Countdown To Rai

The real countdown begins....I'm really going to have to do this, aren't I?

Only four days left until RAI....just the thought of it makes me so nervous I feel like I am going to hurl....

I am so scared of how it is going to be--how I am going to feel afterward--will this fix my problem with swallowing the way that surgery really didn't--how will I cope with being away from my baby (& my family)--how will I deal with spending so much time alone when I haven't really had a spare second for at least 6 months--when I've never lived alone and probably only spent the night by myself once or twice in my whole life--what will I do if I have trouble breathing/swallowing--swelling/naseau...how am I going to be able to put this behind me for awhile once I get back on my meds--how will I deal with having to go back for yearly scans and cross my fingers I don't have to do RAI again--How will I deal with, well, everything?

I just want this to be over with.  I think I could deal with it all a little better if I didn't have so much trouble swallowing.  It is so un-nerving to have to "make" yourself swallow food or even water....Please, oh please let my optimism stay strong during this time and let this just be a symptom of the cancer....

Everyone please take care of yourselves over the course of the next few weeks while I am offline--and of course continue to do so afterwards!  Just know that I will be thinking of all of you in some way as I make my way through the treatment/isolation&recovery.  Take care.

I wanted to reply to you as I just completed my RAI on May 15 and was in isolation away from my baby until May 22.  I also was so afraid of everything you listed.  I have anxiety/panic attacks and was so fearful how I would deal with everything. 

 Well, it went actually very well.  I stayed in a hotel for the first 4 nights and then at my parents for the last 3.  My hubby set up a web cam so I could see him and my baby girl every day.  That was a major saving grace for me.  It was emotionally hard, but went quite quickly in hindsight.  I did take ativan and clonazepam to ease the nerves, but they were really quite minimal. 

 Physically I felt pretty good.  I had minimal nausea (took gravol to ward that off), I had sore glands like with a flu and what seemed like a sinus headache.  I met up with friends after after day 4 and went for dinner.  I read alot and watched Grey's Anatomy DVDs. 

I want you to know you will get through this.  Before my whole cancer, I was afraid to do many things and wondered how I would ever get through all this, but we get strength from somewhere we didn't know we had. 

What this experience has done for me is made me appreciate the little things a lot more, how my daughter feels in my arms, the physical closeness of snuggling with my hubby, etc.  This all sounds cheesy, but once a person has been in isolation, it all seems to mean a lot more.

 You take care and let us know how you do.

DEB

My response won't be a popular one, but here goes...

Has anyone ever told you that attitude is everything?  IF you enter into this procedure with your fears, negative thoughts, and negative attitude, then you are sure to have a harder times and feel more side effects.  This procedure is not hard.  The entire idea of cancer is a very scarey thing, but look at the positive side; it's a cancer that is not deadly for the mass majority and we don't go through years of chemo and radiation as other cancer victims do. 

If you haven't ever been alone or had "ME" time, then instead of taking this all as a fearful negative, make the time positive; start a diary about yourself, read those books you've never taken time for, catch up on your favorite tv shows, make some lists that remind you of who you are and the positives in your life.  If you aren't in touch with yourself, if you're negative and lost in self pity, what good will you do for your young child?

I took this time as ME time.  Sure, I missed my family and friends, all I wanted when I got out was a big hug from my hubby.  But I turned a negative into a positive.  I caught up on reading, I used a lap top to enjoy some time on the web (I wore latex gloves), I watched tv shows I don't normally get to watch, I talked to friends and caught up on each others' busy lives, and I caught up on rest and relaxation. 

Self pity never accomplishes anything.  I got over my self pity immediately and was determined to beat this disease.  I'm only in my early 50's and I have a lot of life left in me.  I honestly think that my attitude and the POSITIVE support of friends and family help me get through this with very little side effects.  It's almost 4 weeks since RAI and I still have probs with taste buds, sores in my mouth, and scabby nose.  But I got through everything and I feel good.  As far as I'm concerned, this was a small hurdle in my life that has just made me a stronger person.

All of this may sound cruel, but I learned it from my aunt who eventually lost her life to cancer.  But she lived 10 years longer than predicted by the medical community.  The doctors swear it was her attitude that added 10 years to her life.  She lived every single day of her life and she lived it with a smile on her face and a tremendous sense of optimism.  Don't be afraid...don't think negative thoughts...don't let this disease win.

Take this very special personal time and make it into a positive time in your life!  You may find that you like some personal time and should start planning it in your life more often.  Of course without the RAI treatment.  Just "ME" time to make yourself a better person for yourself, your husband, and your children.

Relax, take a deep breath, and be POSITIVE!!!  You will come through this just fine! :)

I agree. I recently finished RAI isolation and here's my take. (1) For me (and many others) the radiation part isn't anything that will really affect you. I was never sick because of it. When I asked my endo if I should have any anti-nausea medicine she looked at me with a starnge stare -- as in-- why? She was right. The radiation probably will not affect you. The greater badness happened as you get more and more hypo, not the radiation. It really gets very much out of your body quickly... it's not usually anything that you even feel. (2) I agree with the attitude. Don't be your own enemy. I rented 24 episodes of the TV show 24. Everytime I felt a little drained (from the hypo) I'd watch an episoden and I'd get energized. (3) I read a lot and relaxed. I also went for walks around the block. No crime in that. Nothing too taxing, but enough to get the "locked-in-the-room" feeling washed away. (4) Just stay as active as upbeat as you can and you'll be fine. People who I've talked to mention the hypo part as the hardest part, not anything about the actual radiation. If you never told me that I had swalled two 50 RAI pills, I never would have known it. (5) You'll be fine. Really, use the time to take a break. Sometimes on my busy schedule I wish I had a little isolation as I did during that RAI time. (Except with cheese, chocolate and other non-LID fare). RedStar

Thank you all for your responses.  They really help.

I guess I was just really venting.  I have all these anxieties I guess because the last several months have been so difficult--not being able to swallow very well/difficulty eating and breathing--I am scared (very) but at the same time I am optimistic that this will be the thing that "fixes" it all. 

I take no offense to anything said.  It's all true.  Self-pity/doubt/fear etc. will get you no where.  A good outlook is a must.  Thank you again for your input.

Take care of yourselves.

Hi

I just had to say that just because some of you don't have any issues with RAI doesn't mean others don't. My husband had the worst time with it. He was energetic while going hypo, worked the whole time, did extra projects around the house, etc. He was great on the day of the RAI but by that night and the next 3 days, he was nauseous as hell. It was from the radiation, not being hypo. He had to use the anti-nausea medication which wasn't prescribed for him in the beginning. We had to go through the phoning the doctor, waiting for a call back, waiting for the script to be called in and then me going to get it. If you are offered it, take it and keep it close, just in case.

You have every right in the world to feel scared and down and worried. To me, if you pretend things don't get to you and act like everything is positive is fake and that can't be good for the body as it's stressful to put on an act like that. This is the place you are supposed to come for support and sympathy of all you are going through. I sympathize and will be thinking of you the whole time. Not being able to swallow well is SCARY! Keep a phone close by and maybe have a signal with a loved one in case you get into trouble and need help. It's very unnerving to go through cancer treatment alone. My husband said it was the worst part of this whole thing. It was for me and our son as well. Maybe you RAI will go just like the other people here who make it sound like a walk in the park. I hope it does. I just know we were shocked and unprepared for what could happen so your anxiety is normal and hopefully, you'll look back on this and wonder why you were so worried.

 I hope you get to log on and let us keep you company while you are in isolation. If not, I will look for your post when you're all done with it. Take good care and hopefully, everything will go smoothly like everyone who has posted to you. Please don't feel like you can't be sad or worried...it's totally normal. I will be thinking of you..

Karen

I'm truly sorry your husband had a difficult time.  But my optimism is not fake.  It is a proven medical fact that your attitude will guide your recovery.  Isolation is not that difficult.  If you don't feel well, it can be uncomfortable, but in all honesty, who can't spend 3-4 days alone?  I had difficulty with other phases of the process, but I still stayed positive, didn't give into it and it came out good.  After surgery I couldn't even breath.  One of the first things my nurses and doctor said was to stay calm or I would make it worse for myself.  My situation lasted for over 24 hours and only after I was on steroids could I swallow and breath normally.  Sometimes you just need to depend on your inner strength.  If you find that fake, I'm sorry.  But I am a believer in myself and the fact that if I am strong and surround myself with strong people. I KNOW I CAN accomplish anything.

Don't be scared.  Even if you happen to be in the minority that has any side effects, you WILL get through it and it will be ok.  Time will move quickly and you CAN be strong enough to get yourself over this hurdle in your life.  Remember your loving family will be waiting for you with open arms and you'll realize that all of this has been worth it.  Because soon your life will return to normal and you will be able to enjoy that lovely child of yours.

I promise...there is no reason for fear.  If you can handle a cold, you can definitely handle RAI.  As I and others that have been through it said...enjoy ME time and make the best of your time alone.  Soon enough you will be back to the hussle and bussle of your daily life!!!

Be strong...Be POSITIVE...and know others will be thinking about you.  You WILL get through this part just fine!!!!!

Oh my goodness. YOUR optimism is NOT fake. I was referring to the original poster who is worried and anxious and to put on a brave face can be taxing and stressful. I was speaking to her about being honest in feeling scared and that it's NORMAL. That's all. I would never speak to your feelings or experience. I am sure your optimism is what is getting you through your ordeal and that's awesome.

Take good care and be well.

I also did not find the RAI too taxing. The first day I had no  signs of nausea at all . The second day  I felt slight nausea . It almost felt like that feeling you get when you are pregnant. I found that if I kept eating small  amounts throughout the day I felt fine.You'll find the days go by a lot quicker than you would think.

I am just completing day four of seven in isolation and my heart goes out to you. For me, the anticipation is always the worst. Once I swallowed the pill, I thought, ok, I can do this! I have a one year old and a three year old, so being away from them and not being able to explain why has been difficult. Luckily, I have caring friends and family that are helping us through. I have to say, I had very few side effects from the RAI, but on day two and three, I just did not feel myself. Yesterday, I could tell I was getting better, and this morning when I woke up, I felt great! If you are anything like me, waiting for your treatment to start will be the worst part. Once you swallow that pill, you will see that you can focus more on you and healing yourself other than worrying yourself sick! Take care - I will be thinking about you.