distancerunner

distancerunner's Recent CancerCompass Activity

• distancerunner has replied to a post on the message board

  I neither want or expect family or friends to come around. I don't want any sympathy from anybody...you find sympathy between  shit and syphlis in the dictionary. After I am finally through with the slow torture of watching my soul mate slowly, very, very, very slowly die from this disease, I hopefully won't be expected to walk around with my hat in my hand making an appearance at anybody elses trage...

  July 27 at 12:55 AM view post

• distancerunner has replied to a post on the message board

  the therapy dosen't do my wife any good..but it keeps her engaged other than her husband trying to engage her. Sometimes, I feel guilty about bringing the home health care folks in, but when strangers come to the door for her, I sense that she feels engaged and somehow I can sense that it is a positive morale builder.. I think any victim of this dsease can probably use physical and occupational..maybe not sppech.. ...

  July 26 at 9:29 PM view post

• distancerunner has replied to a post on the message board

  Similar to my wifes experience with corpus collosum involvement whether by tumor infiltration or treatment effect is up to debate by 2 different NO's but both say that something that sounds like "wellgerian degeneration"??? or something like that causes all the same symptoms that you describe.....sorry for the hashing up of the term used but I have no access to her records to confirm... My wife can sit for hours an...

  July 26 at 5:36 PM view post

• distancerunner has replied to a post on the message board

  Make sure you tell your NO that AT ALL COSTS  you want to avoid the damage that can be done by the radiation. My wife was DESTROYED by the radiation and it became a pointless point that the tumor had been successfully resected...   If cognition is damaged by the treatment effects, nothing else matters. That is the way if I could do it all over, I would advise the treatment team. 

  July 25 at 2:05 PM view post

• distancerunner has replied to a post on the message board

  My wifes NO told me this morning that the reason my wife is still alive right now is because of the avastin and CCNU. We had discussed pulling the plug, but the NO told me that if I do, the tumor will grow very rapidly and that if we continue with avastin and CCNU, the tumor will grow, but it may give her another year.. Of course, with my wifes cognitive abilities gone, I am doing her no favors by continuing treatm...

  July 25 at 3:14 AM view post

• distancerunner has replied to a post on the message board

  It would be OK with me. Where was this guy when i needed him? At this point and looking over on the couch, where sits wrapped up in a blanket, this vaguely recognizable zombie that used to be my loving wife.. if this UCD guy came up to me and said "hey, I have this experimental drug that will guarantee that your wife will be cognizant once again for 1 hour only, that;s all the time that sh...

  July 22 at 3:47 PM view post

• distancerunner has replied to a post on the message board

  "The radiation effects we are seeing are relatively minor inconveniences compared to what some other people are dealing with. But having been partners for 30 years I do notice them and can see them getting worse as I watch the MRI images show more radiation damage to her brain. I can only hope it stops before things get much worse. Her symtoms manifest as slower walking, difficulty in recovering if she gets off balan...

  July 19 at 9:21 PM view post

• distancerunner has replied to a post on the message board

  My wifes leg twitches from time to time as well..I do my best to keep my wife awake during the day. I am not all that successful, however one thing that does work is to do something right before you go to bed.. I like to take my wife for a ride, very short, half hour or so, out in the desert. I noticed that she likes to look at the sun going down behind the mountains and she likes to watch airplanes.. two sort of ...

  July 17 at 3:01 PM view post

• distancerunner has replied to a post on the message board

  Going back to the sleep part..for the CAREGIVER. That is a game changer for me as to whether or not I could actually turn my back on my wife and condemn her to one of those hell hole nursing homes... She almost went. I went 3 days without sleep just trying to get her back into bed all night long, then for whatever reason, whether it is progression of the "treatment" effect or disease, she suddenly started sleeping...

  July 16 at 6:01 PM view post

• distancerunner has replied to a post on the message board

  I guess that you can go through the archives about my wife and read. Hers was left frontal lobe as well. I found out that the devastation caused by the treatment effects are worse than the cancer... In the case of my wife it was much, much, much worse than death. The funny thing is..all the white coated fancy doctors who used to know her first name  suddenly dissappeared after the devastation set in.. they j...

  July 16 at 3:04 AM view post