Halfway through XRT

PJ47
PJ47 Member Posts: 376
edited December 2013 in Head and Neck Cancer #1

Hanging in after a second g-tube placement Monday that caused my BP to drop so low they could not get a reading on 3 BP machines and they kept me until 6 pm Monday so I missed my XRT that day.  I was really leaning towards just having an NG tube placed for 4 weeks but the MD talked me out of that.

The pain level was a 10 and my stomach was in spasms most of the night.  Slept in recliner and took Rpxycodone 5ml. which took the pain down to about a 7.  Could not move without pain so this time I took the pain meds and phenergran so I would not throw up.  Took a tylenol last night and went to bed at 9:30 sitting up in bed with hot water bottle on stomach.  Woke up at 7am in the exact same spot!  It was like I froze in place, wierd.  After about 10 minutes, I managed to get out of bed and of course with nothing for pain it hurt like crazy.  At least the spasms are gone.  I am bandaged and do not want to look at it this time as 2 weeks ago it was loose and I had to go to the er and be admitted and tortued.  

So, now the latest is that they are supposed to bring me supplies and a nurse from home health is to come change the dressing and teach me how to care for the tube.  Yesterday, I had to call the Md's office several times to get this going and then the company called me back to say Cigna does not cover the nutritional supplements and  the hospital's home health agency does not participate in Cigna!  Our healthcare system has gotten more and more fragmented and difficult to negotiate than ever.  If I had not worked in hospitals and hospice, I would have had no follow up basically.

Hopeful that this tube is intact and will help me get through the rest of XRT and beyond.  I am supposed to be finished Christmas Eve.  That will be my big gift this year.

 

Thinking about all of you and wishing you 0 pain and peace.

 

Take care, 

PJ

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    The half-way mark

    was a huge deal for me....even if the side effects got worse, I still saw it as a downhill slide into NO MORE RADS.....

    Hoping they got the tube right this time.  I had pain and cramping for about 3 or 4 days after, but then that went away, and no more problems.  Sending positive thoughts that this is the case for your new tube.

    p

  • lornal
    lornal Member Posts: 428
    #3
    Pain

    Hopefully, the PEG pain will subside, and  you can get back to doing things - well, at least as much as the treatments let you.

    Glad your half-way through!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    Hang in there

    PJ,

    You are a trooper, knock you down, you get right back up.  Try to keep the big picture in front of you, removal of the beast!  Keep up with the pain meds, hydration and nutrition and do not forget your swallowing.  As much as it pains me to know what you are going through, continue to go through the motions and you will be on the road to  recovery soon.

    Good thoughts for you,

    Matt

  • Steve5
    Steve5 Member Posts: 147
    #5
    PEG tube pain

    Hi PJ- I was lucky to only have one PEG tube put in before treatments got under way - but I did have stomach muscle cramps that came and went the first day - hellacious they were and lasted 1-2 minutes - I called the IR about it and they told me that is what they were - and that they would go away - so they did and that was great - so I hope and pray for lessening of pain for you and a speedy finish and recovery - all the best

    Steve

  • PJ47
    PJ47 Member Posts: 376
    #6
    This is so sad it is laughable

    Home health nurse never came or called.  When I called they were waiting for orders from the first surgeon who messed me up with a failed tube.  Later on when I was at my rad treatment I get a call from his office saying Dr. H did not place this g-tube so he does not want to be responsible for it and will not write orders for Home Health Care Teaching.  She said we should call the Interventional Radiiologist who Dr. H ordered to install the tube for orders.  We told her he said to call Dr. H for follow up orders and referral.  She then suggested we ask my R/O for a  home health order.  My husband said sarcastically to her so he is supposed to write an order for a g-tube she had nothing to do with?  So, surgeon botches tube, turf to interventional rad., turf back to surgeon then turf to R/O.  

    Meanwhile, I have no one to teach me how to flush and care for the g-tube and was discharged with no instructions or supplies to take care of the tube.  

    Sick health care system,

    Will have to contact the CEO of the hospital on this one,  so much for discharge planning and continuity of care.

    I have learned to change my sink washers, irrigation system repairs and put in a door bell with you-tube, perhaps I can do the same with a g-tube you-tube video?

    PJ

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    PJ47 said:

    This is so sad it is laughable

    Home health nurse never came or called.  When I called they were waiting for orders from the first surgeon who messed me up with a failed tube.  Later on when I was at my rad treatment I get a call from his office saying Dr. H did not place this g-tube so he does not want to be responsible for it and will not write orders for Home Health Care Teaching.  She said we should call the Interventional Radiiologist who Dr. H ordered to install the tube for orders.  We told her he said to call Dr. H for follow up orders and referral.  She then suggested we ask my R/O for a  home health order.  My husband said sarcastically to her so he is supposed to write an order for a g-tube she had nothing to do with?  So, surgeon botches tube, turf to interventional rad., turf back to surgeon then turf to R/O.  

    Meanwhile, I have no one to teach me how to flush and care for the g-tube and was discharged with no instructions or supplies to take care of the tube.  

    Sick health care system,

    Will have to contact the CEO of the hospital on this one,  so much for discharge planning and continuity of care.

    I have learned to change my sink washers, irrigation system repairs and put in a door bell with you-tube, perhaps I can do the same with a g-tube you-tube video?

    PJ

    It's All There...

    LOL...

    I watched how they remove the power port, before having my done... probably wouldn't recommend it..., LOL.

    Also, watched the one of Joe Roggin just after he had a septo/rhinoplasty.....

    Again, though humorous (and a little crude), I probably wouldn't recommend it just before having it done...

    Oh, and the reason I watched both was just prior to me having each procedure performed, LOL... Abi-Normal.

    John

  • PJ47
    PJ47 Member Posts: 376
    #8
    Skiffin16 said:

    It's All There...

    LOL...

    I watched how they remove the power port, before having my done... probably wouldn't recommend it..., LOL.

    Also, watched the one of Joe Roggin just after he had a septo/rhinoplasty.....

    Again, though humorous (and a little crude), I probably wouldn't recommend it just before having it done...

    Oh, and the reason I watched both was just prior to me having each procedure performed, LOL... Abi-Normal.

    John

    A lovely young RD from Walgreens came out today

    Although she had no doctors orders she changed my dressing and whowed me how to use the tube and brought supplies.  What an angel.  It was easy to learn and now I am prepared just in case I need it.  You can learn just about anything on you tube, huh?  I watched the TORS surgery on BOT SCC and radical neck dissection before I had mine done; not for the squeamish!  I have suctioned out trac tubes for Hospice patients in the past so though I could take it and covered the ER for emergencies and children brought in DOA to assist the parents, so I was surprised how hard it was to watch the radical neck dissection.  There is something about having the neck opened up and exposed that bothered me. 

    PJ

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    PJ47 said:

    This is so sad it is laughable

    Home health nurse never came or called.  When I called they were waiting for orders from the first surgeon who messed me up with a failed tube.  Later on when I was at my rad treatment I get a call from his office saying Dr. H did not place this g-tube so he does not want to be responsible for it and will not write orders for Home Health Care Teaching.  She said we should call the Interventional Radiiologist who Dr. H ordered to install the tube for orders.  We told her he said to call Dr. H for follow up orders and referral.  She then suggested we ask my R/O for a  home health order.  My husband said sarcastically to her so he is supposed to write an order for a g-tube she had nothing to do with?  So, surgeon botches tube, turf to interventional rad., turf back to surgeon then turf to R/O.  

    Meanwhile, I have no one to teach me how to flush and care for the g-tube and was discharged with no instructions or supplies to take care of the tube.  

    Sick health care system,

    Will have to contact the CEO of the hospital on this one,  so much for discharge planning and continuity of care.

    I have learned to change my sink washers, irrigation system repairs and put in a door bell with you-tube, perhaps I can do the same with a g-tube you-tube video?

    PJ

    PJ, so sorry you are having

    PJ, so sorry you are having all these problems.  Maybe now they are all in the past and you can move forward with tx.  I didn't know utube had so much.  I'll have to remember that. I thot it was just music...silly me.  Good luck w/the rest of your tx, I hope it is uneventful.

    God bless you,

    dj

  • j4mie
    j4mie Member Posts: 218
    #10
    PJ47 said:

    A lovely young RD from Walgreens came out today

    Although she had no doctors orders she changed my dressing and whowed me how to use the tube and brought supplies.  What an angel.  It was easy to learn and now I am prepared just in case I need it.  You can learn just about anything on you tube, huh?  I watched the TORS surgery on BOT SCC and radical neck dissection before I had mine done; not for the squeamish!  I have suctioned out trac tubes for Hospice patients in the past so though I could take it and covered the ER for emergencies and children brought in DOA to assist the parents, so I was surprised how hard it was to watch the radical neck dissection.  There is something about having the neck opened up and exposed that bothered me. 

    PJ

    So happy to hear!

    That somebody finally stepped up to help! And, yes, I agree, our health care system needs some serious help...hang in there, you're almost done!!!

    Jamie

  • PJ47
    PJ47 Member Posts: 376
    #11
    debbiejeanne said:

    PJ, so sorry you are having

    PJ, so sorry you are having all these problems.  Maybe now they are all in the past and you can move forward with tx.  I didn't know utube had so much.  I'll have to remember that. I thot it was just music...silly me.  Good luck w/the rest of your tx, I hope it is uneventful.

    God bless you,

    dj

    I'm afraid you tube has many things you may not want to watch

    It is informative though and lets you have an idea what to expect.  Praying I can make it through the next 3 weeks and beyond,

     

    PJ

  • sin9775
    sin9775 Member Posts: 199 Member
    #12
    PJ47 said:

    This is so sad it is laughable

    Home health nurse never came or called.  When I called they were waiting for orders from the first surgeon who messed me up with a failed tube.  Later on when I was at my rad treatment I get a call from his office saying Dr. H did not place this g-tube so he does not want to be responsible for it and will not write orders for Home Health Care Teaching.  She said we should call the Interventional Radiiologist who Dr. H ordered to install the tube for orders.  We told her he said to call Dr. H for follow up orders and referral.  She then suggested we ask my R/O for a  home health order.  My husband said sarcastically to her so he is supposed to write an order for a g-tube she had nothing to do with?  So, surgeon botches tube, turf to interventional rad., turf back to surgeon then turf to R/O.  

    Meanwhile, I have no one to teach me how to flush and care for the g-tube and was discharged with no instructions or supplies to take care of the tube.  

    Sick health care system,

    Will have to contact the CEO of the hospital on this one,  so much for discharge planning and continuity of care.

    I have learned to change my sink washers, irrigation system repairs and put in a door bell with you-tube, perhaps I can do the same with a g-tube you-tube video?

    PJ

    Similar Experience

    PJ,

    Do write that letter to the hospital, or at least talk to someone.  My brother had the exact same experience with his tube.  They sent him home with no instructions.  Also, no one warned him about the pain he could have because of the tube.  It was horrendous for him.  My sister-in-law pitched a fit and there was a staff meeting called to make sure that no one else would be sent home blind after getting a tube in.  My brother and s-i-l were also apologized to many times, by many on staff.  Sometimes I think that doctors and nurses get so used to what they are doing they simply lose site of the fact that the patient is most likely going through all of the the first time!  It can make an awful situation even worse.

    The best to you as you go through your journey.

    ~Shawn~

  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
    sin9775 said:

    Similar Experience

    PJ,

    Do write that letter to the hospital, or at least talk to someone.  My brother had the exact same experience with his tube.  They sent him home with no instructions.  Also, no one warned him about the pain he could have because of the tube.  It was horrendous for him.  My sister-in-law pitched a fit and there was a staff meeting called to make sure that no one else would be sent home blind after getting a tube in.  My brother and s-i-l were also apologized to many times, by many on staff.  Sometimes I think that doctors and nurses get so used to what they are doing they simply lose site of the fact that the patient is most likely going through all of the the first time!  It can make an awful situation even worse.

    The best to you as you go through your journey.

    ~Shawn~

    The same thing happened to me...

    I got home with no instructions, no syringes, no bandage things.....and had no idea how I was supposed to pour something down something so skinny.  The cramps were so bad the surgeon who put in my port had me come in because she didn't think it should be that painful....it was this little surgeon who ordered Home Health, gave me some hydrocodone and basically made sure I'd be ok with the tube....she didn't have anything to do with putting it in....but she's a little cracker jack when it comes to caring for patients.

    The care and feeding of a tube is easy....but it's not something a person can explain over the phone..... Laughing 

    p

  • j4mie
    j4mie Member Posts: 218
    #14
    PJ47 said:

    I'm afraid you tube has many things you may not want to watch

    It is informative though and lets you have an idea what to expect.  Praying I can make it through the next 3 weeks and beyond,

     

    PJ

    Keep moving forward PJ!

    I have to admit, there were times, especially toward the end of treatment, that Pat wanted to throw in the towel. KEEP GOING! You will get through this. And, when you do you will be happy that you gave this fight everything you've got!

    Jamie

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