HealingWell
Search Close Search
☰

Back in Oncology Rehab again

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/5/2013 2:09 PM (GMT 0)
Yesterday was my  first  day back at Oncology Rehab.  It was like a homecoming event, was very well remembered and received by all the staff.  Unfortunately, was already in some pretty serious hurt at that time of the afternoon.  Normally, I have mid morning appointments on purpose, while I am generally feeling better.

Most of the first session was consumed being re-accessed.  This includes various tests, range of motion, endurance, strength, agility, etc.  Was glad to have the very same therapist that I had for the previous 25 months, but she was a bit shocked at how the tests came out, and how I looked in general.

She compared the new data to where I was on my last session in early June, and said I had declined 30% across the board, with lots more atrophy in the right side, and even some in the left side (that part was unusual for me, as my left side is my strong side).  She said we were going to have to start at square one all over again.

I brought her up to date with what my doctor wanted included this time, along with the normal routines I do.  Not all of it is going to happen.  They no longer offer acupuncture, said that overall, most patients reported no improvement, and not enough patients opted to use or try it.  As far as hydro therapy, she said outright, that my Urostomy would prevent me from using their pool, but she would check to see if they could make an exception for me.  Not for the reasons I have mentioned before, but for simple sanitary reasons (like what if it leaked or came loose).  Massage therapy - they still do and I qualify for free sessions.  Told her my reservation about that, which is on days when I am hurting a lot, my skin is so sensitive to touch - it makes me cringe to think of anyone touching or rubbing on me.

However, I am going to try it.  At least once, perhaps more.  My next appointment is next Wednesday, and after the normal hour session, I will be having a one-hour massage session.  After that, I can have two free sessions a month of 30 minutes a piece.

So there's a lot of hard work ahead, now that I am back in the program.  In the end, seems the Rehab folks had it right - and that why we never made any forward progress - what they were doing was at least helping me from going downhill further.  Even my own doctor saw the wisdom in that, after seeing me on my last visit.

So I will go faithfully, indefinite period (probably long term again), and see what can be done to make up for what I have lost, before things get even worse.  Feel like it was for the best in reversing course about stopping the PT.  At least I had a small break from it.

David

 

Posted 9/5/2013 2:53 PM (GMT 0)
Best of luck to you.  Hopefully this will be the beginning of less pain and discomfort.  Use it or lose it seems to be the truth when it comes to most physical ailments.  Here's to you meeting your goals.

Best wishes,

Tom 

Posted 9/5/2013 2:59 PM (GMT 0)
Good luck! We'll be here as your virtual cheerleaders. Hope it's nothing but feeling better from this point on.
Posted 9/5/2013 3:37 PM (GMT 0)
Hope it helps.
Posted 9/5/2013 4:02 PM (GMT 0)
Me too. When I was going, it was taking a toll on me, for a day or two after each session. However, the proof is in the pudding. My downhill spiral in the past 2 1/2 months is more than alarming. Plus, there is a vicous circle going with the combination of chronic fatigue and chronic pain. One feeds the other, and around and around we go.

The one thing I have tried hard to do throughout my PC ordeal, is to give up and simply sit around and do nothing. Everyday I struggle to accomplish goals I set, of course I don't get to do all I set out to do. But I try. One way I keep my mental health strong through all of this. Not a quitter by nature, but I won't lie either. It's becoming harder and harder to fight everything over time. I don't have the same punch I did 3 years ago, or even a year ago.

All I have to do is compare what I could do a year back, and compare to now. Not a pretty picture. Even concerned with out upcoming cruise (Oct. 13). Not sure how much roaming around and climbing endless stairs on the ship this time, walking in general is much more painful for me on most days. But sure will still have a good time regardless.

david
Posted 9/6/2013 1:00 AM (GMT 0)
Hi David,
I know what you are going through, believe me...Peter is in bed right now from 7pm. The constant fatigue and constant pain is wearing him down. I made him go to bed as he had a bunch of test today, and tomorrow another bone scan.
However, as you are going on a cruise...So are we! I truly believe we must keep going until we drop. If you stop traveling and stop seeing friends and just sit at home watching the news, you will have a sad life. I tell Peter that we will go till we absolutely can't any more. In fact, we have chosen a very wonderful and difficult cruise...Viking River to Russia....Yes...we WILL do it....Oct. 15....to Oct 30. He is looking forward to it, and so am I.....I tell people that one does not die from cancer. One lives with it....one day at a time, and some of those days in a lot pain..and yet some days none. who knows??..My Peter is so strong and yet such a sweet guy..
David, I have seen your name for years...purgatory is what we are living in now...and I am hoping the best for you in the new sessions that you are beginning. xo Di
Posted 9/6/2013 1:26 AM (GMT 0)
David, Sincerely hope you can get some pain relief. Nice thing about a cruise is they will cater to your every need if desired, but I kind of think you'll be walking the Promendade, and even blowing by some of the other folks...

Don
Posted 9/6/2013 2:25 AM (GMT 0)
divo,

so sorry to hear peter is getting so worn down from the fatigue and pain. as my oncologist has said many times, its a vicious circle. the fatigue can aggervate the pain, and the pain aggervates the fatigue. and pain medications themselves can cause chronic fatigue increases, and the circle goes around and around. however, my doctor said, its still far more important to have the pain under control as much as possible, and for as long as possible. for those that don't experience true chronic fatigue, its hard for them to understand that CF often isn't eased much by sleep or rest. I know for a fact, that I can feel completely drained with fatigue within minutes of waking up some days. it's like having a battery that can't take a good charge any more, best analogy I can think of. you can charge and charge (rest) and it never recharges.

wow, truly jealous of your Russian cruise, but happy for both of you. as long as my wife is still working, she would never be able to get enough time off in a row to do a long vacation like that. she's lucky and has to fight for the one full week she does get a year. they don't care how much she takes (it's earned PTO time), but they would rather her take it one or two extra days at a time, no long stretches. So is the life of a nurse.

it's funny about the purgatory name. I have used that as a "handle" for most of my many years on the net, and truly has nothing to do with my journey, however, it has almost become prophetic in the end. it actually originate from my Catholic faith, not my 4 cancer battles.

we will be on cruises at the same time, our ship departs on oct. 13th out of Charleston, sc, so will have to think of you and Peter.

my best to him, and to you. tell him I am thinking of him, he can be one of my "pain buddies", and we will watch out for each other.

david in sc
Posted 9/6/2013 2:31 AM (GMT 0)
thank don,

on the Carnival "Fantasy" ship, the oldest in their fleet, its much smaller and more intimate than many of the new super mega cruise ships, and we like it that way. at the very stern of the ship, they have what they call the Serenity Deck, its limited to adults only, and has two hot tubs, and tons of those really nice deck chairs. We love to spend hours, both day and evenings, just chilling, perhaps reading Kindles, and watching the wake of the ship go off in the distance. What we like about cruising, is that once you are on board, your ever need and want is taken care of.

And the best part, for us, no cell phones, no internet, a total break (barring emergencies of course) from anything else in our regular every day lives. Lots of just "us" time without all the normal interruptions and distractions.

david
Posted 9/6/2013 4:32 AM (GMT 0)
David:

I'm pleased to hear that you are returning to Rehab, I'm very upset that you've declined 30% in 2 1/2 months though. I can understand how that happens though, I do pulmonary rehab and have been on the maintenance program for sometime now. I've been doing the rehab over a year now, since rupturing my tendons in my foot and having to go into a cast, I can clearly feel the decline I'm having. I know for sure you could feel your decline too.

It sounds as if you'll have a lot of hard work to do and it may be very painful at times. Try to keep your head up and focus on that it's going to help you in the long run. I'm not suggesting you make yourself suffer but try to hold on until it's just not quite to much when it gets hard.

I think you'll do fine with it though, you have lots of supporters here on the PC forum. I hope and pray that your cruise goes well and you're able to enjoy your time with your wife. I wish I could talk my hubby into a cruise, he hates the water though and would NEVER do one.

You and I are having serious QOL issues and I want at least one of us to enjoy something really well. So, I'll be thinking of you and your wife in October, I'm going to pray that your chronic fatigue doesn't wear you out and that you can enjoy this special time you have together.

I'm way past my opportunity to travel anymore. I'm lucky my Doctors allow me to travel the 80 miles to visit my daughter at college. We've talked a lot and you know I'm having a tough time, I'm struggling daily with the will to continue to fight on. I put a post both in CP and Lupus with updates.

Having serious issues at home with hubby and daughter, and right now I just want us to be kind to each other and let me enjoy what time I have left with them. If I can't have that, I'm going to live thru you, I hope you don't mind LOL eyes eyes

On last thing, I know that you're a bit worried about the massage. I suffer from very tight muscles and at times it's extreme pain that I feel when my massage therapist is working on me. However, it actually ends up being one of the oh it hurts but in a twisted way feels good. Try to relax when you get your massage and if it's hurting when she's doing the massage, before having her stop, try some deep breathing or meditation. You very well may find afterwards it really did help in the long run.

Take care my friend and you hang in there. I'm here if you need me and know I'm on your side rooting up a storm for you. yeah yeah

Hugs,
Barbara
Posted 9/6/2013 5:51 AM (GMT 0)
Barb,

Appreciate all your care and concern. While we suffer from very different root causes, we still have a lot of common denominators together, guess that is why we understand each other.

I feel badly that you have the personal problems on your home front to deal with, on top and beyond all your normal medical woes. I am fortunate in so many ways that is not an issue with me and my family.

When my doctor was checking me out last week, he said all my muscles in my leg were extremely tense and rigid feeling. I had never really thought about that aspect before, and that's why he thinks that some level of massage might at least give me short term relief.

There are times, mostly when I am actually laying down in bed, either resting or trying to sleep, that I feel my legs, from the hips down, tensing up. Feel like those cuffs they put on your legs after surgery that squeeze down on you - to keep your circulation going. Sure you have had them on you a time or two. Feels just like that, the entire length of my right leg and my right foot. Until my doctor talked about muscle tightness, I never made that connection before.

Sometimes, its enough to drive me crazy, I try to drift off, and it just keeps squeezing and squeezing, tighter and tighter. None of my pain meds seem to help when this happens.

So next week, will have that first intro massage session, and my therapist will brief the massage person about some of my special issues and concerns. For starters, with my Urostomy and its device, there is no way I can be comfortable laying on my right side or my stomach, so they will have to work around it.
Really hoping it works and that it helps some. Like my doctor said, I am past the point where pain meds alone, regardless of strength, is going to entirely do the job - so its time to try things outside the norm.

Will be looking for your updates, and will come there and comment for you. I am on your side 110% as well. I am afraid in some ways, we are birds of a feather.

david
Posted 9/6/2013 10:06 AM (GMT 0)
David,

I think you accidentally left put a "not" in one of your posts about never giving up. So may want to edit that, even though we all get the point. "The one thing I have tried hard to do throughout my PC ordeal, is to give up and simply sit around and do nothing."

I hope the rehab center is able to move your sessions to an earlier hour in the day, that you respond well to the therapy, and that the massages provide more benefit than pain.

You mention the vicious cycle. I assume sleep deprivation is part of that. Unless you get so exhausted that you literally collapse, I assume the pain causes you to not sleep well which contributes to the fatigue/pain cycle.

I know you are a man of faith. So remember the pain you endure in Purgatory will be rewarded in heaven.

LupronJim
Posted 9/6/2013 2:25 PM (GMT 0)
Thanks, Jim.

Will have to look for that correction that is needed. One of the downfalls of typing at hyper fast speeds, lol, and old age.

Most of my sessions are usually set for 1030, which works well for me, they let me make 3 appointments ahead, so my next 3 are at 1030.

I suffer from extreme sleep issues and insomnia, but have my entire adult life, has nothing directly to do with my PC or other health issues. It only makes it worse dealing with chronic fatigue and chronic pain.

One reason I have been on Ambien for over 13 years now, and on Tranxene for over 10 years. The two together work to assure that at some point, my body is forced to get into a sleep mode. 5 hours is a lot of sleep to me, my normal average is closer to 4 hours, and even when I do sleep, I typically wake up on the hour, or every 90 minutes or slow. With bad sleep, comes frequent nightmares, but that's an entirely different subject with me. So when I am sleeping, its often accompanied by nightmares.

I have explained over the years that my handle "Purgatory" has nothing to do with my PC or medical woes, I have been using since I was first on the net in 1995. It has to do with my Catholic faith, and my interest in the subject itself. However, it has become prophetic the past 5 years. Now that I have passed my 3rd full year of dealing with chronic pain, its becoming a purgatory of sorts. One day just blends into the next and the next, and the pain and fatigue is always there. Nothing changes. While I am fighting all of this, my PSA is busily climbing away and upward, and who knows where and what the remaining PC is doing in my body. This just gets funner and funner, as they say down here in the South.

david
✚ New Topic ✚ Reply