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Waiting for reversal of trach and GT

lilybell
Posts: 8
Joined: Oct 2010

My name is Cheryl in California. I was diagnosed with laryngeal cancer in March of this year after 1 1/2 years of laryngitis and a little surgery to remove what my doc thought was a nodule. Pathology came back cancer. 2 weeks later my throat colapsed and I literally died. I woke up 4 days later out of a medically induced coma. They put in a trach and a GT. It seemed to take forever to get out of the hospital. I was there for almost a month. When I was discharged I went to a friends house where I had round the clock supervision by my friend, her daughter, my husband, and my mother. It was like this until I finished treatment at the end of June. I had 7 chemo (Cisplatin) and 35 radiation treatments. I was lucky and had very little side effects with the exception of overwhelming fatigue. I then moved back in with my spouse the second week of July. I have gotten my strength back little by little very day. I had my follow-up PET approx. 2 weeks ago. Report is that there is no cancer present now where there was cancer before. Still some evidence of inflamation that is residual from the radiation probably. I should be happy but I am still stunned by it all. I am still waiting for the reversal of the trach so I can go back to work. I want my life back. Today they changed my trach from a 6 to a 4 in progression to have the trach removed. I have to wear the plug on the trach for 72 hours before the doc will remove it. I still can't swallow anything so I am still completely on tube feedings. Can't reverse GT until I am completely on oral feeding for 30 days. That is a long way off. Just turned 50 in September but these circumstances have made me feel old before my time. I have been blessed with good doctors and great response to treatment, family and friends that have been super supportive, and coworkers that have donated time to keep my income coming in. Shouldn't I feel happy? I am really interested in how others have dealt with this situation. I welcome any input. Thanks.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

You have really been through a lot and sound like you are coming out the other side. My husband also has a trache and peg tube right now, is totally dependent on tube for all food and nutrition. We are hoping the trache comes out next week.

The good news, for him and for YOU is you have no evidence of disease! That is news to celebrate!

The recovery from this cancer treatment is a bear, but you can do it and come out the other side with a "new normal" (learned that phrase here) and go on and live a full life.

((Hugs to you))

Hondo's picture
Hondo
Posts: 5670
Joined: Apr 2009

Sometimes we have to be happy for just the little things that go well, PET showing no C is what I call great news. Also sounds like you have a lot of family and friends who care a lot about you, that really helps in the healing process.

Take care and welcome to our family on CSN

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

I know it is not simple and you have been threw alot with alot more to come. Ya have to crawl before walking, figuratively.

For what I call a simple fix for me is what my sister/sister in-law suggested was doing a thankful journal each day. Write down each more 10 thinks you are thankful for. The next day do not look what your wrote the day before, just make another 10 with it being ok that many are the same each day. I found after approx. 10 days I felt a turn around.

My simple thought and still use it after 14 plus years is "thank you for the sun rise, father"

Prayers for you that you can find a simple way to push you forward each day.

Bless all here on CSN

john

lilybell
Posts: 8
Joined: Oct 2010

Thank you. Your e-mail was like a big hug for me today. All this time I really didn't know where to go to discuss what I have been going thru.
Cheryl

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I wanted to keep track of you, and hope all is well, I am still trache less,but do have a few side effects, I had to outway these, and went without trach, i use sinus spray daily, and where they happily cuy in my throat 3 times have the constant tugging and tight feeling, they told mr stretching exercisies, sure???...my breathing is fine, I wish I could turn it up a little more, it gets a little short at times...and it slows me down for a minutes, then I continue, My dissability starts next Month, FINALLY, i managed to stay a float, I know what Sweet went through, very hard financial. Please keep in touch. Dennis

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I was diagnosed in May '09 with Supraglottic SCC laryngeal cancer - T3N0M0 and was treated with Cisplatin and 35 rads. I did not need a trach but did get the PEG tube for feeding. I am now one year post treatment for both cancers (I have NSCLC left lung also) and am still in remission. I can understand your asking "Shouldn't I feel happy". I think this is something many of us go through post treatment as we wait for our lives to return to normal.

We are all a little anxious to get back to our normal way of life but it doesn't happen overnight. You sound like you're doing great so far but you still have to wait and give your body a chance to heal. This could take a couple of months but you will get there. I found myself depressed shortly after my treatments finished and I think it was because I was too anxious, I wanted to be able to do more!! I felt pretty good, other than the fatigue, but still was unable to do many of the things I had done prior to treatment..I just didn't have the energy.

Give yourself time Lily and you will be back in the "rat race" of everyday life. Life does get better, you just have to be patient, which I know is hard right now.

Getting a clean PET is definitely a reason to be happy and celebrate.

Stay well and stay strong,
Glenna

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I remember wanting so badly to get back to "normal". I thought if I could just go to work all would be ok. On the Monday following my last rad treatment (the previous Friday) I went on a business trip from Alabama to Germany. Looking back I realize how dumb that was but at the time it seemed so important. What I did not know was the burning had closed off my ear's passageways and there was no way to equalize the pressure inside my era...to get that "pop". Got to Germany and couldn't eat 99% of what was available - that in itself was terrible; all that great food and I couldn't partake, so tired I spent most time in my room and scared the crap out of my employees by showing up 80 lbs lighter, bruned red and bald. I finally got back home and they inserted tubes in my eardrum to equalize the pressure.

I laugh at it now but then it wasn't funny. Oh well another day with "new normal"

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Cheryl,

Recovery can be a very slow process. Getting the NED is really great news. I still find it amazing how friends and family help when things are tough. You have to focus on the positive things in your life. Attitude aids in recovery.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Lily,

I just back tracked on my progress of recovery and I was just able to start back at work at about where you are now - though not at full capacity by any means. You had much heavier Chemo, and added drama with the trach and different location of the cancer with complications than I did. While there is no definitive time line, I would think you are doing fine for what you have gone through, and you should see continued improvement even though it is slow.

I think this slow pace of recovery can get us down, and I certainly hit a very low place and became clinically depressed at the earlier stages of my recovery. This is a common 'knock on' effect of this awful experience of cancer and the treatments. If you feel like you may need some support, you should talk to your Doctor as it is treatable and can help your recovery if this happens to be the case. I had no idea what was going on and would have bet my house that 'I' would NEVER be someone who suffered from depression ! Ha !

My Oncologist referred me to a Psychiatrist. We chatted for an hour and he gave me a couple of meds that helped me sleep and turned my mood around. While I did not really notice any rapid change, the feelings of loss, lack or future, and anxiety sort of faded, and the better parts of each day became longer and more noticeable, and the harder parts decreased in frequency and intensity, until they became insignificant. I might be way of track here Lily, but like you, I certainly had lot's to be happy about (survival, family, new baby son), but any happy feelings I should have had were somehow clouded by this trauma induced depression.

Keep us briefed with how you are doing. All of us here have had different experience and I hope you can find some peace knowing you are not alone. Know you will get through this, and the happiness will return. You might just need a little extra help right now, and if that may the case, please talk to your doctor.

One of your new buddies in recovery and now back into life.
Scambuster
1 year and 3 days out

lilybell
Posts: 8
Joined: Oct 2010

So since they put in the number 4 trach I have been able to wear the cap longer. Have hit the 50 hour mark. If I can make it thru to my doctor's appointment on Tuesday it will be taken out then. Keep your fingers crossed. Right now I don't even notice the cap. Have been doing everything I normally do. I might end up going back to work at the end of the month. Scared but excited. Will keep everyone updated.
Lily/Cheryl

lilybell
Posts: 8
Joined: Oct 2010

Hit the 72hour mark last night at 1900. Hopefullly trach for only one more day. I have been practicing swallow exercises. I fell like there is progress. Haven't had "food"since April. Looking forward to new experiences. Getting stronger every day.
Cheryl

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Keep us posted. As some one who went without food for 5-6 months, I am hoping you will be able to start eating soon!

Blessings,

Sweet

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