Off board for the past few weeks, but doing OK

Hard12Find
Hard12Find Member Posts: 218 Member
edited January 2013 in Head and Neck Cancer #1

Just checking in, I am almost 3 months post treatment and doing well. still only able to swallow thin liquids, and have wasted away to nearly nothing with the tube as my only source of nutrition. Even though I am tired most of the time I am contemplating a return to work (part time at first) because I reallly need the income. My Sister (SusieBwell) is doing good with her fight too...she will be finishing her treatments in a couple weeks. I have been lurking, and have been saddened by our losses, and of course the steady stream of newcomers. I thank you all for the support you have given me, seems recovery has been as hard as the treatment mentally. I am open to any ideas to help me put on some weight through the tube, I didn't do well with formula, so trying to do as much as I can with real food and instant hot breakfast cereals, but barely managing to hold weight if at all.

Best wishes,

Jim

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Calories...

    Anything with calories brother...

    If you can keep the Ensures, Boost or similar in you each have around 350 calories..., you need at least 2, 000 a day just to barely maintain.

    Yep, if the cancer doesn't get you the treatment will come close...

    Hang in there brother, your way down the hill from where you were..., good things should happen soon.

    Best ~ John

     

     

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #3
    Great

    Always to hear "good news". Of course our definition of good news changes as we progress through this journey. I hope you can manage working, not only for the income but for the sense of accomplishment. Working after cancer is indeed a milestone. Rick.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Hey Jim....

    I always wonder about people when they disappear, I'm glad you checked in!  Like John said, anything with calories....and if you can't do the formulas, and only using the tube, calories must be few and far between.  Can you do 4% milk?  It's fattening, and pours down a tube great....just got to do it often....supplement everything with it.  I'm sorry your swallower is still in a state of rebellion....Weight doesn't come easy even for those of us who have started eating....I've only gained 9 lbs since I finished treatment the end of August...and I really try!!

    Glad to hear sis is doing ok....only two weeks left?  YEAHHHH!!! Laughing

     p

  • cureitall66
    cureitall66 Member Posts: 913
    #5
    Treatment...

    Hi Jim,...(I reposted this as I saw you had two of the same posts) Laughing

    Glad you are doing well. As well as your sister. My loved one is 1 1/2 months post tx. He is SCC, BOT, HPV+, 2 lymnodes involved. TX was 7 weeks of Chemo (Carboplatin & Paclitaxel) & Rads, no surgery. We needed the PEG tube midway which was really a lifesaver. He was 230 going in and 190 now. Just regained some swallowing of liquids and soft foods (jello, oatmeal, pudding, smashed up peaches in light syrup). It has been a challenge right now with getting some "substance" swallowed as nothing tastes good and hard to tolerate eating...but we keep trying different things. Scrambled eggs are not a hit yet, but we keep trying weekly. Right now he is drinking lots of Ensure and Boost to keep up his calorie consumption. His stomach has been a little nausiated from time to time and I presume that is from the various changes that have occurred. Tube is planned to be out at the end of this month. He hasn't used it in about 2 1/2 weeks. He's excited about that!...but it's been and still is a challenge. 

    He is self-employed (desk/sales) and has been dabbing his toes back into work a couple days a week for a few hours. (over the last week). The pain and nausea sometimes get in the way, but we try to stay prepared and work through it. Very tired, achey, and pain is off and on. Depending on the demands of your job is what probably determines you ability to start and for how much time you can handle. Hope you do well.   

    I have also been saddened by the losses on here as well. But, I now everyone is different with their dx and tx and how their bodies react. We must take one day at a time as that's what the Lord gave us. Staying positive and reactive through our journey is the most important part. I know the mental part is tough, we have our ups and downs here as well. But we have a 10 second rule...as soon as we think of that nasty word, we remind ourselves that we thought about it for 10 seconds and now we move onto better things that are more important for our mind. Easier said than done...but that's what we strive to do. 

    Congratulations on getting through the toughest part of the journey and blessings for you to continue with your recovery.   

    ~Cureitall- Cris    

  • VanessaSLO
    VanessaSLO Member Posts: 283
    #6
    I'm glad you're doing well...

    My dad is 4 months post treatment... He finally started to feel a bit better - the pain inside his mouth (on the base of his tongue where the tumour was) is not that strong anymore. His is not that much fatiqued either. But he still eats pureed and mixed food. He does not have PEG (he never had it). So it does get better with time. His first bigger noticeble improvement was right after New Year when he was a bit more than 3 months post tx.

    So, hold on and keep doing well!!

  • Greg53
    Greg53 Member Posts: 849
    #7
    VanessaSLO said:

    I'm glad you're doing well...

    My dad is 4 months post treatment... He finally started to feel a bit better - the pain inside his mouth (on the base of his tongue where the tumour was) is not that strong anymore. His is not that much fatiqued either. But he still eats pureed and mixed food. He does not have PEG (he never had it). So it does get better with time. His first bigger noticeble improvement was right after New Year when he was a bit more than 3 months post tx.

    So, hold on and keep doing well!!

    Wasted away.....

    Jim,

    I know we are all different but I can definitely relate to “wasted away to almost nothing”.  I was 215# before tx.  Due to a bad gag reflex and the nasty mucus (and a LOT of throwing up), I lost 30% of my weight – down to 150#.  If I could keep 1 out of 5 cans down when I PEG’d them I was lucky.  At end of tx I was skin and bones.  I was exclusively on the PEG for 2 months after tx due to mouth sores, etc.  But I did drink water and eat ice chips to “keep the swallow”.  

    As for suggestions, like John said – anything with calories!!  First thing that I could get down easy was cream-of-wheat with a ton of butter and a gallon of syrup.  But generally I started slowly and it took time but little by little I gained weight back.  Exercise certainly helped and working out came slowly also, but I think played a role in gaining weight back to a nice level.  3 years out and I’m at 180# and feeling great. 

    Give it time, it will come back.  Keep that positive attitude!

    Greg

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    I like p51's 4% milk. Cream on!

    Jim,

     

    I am glad you are still kicking and getting better all the time.  Also, let your sister know we are thinking about her journey and hope the best.

     

    As for calories (lived on smoothies for 7 months), I always threw in a splash of canola oil.  Lucky for me it was summer time and I fell in love with tomatoes drenched in olive oil with salt, pepper and cayenne.

     

    You just have to think outside the box, experiment, try things.  Believe me I know from which you eat (me make sense).

     

    Best,

     

    Matt

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
    CivilMatt said:

    I like p51's 4% milk. Cream on!

    Jim,

     

    I am glad you are still kicking and getting better all the time.  Also, let your sister know we are thinking about her journey and hope the best.

     

    As for calories (lived on smoothies for 7 months), I always threw in a splash of canola oil.  Lucky for me it was summer time and I fell in love with tomatoes drenched in olive oil with salt, pepper and cayenne.

     

    You just have to think outside the box, experiment, try things.  Believe me I know from which you eat (me make sense).

     

    Best,

     

    Matt

    Hi Jim!!!

    So glad to see you post.  Sorry for the rough time, it will get better.  I had my feeding tube from Nov 2011 till June 2012.  The last month I did not use it much.

    I was able to eat soft scambled eggs or eggs over easy pretty well.  In fact it was my staple food besides the formula.  I also took in 100% Whey protein.  That may help.  The ensure was rich or me, so I would dilute it with skim milk and that seemed to help as well.

    I felt HORRIBLE for a solid month after rads, for another month after that I still did not go back to work, the 3rd month after rads I went back to work, but I tell you I was wore out and felt rough much of the days.  As a manager I could give others things to do so my workload was not too hard.

    I've been thinking / praying fo your sister on my nightly prayer list and was also wondering how her Lorne (the other names slip me for the moment) were doing....so be sure and tell her we got her tucked in our pocket!

    Best,

    Tim

    PS Still have you on the list as well my friend. :)

  • Billie67
    Billie67 Member Posts: 898
    #10
    Tim6003 said:

    Hi Jim!!!

    So glad to see you post.  Sorry for the rough time, it will get better.  I had my feeding tube from Nov 2011 till June 2012.  The last month I did not use it much.

    I was able to eat soft scambled eggs or eggs over easy pretty well.  In fact it was my staple food besides the formula.  I also took in 100% Whey protein.  That may help.  The ensure was rich or me, so I would dilute it with skim milk and that seemed to help as well.

    I felt HORRIBLE for a solid month after rads, for another month after that I still did not go back to work, the 3rd month after rads I went back to work, but I tell you I was wore out and felt rough much of the days.  As a manager I could give others things to do so my workload was not too hard.

    I've been thinking / praying fo your sister on my nightly prayer list and was also wondering how her Lorne (the other names slip me for the moment) were doing....so be sure and tell her we got her tucked in our pocket!

    Best,

    Tim

    PS Still have you on the list as well my friend. :)

    Jim
    I've had a hard time gaining my weight back also. I started out very thin (by nature) with no extra to spare. I lost only a total of 13 pounds but for me that was too much!! I've been out of treatment for 6 1/2 months and only gained 2 lbs so far, I hate it!in my case I'm able to each most anything at this point but the weight is still hiding out somewhere???
    Anyhow I wanted to tell you that trying to swallow even little bits of of anything is great but keep using your tube. My nutritionist told me (since I was getting sick from the cans) to put very puréed soups into my tube. Cream soups are high in calories. Maybe that will help you a little more than the formulas. Just make sure to flush your tube, I used soda water after pouring soup down there, followed by water or gatoraide .......calories!
    Good luck to you, and yor sister!
    Billie

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