| | Joined: Aug 2008 Posts: 6 Member | OP  Member
Joined: Aug 2008 Posts: 6 | too exhausted to write much - suddenly he will only sleep for an hour and a half or 2 and then (usually) gets up, walks around, falls down. The hospice nurse and I had a long talk and they changed around his meds - now we are alternating between 2mg lorazepam and 1cc morphine every 2 hours - hopefully, if nothing else, he will sleep more and I will have some quiet time. He gets mad at me when he makes irrational comments and I don't know how to respond. And, he suddenly only wants to eat donuts - I remind him he is also diabetic, but he doesn't care and, frankly, neither do I any longer. So I give him donuts and coffee when he asks. Does anyone have any experience with Ensure/Boost...is one any better and better tasting than another or are they all about the same? Maybe I can pretend it is chocolate milk?????
1st CA 1987- 5 recurrences. partial glossectomy/jaw resection. chemo. so many CAT/MRI I glow in the dark. left side neck radical dissection. teeth all removed. PEG/skin grafts to floor of mouth. insulin dependent brittle diabetic., hearing loss, aortic aneurysm.
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Personally I like boost better ... I am sure others like Ensure better ... so play it by ear ...
When my father was in his final stages of cancer (also had diabetes) they said just what you said - what they eat doesn't matter - give them what they will eat... This went against my grain because I always wanted to "make it better" and felt this would only make it worse but they explained that making most of this final time was better than fighting over what to eat ... I finally gave in and went with it.
Hoping the changes in meds help. Sending you cyber hugs. Wish I was closer so I could give you a night off for some fun and rest... See to it someone gives that to you!
Take care hon
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | If you're going for the most calories in the least amount swallowed then try Carnation Instant Breakfast VHC which only comes in Vanilla and packs a whopping 560 cals in the same 8 oz can.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | The big thing is that you need to have an occasional break from the chore of watching him -- Getting out for coffee with friends, a real movie in a movie theater, etc. -- It will not only be good for you in the long run, but your care for him will also be better.
Getting someone to sit with him a couple of times a week for a couple of hours would be good for both of you, esp if it is some friend of his -- But even if it is just an almost-stranger who sits while he sleeps, it will let you get out and recharge your batteries.
I have a friend whose wife has Alzheimer's Disease in advanced state and she is incontinent so he can't take her out -- They are members of a church and occasionally a couple will come by and sit with her while he goes out and shops or sees movie or just visits with other friends -- Makes a lot of difference in his world!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have taken all 3 of the big guns, Carnation VHC , Boost and Ensure. The boost to me isn't tasty, the Ensure is good as id the VHC. The VHC is the most expensive but has the 560 calories where the Ensure has 250. Go for what he likes I would say.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Ensure Plus tastes much better than Ensure and has 360 calories. I liked the coffee and butterpecan and still drink the vanilla for breakfast. The strawberry was awful regardless of brand. Carnation VHC didn't exist when I had rads back in the dark ages.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Eileen,
How did they administer your radiation back in the dark ages...magnifying glass on a hot sunny day? The first IMMGT treatment.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | David,
Back in the dark ages, we all got XRT, although considering mine was an unknown primary, I probably would still get XRT. I was just finishing rads about the time Brian was starting his. All I remember is being strapped to the table in that horrible mask and this big-ass machine rotating from side to side over my head. Fortunately sessions were only 5-10 minutes except for simulations or I would have never been able to do it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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