12 Days

stevenl
stevenl Member Posts: 587
edited March 2014 in Head and Neck Cancer #1
Hi Everybody,

I have been following along with all of the posts but not writing much and I apologize for that. I am still typing challenged (2 finger typist), and it just takes me a long time to type everything I want to say.

With that being said, almost all of the posts here are gloomy and doomy. We must not let the newcomers forget that it ain't all bad. Yes while we all have setbacks and problems, we have all also over came a great deal. I had my own setback when I had to enter the hospital for the nausea. Only now do I see that as not being a setback, but a reprieve, a way to slow things a little so my body could recoup somewhat.

Same thing with the rad machine breaking down. At first I was mad because I thought it just prolonged the agony. Oh how wrong I was. These were all things that happened to give my body a chance to catch up, if you will. And every bit of it God directed I believe with all my heart.

I finished my treatment April 9th, and while I have a lot of nasty symptoms, mucositis, terrible sore throat, can't hardly smell food without becoming sick, fatigue, weight loss of 49 pounds according to my scale, debilitating pain in my right shoulder, where they sacrificed a nerve during the neck dissection. Have to feed myself at night through my tube,I DON'T CARE, I AM STILL ALIVE!!!

With all this one would think I would be knockin on Heavens door. But I'm not. Nor will I be. April 11th, I proceeded to hook up my 5th wheel and take it to the track
to witness some nascar action this past weekend. No, I did not feel my best and the races were rained out sat. and sun. I had to stay there until Monday and watch 2 races. Now the reason I am writing this is to let people know, it ain't all bad. Yes treatment is hell, but life and light is at the other end of the tunnel!!!!

So everybody hang in there. For some it is not hard to go through this, but for some it is almost impossible. It can be done. As Kent would say, Believe.

Best to all,
Steve

Comments

  • Glenna M
    Glenna M Member Posts: 1,576
    #2
    Well said Steve
    Steve, glad to hear you are getting your positive attitude back ;-) I agree with the gloomy news scaring the newcomers but I can understand the need to post when you are down or scared. If we didn't have each other here to say these things to then who would we cry to. Most of us rely on each other here to vent, cry or just babble - LOL.

    I really enjoy the good news here so I make sure to tell everyone when I get a good scan. I don't know if you read my latest report - last scan of my lung - they couldn't find the tumor anymore, if it's still there it is hiding somewhere - LOL. The laryngeal cancer is also in check and I am now my fourth month of remission. For me, it doesn't get much better than this and I am still floating on a cloud.

    To all of the newcomers. PLEASE do not read just the gloomy posts that may scare you, we all have bad times during our treatments and come here to vent or see if our side effects are normal. There are happy posts here also that will encourage you and give you hope. My story is a perfect example of how quickly things can change. I was given a bleak diagnosis and prognosis eleven months ago after they discovered I had NSCLC in my left lung and SCC of the larynx. Both were different cancers not mets. I am here today to tell you the road to recovery can be hard but it is worth the fight. I am now in REMISSION - WOOHOO!! I thank my cancer team and God everyday for giving me my life back. I can now look forward to my grandson graduating from high school and feel confident that I will still be here and going strong. Just BELIEVE!!!

    Thanks for the post Steve. We do need to remind the newcomers occasionally that all is not bad and it is worth it.

    Stay strong and keep smiling,

    Glenna
  • Ann_Burt
    Ann_Burt Member Posts: 10
    #3
    Never give up
    I don,t get on here much except to read but I do agree with you About keeping a positive attitude.Even though my husbands out come is not looking very bright right at this time there are so many on here who can and will win this battle.And even with my husbands not good news we are not giving up hope.Because doctors can and do make mistakes they are after all only human.So I am calling the university of chicago to set up and appointment for burt today for a second opinion.Burt has never quite anything in his life and he,s not about to start now. You are all in my prayers Ann
  • micktissue
    micktissue Member Posts: 430
    #4
    Thanks Steve
    Thanks for that perspective Steve.

    Best,

    Mick
  • pk
    pk Member Posts: 192
    #5
    Hi Steve
    Haven't been on the sight for a long time, We were on St. Simons Island and took a vacation from cancer only to be called back early due to the sudden death of our nephew.

    Anyway,I love your post. Recovery is a b----!!!! But recovery does happen!!! Bob, my hubby, will have his 6 mo. PET next week. He is doing just great!!! Lots of energy, eating well(taste is still alittle off), maintaing his weight now,looks great-even pretty cute with his white curly hair and tan(the girls have been noticing). We are remaining optomistic!!!!

    WE ARE SO HAPPY THAT YOU TOO ARE ON THAT RECOVERY ROAD-
    Phyllis & Bob
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    pk said:

    Hi Steve
    Haven't been on the sight for a long time, We were on St. Simons Island and took a vacation from cancer only to be called back early due to the sudden death of our nephew.

    Anyway,I love your post. Recovery is a b----!!!! But recovery does happen!!! Bob, my hubby, will have his 6 mo. PET next week. He is doing just great!!! Lots of energy, eating well(taste is still alittle off), maintaing his weight now,looks great-even pretty cute with his white curly hair and tan(the girls have been noticing). We are remaining optomistic!!!!

    WE ARE SO HAPPY THAT YOU TOO ARE ON THAT RECOVERY ROAD-
    Phyllis & Bob

    Great to hear
    Glad to hear you are where you are, Steve, and moving forward. Weeks and months to follow- things will get better, and I know you will appreciate the improvement, and all else. You've done battle with the C, along with that fine lady of your's, and have made it up around that last bend in the road to see just how exceptional the end of treatment's rough road can be. Yeah, a smaller battle(s) continues, but you've left the big one in your dust, my friend. My last rad was 4/13/09, and your's was 4/9. Hopes and Prayers that your recovery is as good as mine has been (minus the teeth problem), and that the months and years to follow, for you, really are great: you earned it, bigtime. Remember, Steve, and continue to...

    Believe

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Hi Steven


    All so true, as bad as cancer may be there is still life after treatment and it is just as good.

    All the best to you
  • MaryRC
    MaryRC Member Posts: 114
    #8
    Hondo said:

    Hi Steven


    All so true, as bad as cancer may be there is still life after treatment and it is just as good.

    All the best to you

    Hi Steven
    I am so glad you are finished with your treatments and are on the road to getting your strength back, and your weight back. So wonderful!
    Been thinking of all of you on here, I do come back and check out the posts. I am still having alot of pain from my neck dissection, 24/7. But this will pass. I lost one of my clients, because of my surgery, they said I couldnt to it, since I might get hurt. I found out I can go back to work part time ( after May16th) and still collect partial SDI. At least the one family wants me to come back!Still I can handle it all.
    All the best to everybody!
    Mary
  • thegirlfriend
    thegirlfriend Member Posts: 142
    #9
    oh Steve!!
    Finally I get to offer something that just sort of feels more helpful.
    You cant smell food without getting sick to your stomach?? I can tell you this.
    I used to have to go out to find something to eat for my dinner when I went up to visit
    my boyfriend Paul. He could smell nothing without getting sick to his stomach.
    Food was the worst though, so he wasnt able to cook for me, which he loves to do, i couldnt bring anything home to eat, because of the same thing. I would go out, eat out, eat inside the restaurant so as not to stink my car up if we both went somewhere in it later, would drive back with the windows down, in case the restaurant odor landed on me, so to speak, so i could air off. Then when I got back to his house, id go straight to the bathroom, and brush my teeth, and shower if necessary and/or change clothes. I didnt want to do anything to make him feel worse than already. Wouldnt you know it, i can tell you, that is one of the things that he has gotten passed. Yes there are a very few things that have changed or gotten better.
    He smells everything now without nausea! Been that way now for about 2 1/2 months. He loves the smell of food again, only now of course, he finds it a big fat tease. But I remind him that he can cook for me and see me enjoy his food again, without cause for concern in getting sick to the tummy. It will go away!! It will!!

    Kathy
    thegirlfriend
  • delnative
    delnative Member Posts: 450
    #10
    thegirlfriend said:

    oh Steve!!
    Finally I get to offer something that just sort of feels more helpful.
    You cant smell food without getting sick to your stomach?? I can tell you this.
    I used to have to go out to find something to eat for my dinner when I went up to visit
    my boyfriend Paul. He could smell nothing without getting sick to his stomach.
    Food was the worst though, so he wasnt able to cook for me, which he loves to do, i couldnt bring anything home to eat, because of the same thing. I would go out, eat out, eat inside the restaurant so as not to stink my car up if we both went somewhere in it later, would drive back with the windows down, in case the restaurant odor landed on me, so to speak, so i could air off. Then when I got back to his house, id go straight to the bathroom, and brush my teeth, and shower if necessary and/or change clothes. I didnt want to do anything to make him feel worse than already. Wouldnt you know it, i can tell you, that is one of the things that he has gotten passed. Yes there are a very few things that have changed or gotten better.
    He smells everything now without nausea! Been that way now for about 2 1/2 months. He loves the smell of food again, only now of course, he finds it a big fat tease. But I remind him that he can cook for me and see me enjoy his food again, without cause for concern in getting sick to the tummy. It will go away!! It will!!

    Kathy
    thegirlfriend

    Oh, Girlfriend!
    Your post sure brought back some memories.
    When I was getting over my treatment (rads and chemo), my sense of smell got acutely, outrageously sensitive. I've always had a really good sniffer anyway, but this was ridiculous. I could smell things you don't even want to smell. My nose was so good that they could have put me on duty sniffing baggage in the airport.
    Anyway, one night my wife cooked herself some shrimp. Now I love shrimp, but that smell was just so much it blew me out of the house. I went through the entire house, first and second floors, spraying room freshener. That stuff was overpowering to me, too, but at least it drowned out the shrimp.
    I took a month or two after treatment for my nose to get back to normal. And boy, am I glad that's over!

    --Jim in Delaware
  • Scambuster
    Scambuster Member Posts: 973
    #11
    delnative said:

    Oh, Girlfriend!
    Your post sure brought back some memories.
    When I was getting over my treatment (rads and chemo), my sense of smell got acutely, outrageously sensitive. I've always had a really good sniffer anyway, but this was ridiculous. I could smell things you don't even want to smell. My nose was so good that they could have put me on duty sniffing baggage in the airport.
    Anyway, one night my wife cooked herself some shrimp. Now I love shrimp, but that smell was just so much it blew me out of the house. I went through the entire house, first and second floors, spraying room freshener. That stuff was overpowering to me, too, but at least it drowned out the shrimp.
    I took a month or two after treatment for my nose to get back to normal. And boy, am I glad that's over!

    --Jim in Delaware

    Sniffer !
    Jim,

    You are a crack up. Like I just imagine you clambering over the luggage carousel sniffing my bags. About all you would find these days is some gnarly socks !

    I didn't get the super sensitive nose deal. I do recall of recent time how the last week or so of treatment I was burning up something fierce. Funny how we forget. I was hospitalized all that time so I had about 3 of those freezer cold pack compresses rotating in and out of my minibar fridge in my room. Not pleasant memories. It may have been a reaction to being on morphine so long or just some reaction to too many Rads ??

    Steve, Glad to hear you are doing so well. Man I was still in very bad shape on the same time line as you. It's great you are out and about and having some 'normal' experiences and also being a great sign to the newer folks that this **** can be kicked back.

    I hope Mick Tissue os doing OK as I haven't heard much of Mick lately. I gather he may being moving slower on the recovery side. if you're out there Mick, give us all a quick yell. Your recovery symptoms sounded more like mine and I know it ain't a nice place to be right now. I hope you start to climb out of bad patch soon. Let us know how you're going.

    Cheers to all
    Scam
  • Kimba1505
    Kimba1505 Member Posts: 557
    #12
    Selective reading
    Steve,
    Thanks for your post for us newbies. I am careful about what I choose to read. Right now, being at the beginning of this process, I read the posts that look "safe"...for lack of a better word. I know I need to keep my head in a positive place, but also be well informed. Like I have said many times in my posts...what I have read here has put me in a strong, positive, well informed place as I talk with the doctors, my partner, friends and family. Because of what I have learned here, I have not heard anything with docs that I did not expect to hear. That way my anxiety has remained low which only communicates strength to my partner. No worries here about what you all are posting...just keep writing and responding. It is a life-line for me.
    Kim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    Kimba1505 said:

    Selective reading
    Steve,
    Thanks for your post for us newbies. I am careful about what I choose to read. Right now, being at the beginning of this process, I read the posts that look "safe"...for lack of a better word. I know I need to keep my head in a positive place, but also be well informed. Like I have said many times in my posts...what I have read here has put me in a strong, positive, well informed place as I talk with the doctors, my partner, friends and family. Because of what I have learned here, I have not heard anything with docs that I did not expect to hear. That way my anxiety has remained low which only communicates strength to my partner. No worries here about what you all are posting...just keep writing and responding. It is a life-line for me.
    Kim

    Positive Knowledge
    Like you Kim, when I was going through treatment especially, I only wanted to hear positive experiences.

    I had a lot of people that wanted to share their experieinces or relatives stories. I didn't want ot be rude, but I always told them upfront, "If it doesn't end positive, I'd rather not hear it now"...

    I only wanted to surrond myself with positive stories and positive thoughts. I know that real world, that all things aren't that way, but I wanted my world to be that way during that time. Positive feelings, positive thoughts, positive people....

    Surround your selves with that.

    Faith, family and friends....

    John
  • Hal61
    Hal61 Member Posts: 655
    #14
    Good Job With Two Fingers
    Thanks Steve, for bringing up what I've also considered lately. A lot of people with things going well don't post the information as much as those with problems to solve or pains to relate. But your take on setbacks, and your great humour overall show we can all use a dose of the cold good news that comes with treatment. No telling what you might come up with if you could get another finger on the job. Thanks very much.

    Hal61
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #15
    Hal61 said:

    Good Job With Two Fingers
    Thanks Steve, for bringing up what I've also considered lately. A lot of people with things going well don't post the information as much as those with problems to solve or pains to relate. But your take on setbacks, and your great humour overall show we can all use a dose of the cold good news that comes with treatment. No telling what you might come up with if you could get another finger on the job. Thanks very much.

    Hal61

    The Positive
    John's post hit the nail on the head- stay Positive. That's how one moves forward into treatment, during, and post-treatment. Dwelling on the negative serves no good purpose. Yes, we all must recognize the physical negative to the extent of doing what we can to improve the bad physical symptoms, by diet or with meds, etc.; but, mentally, the best way to travel our road is by staying focused on the Positive, and knowing we will survive this drive. Sure, this sounds simpler than it is, but it can be done. Stay Positive.

    Believe

    kcass

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