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Re: 2 Weeks Post Radiotherapy [Re: EileenL] #199546
12-01-2019 10:48 AM
12-01-2019 10:48 AM
Joined: Jun 2007
Posts: 10,409
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,409
PA
Thats funny!!! Even though I hate to admit it, I have a cat named Bob too! Bob has several variations of his name... most commonly known as Boo-Boo, Bobby Boo0Boo, Robert (only used when he's being naughty). Ive had him since he was 8 weeks old. Bob is 12 years old, a black and white tuxedo kitty with the silkiest long hair fur. I guess being a woman in her 50s, living alone while owning cats puts me in the right demographics for being a crazy cat lady. LOL!!!

Its not just texture that relearning to eat depends on. Acidic foods do NOT work for anyone who has had rads until at the very least they're a year post rads. The returning sense of taste is fleeting and comes and goes like crazy. One day chocolate milk is the best thing ever, the next day its like drinking thinned out chocolate pudding thats rancid. Most patients who recently finished rads will find the first bite or two are surprisingly pleasant and tasty but then very quickly every bite after tastes progressively worse. The Easy to Eat food list is what most patients have been ok to eat after rads.

Creamed soups like cream of cauliflower put thru a blender to puree is one of the best ones, cream of butternut squash also works great at being mild, smooth and something many will be able to eat. Degree of thickness is dependent on how far along the patient has gotten with returning to eat normally again. This phase can be VERY frustrating!!! When you are starving for something, you just cant get the craving out of your mind so you finally give in an try it. Surprise!!! That first bite tells you everything you were trying to avoid by ignoring the craving... unfortunately you just discovered your newest ,most hated food post rads. But 2 days later its something you love but only for about a week until it loses its flavor and you try it again 3 months down the road and its finally ok.

After rads, when I was relearning how to eat again I found a solution to my fleeting sense of taste. I went to the buffet style, all you can eat restaurants. I asked the manager if I could get a special discounted price as I was just relearning how to eat again and barely ate anything, and 90% of what they served wasnt possible for me. Usually after explaining what oral cancer is
and how much OC patients struggle to eat again, most managers were all too happy to give me the childs price. At buffets, its ok to take 2 tiny slices of cooked carrots, 2 green beans to mash up along with the staple teaspoon of mashed potatoes with gravy along with my glass of chocolate milk in case of something being overly spicy. I quickly discovered I could no longer tolerate Italian and Chinese foods which was such a major disappointment as I loved it all before OC. Buffets are perfect place to experiment and take all the time you need to eat. Id always go around 1 or 2pm so the restaurant wasnt so busy and I didnt have to rush to eat before all the dinner rush started.

In all the ups and downs, recovery can seem to take forever. Sounds like you all are giving it a heck of an effort and doing very well. Much better than I did taking care of myself!!! Dizz, you will get there in time, it just takes more patience than most patients have. The fear of choking will eventually go away too. You have been one member Ive watched in awe of how well you have mentally adjusted and clearly seen what unknown path you must take to conquer your cancer. Im soooo impressed at how logical and upbeat you have been thru everything. You really did get thru it much better than many of the people we help thru it. I account that to how well you did with your intake and at excelling in keeping a positive attitude. Helping those newer members who are just beginning their cancer battle warms my heart smile . Thank you so much for everything you contribute to OCF and all our members who are learning from your stellar examples. Excellent job Dizz!!! smile

Eileen, Im soooo sorry to read about Bobs newest cancer condition. The Opdivo new immunotherapy has had outstanding results and helped a great many even those who did not have the options Bob was given. For recurrences or any 2nd cancers you may want to consider getting a second opinion if for nothing else your own peace of mind. Im a firm believer in CCCs, especially for situations like Bobs. We're all here to lean on as Im certain you both are overwhelmed and horrified at the same time. Nobody wants to see themselves or their loved one in the situation you both are dealing with right now. Be good to yourself and take a break for some "me time". Taking an hour just for yourself could help make everything easier to deal with. Even once a week lunch with friends or a manicure, movie, long walk weather permitting or a new hobby... doing something completely seperate from your daily cancer/patient/care-giver focus is needed more than people think.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: 2 Weeks Post Radiotherapy [Re: EileenL] #199547
12-01-2019 10:55 AM
12-01-2019 10:55 AM
Joined: Jun 2019
Posts: 128
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Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 128
Oh gosh. I bet he is sad and scared. I wish him well with the treatment plan xxx


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: 2 Weeks Post Radiotherapy [Re: ChristineB] #199548
12-01-2019 11:07 AM
12-01-2019 11:07 AM
Joined: Jun 2019
Posts: 128
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 128
Hi Christine. Bob is such a great name for a cat. My Bob is a 7 year old (ish) tuxedo rescue cat. We think he was mis-treated before being kicked out to live wild for a bit. He is my "you made it through rads" gift. smile

Thank you for your kind words. I love to help people if I can. Plus this site has helped me so much with all of the information available, and the kindness everyone has shown me.

I shall go soup shopping tomorrow and also dig out my recpie for cauliflower soup too. I'm craving warm foods. I'm relearning how to drink warm drinks again as my throat was so sensitive.

The taste thing, OK I'll continue to try and try to stop getting frustrated. The salty taste disappeared this morning (always the way) and may it stay away.
I love the buffet idea. I'll take my husband with me as I'm sure he'll be up for seeing me eat again smile

I hope you're well.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: 2 Weeks Post Radiotherapy [Re: Dizz_zzey] #199551
12-01-2019 07:45 PM
12-01-2019 07:45 PM
Joined: Oct 2019
Posts: 19
Abington, PA
E
EileenL Offline
Member
EileenL  Offline
Member
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Joined: Oct 2019
Posts: 19
Abington, PA
Love the buffet idea, Christine. We live fairly close (maybe an hour drive) from Amish country in Pennsylvania so I think I may try to talk Bob into a day trip. Their buffets are unbelievable and we could check out the Christmas decorations (maybe even visit the Lancaster outlets!) Thanks also for the encouraging words on Bob's condition. We are at University of Pennsylvania for treatment so I feel comfortable so far but I know the idea of a second opinion is a good one and we're lucky enough to be close to some really good hospitals. And I try to take little breaks for myself but I have to admit it's hard. I always feel a bit guilty leaving Bob on his own! Guess that's just something I'll have to get over.

Dizz_zey, thank you too for your kind words. It's a challenge for sure. I'm just so angry that after all he's been through (and you've been through), that he has to go through more. Just doesn't seem fair but I guess none of this is fair.

P.S. I think maybe I should go get Bob a cat. Should I name it Dizz_zzey or Christine?

Re: 2 Weeks Post Radiotherapy [Re: EileenL] #199554
12-02-2019 05:22 AM
12-02-2019 05:22 AM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
Are you considering taking a trip to Shady Maple??? As long as your husband has the stamina to manage such a big trip, then you definitely should go. If it is Shady Maple, avoid the crowds by going during the week if at all possible and by arriving between 1-3pm. Thats what always worked the best when I went there for a leisurely meal without lines or crowds. I was recently there in October for my birthday. My son and daughter surprised me by recreating some of their best childhood memories. It was just the 3 of us like it had always been their entire lives and we had a great day with beautiful fall weather smile Shady Maple does not give discounts like many other places do when I explain my eating challenges which is why I went on my birthday as it was free. Im pretty sure they always have 4 different soups, mashed potatoes, mac and cheese plus their egg custard or other puddings, overwhelming choices for pies and cakes as well as several flavors of soft serve ice cream and all kinds of pother desserts that are easier for OC patients relearning how to eat.

I dont always pay much attention to where our members are from. Im about an hour and half north of Philadelphia, just outside of Allentown/Bethlehem PA. Ive also heard fantastic things about Longwood Gardens for another memorable activity you and your husband might want to see. Ive heard the Christmas lights are unbelievable! I dont know about any foods there but I was thinking of something other than constantly doing cancer to give you both a bit of a break. For other buffet ideas, you may find some of the better restaurants offer Sunday brunch. Years ago I had a few places in my area I would frequent for brunch. They all always had a great selection of things for anyone, even people who have eating issues can find something they are ok with.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: 2 Weeks Post Radiotherapy [Re: ChristineB] #199555
12-02-2019 12:50 PM
12-02-2019 12:50 PM
Joined: Oct 2019
Posts: 19
Abington, PA
E
EileenL Offline
Member
EileenL  Offline
Member
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Joined: Oct 2019
Posts: 19
Abington, PA
Christine, you are a wealth of practical information! I was thinking of Shady Maple. I haven't been there in years and thought it would be a good day trip. We're only about ten miles outside downtown Philadelphia in Montgomery County but I figured that wouldn't be too long of a drive especially if we managed to get a decent weather day. Sounds like you had fun with your kids and that they really made it a special day for you. Happy belated! My youngest son was just talking about Longwood Gardens. I have never been and have heard it's spectacular this time of year. I think that would have to be an overnighter for us. These eyes just ain't what they used to be for driving at night and that's probably about an hour and a half from home for us. I think that would be a lot of fun too just for a change of scenery. I'm sure there are probably some quaint little inns or bed and breakfast type places out that way. You're right - you need a break from cancer once in a while. We do have a place at the Jersey shore and I'm hoping we can pop down there for a long weekend if we get a stretch of decent weather. The ocean always does wonders for Bob's mood. Be well and safe travels in the snow!

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