friends...especially on this site and AN site (Where are ya Sandy?) and the reality is I have a really blessed life.....very grateful for my situation. I'm having a beautiful new home built in a gated community and should be well into the decorating thing but can't concentrate long enough to put ideas down. It took me 2 hours yesterday and 5 long distance calls to order equestrian gifts for my dear grandaughter.....now come on...I'm a business woman....relatively smart.....and I can't get the job done in about 5 minutes???? Cognitive thinking is huge issue right now. I really seem worse than ever......John Adler my doctor at Stanford says "tumour is dead....the rest due to aging process" give me a break here.....what about all the young people that have same issues? If the doctors don't have the answers I wish they would just say so....together perhaps we can find them or at least validate that they do exist and we all have a right to be angry at times but mostly fearful/frustrated and sad at where we find ourselves. Thanks sooooooo much for your always uplifting comments and suggestions.

calgirl.........Judy in California


calgirl
Posted: Saturday, November 29, 2008 9:17 AM
Joined: 11/25/2008
Posts: 8


Dr.M........I have tried water aerobics..........it was hysterical! I'm glad no one had it on tape. I happily joined the group in the pool....music started...stepup boxes in place....the very first step I fell off.....sunk....and couldn't get up. The motion of so many in the pool made it like a tsunami roared in. I laughed 'til I cried. I never gave the motion factor a thought when I went. I had better results in my own pool...except when my teenage grandchildren realized how they could "torture" Nanny by causing waves in the pool. Now as soon as I get permission to drive I am going back to the gym and do it when the pool is relatively empty.....it is to cold here to use my own.

Thanks for your reply.....you are a godsend.....and your caring input is appreciated.

calgirl..........Judy in California


radsrus
Posted: Saturday, November 29, 2008 9:37 AM
Joined: 10/10/2008
Posts: 4435


I personally think it is very dangerous to blame age for things after treatment, as much as I like and respect Dr. Adler. But you have been through a lot, and fatigue/deconditioning are to be expected. Any kind of exercise is likely to be helpful. THere are a number of activities you should avoid, however, such as unicycling, pogo stick jumping, etc.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


calgirl
Posted: Sunday, December 07, 2008 10:39 AM
Joined: 11/25/2008
Posts: 8


Hi all.....I am really suffering with sinus pressure due to infection....headache....vertigo.....fatigue...anxiety......thus fears/tears. Very emotional and impatient (not my nature) so stay pretty much to myself and try to entertain myself with audiobooks...music...piano etc. Not much movement. Pressures.....because they don't understand my circumstances.... from grown children are exasberating the whole picture. I am a widow and quite self sufficient so don't rely on them. If I could just jump up and do as I once did they would be fine. They see it as feeling sorry for myself (and perhaps I do at times) but it is not the reason for my "situation" Does anybody out there have these issues? I am recovering from hysterectomy 5 weeks ago so when the vertigo/nausea/ vomiting occur my surgery site hurts.......thus the need to be still.....then the rest follows.

I think I need input from fellow AN'ers...........Calgirl  (Judy)


Okie Sandy
Posted: Wednesday, December 10, 2008 9:25 AM
Joined: 12/10/2008
Posts: 1


"What does age got to do with it"  I don't stress anymore when it comes time for my MRI. I feel better than before CK. My balance is better and the only thing that throws it off is sinus, cold or 3 margaritas. Many things I thought might be from the CK or the AN are not related. By the way Calgirl, my 83 year old friend is going to show his horse again this year. He missed half a season because he had surgery for a abdominal arota last year. He says he has plenty of time to be old and a whole lot of time to be dead....I kind of like his way of thinking.


pbp214
Posted: Wednesday, December 10, 2008 1:46 PM
Joined: 10/10/2008
Posts: 193


Sandy, you rawk! Honestly, you just rawk and have been so missed! thank you for sharing this... been feeling "old" myself lately but your friend's words are the ones to live by... thank you!

 

Judy, Phyl here. My bad for not logging on sooner to help the cause. I've been a bit under the weather but know that I am doing fine and hanging tough in my usual fashion. I know you've had a truly tough time lately (like myself and many others)... so, the key for me is... how do we hang tough?  I allow myself the "not so good" days.... I don't wallow in it but I allow them. Heck, I've earned them (just like you and so many others). But, I also do all I can do to put the positive twist. Heck, I don't care if it's shopping, a bubble bath, OkieSandy's 3 margaritas (or if Dr. M is buying, a nice glass of merlot.....) or whatever.

 

Yesterday, I was in the grocery store... feeling like crap. There is a mentally-challenged young man, helping to bag groceries.. talking about the holidays... and how Christmas is only one day per year. I looked at him with a grin and shared with him "every single day is Christmas if you wake up and make it a very special day". He smiled......   I know you can find something... even just a wee bit... to help make each day a Christmas (or your favorite holiday).  Even when we feel like crap, need time to re-muster the old (ooops, there's that word again) mental strength.... and pick ourselves up by the boot straps and remind ourselves that as long as we are here, we are functioning as best as we can... each day is a special day as long as we make it that way.

 

Huggles.... you know it... many huggles to you! Hang tough!

xo

Phyl



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


calgirl
Posted: Wednesday, December 10, 2008 4:51 PM
Joined: 11/25/2008
Posts: 8



calgirl
Posted: Wednesday, December 10, 2008 5:03 PM
Joined: 11/25/2008
Posts: 8


Looks like everyone is getting the hang of things.....starting to get easier to navigate.......I can't find cognitive/emotional forum though.....HELP!!!!! Things are looking up....feeling better.....shopping done....new house ready very soon....going to do some baking......house is decorated....music playing. Thanks fellow AN'ers for gracious support and that includes you Dr. M. I hope we all enjoy our holidays in our own traditions.......

calgirl...........Judy


radsrus
Posted: Wednesday, December 10, 2008 5:43 PM
Joined: 10/10/2008
Posts: 4435


Does this mean I am an honorary AN'er?


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


pbp214
Posted: Thursday, December 11, 2008 4:46 AM
Joined: 10/10/2008
Posts: 193


Dr. M... the 3-5 days you lay under the CK machine and feel its doings (gawd forbid), I am SOOOO going to make you an honorary AN'er   Or... for just being you... well, heck... ok....

 

*takes septor and taps both dr's shoulders*

 

Ok, you now be an honorary AN'er!

 

Judy, the "Cognitive/Behavior" forum is on the ANA website:

 

www.anausa.org/forum

 

I put this thread here (also in conjunction with a thread there) as it seems to be a tough point for many that go through radiation treatments. Many have a difficult time going through the waiting game and since this is for radiation treatments for AN's (this particular forum), I thought I'd start this here to try to help others... just as many have been there for me during the wait.

 

Hang in there Judy! We're here to help.

Phyl


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1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


 

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