Anyone WW or Post CyberKnife on Short-Term Disability?

[Bobette]

Hello All,

I am two weeks post-CyberKnife.  I have worked since diagnosis and even worked the days I had my CyberKnife treatment, and every day except one since then. 

Now I know I am not functioning 100%, I think I am doing a pretty good job.  The paralegal I work with mentioned to me that I am dropping the ball quite a bit lately and that "maybe you should take some time off or go on disability."  She basically has been very insensitive to me during this whole AN ordeal. 

I just might take her up on her offer.  I left a message with Dr. Chang today to find out if it is a possibility. 

Is anyone that hasn't had surgery on any form of leave from work?

Thank you for any insight you can give me.

Bobette

[MaryEBS]

Hi Bobette,

I am sorry to hear about your insensitive paralegal.  Support in the workplace is very important to your recovery.  I don't think I would have been able to work right away without the support of very dear co-workers and a sensitive boss.  You have to decide what is best for you... all I can tell you is that I am glad I went back to work right away and hung in there ... the first few weeks were bumpy ones but things have gradually improved to the point that I am feeling pretty confident that I am almost back to my old self.  I do still have the random thought sometimes about why I am pushing myself so hard when my company does offer leave and even salary continuation as a benefit... but then I remember that I don't want to give in.  I don't want to stay at home and dwell on this... I have an AN but I refuse to let it have me.

Wishing you the best while you explore your options.

Mary

[mandy721]

There are two people in our local support group who are out on disability following GK and CK treatment.  They both went back to work after their treatment,but found that they were not able to work at the level they were at prior to surgery. Both of them had very demanding, detail oriented jobs. 

[ppearl214]

Hi Bobette

As your homework has shown prior to your CK (or any form of AN treatment, for that matter!).... this is the timeframe that fatigue or other issues could crop up (not common but not unusual). 

For me, I found the first month or so, post CK, that the fatigue was a little bit tough.  My boss was considerate enough to let me go back to work F/T the week after my treatment but if I wasn't feeling up to par, I was set up to work from home and he would let me go home to finish my work day (which, of course, I would log on and do my work). Now, I fully understand not everyone here is set up to telecommute. 

I don't know what kind of sick/vacation days you have available right now to be able to use.  If you have exhausted sick/vacation days but feel that you do need more time, your co-workers offer of "short term disability" is really not unreasonable (their delivery may have stunk but the intention may have been good).  You know what your body is feeling right now and based on how you feel, maybe worth considering.  I only know of a very very small handful here on the forums that have run into issues post-CK but for the most part, most radiation patients (CK,GK, Trilogy, FSR, etc) do very well... and some do report enhanced fatigue, ear fullness, balance issues, etc post radio. 

Please listen to your body and gut... and maybe, in this case, your coworker, if issues are going on.  VERY rare for anyone to go out on short term disability (or perm disability, for that matter) from AN radiation treatments (again, some have occurred but rare)...... you know what your body is telling you....

Hang tough!
Phyl

[pjb]

Thanks Mandy just shows that not everyone is the same for whatever reason Bobette do what you and your body feel we all recover differently and that is okay don't let it get you down that your yours is a little different than others just might take a little longer we all have to learn to be the new "US".

Best Wishes,

[Bobette]

Thank you everyone for your replies.

I work at a law firm.  We are extremely busy right now.  We just switched law firms in March.  I found out about my AN my second day on the new job.  I have absolutely no vacation or sick leave accrued.  (If I had found out about my AN just a couple days prior I would not have left my previous place of employment.)

Without airing all of the psycho-drama at work, it boils down to this.  We are working long hours every day and usually without breaks.  I have definitely not been 100% and the paralegal is happy to point that out (not only to me but to the two attorneys I work with).  She has worked with the big boss for 22 years, me 2.  I am really worried that I am going to somehow lose this new job.  Because of the worry, I am not sleeping well at night.  I can fall asleep for about 4 hours before I wake up and start worrying.  Am I disabled?  No.  Can I do this job right now?  Yes, but not at the pace we are currently at and not as well as I used to and not as well as they want me to.

Here is something funny (well not really) - My associate said to me, "Well its not like you have a cast on or are on crutches so that we can remember you have medical issues going on."  Oy!

Dr. Chang's office says do what you need to do for your body to heal.  It is a dilemma for me.  I don't want to do anything to jeopardize this job, but I do need to get some rest and get back on my A game. 

I'm definitely not going to make a rash decision, I am going to take several more days to figure things out. 

Thanks for listening everyone and your input.

Bobette

[PaulW]

Wow Bobette I am hearing you..
I went back to work pretty much straight away.
I sort of had to. I have my own business, and at the time of diagnosis I had 35 staff, and the business was only 3 years old.

About 2 years prior to diagnosis I sensed that something was wrong with me. Mainly fatigue and not being as mentally sharp.
I underwent the usual blood tests and they found nothing. I thought I was growing old.... 46
When I was diagnosed, they also discovered I had lost about 50% of my vestibular function on the AN side.

I was also having problems with typing, getting words and letters jumbled. It also affected my speech.
General conversation was fine, but if I had to articulate a complicated concept, the words somehow didn't flow they way they used to.
For many jobs, maybe I would not have even noticed there was anything wrong with me.
But I needed to be on my "A" Game and I knew that I wasn't.

Roll on Cyberknife... and the typing, talking, concentration, fatigue, all got worse... as well as hearing balance tinnitus..
So all of that sounds maybe a little melodramatic. Did it stop me from living life... no, I still did everything, it just became more difficult.

So what causes these things?

The most likely cause is the general confusion one gets when your vestibular system is not quite right.

http://vestibular.org/understanding-vestibular-disorder/symptoms

"Cognitive
Difficulty concentrating and paying attention; easily distracted
Forgetfulness and short-term memory lapses
Confusion, disorientation, difficulty comprehending directions or instructions
Difficulty following speakers in conversations, meetings, etc., especially when there is background noise or movement
Mental and/or physical fatigue out of proportion to activity"  

The first month after Cyberknife, the symptoms were at their worst.
I had the "wonky head" sensation both pre and post treatment.
Slowly ever so slowly things got better, much better..

So how did all this affect me at work.
I have to say I was pretty hopeless at work. If I had worked for somebody I might have resigned, I knew within my heart I was not doing my job properly.. Fortunately I could delegate, and delegate I did, which masked so many of my shortcomings.

Things that may help...
As my balance was out, I was prescribed antinausea medication. But I did not want to take these things long term.
I swapped it for Ginger Root Extract which is a proven natural alternative for travel sickness.

I found that when taken at the maximum recommended dose it did improve my concentration and reduce the "Wonky Head"

Exercise...
I guess the temptation is that if we feel tired we should rest, and recover...

As I attribute my problems to how my balance nerve is reacting to the tumour, the sooner I could train my brain to the changes in the balance nerve the better off I'd figure I would be..

There are vestibular exercises which many people swear by.
Personally I found walking for an hour a day for more therapeutic, than the intensive vestibular excercises.

Getting up, getting moving, and wobbling that "bobble head" was the best for me.
Straight after the walk I would feel very tired, so suggest that its done at the end of the day..

Anyway thats what worked for me.

Two years down the track, and If I spend too much time at my desk I get mild balance issues..
If I get up and get moving, train my balance system, with a 20 minute walk every day I feel just fine.
In fact I feel better today than I did 2 years before treatment.
If I stop that regime the tiredness and balance problems still come back.

You have only just finished Cyberknife I am not surprised you are finding work difficult.
Eat well, rest well, and excercise well, give ginger a try, and hopefully that will speed up your healing and your ability to function better.

On the work front hopefully you can tactfully remind them that you have just had "Brain Surgery" and that you have had a brain tumour. Tell them that others you know have made a full recovery, and that you are working on it.

If you can stall them for about a month hopefully your performance will improve significantly in that time..

On another note be on the look out for the Corporate Psychopath... around 1 in 10 managers have this tendancy in varying degrees and can make your life hell.. If this is part of your problem, dont be afraid to move on.
If there is psychodrama in the workplace its often caused by a psychopath (a person who can not feel empathy)

http://www.abc.net.au/science/broadband/catalyst/asx/psychopaths_hi.asx

http://www.mckenziefriends.com.au/index2.php?option=com_content&do_pdf=1&id=27

Good luck and please tell us how you get on...

[Bobette]

Thank you so much everyone for replying, I sincerely appreciate it.

Well, I have decided not to take any kind of leave, although I am taking a 5 day weekend next week to rest. 

I finally did take this to human resources.  They were very sympathetic.  The HR manager told me she has close family members who have had radiation treatments and suffered extreme tiredness for a period of time.  She called me back to her office later in that day and said that she had spoken with my partner and that he told her I am doing a terrific job and had not noticed any difference in my performance.  This itself was a huge encouragement to me.  (She also offered to let me work a 20 hr a week schedule so I could still keep my benefits). 

As for my paralegal, I am taking her to lunch next Wednesday to speak with her offsite face-to-face about our difficulties. 

With working all these long hours I haven't been doing much to further my overall wellness.  I haven't gone on a walk since pre-treatment and all of my eating has been on the run. 

My plan of action is:  work my full day, but no overtime; get at least a 20 minute walk in every day; take the time to sit and eat healthy meals; find a way to quiet this racing mind of mine to get more sleep -- work fervently on my health instead of this job! 

Thank you for all your encouragement. 

Bobette

[lrobie]

I'm so glad to hear things are working out for you and you have the support from HR.  Having the AN and getting it treated is stressful enough.  You don't need to add more to it.

Lisa

[millie]

I am glad you are getting the support you deserve.  Thank God human resources and your co-workers were compassionate. And what about that partner!  You are doing a terrific job!   The other gal probably has no idea what an an is.  I hope lunch improves things once and for all.
Prayers.
Millie

[sunfish]

I went back to work about 4 days post-CK, but it was a bit too much after a couple days, so I took the rest of that week off too.  About 3 months post-CK I started having tons of wonky head/disequilibrium.  I was very depressed and thought I would lose my job (psychologist in a federal prison).  Then I decided, "The heck with it!  I'll just wait until they fire me, or say I'm doing such a lousy job they demand I go on disability!"  I felt better, was no longer depressed and . . . guess what? . . . Nobody ever said a thing, I just kept on working, my head gradually cleared up, and I'm still working!

I had lots of symptoms until about two years post-CK.  This is not the norm.  However, the good news is that my case shows things DO improve, even a couple years out.

[millie]

Wonderful news, Sunfish!  I have been reading that Gamma and CK also have their after effects, and I am glad you are seeing the light at the end of the tunnel.