Topic: The waiting game

Here it is almost 4:00 in the morning and I havent yet been to bed. I had a scan on Monday and sleep has been evading me since. I woke up in the middle of Thursday night just crying. It doesnt make sense. I have been quite strong recently. There were days when CC wasnt a part of my thoughts-I had truly forgot. I was normal-if that makes sense. Then the scan happened and I remembered. And now I am so scared again. I feel terrible whining about it when others are in physical pain and not as healthy as I, but I just have to vent. I hate this system of scan and wait. I waited over a month last time to get my results! I will not wait that long this time, but I dont know when I will get them and this waiting is tearing me apart.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: The waiting game

Kris,

I have been thinking about you all week.  I'm so sorry you have to wait so long to get your results. I don't understand why it does take so long for some doctors. As I have said before, my doctor will be able to at least look over the results within minutes after my scan. It will still need to go thru radiology, but she has seen enough of these scans to know if there is anything glaringly wrong.  Please post the results ASAP when you recieve them. 

But try to relax.  I hear everything you are saying, and understand so well.  Never feel that you are whining. We all need someone to listen to us that truly understands how we are feeling. And I truly understand.

I got your email. I will write you back tomorrow. Take care of yourself. I am thinking about you and crossing my fingers that all is clear and sunny!!!

Sue

Today is a new day. Congratulations, you are already a survivor!

Re: The waiting game

Hi Kris,
What kind of scan did you have?  My husband Joe always has pet scans and they send a DVD copy with us when he leaves. THe paper results usually gets to the doctor in a few days.  I notice some people are getting MRI's instead of PEt scans.  I heard a doctor say they are better when looking at the liver.  I know these scan take a little longer to get results but Joe hasn't had an MRI since he was diagnosed.  INput please. Thanks  Mary Anne

Re: The waiting game

MaryAnn,
   My husband always gets MRIs. His doctor seems to think they are better. We are going to go back to the Univ of Pitts to get a cat scan the first of the year. They feel their cat scans are better and it doesn't hurt to get a second opinion even when things are going well. Best wishes. Mary

Re: The waiting game

Good Morning Kris..... I truley understand what you are saying.  Just a little secret for you. When your scans are done they are read by the radilologist within the hour if not minutes. The hospital I go to has evreything computorized so the report is typed in to the system initially and then the scans are reviewed again by usually by the same doctor and signed off as verified.  If where you go is computorized record keeping and like in the same facility your doctor or nurse has access and can print you a copy, although legally I'm suppose to go the Admin section (release of Information) to obtain copies of my medical records or indvidual reports.  I do that as well depending on who I see first.  Federal Law allows them up to 30 days days to get you a copy here in the states but there is nothing saying they can't release it earlier, so I get mine within 2 days by physically going and asking for a copy. I also go to a Veterans Hospital now, so it may be a little easier for me to do than your system. I'm like you and pace the floors or go bonkers just waiting a couple of days. It is nerve racking. So give it a try Kris and put on the orphan Anny look and go ask for a copy.  If need be call your doctor and tell him your anxiety is causing sleeplessness.  I don't know how it is where your at but it is your medical information and you should be able to sign a release of Information form and get it sooner.  I have run in to some grouchy people when I have been referred some where else who will say "well by law we have thirty days" and I usually come unglued and make quite a scene a tell them in front of all, I have the cancer and I don't really want to wait thirty days when all you have to do is take 2 minutes and make a copy. And then I asked them would you want to wait.  I don't know I hate being rude but sometimes the system just doesn't care about your pyshcological torment.  Now calm down and take some deep breaths I just wanted to let you know I understand completely.
Bless Your Heart Kris , I know that feeling of anticipation and need to know.  Wish you luck!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: The waiting game

Thanks everyone. It is just so different here in Sweden. I am not even sure who is getting my results, my oncologist (who I believe is the devil in disguise) or my lovely surgon who is technically in charge of my case.  To make matters worse, I did not have the scan at a hospital where either of my doctors is based-but in a small hospital an hour away because they had the soonest open appointment.

I will have my wonderful husband try to contact the lovely surgon and see what the deal is. One day my Swedish will be good enough that I can do these things myself, but I am not nearly there yet!

I appreciate everyones kind words. I will do my best to stay positive and be a little pushier. It is so hard to be your own advocate when you are scared of being rude. That is something I must get over. I feel better for my rant and all the good advice and understanding you all have given me. I will pop a sleeping pill tonight so there will be no middle of the night moaning and complaining from me.

Thanks again everyone!!
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: The waiting game

Good luck Kris and sleep well!

Carol

Re: The waiting game

Dear Kris,
Now my turn to help you! I am a medical provider also. IT IS YOUR RIGHT1 You sometimes have to be a little ascertive as Jeff said, to get things done. And he is right! What would that person do if the shoe was turned. Let your Doctor know that you would greatly appreciate recieving the results of your tests in a timely fashion, and would gladly sign any release of information paper work so that you can obtain a copy of your report. I am not sure about Sweden, but in US, scans are read immediately.
Hope this is helpful,
Lana

Re: The waiting game

Well, I got my results...sort of. The ct scan was "not readable". I could really have some potty mouth right about now. Did they not know it was unreadable when they took the scans? My fear is that there is something they are worried about, but are not clear if it is something they should be worried about. Does that make sense??? So they are having me do an MRI next week with my lovely doctor meeting me there to see the scan and to give me the results immediately.

Needless to say, I have cried. I dont know where you guys get your emotional strength, because I sure as muffins dont have it. Maybe the MRI will show nothing, maybe the CT really was not readable. I dont know. All I know is that I am scared and I am tired. Nothing was said about my bloodwork either. I will need to ask Hans to ask my doctor about those as well. He is emailing my lovely doctor now to see if the scans are really unreadable or if there is something he wants a better look at. I am babbling I know but I am terrified.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: The waiting game

Big hugs to you, Kris.  My thoughts and prayers are 100% behind a truly unreadable scan.  I'm glad that your doctor will be there next week to give you the news immediately.  It's just mean to make you wait any longer than you have already done.

30-something caregiver

Re: The waiting game

Hi Kris,

We're all in the same boat with you.  We're all scared at times and cry frequently. 

If you can possibly do it, assume unreadable only means unreadable, heave a big sigh at how untogether those people are and just carry on with your life until you have your scan done properly.

Hugs,

G

Re: The waiting game

Kris,

You have been on my mind.  Try not to worry, until there's something to worry about. I know it's easy to say but I have had my share of scan screw-ups. It does happen, so you just have to believe that for right now.  And, of yes, I cried all the way home after the last screw up.  We don't have to be ultra strong all the time. This is our LIFE we are talking about.  The mere thought of losing it is enough to send me into weeping fits.

The time will be here before you know it. I am sure your husband will be able to get some reassuring news from your doctor. And thank goodness your doc is meeting you this time.  When is your scan reschedule for?  I will be thinking about you, crossing my fingers and sending up prayers and wishing you a peaceful mind until then.

Sue

Today is a new day. Congratulations, you are already a survivor!

Re: The waiting game

devoncat wrote:

Well, I got my results...sort of. The ct scan was "not readable". I could really have some potty mouth right about now. Did they not know it was unreadable when they took the scans? My fear is that there is something they are worried about, but are not clear if it is something they should be worried about. Does that make sense??? So they are having me do an MRI next week with my lovely doctor meeting me there to see the scan and to give me the results immediately.

Needless to say, I have cried. I dont know where you guys get your emotional strength, because I sure as muffins dont have it. Maybe the MRI will show nothing, maybe the CT really was not readable. I dont know. All I know is that I am scared and I am tired. Nothing was said about my bloodwork either. I will need to ask Hans to ask my doctor about those as well. He is emailing my lovely doctor now to see if the scans are really unreadable or if there is something he wants a better look at. I am babbling I know but I am terrified.

Kris

Hi Kris.....  Do you know any swedish potty mouth?  If you can write them in swedish we wouldn't know. Sorry about your scans being unreadable.  I guess you can look at it as MRI's are a better tool for ruling out any problems. I'm sure you would like a clear picture rather than a foggy one.  I wish I could say something to put you at ease a little, but you know what your up against and it is scary no one can deny that.  Kris a prayer of support coming your way. 
Jeff G.
P.S.  My emotional strength is just a cover.; we all have tears.

Take it to the Limit,One More Time! (Eagles)

Re: The waiting game

Hang in there Kris.

Always, the days after the scan (waiting) and the day we met with the Dr. about the scan were the most stressful.

We are all thinking about you.  Jeff's right... I think the strength comes and goes.  It's much easier to be strong for someone else than for yourself - at least for me.  We'll be strong for you, you just cry until you can't any more and then take a deep breath.

Stacie

Re: The waiting game

Kris,
I am following the others.  Tons of good wishes coming your way.  Can you feel it?
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The waiting game

Thanks Everyone!!! No Jeff, I know no Swedish potty mouth, but I do believe that will be my next lesson!
I appreciate all your responses. It is just a horrible thing to worry and not understand what is happening. My husband had to go away for a couple of days, so I just picked up my bags and went to Glasgow for the weekend. It was just what I needed. I have missed it since I moved to Sweden and I spent some time with my friends who basically babysat me. Just being in a country where you can eavesdrop on the conversation next to you was refreshing and relaxing. Plus, the Glaswegians are known for their sense of humor and laughter is a great tonic. I feel so much better but I am heading back to Sweden today for the new scan this week. Hopefully this feeling will last and I will be laughing and fiesty at the doctors-my surgeon loves it when I am fiesty (honest!). Thanks again for everyones kind words.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

17 (edited by Peter Mon, 12 Nov 2007 06:26:06)

Re: The waiting game

Kris,
May the MRI ease your fears!  We'll all be with you this week.

I think all of us feel like emotional yo-yo's some of the time.  I can be feeling great one day and scared to pieces  (potty mouth temptation on that one ) the next.  One silver lining is that when your heart is on your sleeve like this you also can't help but really feel the love around you.    And sometimes we all need to put the walls up to get through the day or get a break............

I'll have new labs this week, results late Thursday.  Sometimes I'm nervous, this time I'm scared.

#$% @#%!%  disease!!!!!

-Peter

Re: The waiting game

Hi Peter,  I'd say I got your back coverd but it don't work in this situation.  Hope your labs come back ok.  I've got Nuclear Bone Scan Thursday at 8:00 A.M.  Hellacious pain in left shoulder joint.  Regular xray showed degenerative activity in joint; but heck that comes with age.  Kinda puts the binders on popping up to Maine this Month.
Take Care!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: The waiting game

Peter,

This is a good time to remember the message of your avatar.  I think you said very well when you wrote: "One silver lining is that when your heart is on your sleeve like this you also can't help but really feel the love around you."  You're in my prayers.

Richard

Re: The waiting game

Jeff,

Nuclear bone scan,  I'd better get your back,.   Heck....we'll both just get bullet proof vests!
   
Bone scans beat a set of labs anyday,  aces and kings versus a pair of 2's.    I hope they don't find anything other then some simple way to help with the pain.  My CM guy keeps telling me it's just "time and gravity Peter, working on all of us". 

As for Maine the lobster men don't make you pull your own pots anymore so as long as you can pck a lobster with your right hand you may be all set.

-Peter