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New License Plate/And New Physical Issues

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

Just ordered a new license personal plate today with the American Flag flying over MI and personalized letters of LVNLIFE either meaning Loving Life and/or Living Life and both which I'm doing since being diagnosed.  Just because I'm NED doesn't mean I've not got my problems because the radiation and chemo have done a toll on me everyday and I'm living with it.  But I'm feeling that this new personalized plate will keep reminding others that you need to live/love life while it is here.  While I'm fortunate to give all my glory to God and give Praise to Him for my success in this disease, I've always been reminded that a song brings me comfort from Laura Story "Blessings" that even though I'm suffering He might just have something more in mind for me - what I don't know.

 

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise.'

Whatever makes you feel that gives you strength you all need to pull towards it.  This board has always pulled towards me, no matter if I was down, or up.  I've always been drawn to this board for comfort, support, advice, help, reassurance, ranting, suffering, being misunderstood by family or friends, etc. and most of all love and compasion. 

I'm dealing now with such sever hip pain that renders me unable to walk at times and I'm thinking it has to do with the radiation to my hips because of rectal cancer.  I'm going to my primary doctor in August for a physical and going to ask what he thinks I should do.  It's become so painful that I'm almost not able to make love anymore and I'm wanting some help.  I know that no topic is off this forum because of what we have had to deal with so I'm sorry for the new people if I've stepped on other's toes by being so forward.

This new license plate makes me think that I can live/love life again after cancer and I'm going to do my best to make that happen.

Please keep me in your prayers, vibes, good wishes and just your thoughts that I'm able to walk without pain again very soon.  I'm used to walking 5-7 miles a day and I'm barely able to walk about 2.  My nights are long sleepless nights unless I take some Flexirol and pain pills so I'm wanting some relief.

Thank you, my friends, for being here for me.  You are always in my prayers.

Hugs! Kim

 

danker
Posts: 769
Joined: Apr 2012

My heart aches for you! If only there were somthing I could do to give you relief!  You are definately in my prayers. Wishing you the best..

Trubrit's picture
Trubrit
Posts: 1703
Joined: Jan 2013

I always think of you and Ron, when I think of survivors surviving.  Its great to be classified as NED, but sometimes that is hard won, and you have a whole new set of problems to deal with now that the beast is tamed. 

I think you're license plate is wonderful, and I hope it gives you added strength and lets others know that you are happy to be alive regardless of the stuggles of long-term side effects.

I pray that you will find relief from your hip pain. It is awful to experience such debilitating pain, and there is no getting away from it. 

Thank you for sharing. 

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

I'm a 49 year old guy dealing with the same hip pain after rectal cancer radiation. I feel blessed to to be alive, because before the treatment I had so much pain where the cancer was that I know without the miracles of medicine I would be dead by now. I went back to work a few weeks ago, but I had to stop, because the hip pain was unbearable after a while.

got some physical therapy, but it will take a while. At this point I cannot put my socks on and cannot tie my shoes. 

I do some exccercises in the morning before i get out of bed and I'm still nice and warm and relaxed. I pull up my knees and swing them sideways then grab them and give my hip joints all kinds of twists nice and gently. 

Hopefully will get better with time for both of us and I wish everybody here more health and happiness.

Laz

Yolllmbs's picture
Yolllmbs
Posts: 261
Joined: May 2014

Kim,

    You're always so positive and supportive. I'm so sorry that NED still holds pain for you. I'm praying for a solution. Some days the battle seems impossible. Other days it's a breeze. My moniker came from my dad years ago. It stands fir Yolanda lives loves laughs mind body and soul. I try to live up to that. Since the diagnosis, it isn't always easy. I'm just working to be grateful for the day. I have so much to be grateful for.  Kim, your posts have helped me remember that 

Yolanda

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Thinking about you, and praying for relief.   I've never had radiation, but may be knocking on that door soon if cyberknife (ck) of lungs doesn't come through.   I hear it's not as intrusive as CK. 

ron50's picture
ron50
Posts: 1320
Joined: Nov 2001

   Giant hug coming your way. I know how much pain can control your life. I have stubbornly ridden the pain for over fifteen years . Now it has gotten the better of me. No longer can I just grin and bear it. From the personal perspective , well it didn't really rate as much of a part of my life anyway. I guess when surgery and chemo destroyed what little was left I truly did not mourn its passing . you don't miss what you never really had.  Back to pain. I have started taking oxycodone and noxolene. Interesting drug . It is a combination of opiate and opiate antagonist. Not quite sure how it manages to work but it does. It is supposed to work for twelve hours but that is just wishful thinking on the part of the manufacturer. I have avoided building quickly to high doses. I started at 5/2 mg morning and night . Then I went to 10/5 morning and 5/2 at night .stayed there for a couple of weeks then went to 10/5 morning and night.

         On occassions I still get breakthrough pain . That is where my old ability to grin and rear it comes to the fore. I take a tablet called Targin, thats the oxy/noxolene mix. It is controlled release so there ae no highs just moderate pain relief for around seven hours. I have tried the various patches ,fentanyl and norspan. They were horrible for me ,there was no cosistency or control of the drug release and I suffered nasty side effects . Same with the anti-depressants that they promote as pain killers. I tried endep and had some really bad experiences and totally refused cymbalta.

           I have been taking cyclosporine for nephrotic syndrome of the kidneys. I had a parainfluenza last november that put me in hospital . It also raised my daily protein loss from two point eight grams to seven grams. I went onto the cyclo in January. It has dropped my protein loss to just over two grams and my bp has stayed steady at 140/80. In the past fortnight something has gone wrong and my bp has been spiking. This morning it was 180/120. I suspect the cyclosporine may have stopped working and my protein loss is rising.   Immuno

suppressants don't come much stronger than cyclosporine. I don't think that I have many options left. Dialysis will not help as my kidneys are still clearing toxins it is just that they are getting rid of the protein that stops the blood from leaking thru the walls of the veins. I will see one of my docs on wed and see what he thinks. Hope you can find some pain relief. I am having no problems with the targin so they may be worth a try,Hugs Ron.

ron50's picture
ron50
Posts: 1320
Joined: Nov 2001

     Just an update. I went and saw my gp yesterday. We had a good talk. This guy actually listens and we usually reach a mutual agreement on treatment. He asked me what I thought was casusing the bp spikes and I said that it could be that the cyclosporine may have stopped working but more likely that it was that I wake up each morning with a a back pain flare because the Targin is not lasting long enough. He said that he thought that I was right with my second opinion and suggested we raise the Targin dose from 10 oxy/5 noxolene twice a day to 15 oxy/7.5 noxolene. I went on the higher dose last night. This morning I woke up pain free and bp of 125/95.  It is amazing what little victories can do to lift the spirits of people in our situation. He thinks that i will have one or maybe two incremental rises before I reach the lowest sustainable dose.

              Targin is not what I expected oxycodene to be like.. There is no high from it. My gp said it has been a source of great dissapointment to drug addicts that have tried to abuse it. It just does not work . Apparently with a lot of opiates you still have the pain you are just so high it no longer worries you. That does not happen with targin. It actually stops the pain and the noxolene(the opiate atagonist) minimises problems like constipation. I swore that I would never go on mind altering drugs. Well I am glad that I waited till targin hit the market. When I first went on it my nephrologist had to ok it. He was very very impressed with it as a pain relief and was more than happy for me to go on it. Have a talk with your doctor Kim and see what he thinks . It really is helping me. I am not suggesting that it is the holy grail for your problems but it is a good solution for those of us who have problems that are not going to be resolved by other measures. All the best Ron.

Yolllmbs's picture
Yolllmbs
Posts: 261
Joined: May 2014

All victories are worth celebrating!!!  Hope your pain issues continue to improve  

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

 

 

 

I'm so glad that you've found something that is non-addictive and is helping your pain.  You have been such a warrior in this survival of the cancer battle.  I'm going to ask my doctor what he thinks and he probably might just want to send me to an orthopedic first and/or maybe get some X-rays of the hips.  I'm so glad that you have found some relief.  Thank you for sharing your journey with us as it has helped me and a lot of the others.  Wishing you health.

Kim

 

 

YoVita's picture
YoVita
Posts: 562
Joined: Mar 2010

I hope your medical team can help solve this problem.  You have been such a bright light on this board.  You're in my thoughts, from one rectal cancer survivor to another. 

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 473
Joined: May 2012

I know what you mean about lasting effects from chemo and radiation.  I walk like a 80 year old lady.  I go to the bathroom about 20 times a day.  So frustrating.  I can't use toilet paper, I use wipes and if I forget to bring them with me if I go anywhere, we have to stop.  I used to walk too, now just walking around the house can be difficult.  I am also diabetic, so not sure if foot pain is from that or chemo or combination.  I am 51 and feel so old!  Hope you are feeling good today, you are not alone.

Sandy

db8ne1's picture
db8ne1
Posts: 92
Joined: Feb 2013

Kim,

Sorry to hear about your pain issues.  I've had back pain since I was a teenager (scoliosis and naturally fused vertebrae - a birth defect - and a host of other problems).  So, pain is no stranger to me.  However, it can really wear on ones psyche.  Since radiation last year I have developed hip pain as well.  I can walk - but not far.  I sit for work and sometimes simply moving my leg sideways causes cramp like pain.  I haven't sought treatment, but I'd sure love to know what you find out.  I also have neuropathy in my hands and feet that I'm still hoping will resolve.  That makes walking all the much more difficult.

BTW - I love the Laura Story song, Blessings.  I know the plans He has for me...

Bless you!

J

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

Thank you all for your responses.  It seems to be a little better now that I'm not walking so much.  Putting a pillow between my legs at night is helping also.  Still going to ask my doctor what he thinks.  I'm just not wanting a bone scan as I've heard it takes hours and with my bathroom issues I'm afraid I'd never last.  Still wishing they could just do some x-rays.  Thank you all for your thoughts and prayers. 

Hugs!  Kim

Trubrit's picture
Trubrit
Posts: 1703
Joined: Jan 2013

Have you considered that food might be causing the joint pain?

I was having a terrible time with joint pain, especially my elbows, hips and knees. I thought for sure it was the results from radiation and chemo. When I found out about my liver met, I started seriously cutting down on bread (even though I make my own) and foods with white flour, and cutting down on my sugar intake. 

I didn't notice it at first, but my pain, all of it, went away. 

Well, after my surgery and recovery, I started eating the white flour foods again, and the pain returned immedietely. Now, if I eat a Bagel (the worst trigger of pain) or any white bread type food (Pizza crust, Tortillas) the pain cranks up. 

Just an idea. I know we're all different, but I thought I would throw it out there for you to mull over. 

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

Yes that would be "food for thought" LOL however, I've never eaten much bread products, sugar, red meat or fat and eat the same diet all the time.  I'm pretty much a healty eater so I'm not sure what I could cut out.  Thank you for the suggestion.  Anything is worth a try :)  Also, I was just tested to see if I was allergic to gluten and I wasn't.

Kim

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