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after thoughts

Posts: 14
Joined: Feb 2010

Done with treatments for four weeks now OF STAGE 3. Just waiting for the visit to sloan keeterling on april 5th for the first rectal exam. Nervous and overwhelmed. I still wonder how I got this? It eats away at me. I am experieincing some headaches and body aches. DId any of you have this? COuld this be signs of something? I have two little girls and want to be strong for them. It is hard.

Antoher question. I have a port and the last time no blood cam out. ANy reasons why this happens?

I am on Xanax for my nerves which helps. I hate the waiting until May for the updates. Help if you can!

lizdeli's picture
Posts: 567
Joined: Jul 2009

The waiting is the worse part once treatment is over. The first follow up is probably top of the list in terms of anxiety. I ask myself how I got this as well as I truly don't fit the "profile". But what's important is that we found it and that we get good treatment. I've heard of others having headaches, I didn't but I know it can happen. Body aches, yes, especially around the hip area. Keep in mind, you've been through a lot and your body and mind are both tired. Now is a good time to help your body heal. Before you know it your follow up date will be here and you'll hear good news. Right after treatment I slowly got back into the "norm". I tried to keep myself busy and occupied whenever I could and I also let my body rest when I needed to. Prayer helped me a lot as well.

What you are feeling is normal after what you've been through. I wish you a healing body, mind and spirit.

mp327's picture
Posts: 4148
Joined: Jan 2010

Ditto to what Liz said. I really believe that the post-treatment phase of cancer is the worst when it comes to anxiety and worry. I have done more than my share in the past 18 months since I finished chemo/rad. It is something we all experience, so don't feel like you are alone in this. I'm sure that your first follow-up exam will give you all good news, so until then, try to occupy your time by doing the things you love. Distraction is great therapy!

JDuke's picture
Posts: 443
Joined: Nov 2009

Distraction is absolutely the best way to deal with the post-treatment/pre-scans phase. I know you must be very busy with two little girls, but try to take the time to "reward" yourself for all that you have been through, pamper yourself. It is hard to let go of the question of how did I get this cancer. But the important thing is to focus on the future. Treat yourself kindly, be mindful of the stress you are exposed to, rest when you need to, enjoy your family and friends and soon the good news of clear scans will be here and on the heels of that... all of this will be just a chapter in your past.
Blessings to you,

Posts: 489
Joined: Dec 2009

After two years, and a couple rounds of this, I too struggle with the brain trip this disease takes us on. I take Lorazpam or Tylenol PM just so I can sleep at night without worrying that every ache and pain is cancer. It is definitely the hardest part of "getting through this". I agree with Joanne as far as treating yourself kindly, keeping busy with family and friends, etc. I read EVERYTHING trying to figure out how I got this also....and now even more importantly, how to prevent it from coming back if possible. I'm trying to eat better, alleviate all stress from my life, I have shiatsu massage and acupunture, which I highly recommend, if you can, especially a massage. Such a great way to treat yourself...and you deserve it!!!
We ARE survivors, and we need to CELEBRATE this every chance we get!!!!!

Posts: 3
Joined: Mar 2010

I am 51 years old, and have never written on a message board before in my life. I have been treated successfully for anal cancer with Mitomycin and the 5 FU in October 2009.. I too find myself scared, and worried after my treatment. I sailed through my treatments with my doctors saying I was a star student. After reading some of these posts, I hear some of the same issues and concerns about surviving cancer.
Pelvic discomfort, feeling like an old lady getting up, and feeling sad, when I should be thrilled that all went well. I am coming up on my second PET scan since ending my chemoradiation, and am nervous.
I see alot of folks saying that they are having issues with too much bowel movement,and as of the last three days, I have not had any. That makes me nervous too. That was a symptom of mine which prompted me to get my colonoscopy and not put it off.
My cancer was stage III and I did have some nodes light up on the PET scan.
How do we stay positive and focused when what we knew as normal before, has changed?? For the most part, I am so positive and won't allow the cancer to change me, but I do notice that it creeps into my brain more than I thought. I have spoken with my primary doctor about these feelings and emotions and have been given anti-depressants. I feel that it's such an oxy-moron that I should need them now, when I didn't need them before.
I appreciate any feedback...

mp327's picture
Posts: 4148
Joined: Jan 2010

I can SO relate to how you are feeling post-treatment and I'm sure many others can also. It seems to be "normal" to have feelings of anxiety, fear and sadness after treatment ends. As much as we would like for our lives to return to the way they were before cancer, it just doesn't quite work that way. I've been out of treatment for 19 months now and I still get really anxious prior to follow-ups and scans, even though everything has been good so far. Those thoughts of "what if" are always in the back of my mind--I call it my "little black cloud." I'm not sure it will ever go away, but I have to say I don't think of cancer as often as I did just a few months ago. The farther away I get from treatment, the less it dominates my thoughts. I'm sure you'll find the same to be true also. As for the constipation you are having right now, if you haven't already, I would suggest asking your doctor what he/she recommends for this. I had a bout of constipation during treatment and my rad onc recommended Miralax. However, I would advise you to check with your doctor to see what is best for you. I have learned that having diarrhea is preferable over constipation, as constipation causes hard BM's for me, with pain and some bleeding. Correct diet is essential too and can take months to dial into, figuring out what foods cause us problems. You have not been out of treatment all that long, so keep track of what you eat and when you have problems so you can narrow down the trigger foods. I had problems for months with fresh fruits and veggies and still do sometimes. I wish you the very best and hope that you will continue to seek support here. I'm sure others have many suggestions on what might help you too. Take care.

Posts: 3
Joined: Mar 2010

Thanks so much for responding...it is nice to share this with others that have a complete understanding of the mind, body and soul experience of anal cancer. I appreciate your words of encouragement, and will continue my quest for normalcy and positive thoughts. I did and still believe that positive thoughts and attitude were part of what made my treatment easier than it could have been. I certainly had a fabulous network of friends and family supporting me all the way...and now that the last Petscan came back with me being cancer-free, life is returning to..pre-cancer status. However, I still need to work on understanding how to survive it in my mind. I know that I will, and I agree with you, time is most likely the best answer. The further we go out from our last treatment, and our bodies heal, and continue to be cancer-free...we will again move forward enjoying the gift of life. This board is a nice avenue for all of us to share our thoughts and any support we can for each other.
Enjoy this beautiful day!

steve714's picture
Posts: 15
Joined: Feb 2010

love the pic of your smiling face and that adorable dog. every time I see it it makes me smile too. My dog has listened to a lot of bitching lately lol bless you of sharing with us steve714

JDuke's picture
Posts: 443
Joined: Nov 2009

Thank you very much for the sweet compliment. My little gals name is Lilli. She has been the best medicine. She was only 1 year old when I was diagnosed and she made herself available 24/7 to cheer me up. I am crazy for her!!! Pets are wonderful; that unconditional love thing!!!
Best regards,

Posts: 16
Joined: May 2010

What a cute little girl! I have cats and they have been my source of comfort. I also wanted to mention that not a lot of people mention what they do for pain in the immediate weeks following treatment. I just got over mine a couple of weeks ago and I actually was doing better emotionally during treatment because I was more comfortable. I am now decreased significantly on my meds, as my earlier post indicates, and I am getting burnt out from the severe pain. I had both chemo and radiation for the anal cancer. Lots of infections and currently have a bladder infection. I wonder when the light at the end of the tunnel will be. I really did not expect this and docs are not much support. Any thoughts at all would be tremendously apppreciated. Thanks and I do admit I admire all of your positive attitudes, including Joanne and Steve.

pjjenkins's picture
Posts: 173
Joined: Mar 2009

My radiation oncologist from the outset said that pain management is a key factor in getting through this ordeal. I was given what I needed and the control to determine how much pain med to take. There were, of course, guidelines but if I need more pain med, I was given the green light to take it. Since I was never hospitalized and my mate and our kids (adults) were my nurses, they helped and were great on the tracking ("Mom, you had n mg. in the last x hours").

The first weeks following treatment sure didn't feel like the "healing had begun" but within 3-4 weeks, I started easing off on the pain med and by 6-8 weeks later I rarely needed any more. These are rough recollections from more than two years ago but the pain has become a minor memory for me. I do know I used plenty of pain meds.

I suggest not letting pain get too uncomfortable!

Take heart... it IS getting better and you will get through it. My best wishes for you to experience it as going quickly- hindsight is much better than the time you are going through but don't let yourself hurt too much... I don't believe you have to.

Prayers and more positive thoughts winging there way to you.


Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Hi there

I'm on the colorectal board frequently but check in from time to time to see if I can add anything.

I saw your question on your port.

No blood draw could be an indication that the port might be clogged up. This has happened to me when I had my first port.

Schedule a port flush in Infusion and see if that clears it out. If it does not, there is some type of chemical that they put in there (like a Drano to clear clogged sinks). They inject the solution and it stays in for 24 hours and then you have to go back into Infusion and have it all flushed out.

If this does not work, then blood draws may not be able to be done through your port, but you would want to ask if chemo can still be administered.

Hope this helps you some.

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