How is everyone?

torrance

update....

Happy Holidays!

 

I am sure there are a lot of us that just couldn't get on this site for a long time, it seems things are better and a little bit faster now, YIPPEEE!

 

It has been great catching up with everyone on this thread.  I know when I left it was a little awkward with the talk about the passing of Joanne.  That is my name to and is was just a tad bit weird to read.

 

So if you have a minute and want to catch up, here goes!  Be ready for some chuckles, I sure did going through some of this.  Christmas was the two year anniversary of my diagnosis.  So far I am NED.  I am suffering with chronic radiation proctitis.  Did anyone have issues with this and did you Dr. recommend the wonderful enema that you are supposed to administer at bedtime and "hold" all night.  That was a so NOT gonna work!  Urgency is still an issue, however getting better.  Still pain associated with the proctitis.  When I go for my regualr anoscope the Dr. has finally committed to memory to ask the MA for the ped scope!  YEAH for that option, sad to think that there is a need for that though.

I am still going to pelvic PT once a week, one infection and several tears along the way and I am almost through.  Who was it that said they use there dilator everyday at shower time?  And how do you even manage that?  If you can imagine me sitting on the floor, leaned up against the wall to use my "inflatable dialtor", it really is kinda funny, especially since I have short arms.  I'd say it was a two man job, but that might sound kinky!

Prior to treatment I had issue with kneecap tracking issues.  They seem to have gotten worse since radiation, as has everything that stems from the hip region.  So I go to Orthopeadics for a consult.  He says that I am very "touch point" sensitive.  Not sure what that means, but when he manipulated my knee caps, boy did it hurt.  So a referral to the cast room to get knee braces and then start PT to strengthen knees.  Went to cast room and was issued my braces with instructions on how to wear etc.  He was in a hurry to leave for lunch so we didn't try them on, size lg.  (I've gained over 40 lbs since end of treatment as a side effect of anit-depressants and lack of ablility to do any cardio with the hip and knee issues, more on the depression later)  I've NEVER been this large before.  Ok, next morning I get up ready to get started on this new phase of PT.  I try and put the braces on....NO WAY!  It reminded my of when I was young and watching my mom struggle/wiggle into her girdle!  Guess they call them shapewear these days!  So no way were these pupples gonna fit over my thigh.  Great, now I have to go back and ask for a bigger size.  Well since I have to be at the hospital for pelvic PT at least if won't be incovenient.  I go back to the cast room and hand the boxes to the "fitter" and quietly request a larger size.  He replies he didn't think they had them any larger.  ( As I am shrinking in humiliation wondering, surely I am not the largest thighed person around, surely there are at least men larger than me.....) the fitter turns around and shouts back into the cast room, "do we have any extra large knee braces?"  I could have died on the spot!

Ok, time to try these new pups on.  Eureka, we have a fit.  Yep, just like my mom, wiggle, struggle and at last in place!  Mind you I have a pinched nerve in my left elbow that make gripping painful and I have no real strength.  I made it to the end of the day, time to take them off, they have now become one with my legs.  Remember the short arm syndrome and the pinched nerve, and oh yeah the incredibly tight hamstrings and calves, well I pulled a ligament in the back of my knee just trying to take them off!  Again, a "two man" job!  Another case where the treatment may be worse than the ailment!  So now when it is time to take them off,  I have to lay on floor and have my husband pull them off, really is quite a funny sight!  I hope he doesn't lose his grip pulling, not sure where he'd end up!

Now it's time for knee PT....Oh joy!  The first visit was assessment day.  The PT observed my walk, checked my strength etc etc.  Time to check the toneness of the muscles, she had me lay on my side and she touched the muscle/tendon/ligament, not sure what it was on the outside of my knee.  The pain was at least a 12+ so of course my reflex was to jerk my knee up.  She promptly states in a very matter of fact tone, "I'm not hurting you!"  I put my leg back down and she did it again and I jerked my leg again and she said it again.  I told her I know what you are doing is not "injuring" me, but it is "hurting" me and she thought I was crazy.  I think she thought I was anticipating pain or something.  Now I am a pretty cooperative patient, anxious to learn and to please, but this gal just rubs me the wrong way, figuratively and literally!  A couple visit later she informs me that she thinks that ultrasound therapy for the muscles may be helpful but thinks that it may be contraindicated for cancer patients.  Apparently the theory, never proven, but for precautionary reason they don't use on cancer patients in the region where they received treatment.  The thought is the "vibrations" could rattled lose a cancer cell that may be in the area.  I told her I would check with my rad onc to see what he thought, he is the expert.  I consult with him and he assures me it would be fine.  My knees were out of the zone and I was also NED, no problems.  I had his blessings.  I share the info with my PT and she says in her "tone" it didn't matter what he thought that it was up to her dept to make that decesion!  Geez, then get on the ball and lets find out lady.  I am trying to be compliant for the six weeks of therapy before I go back to the ortho doc.  Amazing how much I am learning about things I didn't even know existed!  Nor how many back rooms there are at my medical center!

Depression is getting much better.  Still dealing with some major upsetting issues with other things, seeing my counselor was a godsend.  Tapering off the anti-depressants now.  Down to 50mg every other day.  Nerve wracking worring about being off of them, but so far so good.  I would not hesitate going back on them if I felt the need.

Just got my flu shot this week.  My hubby has been sick going on two weeks.  Finally getting better and I am taking my coldeze regularly.  Oh, had my two year follow up with the med onc and have been excused to yearly visit now!  Yeah me.  Did my blood work prior to the visit with him and have developed an allergy to Alcohol Preps!  What the heck?

Anyway, so much for my nutshell wrap up!  Love you all and so good to hear about everyone and congratulations to all those finishing treatment and welcome to those who have found the need for this most wonderful selfless group of people.

Joanne

mp327

torrance said:

update....

Happy Holidays!

 

I am sure there are a lot of us that just couldn't get on this site for a long time, it seems things are better and a little bit faster now, YIPPEEE!

 

It has been great catching up with everyone on this thread.  I know when I left it was a little awkward with the talk about the passing of Joanne.  That is my name to and is was just a tad bit weird to read.

 

So if you have a minute and want to catch up, here goes!  Be ready for some chuckles, I sure did going through some of this.  Christmas was the two year anniversary of my diagnosis.  So far I am NED.  I am suffering with chronic radiation proctitis.  Did anyone have issues with this and did you Dr. recommend the wonderful enema that you are supposed to administer at bedtime and "hold" all night.  That was a so NOT gonna work!  Urgency is still an issue, however getting better.  Still pain associated with the proctitis.  When I go for my regualr anoscope the Dr. has finally committed to memory to ask the MA for the ped scope!  YEAH for that option, sad to think that there is a need for that though.

I am still going to pelvic PT once a week, one infection and several tears along the way and I am almost through.  Who was it that said they use there dilator everyday at shower time?  And how do you even manage that?  If you can imagine me sitting on the floor, leaned up against the wall to use my "inflatable dialtor", it really is kinda funny, especially since I have short arms.  I'd say it was a two man job, but that might sound kinky!

Prior to treatment I had issue with kneecap tracking issues.  They seem to have gotten worse since radiation, as has everything that stems from the hip region.  So I go to Orthopeadics for a consult.  He says that I am very "touch point" sensitive.  Not sure what that means, but when he manipulated my knee caps, boy did it hurt.  So a referral to the cast room to get knee braces and then start PT to strengthen knees.  Went to cast room and was issued my braces with instructions on how to wear etc.  He was in a hurry to leave for lunch so we didn't try them on, size lg.  (I've gained over 40 lbs since end of treatment as a side effect of anit-depressants and lack of ablility to do any cardio with the hip and knee issues, more on the depression later)  I've NEVER been this large before.  Ok, next morning I get up ready to get started on this new phase of PT.  I try and put the braces on....NO WAY!  It reminded my of when I was young and watching my mom struggle/wiggle into her girdle!  Guess they call them shapewear these days!  So no way were these pupples gonna fit over my thigh.  Great, now I have to go back and ask for a bigger size.  Well since I have to be at the hospital for pelvic PT at least if won't be incovenient.  I go back to the cast room and hand the boxes to the "fitter" and quietly request a larger size.  He replies he didn't think they had them any larger.  ( As I am shrinking in humiliation wondering, surely I am not the largest thighed person around, surely there are at least men larger than me.....) the fitter turns around and shouts back into the cast room, "do we have any extra large knee braces?"  I could have died on the spot!

Ok, time to try these new pups on.  Eureka, we have a fit.  Yep, just like my mom, wiggle, struggle and at last in place!  Mind you I have a pinched nerve in my left elbow that make gripping painful and I have no real strength.  I made it to the end of the day, time to take them off, they have now become one with my legs.  Remember the short arm syndrome and the pinched nerve, and oh yeah the incredibly tight hamstrings and calves, well I pulled a ligament in the back of my knee just trying to take them off!  Again, a "two man" job!  Another case where the treatment may be worse than the ailment!  So now when it is time to take them off,  I have to lay on floor and have my husband pull them off, really is quite a funny sight!  I hope he doesn't lose his grip pulling, not sure where he'd end up!

Now it's time for knee PT....Oh joy!  The first visit was assessment day.  The PT observed my walk, checked my strength etc etc.  Time to check the toneness of the muscles, she had me lay on my side and she touched the muscle/tendon/ligament, not sure what it was on the outside of my knee.  The pain was at least a 12+ so of course my reflex was to jerk my knee up.  She promptly states in a very matter of fact tone, "I'm not hurting you!"  I put my leg back down and she did it again and I jerked my leg again and she said it again.  I told her I know what you are doing is not "injuring" me, but it is "hurting" me and she thought I was crazy.  I think she thought I was anticipating pain or something.  Now I am a pretty cooperative patient, anxious to learn and to please, but this gal just rubs me the wrong way, figuratively and literally!  A couple visit later she informs me that she thinks that ultrasound therapy for the muscles may be helpful but thinks that it may be contraindicated for cancer patients.  Apparently the theory, never proven, but for precautionary reason they don't use on cancer patients in the region where they received treatment.  The thought is the "vibrations" could rattled lose a cancer cell that may be in the area.  I told her I would check with my rad onc to see what he thought, he is the expert.  I consult with him and he assures me it would be fine.  My knees were out of the zone and I was also NED, no problems.  I had his blessings.  I share the info with my PT and she says in her "tone" it didn't matter what he thought that it was up to her dept to make that decesion!  Geez, then get on the ball and lets find out lady.  I am trying to be compliant for the six weeks of therapy before I go back to the ortho doc.  Amazing how much I am learning about things I didn't even know existed!  Nor how many back rooms there are at my medical center!

Depression is getting much better.  Still dealing with some major upsetting issues with other things, seeing my counselor was a godsend.  Tapering off the anti-depressants now.  Down to 50mg every other day.  Nerve wracking worring about being off of them, but so far so good.  I would not hesitate going back on them if I felt the need.

Just got my flu shot this week.  My hubby has been sick going on two weeks.  Finally getting better and I am taking my coldeze regularly.  Oh, had my two year follow up with the med onc and have been excused to yearly visit now!  Yeah me.  Did my blood work prior to the visit with him and have developed an allergy to Alcohol Preps!  What the heck?

Anyway, so much for my nutshell wrap up!  Love you all and so good to hear about everyone and congratulations to all those finishing treatment and welcome to those who have found the need for this most wonderful selfless group of people.

Joanne

Hi Joanne!

Thanks for the update!  Wow, you've been dealing with a lot of issues, and yes, I did chuckle a time or two in reading your post.  It is me who uses the dilator in the shower--and I still do.  I have the hard plastic kind and just hold it in with one hand while I shower with the other hand.  I've actually gotten quite good at it and can even shave my legs!  lol!  I don't know if I would call it talent or not, but anyway, it seems to work for me.

 

I have had knee tracking issues for years.  I'm sorry you have gotten assigned to a physical therapist who needs to learn some bedside manner (or I guess technically it would be "plinth-side manner" in physical therapy).  First of all, ask her if the McConnell taping technique would help you.  I used to work in a P.T. clinic and this type of taping was used on me when I was doing a century bike ride (100 miles).  It pulls your knee back into alignment and helped me a lot.  I still have achy knees due to osteoarthritis and since I still run, I was looking for something to help ease the pain.  I purchased 2 Tommie Copper knee sleeves and they have worked wonders for my knees.  They might not help with your issues, but I find the compression they put on my knees and calves to be very helpful.  They're not very expensive, so you might give them a try.

 

I highly recommend getting that flu shot!  I, like your husband, have been sick for 2 weeks now and it has not been a good time!  Thanks for updating us and I hope that the proctitis symptoms ease up for you, along with everything else! 

torrance

mp327 said:

Hi Joanne!

Thanks for the update!  Wow, you've been dealing with a lot of issues, and yes, I did chuckle a time or two in reading your post.  It is me who uses the dilator in the shower--and I still do.  I have the hard plastic kind and just hold it in with one hand while I shower with the other hand.  I've actually gotten quite good at it and can even shave my legs!  lol!  I don't know if I would call it talent or not, but anyway, it seems to work for me.

 

I have had knee tracking issues for years.  I'm sorry you have gotten assigned to a physical therapist who needs to learn some bedside manner (or I guess technically it would be "plinth-side manner" in physical therapy).  First of all, ask her if the McConnell taping technique would help you.  I used to work in a P.T. clinic and this type of taping was used on me when I was doing a century bike ride (100 miles).  It pulls your knee back into alignment and helped me a lot.  I still have achy knees due to osteoarthritis and since I still run, I was looking for something to help ease the pain.  I purchased 2 Tommie Copper knee sleeves and they have worked wonders for my knees.  They might not help with your issues, but I find the compression they put on my knees and calves to be very helpful.  They're not very expensive, so you might give them a try.

 

I highly recommend getting that flu shot!  I, like your husband, have been sick for 2 weeks now and it has not been a good time!  Thanks for updating us and I hope that the proctitis symptoms ease up for you, along with everything else! 

hhmmm...

Ok, the therapist did try the tape on one knee.  The tape lasted about two and a half days.  I really couldn't tell the difference with.  Is it necessary to wear the tape for quite awhile while your knee is strengthened to keep in place with activity?  After the one try she asked if it made a difference and I told her I couldn't feel a difference, however it was far more comfortable and practical compared to the brace.  No tape again and why would she only tape the one knee and not both?  I have one more appt with her and then back to the ortho dr.  If he wants more therapy I am gonna ask for a different therapist!  I want to get moving...this weight is weighing on me!

 

Joanne

mp327

torrance said:

hhmmm...

Ok, the therapist did try the tape on one knee.  The tape lasted about two and a half days.  I really couldn't tell the difference with.  Is it necessary to wear the tape for quite awhile while your knee is strengthened to keep in place with activity?  After the one try she asked if it made a difference and I told her I couldn't feel a difference, however it was far more comfortable and practical compared to the brace.  No tape again and why would she only tape the one knee and not both?  I have one more appt with her and then back to the ortho dr.  If he wants more therapy I am gonna ask for a different therapist!  I want to get moving...this weight is weighing on me!

 

Joanne

Joanne

I seem to remember getting immediate relief from my knee pain after the taping was done.  Yes, I would definitely ask for a different therapist.

Cheyenne

Follow-up

I am still doing great!  I finished treatment 6/11/12 and went on a week long vacation with the family on 6/22.  It was wonderful!  In October we went out to Arizona and California.  We did a lot of hiking in Sedona.  (The longest hike was 5 miles round trip.)  We are getting ready to go back to Florida in a couple of weeks.

I had my first post treatment CT scan on July 3 and it was clean.  I just had my second scan this past Thursday so I haven't heard about that one yet.  Anyway, I feel great and don't seem to be suffering from any negative aftermath.  I did have that "sense of urgency" early on after the treatment.  I found that I just needed to relax and take my time instead of getting into a panic state and running.  That only made it worse.

I'm glad to know that all of you are doing well too!

mp327

Cheyenne said:

Follow-up

I am still doing great!  I finished treatment 6/11/12 and went on a week long vacation with the family on 6/22.  It was wonderful!  In October we went out to Arizona and California.  We did a lot of hiking in Sedona.  (The longest hike was 5 miles round trip.)  We are getting ready to go back to Florida in a couple of weeks.

I had my first post treatment CT scan on July 3 and it was clean.  I just had my second scan this past Thursday so I haven't heard about that one yet.  Anyway, I feel great and don't seem to be suffering from any negative aftermath.  I did have that "sense of urgency" early on after the treatment.  I found that I just needed to relax and take my time instead of getting into a panic state and running.  That only made it worse.

I'm glad to know that all of you are doing well too!

Hi Cheyenne!

I'm so glad you are doing well!  I'm sure you will get all good news on your recent scan too.  The vacations sound wonderful and well-deserved.  Have a great trip to Florida!