Lacking confidence after treatment
Comments
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Hang in there Connie & Homer
Homer, What you speak of sounds very normal. I think most will agree you are so releived treatment is over, but then it hits you that you are not going to the treatment facility every day and you mind starts to question if you are doing anything to fight the ugly C. I think most have this experience, and depression sets in. I am out of treatment 6 mo now, and I still have days I have to fight this. It does get better, as does most things she has expereinced. As far at the pet scan, I have not had one either. I do get the office visit exam by my ENT every 2 months. The last visit he saw no evidence of diesease. I return again in June. Scar tissue from the treatment can (and most probally) read as a hot spot on the pet scan. It is my understanding that they would do a pet/ct scan and look closely at the pet scan hot spots on the ct scan for any sign of tumor growth. The only thing the PET scan could show in certainy if the cancer has spread beyond the treated areas. As far as the feeding tube, I did not have one, so I can not give any advise on this. I am sure sweets would be happy to share with you her experience and give you any advise. Tell Connie to hang in there. For whats it worth, I get up each morning and thank GOD for all he has blessed me with. I ask him to bless each and every person on this board, and I TRY to live each day as it was my last. I will go one day, maybe today, maybe tomorrow, but I dont want to look back and regret I didnt live yesterday to it fullest.Connie is also blessed to have such a good care taker. I too have that blessing in my life. Debbie0 -
She is right where she is supposed to beDJG1 said:Hang in there Connie & Homer
Homer, What you speak of sounds very normal. I think most will agree you are so releived treatment is over, but then it hits you that you are not going to the treatment facility every day and you mind starts to question if you are doing anything to fight the ugly C. I think most have this experience, and depression sets in. I am out of treatment 6 mo now, and I still have days I have to fight this. It does get better, as does most things she has expereinced. As far at the pet scan, I have not had one either. I do get the office visit exam by my ENT every 2 months. The last visit he saw no evidence of diesease. I return again in June. Scar tissue from the treatment can (and most probally) read as a hot spot on the pet scan. It is my understanding that they would do a pet/ct scan and look closely at the pet scan hot spots on the ct scan for any sign of tumor growth. The only thing the PET scan could show in certainy if the cancer has spread beyond the treated areas. As far as the feeding tube, I did not have one, so I can not give any advise on this. I am sure sweets would be happy to share with you her experience and give you any advise. Tell Connie to hang in there. For whats it worth, I get up each morning and thank GOD for all he has blessed me with. I ask him to bless each and every person on this board, and I TRY to live each day as it was my last. I will go one day, maybe today, maybe tomorrow, but I dont want to look back and regret I didnt live yesterday to it fullest.Connie is also blessed to have such a good care taker. I too have that blessing in my life. Debbie
Hi Homer
Don't fret too much over the PET. I am 22 months post treatment and had CT tests On Monday. I have never had a post treatment PET. Personally I think each test has it's place and is good at detecting different sizes and shapes and each one has it's own limitations. I am comfortable with the CT test as it has better size detection parameters, that is , it can find smaller stuff. The PET is more of a confirmation test and also very useful in setting up the radiation fields by use of an overlay. Again, they are all useful.
Connie will get better my friend. She is still to recent in treatment. My red blood count is slightly off normal and again I'm 22 months out. Her energy levels would be closely related to red blood production. Her whites and ability to fight infection are also low. It takes time Homer.
mentally having a damn tube in your stomach can be depressing and I fully understand her "days are numbered comment" It's hard to see progress because it can be so slowwwwwwwwwwwwwwww! An anti depreesant really helps during this time as well as a walk in the park with her or around the block.
Hang in there as I think both of you are doing a tremendous job and will soon begin to see progress, just measure it slowly.0 -
Homer & Connie
Like mentioned, she is right where the norm is at this time. The PET tends to be more accurate 4 - 6 months out. Some MD's like to do them early as a base case scenarion. But often they show resisdual which tends to bring on anxiety and nerves big time.
If she's getting scans and checked out by her MD's and ENT sounds like she is right on schedule and doing well....
It's really hard to balance the confidense thoughts. I think we all have a learning curve on that considering what we have been through.
Thoughts amd Prayers,
John0 -
Still Cooking?
Hi Homer,
I can't add much to what has already been discussed. Yes, the PET Scan should be done after several months, like mentioned above, around the 6 month mark after the last treatment.
Please remind Connie that we all go through a period of time known as the "Cooking Stage/time ". This is the accumulation of all the treatments adding up and remaining in our bodies for a period of 4-8 weeks after the final treatment. As it has been mentioned before on here, we all react differently and at a different pace. So, by looking at your post, Connie can still be in the Cooking part of this stage before the recovery starts. I was lucky in one sense as my taste buds started to wake up in weeks 4 or 5 and I would have one good day per week at first, then 2 days per week.
Yes, the PEG tube can be bothersome, and you just don't feel like yourself and start to wonder if you will ever get rid of it. Please let her know that it will come out after she is eating. Her throat may still be a bit swollen from the RAD's.
My Best to Both of You and Everyone Here0 -
Normal
Homer and Connie,
I would say that Connie is right where she is supposed to be.
I know it is hard, but try to remember that she did just finish radiation treatments. I can speak from experience that radiation is harder than it looks. It saps your energy and makes you sore in places you didn't even know you had.
The PEG issue aside, again, radiation can also play havoc with appetite. Some days you have it and other days you don't. Sometimes eating is seen as a chore and not the enjoyable experience it should be, especially with a peg.
As for reminding your wife to try to keep a positive attitude? Please don't ever tell a cancer patient that. You'd be surprised at how many times when we are asked how we are feeling we say "fine" because we know that is all anyone wants to hear. Your wife wants to be "normal" again, not just for herself, but for you too. Trust me, anyone fighting any kind of cancer, regardless of type, who is happy 24/7 ain't rowing with both oars in the water. Her feelings of negativity are normal. It is a normal part of the process that she ~ and all of us ~ go through. Remember, sometimes success is simply getting out of bed or deciding what to wear.
Teresa0 -
Hi Homer
Glad to hear that the CT is showing a good report. If you are seeing Dr. Hanna at MD Anderson more then likely he will not do a PET or MRI until she is 6 months or so from last Rad treatment. The most importance thing is that he is looking and scoping her nasal passageway. All I can say about MD Anderson they are like Allstate, you are in good hands.
Weight sometimes takes a quite a few months before it starts to come back and like you said sweetblood has some very good food recipes. Hang in there you are both doing great at this point, and tell Connie don’t worry just put is all in Gods hands.
All the best to the both of you
Hondo0 -
I still have not had a pet scan
I was diagnosed with stage 4 cancer in my tongue and lymphnodes in July 2010 and had 2 neck dissections and 95% of my tongue removed and replaced with a part of my thigh. I had another surgery in March to reduce the size of my new tongue and asked for a pet scan and he said i did not need one he x rayed my lungs and said that was good enough. That if my cancer would spread that is where it would go. I would feel better if i had a pet scan though. David0 -
It's a slow process
Hey Homer,
I finished up December 28th and still haven't had my first PET/CT as my doc doesn't want anymore radiation in me until everything else is gone. I just had an MRI today but other than that no scans since treatment ended. So, nothing to worry about there. As for Connie being down; well that's just kinda how it is. She's been through a lot. If she wasn't a bit down that would be weird. Make sure she's talking to her docs about this though and seeing the therapist at MD Anderson would be a good idea. Possibly they might recommend some antidepressants which are perfectly appropriate at this time.
For me; getting more calories in my body helped me feel better all over almost instantly. I went from about 2000 daily to almost 3000 daily and noticed a huge difference. It was a lot of work getting all those calories in but well worth it. I always recommend organic plant based foods and to stay away from those canned corn syrup and maltodextrin formulas that Nestle makes. Maybe it doesn't seem strange to anyone else that a candy company makes food for cancer patients but it does to me. And you're right; eating the same thing every day is not so good. I recommend getting a Vitamix and making your own food for Connie that has good healthy ingredients in it. It would certainly be more work but I think you would notice that she feels better real fast. Ask for help if you need it from whoever you can. Most friends and family are happy to help when asked and given something useful to do.
Hang in there Homer. You're a good man for taking such good care of your wife. It will get better. All my best to you and Connie,
Bob0 -
Pet/ct scanDav1965 said:I still have not had a pet scan
I was diagnosed with stage 4 cancer in my tongue and lymphnodes in July 2010 and had 2 neck dissections and 95% of my tongue removed and replaced with a part of my thigh. I had another surgery in March to reduce the size of my new tongue and asked for a pet scan and he said i did not need one he x rayed my lungs and said that was good enough. That if my cancer would spread that is where it would go. I would feel better if i had a pet scan though. David
I had a combined Pet/ct scan around 9 month's post treatment as my Dr. suggested. It showed
two spot's in my lower left lobe of my lung & one under my chin. This was done at a private clinic & at my cost.I had to wait three month's as we had nothing to compare as the size was so small. At the three month mark I had a cat scan to compare & nothing showed up. I lived through hell for three month's. But what could I do! I did have the end of a chest cold when they ran the test. I almost went nut's. I had my tube in for over 6 months & by
then I was eating very well. Milk shake's with fruit & soft food. This is such a slow process & I found that just going slow & steady worked for me.The more pressured I felt the worse it was for me. Remember we all had different treatment, chemo & rad's.Some had neck dissection's & other operation's.Plus some can handle more than others both physically & mentally. It takes time.0 -
It's still very soon for Connie.
She's only been out a few weeks, so it will still not be easy at this point. A few weeks out was the very worst time for me in fact. That was when I got so sick and lost all my weight. She is just past the point where she has stopped cooking.
It's too soon IMO for a PET Scan. My doctors wouldn't even consider it before 4-5 months past rads. Don't forget, I also haven't ever had a PET since I finished rads. It will be my 2 year anniv on 5/15/11. Dr Yuman just has me do chest X-rays as well.
As far as food and nutrition, she will get there. Remember, I didn't eat any food by mouth for nine months. I'm sure she will be able to eat some things in a few weeks maybe? Also, you don't need a healthfood store. I basically get everything I need at the regular store. I just throw all kinds of fruits and veg in my HealthMaster. Getting in some better, real food instead of canned nutrition can make her feel so much better. Like adventurebob's feed tube mix on the superthread or I can share many smoothie recipes. I will PM you and we can 'chat' if you like.
Look out for depression at this time too. It can be all too common.0 -
Positive Attitudepalmyrafan said:Normal
Homer and Connie,
I would say that Connie is right where she is supposed to be.
I know it is hard, but try to remember that she did just finish radiation treatments. I can speak from experience that radiation is harder than it looks. It saps your energy and makes you sore in places you didn't even know you had.
The PEG issue aside, again, radiation can also play havoc with appetite. Some days you have it and other days you don't. Sometimes eating is seen as a chore and not the enjoyable experience it should be, especially with a peg.
As for reminding your wife to try to keep a positive attitude? Please don't ever tell a cancer patient that. You'd be surprised at how many times when we are asked how we are feeling we say "fine" because we know that is all anyone wants to hear. Your wife wants to be "normal" again, not just for herself, but for you too. Trust me, anyone fighting any kind of cancer, regardless of type, who is happy 24/7 ain't rowing with both oars in the water. Her feelings of negativity are normal. It is a normal part of the process that she ~ and all of us ~ go through. Remember, sometimes success is simply getting out of bed or deciding what to wear.
Teresa
Not sure that I personally agree with your positive attitude statement, but that's just me...
Yes, we definitely don't always maintain a positive attitude, nor probably want to hear "Keep a positive attitude". But that re-enforcement is important.
Keeping a positive attitude is huge....
To me it's vital, I've seen so many miserable people with negative attitudes and it's carried through to their recovery, healing, family and just the people around you. I just think keeping a positive attitude expedites healing.
Again, everyone is different, what works for some doesn't for others...
Best,
John0 -
Post Treatment
I have been absent for a while but still want to stay connected with all my friends, many of whom supported me, the caregiver, during Buzz's treatment and recovery. Homer, could Connie be experiencing clinical depression? It is possible given all she has been through. Buzz needed a bit more than 2 months before he started eating. As for what to put in the PEG tube, our nutritionist recommended we only use the canned formula in the feeding tube. Connie may need a more concentrated formula to gain weight but you need to talk to an expert on this. Buzz had his PET scan only two months after the end of treatment and it showed something "new." The radiation oncologist felt the scan was done too soon and that this questionable area was most likey inflammation from the radiation. The medical oncologist had ordered the scan. My best to you and Connie as you both continue this journey. Karen0 -
Depressionbuzz99 said:Post Treatment
I have been absent for a while but still want to stay connected with all my friends, many of whom supported me, the caregiver, during Buzz's treatment and recovery. Homer, could Connie be experiencing clinical depression? It is possible given all she has been through. Buzz needed a bit more than 2 months before he started eating. As for what to put in the PEG tube, our nutritionist recommended we only use the canned formula in the feeding tube. Connie may need a more concentrated formula to gain weight but you need to talk to an expert on this. Buzz had his PET scan only two months after the end of treatment and it showed something "new." The radiation oncologist felt the scan was done too soon and that this questionable area was most likey inflammation from the radiation. The medical oncologist had ordered the scan. My best to you and Connie as you both continue this journey. Karen
Homer,
Before this journey began for me I was 235 lbs. Now I am 180. My strength is still gone. They had to sacrifice a nerve that went to my right shoulder and while I am working diligently at my physical therapy, it will never be the same. I did fall at one time to 168 lbs. I always have tightness in my neck. I would look in the mirror and did not know who it was looking back at me. But I think Connie is where A lot of us were at the point she is now. I did and still do suffer from depression. It's not manic it is mild. I am 13 months out of treatment now, and I am accepting the new me. I gotta tell you, it ain't bad still being around. I guess my point is, shes going to have some rough times for a while. But remember, she will improve. Some of the best advice I got was from Marine E-5 when he told me to measure improvement in weeks not days.
All the best,
Steve0 -
PositivitySkiffin16 said:Positive Attitude
Not sure that I personally agree with your positive attitude statement, but that's just me...
Yes, we definitely don't always maintain a positive attitude, nor probably want to hear "Keep a positive attitude". But that re-enforcement is important.
Keeping a positive attitude is huge....
To me it's vital, I've seen so many miserable people with negative attitudes and it's carried through to their recovery, healing, family and just the people around you. I just think keeping a positive attitude expedites healing.
Again, everyone is different, what works for some doesn't for others...
Best,
John
Positivity is very important. But so is addressing the gamut of emotions that we face: fear, anger, denial, acceptance, grief, positivity. We feel them more than once and go through the different stages more than once.
I am one of the most positive people I know and yet I still get down. Things in our lives are so out of control especially during the "active" stage of going through treatment. Sometimes being able to control our emotions feels like the only thing we have control over.
Just remember that the times that your wife does feel "down" or "sad" is normal. It doesn't mean that she will always feel this way, it just means that is how she is feeling at the moment and it is also important to acknowledge those feelings as well.
My prayers are with you both.
Teresa0 -
Thanks for ALL the advise!!
I appreciate the heartfelt response from everyone. I'd rather not say this but I cried when I read them. We have had new developments after Connie's ct scan and I have posted a new question. Your friends, Homer & Connie0
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