A quick update on my treatment. I'm now 2 weeks post radiotherapy and 13 weeks post surgery. I've also had 2 doses of cisplatin (and won't be having anymore).
I'm still on ensure shakes that go through my RIG (G-tube in US), as does all liquids and medications, as my throat is still too sensitive to swallow anything. I can occasionally drink but most cause me to cough and splutter which then makes my throat sore. So a bit of a cycle I'm trying to break.

I have awful ringing in my ears. I'm still hopefull it'll die down. I have lost hearing and have been told it'll probably be a permanent loss.

I have mild mucositis. All the sticky mucus is at the back of my throat, so I'm gargling warm salty water to help clear it. I'm also filling my shower with hot water to generate steam to also help clear it out. I also get dry mouth at night. It's not too bad yet and I'm hoping it doesn't get any worse.

I'm sleeping on the sofa at night as it's the only place I can keep my head at the correct angle to get some sleep, but man! the tiredness is really kicking my butt. I'm nodding off as I type this up. My energy levels are low. I feel lazy as I spend so much time sitting/napping. Tomorrow my husband and I are off to a Christmas market for an hour or 2. It'll be nice to get out of the house and walk somewhere other than the grocery store. I also need to do a bit of walking around where I live, again just to get out of the house.

I miss eating. It was my birthday last week and I couldn't have anything, so we've put it on hold until I can eat. I'm hoping to be able to eat something for Christmas. I've started having cravings for things. I did try some food but my throat is too sore to swallow and I choked. Not fun. It made me realise I'm pushing myself too hard without listening to my body. So, when the sore throat and coughing goes, I'll start off with some soups and then some mashed potatoes/veggies with lots of gravy.

I get sweaty too, especially at night. I've had a couple of night where I've soaked the bed.

My speech is doing well. Not bad for someone with a sliver of tongue. I've noticed on correspondance from my medical team to my Dr that they're saying I've had a glossectomy rather than a sub-total glossectomy. I need to ask them why it's changed.

Well, I’m going to wait till you are able to eat to wish you happy birthday Dizz. Nice your getting out with your hubby. It helps to keep your spirit up. Sorry your energy level in low, but if the body says “ I want to rest”, then rest lady Dizz. Had a little giggle with your description “cough and splutter”. Poor girl. Wishing the better days ahead come soon for you. Hugs!

Thanks Mokie, I'll keep you posted on when I can eat again. I've managed a cup of warm black tea this morning. Throat still sore but the coughing wasn't too severe. I think the few days rest on the throat is helping

I love this tome of year. You have the changing of the leaves, Halloween (I was fortunate enough to live near an American airbase in the UK where I had friends, so was able to trick or treat US style. My friends were jealous as in the 80's trick or treat wasn't a popular thing), bonfire night, my birthday, winter, Christmas and New Year. I love it all! So going out to Christmas markets always gives me a boost. I'm hoping I can drink something warming too while I'm there, but we'll see. (I'll carry a bottle of water for those dry mouth moments)

I'm definitley resting, I just think I'm a terrible patient. I'm used to planning and organising things, looking after people, cooking etc. Ahh well.

I hope you are well and you are getting what you need

Hey! I’m glad you’re doing well. The Christmas market sounds like a fun outing.

Would you mind telling me at what week post-surgery you could eat mashed potatoes and soup?

The Christmas market was OK. Popped over to see some friends afterwards.

I think it was about week 4, post surgery. Remember everyone is different, so what might be your time to eat could well be different to my time frame. It is good to try when you feel ready, not on a schedule.

You are absolutely amazing, Dizz!!! I LOVE seeing your great updates about how well you are doing after rads. You definitely are a person to emulate to patients just starting out. You are dealing with a million things of your own yet you go above and beyond to help newer members who are just starting out and the many who are going thru a scare and are overly worried which as we all know is a horrible way to feel. Thank you for your dedication Dizz!!! Its commendable especially when I know you just recently finished rads. I sure wasnt doing anywhere close to how you are until I was a good 6 - 8 weeks post rads. Keep up the good work on getting yourself better first, you are so very important to so many who are close to you at home. We will always have new members coming to our forum feeling terrified, alone and not knowing which way to turn. Your help is giving them a bright light at the end of the tunnel to guide them towards whatever path they need to take.

You're awesome!!! Thank you very much

Awwwww thank you so much Christine. This has given me a real boost

Belated happy birthday to you! I hope you can celebrate soon with some ice cream at least! Your outlook on this whole process is remarkable and reading your updates always gives me a boost so thanks.

Thank you Eileen I finally had a small amount of ice cream this evening.
I'm glad my updates give you a boost too. Hope you're OK.

Hi Dizz_zzey,

OMG you are eating ice cream?! You must be a month post radiation now, right? That is awesome news. Definitely something for me to look forward too...

Please, please keep us posted on your journey!

R0se

I managed a whole spoonful of ice cream. Still too cold in the mouth and throat. Today I've had a small glass of cold milk, with sips of tepid water in between. I'm now trying a very weak cordial (flavoured water) as i'm so fed up of plain water now.

Yup, 4 weeks today post rads. Still have 2 massive swollen bits on the inside of my cheeks and a huge sore above one of them.The back of my mouth is still inflamed but also itchy, which I guess is the new membrane growing back. My throat is easing though. Saturday I'm going to try some lukewarm soup and cheesey mash potato. I'm nervous but also excited. I've been able to eat some smooth fruit yoghurt. I had to leave them out of the fridge to warm up a little though, and try not to hit the sore by my cheek.

The mucus has drastically reduced. I hardly cough anything up now I just sound ike I've got a heavy cold, but my saliva gets foamy and I get a dry mouth at night where I'm drinking a lot water to get me through the night.

I can't wait when everything settles and I know what is my 'normal'

I’m 2 weeks past 35 daily radiation treatments and weekly Cisplatin for PV+ base of tongue SCC. I’m anxious to get back to somewhat normal.

I spit a lot of phlegm and swallowing is very painful.
When will this end??!!

I’m maintaining weight via feeding tube.

I’m also not very energetic and sleep more than usual. But do get outside and walk a mile.

It will end. You're doing fantastically well. Congratulations on finishing your radiotherapy and cisplatin. Sleeping is really good as is using your tube to maintain your weight and hydration.
It gets better as time goes on.

Glad to hear that mucous is resolving Dizz. From what I’ve read people who thought they had reach their new normal were surprised to find down the road they continue to heal and progress even further. I guess they’re right when they say everyone’s body is different and will heal in different ways. Hope the soup goes down well for you.

Glad to hear you’re doing well! Bob’s been doing quite a bit of soup and yogurt too although he has to make sure not too hot, not too cold. Said he feels like Goldilocks! Enjoy every bite - you’ve earned it!

Hey Mokie. It's definitely a case of wait and see what happens. Every day feels like I'm finding something different.

How are you doing?

Hi Eileen. I'm glad Bob's doing well. What flavours of soup is having? I'm having a bit of a crisis with food. I can manage yoghurt but anything else I seem to be frightened of trying. I choked a few weeks ago and now, I've discovered, I have developed a fear of choking so haven't got any further than smooth yoghurt. Not even soup!

OMG! Bob is really nervous about that too. He’s had a couple close calls that scared the heck out of both of us so I can imagine how you feel. Be patient with yourself and take baby steps. You’ll get there. He finished treatment Aug 1 so he’s a bit ahead of you. He’s been sticking to cream soups. So far, cream of chicken and butternut squash are the favorites (although he picks out the pieces of chicken in that one but it’s Campbell’s so no big loss). On Thanksgiving he made a valiant effort to try some other things but mashed potatoes with gravy was his limit. Everything else he had to spit out.

Oh bless him. OK so I might keep a mirror with me so I can check my mouth in between 'bites'. Creamy soups are the way forward. OK I've got some cream of chicken at home, I put it through a sieve to remove the chicken bits (my cat can have those. He's also a Bob ) I'll leave the tomato soup for now. I'll go shopping for some other 'cream of ....' and sieve out any bits. Thank you

How are you doing?

Haha! A cat named Bob!🤣 Yeah, tomato soup didn’t work too well for Bob either. He said it burned and also tasted sort of metallic. I just looked up a recipe for a basic cream soup so I’ll be trying my hand at that today. Supposedly, you can then add any vegetable you like so I’ll give it a whirl. I’m doing ok but things have been a bit tense around here the last two weeks or so. Bob had his lung biopsy and the results were not what we wanted to hear - SCC in the left lung. Oncologist has sent the tissue out for further testing to see if immunotherapy is an option. He also said that standard chemo, radiation, and cyber knife are also options. I was just glad to hear there are options. Bob is understandably sad and scared.

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 . Thank you so much for everything you contribute to OCF and all our members who are learning from your stellar examples. Excellent job Dizz!!!

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!!!

Oh gosh. I bet he is sad and scared. I wish him well with the treatment plan xxx

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.

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

I hope you're well.

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?

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 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, 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!

Any updates? Hope you're well 😊