Advice on tongue cancer please - Part 2

OP here, who is beyond touched that this thread has spread to part 2. Thank you.

We are humbled you chose us here to share this important chapter in your life, OP.

OP what is your first name so I can pray with more conviction.?

Hope you have a lovely, restorative weekend, OP.

We're here to see you through this, OP. I have a feeling you'd do the same for any of us.

Sending you lots of love OP.

How are you feeling?

R3 -- My name is Brian.

I will admit that I feel sorry for myself right now. It doesn't happen very often. I'm sure the feeling is exacerbated by the holidays, and my inability to talk to people or eat anything.

OP, it may just be scar tissue- that was the case with my friend and her scans as well.

Hi Brian - Nice to know you. It's perfectly understandable that you are feeling low. It's a lot to handle but you are and will continue to. Try not to overwhelm yourself with nagging thoughts and try to keep focusing on how resilient you are at your core.

OP, allow yourself whatever pity party you want, but set a time limit and then forge ahead. Don't deny your feelings, they're natural, but don't let them consume you. I am glad you've confided in us. Do you celebrate Christmas? Do you have someone/someplace to go? Please don't be alone, and even if you do not celebrate, take some joy in the pretty lights that are all around. What general area are you in? Maybe a bunch of us will get together and try and cheer you up. Not kidding.

Brian, tell us what is bothering you? Is it the healing process? The lack of food?

I know you will get through this and there are better times ahead. Hugs.

OP here. R11, what is bothering me is that I can no longer do what I used to do. I went to the art supply store with a friend today to get some canvas. She went off to find some crafts stuff, and I could not carry the canvas that I’ve carried a million times. (I'm an artist, so being able to carry canvas is a big part of my job.) The part of my arm where they took the arteries to reconstruct my tongue simply couldn't bend enough yet to carry the canvas. I texted my friend for help, but she had left her phone in the car, and I started to get really angry and depressed that I couldn't do something as simple and vital as carry canvas without help.

Also -- my tongue is still swollen and feels like a huge loofa sponge in my mouth. Although the doctors said that my movement is ahead of the curve, my swallowing is below, and I have to go to PT to learn how to swallow again. It's hard to not feel sorry for yourself when you can't even do something as simple as swallowing.

I do not have a boyfriend nor a close bud I can just sit there and cry with, which, of course, make me want to cry even more.

Even though I generally don't celebrate the holidays, I’m sure they are exacerbating my feeling sorry for myself. I am sorry for being self-indulgent. My apologies.

the fact that you are managing to get out already is remarkable to me. the physical healing process is quite different for each of us. the challenges and disappointments are a natural sign of healing and will motivate one to do all that is necessary to put ones life in order to achieve normalcy. all things will return to normal. Has your doctor advised you on hiring a personal trainer?

Mary Christmas

OP again. My apologies for the self-indulgent post at 12. I've only cried five times since this whole thing started, but three of them were today. It was just a rough day.

Working out to regain strength is an excellent idea, R13, and I will do that once I am through with radiation and chemo, to build back my energy and strength a little at a time. Thanks again for all the kind wishes and words.

op B, it is healthy and normal for you to be dealing with all the emotions associated with this medical treatment journey. Thank you for sharing your journey with us, your honest journey. I am so glad that you are here with us for this Christmas. You are our DL Christmas Gift . Share with us and Stay with us.

MERRY CHRISTMAS OP B!

HAPPY HOLIDAYS to ALL!

OP, my brother just completed his chemo and radiation treatments for throat cancer a month ago. Has huge issues with saliva (none), swallowing is difficult, he's lost a great deal of weight, his hearing has been damaged. BUT.....he has started to notice just the tiniest bit of improvements in these things. TINY improvements......but given any encouragement at all, the body will attempt to heal itself. You're in an earlier stage of treatment than he is - but I really believe that things will start to turn around for you in a couple of months - which might seem like an eternity to you, but in retrospect will probably not seem so slow and horrible as they feel right now.

Thank you for sharing your doubts and setbacks- don't ever feel like you can't. We are here for you, even if we can't help carry a canvas for you.

That would be frustrating - not being able to carry out "routine" tasks. But I must admit I was surprised to read you are out and about shopping even if only at one store. That's great!!!

Happy Holidays to Everyone on this incredibly sweet and comforting thread for our friend, Brian. And hugs to all......

OP, you should look up mastectomy exercises for gentle ways to improve your stamina. My friend actually was tasked with walking her fingers up a wall and back down. She said it was a non issue in the stress and pain department, and she could measure her improvement every few days. It was a positive thing in her life. Maybe they might show you other small ways that would bring some optimism to your recovery process.

Getting a prayer group of kind people, gay and straight etc... You are loved Brian!

R12 / OP. I know that was frustrating (not being able to carry canvas and text your friend). However, I do want to point out that it was nice of your friend to leave her phone in the car while she was with you. The other day, I was with a friend who was constantly taking calls while we were together. My friend is on the older side, so I just chalked it up to that.

dear op, I’m with my pets for the holidays too. I had to go back for three additional surgeries over six months to take off whatever from the big holes palate. They called it clearing the margins.. It hurt not like the first surgery, and I painted my nails a new glitter color each time, and told the doctors they should start a monthly club. Now, if that mask thing bothers you, tell them to put you half to sleep. My implant surgeon gives me something, costs about 800 bucks. All that damn drilling makes me mad. I also take an Uber home alone after that. I don’t want to have people around but that’s always been me. I’m kind of diy. I stitched up my own drill hand injury once (have pics) and have done my own digital disimpaction. I couldn’t go to the er because all my colleagues would know that I had a rock of shit in my butt. So I did it at home, with gloves and Vaseline. It really hurt before I did that. I mean fecal impaction is very painful. For food, I crushed up my meds with Campbell’s soups and took a big syringe and since I could swallow, I avoided the gag reflex area and slowly got the nourishment in. That Campbell’s is some type of magical mix of fat, salt and god knows what else.

You could always insist on Klonopin for that face mask thing. I went to the dentist yesterday where the news was given to me that I now had all crowns. But no one can tell, so who cares. But remember, I’m a female and a doctor and make huge amounts of complaints with humor thrown in.the doctor who refused to do my biopsy worked next to my clinic at my hospital.he had no reason to not do a biopsy. Finally he sent me to his friend, an oral surgeon. That guy nearly passed out when I told him his good friend was my ENT. A few years after my recovery, a good friend(oncologist) said that if I don’t sue the guy, he will continue to mistreat patients. The ENT did not even call to ask how I was and sent me to a collection agency for a couple hundred bucks. So yes, I did get compensated by settlement but that’s for after you are functioning well. You will do good.

Of course you will be weak. Don’t take bowel softeners because unless you also drink gallons of water, you will get the shit rock. The targeted radiation is a very good thing. It saves surrounding tissue from damage.make it your friend and really push for anti anxiety stuff. No need to be intimidated by some surgeon. I did write myself some extra pain meds on my sisters’ name. I only took them when I was in pain and the pain went away in about four months. So have a good Christmas and take meds if you are depressed, as is normal after what you’ve gone through. I’m taking care of a neighbors’ cat for the holidays and my own three boys and a Maltipoo. Ask any questions. As you can see, I don’t hold back. Xo.

OP, you're probably learning by now that the toughest part of this journey is mental not physical.

Many cancer support groups use the book Promise of a New Day (available for Kindle download at Amazon) to help calm the mind/emotions and to focus on today. There's an affirmation for each day of the year

I'm not a fuzzy metaphysical type of guy, but I can tell you I found this book to be very helpful. Best to you, friend

Hi op, it's Percy's owner here. I'm so glad there's a new thread so we can read your updates and send you messages. i know it's tough for you right now and I hope things get better for you soon.

Brian aka OP, I think it is awesome you even went to the art supply store!

Popping in on Christmas Eve to wish you -- and everyone in this thread -- a very happy holiday OP.

I know you said you don't really celebrate Christmas, but hopefully you can nonetheless find some peace, comfort and joy over the next few days. Cuddles from your pets, binge-watching something fun on Netflix, planning what to see and do on your trip to London next year... :-)

I'm happy you're still here, posting and sharing with us, and so grateful for all the kind souls who have chimed in with love and support over the past few months.

I've said it before but I'll say it again: it's threads like these that make me love the DL!

Thinking about you, Brian.

Wishing you a peaceful day and good news in the near future! I know these are not optimum conditions right now but this is just temporary - Better days are ahead Brian.

Very sweet message r27. Happy Holidays to you as well and to everyone who took the time to post such lovely thoughts these past few days.

Brian -- the original OP -- here. It is really wonderful and heartening to see so many strangers take the time and effort to give kind words and encouragement to a stranger. That is a beautiful and appreciated thing. Thank you, and happy holidays to everyone.

Happy Holidays to you, Brian!

Hi, op, Brian. I hope you're having a nice day..

OP here. Happy holidays to you all.

How are doing OP?

^^^^^ you.

Dear Brian... Wishing you a happy Christmas, and all the best wishes for the New Year. Stay strong!

I feel really bad for you. I admit, I have wished tongue cancer on Trump.

Watch Christmas movies and pretend you aren't suffering. Maybe when summer comes you will be well.

Hi B, thinking of you today on xmas.

OP B, I wish you a Very Merry Christmas!

And all those Dler who are inspired with kindness from this very special thread,

Merry Christmas to ALL!

Popping in to see how you're doing OPB (OP Brian) after your first radiation treatment, which I believe was a couple of days ago.

Hope it went smoothly, and that you're feeling OK.

Brian here. Yesterday was my first radiation treatment; they delayed it one day because they wanted to get the results of the new scan. It was also my first day of chemo. I took a valium in preparation for radiation, but it was so much easier than I thought it would be. Although they do put a mask on me so I can't move, it is a mesh mask that I can see through, so it isn't quite as claustrophobic as I feared. They then brought me to chemo, which took FOREVER. They told me that they are slow with the first infusion, to make sure I didn't have any adverse reactions. They also infuse tons of Benadryl, so I fell asleep pretty much right away, and was groggy and foggy headed for most of the night. I hate the effects of Benadryl. All told, I was in the hospital yesterday from 10 AM until 7PM, which is exhausting in and of itself. I had my second radiation treatment today, and I drove myself to the hospital, and managed to get through it without the aid of Valium. I was quite proud of myself! I think radiation will be easy, until it starts to kill my energy, but I will dread the chemo days -- every Thursday -- until they are over.

Thank you all for asking, and for the kind words. Here's hoping we all have a lovely New years, in which we all get more than we can home for. xo

Hi, OP. I'm glad the mask experience is getting better. You're doing so well under the circumstances. I really admire you. Happy New Year.

This is all such great news! You are really tackling this with such determination. Make sure you keep up with the good nutrition. And a Happy New Year to you as well, OPB and Very Best Wishes for 2019!

A little bit of relief in the worry department goes a long way. On chemo days, if you have nobody to drive you, call the cancer society, they have drivers and can help with Uber type arrangements if necessary. Congrats for getting through this stressful week!

[quote]On chemo days, if you have nobody to drive you, call the cancer society, they have drivers and can help with Uber type arrangements if necessary.

^^ Enthusiastically seconding this.

They will shuttle you to/from radiation treatments, doctor's appointments, etc., as well. Anything that's related to your medical needs. And most importantly: it's FREE. Link below for more info.

Wishing you a lovely weekend, OPB!

Hey B, thank you so much for checking in. Glad to hear that is isn't so bad as you feared. I'm too lazy to scan the threads, but how many chemo treatments or months do you have?

Thanks for that link, r47, I signed up to volunteer to drive people.

I was wondering the same, r48.

OP Brian: I read this quote recently, attributed to Chef Masa:

"Life starts from here, from now on is the good part."

Years and years of good parts are awaiting you.

Happy Sunday.

Brian here. I have daily radiation for six weeks, and chemo once a week for six weeks, concurrently. I'm less than one full week into treatment, but am feeling the effects of the treatment faster than I expected. My jaw hurts considerable from the radiation, and my mouth is dry. Further, I vomited quite a bit this morning, which, I suppose, is from the chemo. I didn't expect to feel it this quickly. Im hoping for a quick six weeks!

So sorry to hear that, Brian! Sounds terrible. Yes, I hope the six weeks goes by quickly. Keep posting with your updates.

Brian, ask for anti-nausea medication, and also request extra hydration during your chemo (they'll hang an extra bag of fluid). Chemo is toxic and the hydration basically helps to lessen the damage to the parts of your body that would be affected (other than the cancerous areas). The squeaky wheel gets the grease and they won't know you're experiencing problems unless you tell them.

Brian - Here's a thought - Get a 2019 Calendar and mark SUCCESS! on the last scheduled radiation and chemo day.

Good advice R53.

I have a prescription for "ondansetron 8 mg disintegrating tablet" for nausea. I forgot why I got this rx, must've been to counteract another rx. Anyway, just an idea of what's out there as far as anti-nausea.

Happy New Year, Brian! Thinking of you and sending my Very Best Wishes.

Wishing you a happy new year, OPB, and a 2019 filled with health, happiness and many wonderful new adventures!

Same goes for everyone else on this thread. :-)

OP Brian here. I hope everyone has a wonderful new year, filled with everything they want. Thank you for the kind words and thoughts over the last few months.

Hi Brian, here's to a healthier new year. Positive vibes your way.

Hi Brian, Happy New Year!

I know it doesn’t seem like it now, but there’s a famous quote for this: “When you’re going through hell, keep going.”

On your worst days, imagine yourself walking through a hellish landscape, knowing all you have to do is keep putting one foot in front of the other, and you will pass through the bad part and come into a beautiful landscape that is your future life.

R61. Like Dorothy in the poppy fields?

Happy New Year, OP. Here's wishing you all the best for 2019.

How are you doing? Are you able to work a bit now?

Hi OPB! I hope your second radiation + chemo treatments went OK, and that you're recuperating well.

Are you pain levels being managed better this week?

Happy New Year, Brian! Hang in there! 2018 was my worst year. I was in horrible pain and discomfort. But with the right medical care, I am now almost completely healed, and I know it can be the same for you!

OP Brian here. I can't believe how great I feel today. I feel as well as I felt before the surgery, and I am thankful for that. I know that will change any moment, because the effects of chemo and radiation are cumulative and take a few weeks to hit, so I expect to be knocked off my feet any moment, but, for now, I feel surprisingly great, which gives me hope that I will feel the same at the end of treatment. I never in a million years thought I could feel this great so soon. I still can't speak clearly, but that is partly because radiation makes my tongue swollen and my mouth dry, and the left side of my face is still paralyzed but I can tell it is getting a little better; slowly, to be sure, but enough for me to be hopeful. Thanks again for the kind words and support.

*super hugs for you* Good to hear Brian.

Great news, OP!

This is such great news, OP Brian! Great way to start off 2019!

That is wonderful, OP B.

It is okay to have good days and not so good days. You will be supported here for both.

If you ever need speech therapy after your surgery don’t prepay for a block of sessions.

R65 Goddamn it, Brain. You're not allowed to make me cry on my day off.

Kidding, was crying from happiness reading your wonderful, positive post. May the coming days get better and better.

So glad things are looking up, B.

*Daily positive vibes*

Sending also positive thoughts for this week. And continued strong and upward momentum, OP Brian.

[quote]I never in a million years thought I could feel this great so soon.

Wonderful to hear, OPB! Savor it and let that feeling buoy you through any less-than-great days that may pop up.

Hey, Brian. We've been thinking about you. How's it going for you?

Hope you are having a good week, Brian. Keep us posted!

Chilly January bump

OP Brian here. I had my third chemo yesterday, so now I'm halfway done with chemo. It was a long day. I got to the hospital at 2, and didn't leave until 930. For those who have gone through something like this, it is hard to know if I'm exhausted all the time from having to go to the hospital every day, or because of the toll the treatment is taking on my body. I still have three plus weeks of daily radiation, and, although the side effects from that aren't yet debilitating -- my mouth is dry, but there are no blisters, and my skin is starting to look sunburned -- the doctor told me that no one escapes the side effects of radiation, and I should expect to be bone-crushingly tired and in great pain within a week or two. They will put me on a fentanyl patch when that happens, and my sister will come back down from Boston to help me out. I was also told that the radiation will make it considerable more difficult to speak, and I won't be able to talk with any legibility at all within a few weeks, and that will last for a month or two after treatment stops, because, even though radiation might be over, it still continues to work; I suppose it is like a microwave oven, when the food still cooks for a while even after you take it out of the oven,

I admit I was disheartened by that bit of news. I was hoping that speaking would become easier the further away I got from the operation, and wasn't expecting this setback. There is nothing I can do to change it, so I accept it and just ride everything out until it's done, and I can speak clearly. I know that so many people -- many who have responded on here, even -- have so much more dire circumstances, that it seems self-centered about not being able to speak clearly-- or eat -- for a few months. It will pass before I know it, and I'm thankful I live in a time where medical technology is as advanced as it is, that I have access to it , and that I have the good wishes and thoughts of so many people. I know I am much more fortunate than most.

Hey OP Brian - The time will pass quickly if you can (as you say) get good meds and perhaps find a way of mentally distracting yourself. The key thing is to constantly remind yourself that every step is a necessary step and that this is temporary. Your doctors sound quite amazing and are giving you open and honest communication, which is a vital element in your positive mental outlook.

As others have said, hold on to the good moments and the buzz you felt last week.

[quote]It will pass before I know it

You said it, OPB! I mean, think of that original post in your original thread -- doesn't it seem like a lifetime ago? The worst-case scenarios didn't materialize, and now you're here, halfway finished (!) with your treatment! Amazing!

Two months from now, THIS will seem like a lifetime away. You're on the road to recovery, so just keep taking it one step at a time!

Here's hoping you have a relaxing, restorative weekend. :-)

Hi from London, OP. I was thinking of you today. It occurred to me that if you get tired but can’t sleep or focus on tv, try some audiobooks. It can make the time pass more easily, especially during chemo. There are plenty of them out there for every interest — not just bodice-rippers.

Just a thought. Hang in there. You will get through this.

Hi op, hope you're having a good day.

OP—your doctor said you’d be in severe pain? That is unacceptable. No one should have to endure pain like that. Demand pain meds and if you’re still in pain demand stronger ones. That makes me angry. I don’t see how any doctor could tell a patient something like that.

R84. I have a few pain meds now: oxycodone and gabbabentin. I try to limit what I take, because I do think that feeling some pain is part of healing, and, so far, thankfully, the pain has been tolerable. When I told my doctor that, though, he told me that I have been lucky so far, but the pain from radiation is cumulative, and he wanted to prepare me for it. I don't hold that against him. At least now when I start to feel more pain, it won't come as a surprise. If it doesn't hurt more in the near future, I will consider myself lucky! I think, however, today is a tipping point day. My tongue and throat hurt more than they have before; they're much more swollen and sore. At least now I know that more helpful pain meds -- the fentanyl patch -- are available, and ready for me when I need them.

I do think that doctors can be alarmists, and I also think they sometimes like to give people the worst case scenario. It probably protects them from the patients who yell that they weren't warned about what will happen. I also think they might like to say how bad things are going to get, but yet they are the heroes who will save us!

And R81. You are so right! It has been more than two months since my surgery, and, although I can't say that they flew by, but, well, they kinda did! In another two months, this will mostly be behind me. It is good to put that in perspective, and realize that time does pass fast.

Thank you all again, for your amazingly kind thoughts and encouragement and suggestions.

Hi Brian. Good to hear you are half-way through. Are you still planning to go to London? That sounds exciting.

Hi OP Brian,

I am glad you are having some good days too. I am so sorry this is happening to you. I am glad you are getting treatment and care. Thank you for sharing with us here too.

I care about you and want you to get all the care and support you want and deserve!

To the Good days, to Pain Killers and to your health!

Wishing you healing energy and rest!

[quote]I also think they sometimes like to give people the worst case scenario.

Hi OP Brian - From my limited experience with surgery or medical interventions, that is what I gather is the 'protocol.' Usually, it is not close to what they stated. Personally, I'd rather know the worst, but that's just me. Keep the communications line open - The doctors only want to see you treated, up and fit and ready to resume your life as per before.

Also want to know if your London trip is still on? I'm sure a few of us here would be happy to tag along and do some sightseeing (and a couple of pub crawls).

OP Brian here. I hit a wall last night. The horrible feeling and soreness in my mouth that I was warned about hit me in the middle of the night, out of the blue. It doesn't hurt so much, as feel....foreign. It feels like I have a slight sore throat, but, more significantly, everything in my mouth feels swollen beyond comfort. I started taking the oxy again, and hope that alleviates the feeling to some degree. It is not going to go away for some time, so I can't fight it, so much as accept it and get used to it. I still feel ok, other than that, though, although that will change in the coming days or week.

And, yes, I still hope to go to London, although I'm less certain of it than before. My friend needs to be there the first week of June for work, and I was tagging along with her, but the doctors warned me that I will not have much energy then. So...I am playing that by ear, and hoping for the best. I hope everyone has a wicked awesome day, and thank you for checking in.

Hey OP Brian, would CBD oil or tincture help at all?

Good question, r90. Can anyone with some knowledge weigh in?

You're doing a **great** job, Brian. Keep it goin' and fingers crossed that those meds alleviate your discomfort.

Dear OP Brian, I’m thinking of you and wishing you a better day tomorrow. Love from Wisconsin.

Dear OP Brian, sending you love and good wishes from CT.

Good morning OP. Sending you many positive vibes.

This thread has become ridiculous and every single one of you knows it is true.

R96,not for me. I really enjoy seeing people with true concern for another human being. They're few and far between these days. If you don't like this ridiculous thread, don't read it.

Hang tough OP! You can do it! Greetings from NYC.

How's your week goin', OP Brian? Greetings from Canada.

Hi OP from rainy California...

Hey OP. Checking back in after breaking my damn leg skiing. Two surgies, 8 day hospital stay. Pretty grim, but home now so pleased about that. My turn to work on recovery now.

I must say. You sound pretty good, bro. Glad to learn you're moving along nicely in the recovery process. I wonder if you're able to work a bit?.

R96. Blocked. Begone troll.

Gentle bump.

Hey OPB! Hoping this week's treatments went well, and that you're feeling OK. You only have two more weeks left, correct?

Hey OP, you can get through this today.

R96 in what sense? I think this is the best thread.

OP I'm sure this sounds terrible but if you're going on a fent patch ENJOY THE FUCK OUT OF IT! Fent is good when administratored by doctors.

Hope you are having a good day, Brian.

Hi Brian! Thinking of you.

Brian, here’s someone I follow on twitter. Check them out, this might cheer you up a bit.

Dick King-Smith was a British writer of children’s books. The books were all related to animals in some way. He passed away some years ago, but he is a famous writer in Great Britain and children continue to write him. His family opened a twitter account on his behalf. They post cute videos and pictures of animals doing funny things. I follow the account and whenever I feel stressed, I go check out what the animals on the account are doing. Scroll down, there’s some really cute stuff on there.

Hi Brian, *hugs*

and r108, that Twitter feed is adorable.

Hey OPB, just checking in to see how you're doing -- it's been almost a week and a half since you last posted. How are things going?

I second that, r110.

Sending good thoughts to OP.

Warm thoughts to OP Brian after his long week. Thinkin' of ya today.

Brian- I'm rooting for you, I'm hoping it's not too too bad.

Hang in there, OP Brian.

How are you, op??

OP Brian here. My apologies for being off-grid for a little bit.

My pain HAD been quite manageable, but, overnight, it felt like Chernobyl occurred in my mouth. The pain became intolerable, and I had to check into the hospital for monitoring, and a complete re-think of my pain med regime. After some trial and error, I am now wearing a 100m fentanyl patch, and they installed a picc — some type of temporary port — which will keep a steady supply of hyrdomorphone running through me. The port needs to be controlled by a portable pump, and the company that installs them is not open on the weekend, so I remain stuck in the hospital until at least Monday.

I am ok with that, though. My sister flew down from Boston to take care of my place and my animals, and the hospital is fine: I have a quiet, comfortable, private room, and enough books on my iPad to keep me diverted until I’m discharged.

Thank you for all of your kind words and thoughts, and, I hope, everyone is happy, healthy, and loved.

Hello OP Brian. I've been a long time lurker on here making this first posting to let you know that I've been reading your story since the beginning, have been amazed by your courage and strength, and to wish you the best as you recover. I am glad your pain is being treated and that you are finding ways to keep diverted until Pump Co. shows up on Monday.

Hi Brian. So sorry you’re having to go through all this, but it’s temporary. Just keep getting through one more day and you’ll soon be past all this. Imagine, soon the worst will be over and you’ll be feeling better. And then you’ll feel like this poodle!

Brian sorry to hear you're having a rough time. My thoughts are with you.

Cheering for you, Brian!

(R96, you may want to just excuse yourself from this thread. It’s a positive place.)

Thank you for your update, B. We really do care for you.

Hey Brian - Relieved to hear from you! Keep doing what you're doing. Glad to hear your sister flew in. Don't worry about updating us - we're just here whenever you need us.

*headbump*

Thanks for the update, OPB -- glad you're getting the care you need, and an opportunity to be taken care of. Hope you're having a good week with a dramatic reduction in pain!

Thinking of you, Brian. Glad your pain is being addressed.

Here’s a playful panda for you.

Hi OP Brian - Sending warm and friendly thoughts to you. January is already nearly behind us. Here's hoping for a more soothing recovery process in February.

Hi Brian, I look at my painting of my guys that you did everyday and think of you. Hope you’re hanging in there.

Lucky you, r128!

Hey Brian - Hoping you are okay. Hang in bud.

Hi Brian! Hope you’re in good spirits. We’re thinking of you buddy, and cheering you on.

In a few weeks time this will all be behind you.

My thoughts exactly, r132. Keep goin' Brian - We're counting on you!

Wishing you a lovely, healing weekend, OPB!

Hope you're back at home, as pain-free as possible, and resting comfortably with your furry friends.

Hey OP, is that you in that one photo licking Roger Stone? 'Cause that'd give you tongue cancer, I'm sure.

Hope you're back home now, OP. Have a good weekend!

Also wishing OP Brian a very restful and restorative weekend.

I gave a flippant reply without reading the thread, and now I feel bad about myself. I honestly thought this was another DL parody/joke thread.

Get well soon, OP.

r135, sometimes DL has a small spark of human in its tiny shrivelled black tarry heart. Welsome.

Hi B, sending fortifying vibes.

OP Brian here. I was home from the hospital for just a few days, but they rushed me back right away. I was overmedicated, got an infection, and could not stop pooping or throwing up. They're bringing in a special swat team of pain tomorrow, to figure out what is going on with me. These last few weeks have been the worst, both emotionally, and physically. I hope to get some answers and relief soon. Thank you, everyone, for all the kind words and inspiration.

Oh, Brian, not good. But thanks for filling us in. Is your sister still there? Now's time that you really need to have an advocate in your corner. Feel better.

OP Brian, thinking of you. Hoping you are feeling better, relaxing, and are warm and comfy.

Hey OP Brian. Just like the good times, this too will pass.

Here's hoping the pain medication gets sorted out tomorrow for you, Brian. You are doing us **proud** here, Brian for your perseverance and resilience.

I hope you're feeling better soon, op.

shocked and very sorry you are having all of these setbacks.

Sending many good wishes your way, OPB.

What you're describing sounds a lot like another friend of mine (she had breast cancer) -- for a while, she was back and forth to the ER/hospital while the doctors sorted out her medications to get them just right. She had all kinds of horrible reactions... until they finally perfected the "cocktail." This was just over a year ago.

Then, things were MUCH better. After a rough go of it (she's also had a double mastectomy), she finished her chemo and radiation, and is doing great today.

I'm hoping this rough patch is the same for you -- a temporary struggle on the way to health and happiness.

Oh no Brian. I'm glad that they sort of figured out what was going on. Thank you for filling us in. Had a friend that went to the hospital 2 weeks ago for overmedication- she was on an anti-seizure medication, got the flu, was given antibiotics, then was told to take Tylenol, which made her liver shut down. But they sorted her out, and now she's on the mend. I am sending positive vibes that you will be too.

Sorry about this setback, OP. I hope someone bangs the heads of those specialists together so you can get through this.

Thank you for the update OP. I'm sending positive vibes and hope they sort out the medication. Stay strong, hang tough, you can handle it!

We are all cheering for you and wishing you well.

Oh, damn it. I’m so sorry you’re having complications from the pain treatment. I hope they’re able to get a handle on it quickly. Your sister is very nice to help out. I hope you can get home soon. I’m sending lots of lovely hugs from London.

We are definitely cheering for you and know this is a "hurdle" that will be overcome. Warm hugs from your neighbour to the north.

I've been thinking about you, Brian. I hope you get some relief soon.

Hey Brian - Sending warm thoughts to you. Wish I was there to try to distract, help or just sit with you.

Since chemo damages the immune system, it's quite possible that Brian got C. diff, which is an overgrowth of a bad bacteria that can take over the digestive tract when the immune system is compromised and the intestinal flora is out of balance. This is a common side effect of chemo as well as antibiotic therapy, and I imagine that his hospital team will be looking into this. It's rather serious though, and not so easy to cure. (Many kinds of antibiotics, which kill off good intestinal flora, would only make the problem worse). I hope they get a handle on whatever it is soon and get him some relief.

Appreciate your post, r155.

OP Brian here. I did, indeed, get C Diff. It was fairly painful, which is what drove me back into the hospital this last time. I got home two nights ago, and am still out of it. I can't quite tell if it's the medications I'm on that are making me fuzzy-headed, or my exhaustion. Whatever it is, I am at the level just below functioning. I can't really do much of anything but sleep right now. I'm not in more pain, but I am definitely more inoperative than I was before. I will keep plugging along, waiting for that day when I realize I've turned a corner and am starting to get better, which will happen very soon.

Good to hear from you, Brian. Any sort of idea on timeframe from the docs in terms of recovery expectations?

Oh Brian, glad they figured it out. Also I'm glad that r157 is around- sounds like they know their stuff. Is it stupid to suggest ingesting some kind of probiotics to re-introduce friendly bacteria?

Thanks for posting OP/R157, I was worried that we hadn't heard from you.

Rest is good. Don't be afraid to rest up, it will help everything.

r157 here. I'm not a doctor, but I know a thing or two from various health issues I've dealt with in my past - including chemo. There is a supplement which is helpful for c.diff in some people called Saccharomyces Boulardii (it's made from the skin of a tropical fruit). However, not knowing what OP/Brian is taking, or his general condition, I'd never recommend it for him. It might do more harm than good. For others, who might get c. diff from an antibiotic (clindamycin, for instance, is NOTORIOUS for messing up intestinal flora), it might be worth a try, especially if the treatment your physician gives you doesn't seem to do the trick. I'll link a study so you all don't think I'm a nutcase:

Hi OP/Brian. You are doing incredibly well considering your body doesn't act like a friend to you right now. I'm glad to hear that you are getting sleep and rest, as you should. And things will turn around for the better. You are right about that.

God bless you Brian!

Oh OP Brian. I have been lurking since you first were diagnosed. Glad to hear that you are making progress. Cancer is an awful thing to witness in a loved one, even a stranger. My husband had small cell lung cancer for a year. Despite all the treatments nothing worked and he passed last July. It warms my heart when I meet patients we met during treatment that survived their illness.

I am rooting for you and trust they are doing everything possible to make you comfortable and cure you. Just don’t let the fucking insurance companies push you around. They are almost as bad as the illness. Get well soon OPB.

OP Brian here. I am so sorry to hear that your husband did not make it, R164. It speaks well of your character that you are warmed by seeing those who did.

These last few days have been very trying. I know I will feel worse and worse until the tide turns and I start to feel better, but the tide seems to be a ways off still. I've been in more pain than usual, and I have trouble focusing and staying awake. I know it will pass, though.

One thing that I have to say is how wonderful my insurance company, Cigna, has been. I was expecting some friction from them, but I have received none. They have been surprisingly helpful and supportive.

OP Brian, sorry that you are not past the bad stuff, but so happy you are not dealing with insurance crap. Getting well is the goal, and any stress you don't have is a win. Wish we could help you more than with words. Thanks for checking in.

Brian, I love how supportive posters are for you. Thanks for updating us. Xoxo

Hi Brian. Are you still doing any painting? It seemed to be such a part of your life. If not, maybe take up something like photography in the meantime. It's a way to express what's going on, and then later, when you're doing better, you can use the photos as a prompt for the work that you really want to do. I think of Monet and how cataracts forced him to change his art. However, that change still brought immense beauty and vibrancy. I wish you well.

Hi OP Brian, so sorry you're going through this still. I like R168's idea - I hope you can find some method of relaxation and enjoyment, even if only for short bursts. I'm glad your insurance company isn't a source of stress. Rooting for you.

Sending good wishes for a speedier and smoother recovery to come, OPB. Hope your furry friends are being good "nurses" for you. :-)

Special Valentine's Wishes to dear OP Brian.

Thank you for checking in Brian, sending many positive and healing vibes to you.

Hi op, it's Percy's owner here! I've been thinking of you and hope you'll be feeling better soon.

*gentle head bunt*

OP Brian here. I am astonished at how many people are wishing me good thoughts, and at how long this thread has been going.

I have not been doing great, which is why I have not been checking in very often. Although I finished my chemo and radiation, I continue to feel tired, which has been caused by two things. First, the effects of the treatments will linger for quite a while, and, regrettably, I discovered that the radiation fried my thyroid. It is now a tragic under-achiever, which is causing me to be tired and to essentially sleep all day. I've started medication to boost my thyroid, but it will take a few weeks before it is active, and I will have to take the medication for rest of my life, which saddened me. I was hoping I could put this behind me without permanent health damage.

Thanks again for all your good thoughts, and I hope everyone has a fantastic day.

Brian-the thyroid meds should help a great deal; I hope they work fast for you. I am impressed by your courage as you face this and can’t wait to read these posts when you have put this well behind you

^^ Totally agree with R176 re: the thyroid meds. Once your TSH levels are balanced again, you'll be right as rain.

Sorry to hear you've been feeling tired, but a HUGE HOORAY to your chemo and radiation being over! That's fantastic and to be celebrated! Fatigue is to be expected, and it does take your body a while to bounce back, so savor all those naps. Your body needs them to continue to heal.

Well Brian, a fried thyroid isn't al that horrible- I've had one for 30 years with nary a blip. Just remember to take your meds approximately the same time every day, one hour before eating, (or 3 hours after) and monitor your levels once a year. Cholesterol and thyroid levels are directly related- low thyroid = high cholesterol, so don't fret about it too much if they say it's too high. Also, depression/sadness is a symptom of low thyroid- crying for no reason, etc. So when your levels are regulated, you'll feel much better emotionally as well.

Thanks for checking in with us, my cats are purring for you.

Brian- First off praise God for the end of chemo and radiation! The residual effects of the cancer KILLING treatments will subside and disappear . My friend had thyroid cancer. Thyroid hormones are nothing but giving you energy and life. You are on 3rd base and about to still home plate !

Steal lol

164 here. So glad to hear you are making continued progress. I wish the best for you and look forward to your next update. Hang in there!

Brian, so glad you are at the end of chemo and radiation. My sister’s thyroid was also fried by radiation but she is otherwise doing well and you will be, too, once the thyroid meds take effect. Thank you for keeping us updated. We are all rooting for you and I am keeping you in my prayers.

Also, glad you have good insurance— I agree that Cigna is very helpful.

Brian, in my experience that synthetic thyroid medicine take weeks to enter your system. I didn't do well on the synthetics, they started me on Armour Thyroid, which I did very well on until they had a problem with their quality control. I now use a product called Nature-Throid and it works so well I know I will never go back to anything else. If your doctor is amenable to changing you to a natural-based thyroid medicine I would go with that, but be aware that it will be in your system much quicker than a synthetic. If you switch, don't take your synthetic for 3 or 4 days before you start taking the natural one. You will see a much quicker turnaround in your tiredness with natural then with the synthetic. I've had no thyroid for years, and if you pay attention to your body, you will know when you hit your optimal dosage and also when you need a change. I am so glad that you are done with the chemo. Stay strong. And sleep when you need to. It's very restorative for your mind and body.

Unfortunately Nature Throid is having manufacturing difficulties and is back ordered round the US. Better for OP to get stable on whatever at the moment, probably synthroid. First thing's first.

Nature-Throid is back at my Pharmacy for the last month or so. Unfortunately, with the synthetics, I felt like I was drinking a thimbleful of Poison every day. I know a lot of people do well on the synthetics, I just never did.

Bravo Brian. Celebrate the seemingly small (but in reality, really big) achievements. Keep those spirits up.

I think I might not be able to go to London, after all. It appears that I remain more swollen that I should be at this point, which is making it harder to restore speech and eating abilities. I fear that traveling so soon might be more arduous than I can handle. I should probably get a shorter domestic trip under my belt before tackling an international trip to a bustling, high-energy city. So..perhaps I might go in August, when I can also scoot up north for the Edinburgh Arts Festival. I'm incredibly disappointed because it feels defeatist, but I think it might be the wiser decision. I would not want to compromise my friend's enjoyment of the trip by not being able to keep up with her.

Defeatist?!! Edinburgh in August is NOT defeatist! Your time there will be all the sweeter for your forbearance now.

Don’t give up hope Brian!!

I think it's smart of you to bide your time and travel when you feel ready -- good idea to enjoy yourself locally, and then hop across the pond when you know you'll be able to fully enjoy it!

Be patient with yourself, OPB -- your body *will* heal. You're doing great!

Brian, the fact that you're planning to go to the Edinburgh Arts Festival is not defeatist. London is always be there, you can bide your time. It's lovely during the Holiday season, when she puts up her lights.

Hi Brian, good to hear from you. Don't feel bad about not wanting to travel to London right now. I don't think I'd want to, either. Take care of yourself and be patient with yourself.

Hi Brian, don’t feel bad about not going away when you’re not tip top. I had a doctor assure me once that I would be well enough enough to go on a trip, I was not but went anyway. Boy was that a mistake! I would never do it again.

I had one anxiety attack after another, didn’t feel well enough to eat and missed a lot of good food, and my feelings of illness just killed it for my travel companion, who wanted to go on all sorts of side trips and I just wasn’t up to it. If I could have, I would have spent the whole trip in the hotel room watching television. You can do that at home. You’re the one who knows how you’re feeling. Listen to your body.

Wait until you’re thoroughly recovered and then go and enjoy yourself. Right now it’s still flu season, it’s not the best time to go about crowded venues anyway. Your immune system is down, so you’re best off staying away from sick people for now. People are coughing in the stores, I just went out and someone was coughing horribly in the next aisle. You’re better off away from that.

In a couple of months, flu season will be over and your immune system will be doing better. Then you can check out when is a good time to go.

OP that revised travel plan sounds quite lovely actually. So great to hear from you, friend!

OP Brian, please let us know how you are doing. I think of you all the time. Hope it's a little better these days.

Brian, do you have access to CBD oil? That will help a lot too. Also, are you a spiritual person or practice meditation ? This will also help with your recovery. Visualize yourself cancer free, full of vim and fun and resuming a life beyond your greatest dreams. I intuitively know you will beat this thing very soon. YouTube has guided meditation videos for anxiety, healing, relaxation etc.

*positive vibes on a rainy day*

Hi Brian! Hope you are doing well. Thinking of you today as I often do. You’re very brave, keep it up.

Brian, please check in when you have a minute. A lot of us are very concerned. We are all pulling for you.

Anxiously waiting for update as well. Thanks.

YOU'RE STILL LIVING ??

R201

No one is laughing at your pitiful attempt at wit. You're obviously a miserable person. I hope your life gets better.

In the meantime, go away.

Brian- still praying for you for complete healing.🙏🏻🦋🌈🎨

FF'd r201.

I've put a lot of people on ignore who do the same extra space after punctuation thing that R201 does. Wonder if it's all the same guy trolling with different browsers?

Hope Brian comes back soon and lets us know how he's doing.

Why do people even like R201 comment on threads like these? What purpose does it serve?

Brian, still think of you daily when I see your painting of my guys. Thanks for giving me a little piece of your talent. Since he's swollen, what alternate therapies could he do for the swelling? Cryotherapy?

OP Brian here, who continues to be astonished and grateful at the level of kindness on here. Thank you. I have not had a great week, and the thoughtfulness on the board cheers me up.

I had a meeting with one of my doctors, and, as usual, he was vague about how long recovery will take. The doctors always say something vague like “it’s a process,” or “be patient.” I wanted more concrete answers than that, so I pressured him into giving me at least reasonable expectations. He finally told me that it is highly unlikely that I will ever talk like I talked before, but, with extreme speech therapy, I will sound almost normal in a year. He also said that it is likely that I will have to have the pain pump for another three months, and I will probably not be able to eat regular food until then. He said mouth radiation is just about the most extreme and difficult treatment there is, and they don’t expect patients to be even halfway normal by three months after treatment, and not fully-functioning until a year after.

I think I was overly optimistic about the speed of recovery. Despite what the doctor said, I suppose I still am, which is why I have my moments of depression. I am not happy about how long it will take me to recover — not being able to speak is the worst! I can’t answer the phone, talk to friends, etc — but it will take as long as it takes. I will just keep plugging along, and hope to see continued improvement.

Again, I can’t thank you enough for your kindness.

Brian- your incredible strength gives me strength. This nightmare will be over soon. Take each day at a time.

Hey OP Brian, I am just grateful you can talk to us digitally. 3 months will go. By Summer you should be seeing huge gains. Easy does it and start the speech therapy at the right moment, working toward Scotland in August.

Brian, you bring out the humanity on DL

Thank you OP for checking in! Glad to hear you're OK! you will be OK! take it one day at a time, you're strong and will get through this! We are all rooting for you!

Only months till this all fades into a distant memory, OP Brian. That's all it will soon be and Scotland beckons you to new adventures and a New Beginning. Spring awaits, a time for renewal, and rejuvenation.

Brian, hang in there with the speech therapy when you get there and don’t be discouraged, even if it’s a long road.

I have found by my own experience and that of friends, that many people just get tired of doing physical therapy or don’t want to do it any more and those people don’t recover fully. If you’re given exercises to do, do them even if they don’t seem to have much point to them or don’t seem like it would make much difference. It makes a huge difference to your recovery long term and I wish they would explain that more. Those little bits add up.

People continue to heal for the first two years and many quit trying to recover further during that time, they just settle for whatever progress they get, long before that period is over. Your doctor may be judging by the quitters he sees. You are not a quitter.

Also, a lot of times physical therapists understand more about how long recovery takes and what is normal than doctors, who aren’t involved in the day to day recovery efforts of patients. Wait until you see your physical therapist/speech therapist before you jump to any conclusions. You may find he or she has something different to say, and they are the ones getting it done, not your doctor.

A couple of things I’ve noticed about people in physical therapy: almost every single one is depressed and on medication for depression. That’s a physical issue, not just a mental one. They are not feeling up to par so their body sort of shuts down everything that’s not absolutely necessary. If you’re feeling depressed, tell your doctor. Anti-depressants may help you get through. Don’t feel bad, all the other patients are doing it too. I spent a lot of time talking to patients in p.t. and their spouses. It’s practically universal.

Another thing I noticed is that more generally active people recover more quickly. When you’re feeling better, try to get out a bit, garden in the yard, or anything that gets you moving a bit. It helps your overall sense of well-being to move around and get in the sun when you are able to. If all you can do now is paint, or sew, or knit, do that. Take up a hobby, now’s a good time.

It’s also worthwhile to think of others that have it worse. There are many charities that could use baby quilts, or crocheted afghans. If you’re going to be stuck in the house quite a bit you might think of doing something like that. It helps keep your spirits up to be helping others. You can be useful and needed even as you recover.

I also read about a man who is a cancer survivor and he knits or crochets hats for cancer sufferers and sends them to anyone who needs them. He really enjoyed doing that and the people loved receiving them.

Keep painting, Brian. You’ll always have that and you don’t need to talk while you paint. Celebrate your talent!

Thanks for answering, Brian. We think about you every day and wish we could help more.

Thank you for checking in, Brian. And as r216 said, we do think about you. So hope the worst has passed and by this time next year you'll be truly back and healthy.

Thank you for your update, Brian. I'm sorry to hear that your healing is slow. At least we have texting these days, if that is a small consolation.

Hi Brian! I hope you had a pleasant evening.

Goodnight, sweet dreams Tomorrow’s another day. Til then, sweet dreams, sweetheart

Goodnight, sweet dreams I’ll see you along the way In dreams, sweet dreams, sweetheart

May angels up above watch over you And keep you safe, my love Until the dawn breaks through

Good night, sweet dreams Tomorrow’s another day Til then, sweet dreams, sweetheart

May angels up above watch over you And keep you safe, my love Until the dawn breaks through

Goodnight, sweet dreams Tomorrow’s another day Til then, sweet dreams, sweetheart.

Take heart Brian, my doctors have just told me I'm terminal, but to keep trying the various med-trials that may give me some extra time. I'm much older than you, so I'm not as devastated as a younger person might be. But being offered hope for the futures is better than being told to get one's personal life in order. best of luck to you. keep up the fight.

R220 Hugs honey, lots of hugs

And love to OPB

Sorry to hear, R220. Cancer is a terrible diagnosis, no matter what age you are. Take care of yourself.

Sorry to hear that R220. Hope you are here with us for a long time to come.

Hugs to you, R220.

R220, hugs and good wishes!

OP Brian, although I’ve not been through what you’re going through, I did have a situation after an automobile accident that left me unable to walk normally for nearly two years, and needed two surgeries, both requiring long recovery time. I hated being temporarily disabled and wondered if I’d ever get better. That was nearly two years ago. I still have occasional pain but the physical therapy did work, and I have days now where I don’t even think about those hard times. In the grand scheme of it all, it was just a fraction of my life.

I hope that less than two years from now you are also able to say, oh that, yes, I got through it, and it was bad, but all is well now. You are in my prayers always.

Damn r220, sorry to hear that, but your attitude is heartening. May I be so bold to ask to keep us posted on your progress here too?

R226 We shall have to name him....

Best wishes to you, Brian. Be patient. Xoxo

R220, I am so sorry. The next world is so much better.

R220 here, I won't post anything further on Brians thread. It wasn't my intention of diverting attention and support for Brian's difficult and painful recovery. I hope you will understand and focus on Brian. I'm an old guy and I have wonderful support and am totally without serious pain. I thank you for your concern, but I simply mentioned mine in hopes it might provide Brian with a little more hope.

R220, we have enough love to go around. But, how selfless of you. We commend you, and please reach out to us whenever you have the need. We can show that there's some good people when we are pressed.lol

r230, you just brought tears to my eyes. I also echo r231's sentiments- we don't have shrivelled hearts made of black tar.

Brian, sending positive thoughts your way.

Please stay in touch r220. Age is completely irrelevant here. How kind and thoughtful of you to take the time to post an uplifting message to OP Brian. Hugs to you.

R233, speaks for me and everyone .. The advances in medicine will extend life significantly ..

Thanks, r234. We're all on this planet - better together.

r233

R235- Word and amen!

For r220.

r233

OP Brian, how are you doing?

OP, thinking of you

Happy Sunday OP and everyone on this thread. Wishing you the best of health. Hang tough!

Hey Brian - Thinking of you as you embark on another challenging week. Sending warm wishes your way - on this St Paddy's Day.

Hey Brian, I took the liberty of asking the Novice DL Tarot Reader to do a reading for you....hopefully it'll be a little diverting for you:

Hi Brian, Happy St Patrick’s Day!

OP Brian here. My apologies for being MIA, and not checking in lately. I’ve fallen into a bit of a depression, and don’t seem to have the energy for very much.

My sister was here helping me for about 5 weeks, but went home last weekend. I miss her, and miss having the company. It is strange, but she and I have not spent more than a few days with each other since she started college about 45 years ago, and we have been in and out of touch since then. It is interesting to get to know your sibling again, and she could not be more helpful and kind and loving. And I miss her now.

Also - I had been on an opioid pump, and they took it off and put me on a lower-dose fentanyl patch, and the withdrawal of one opioid while the other took effect threw me into this terrible depression. I have not been this sad in pretty much my whole life.

For those who have gone through this, you probably know that this is the hardest part of recovery: you’re not quite infirm, and you’re not quite well. If I were either, I would have no trouble surrendering to the condition, but being in between the two is difficult. Although I am able to take care of myself now, I am afraid to venture out of the house to run errands, etc. for fear that I won't have the energy to complete the mission.

So…onward and upward. Thank you for all your thoughts. You got me through a horrible horrible experience, and your love and kindness helped me immeasurably.

You are at the end of the tunnel with a beautiful light

So great to hear from you, OP Brian. I think the 'psychological' impact of the cumulative effects of treatment is not something one ever fully anticipates or is prepared to handle. Having the comforting presence of family is such a tonic and an incredible part of recovery. I'm so glad your sister was able to be with you these past few weeks.

Take it **one day** day at a time though and recognise the recovery is a bit of a 'marathon' situation but you are our DL long distance runner and we're here cheering you - till the day you get on that flight to Edinburgh.

Is there anyone who can assist with care? Can you get groceries delivered?

OP Brian, thank you for checking in, I'm sure we were all getting concerned. So glad your sister was able to come, I hope she can visit again soon. Maybe when you are a little stronger, you can visit with her? I wish we could help you more, please know that you are never alone.

Hey Brian, thank you for updating us. Can you Facetime with her? Also take advantage of Amazon if you have Amazon Prime/Now. You can get stuff & groceries delivered the same a day if you really need it.

Brian, it’s very normal for a person recovering from major surgery to have depression. It’s a phase you will pass through as you improve. I know it’s very overwhelming right now. I’ve seen people absolutely paralyzed by it. At least you know you are getting better, it’s just s slow process.

If you need some days to just watch TV and veg out, just tell yourself, you’re in a sort of waiting pattern right now. Better days are coming, though you may not feel it now.

One moment you will be depressed, then suddenly you will find yourself actually enjoying something. Full recovery is then at hand.

Good to hear from you OPB! As others have noted, depression is normal during recovery, and I would imagine withdrawal from medication (opioid or otherwise) just compounds that. Hopefully, it will pass soon.

If it becomes severe, though, don't be afraid to reach out to your doctors for guidance and support.

Speaking of support, you might find a cancer support group helpful. There seem to be several in the Nashville area. I know you can't really speak at the moment, but you could always just sit in and listen... just hearing from other people might give you some helpful information, advice or comfort. You could probably even get in touch with these groups/its members via email.

Some groups at link below.

Hang in there, OPB. You've some SOOOO far since your original post, so congratulations!

OPB here. Your kindness and help continue to astound me.

And R220: don't worry for a second about "hijacking" the thread. We all have stories to share, and all of us are hoping to give others guidance and support. Best of luck to you.

Brian- Watch the funniest shit and laugh your ass off. It boosts immunity and will raise endorphins. Plus it's fun.

Hi op, I hope you're having a good day.

Good morning Brian! Thinking of you today.

Hi Brian, how is it going ?

Hi Brian!

Whatever you do, do not watch Call the Midwife. I’ve been watching a marathon of it and crying (one of the midwives was on her deathbed), and my cat keeps coming over to see what’s wrong with me.

As long as you don’t do that, you should be okay.

OPB here. Many people have said that I will start to notice a subtle milestone here and there, as I recover. Well, today was the first day that I was able to swallow my medications normally, and not have to chop them up and put them in a feeding tube. That would have been unimaginable even week ago. So, yes, one does see signs of getting better. On the other hand, I have developed another bump on my tongue. It is a little more topical than the tumor they removed, so I am hoping it is just a canker from radiation or scraping my tongue on my teeth, and not another damned tumor. I have a doctor's appointment tomorrow, and another scan to confirm it is not cancer in a few weeks. Wish me luck.

Good to hear from you, Brian. I hope this bump turns out to be nothing significant and you continue to improve. Sending good vibrations your way.

Good Luck!

OP Brian, so good to hear from you. That you can swallow shows you are improved immensely. I have to believe that the other bump on your tongue is just, excuse the expression another bump in the road. I don't begin to know what you're going through, but I do know all the medications during and after chemo just are so vile to your system, they cause other problems while doing their very important job. I hope wherever you are the weather is good, and if you like to go outside you have the strength to do so. What are you doing this weekend? I hope you can find the strength and the energy to do whatever it is you love to do. Thank you so much for updating us.

Good morning Brian! Good luck at the doctor’s today and I hope you have a lovely day.

Thank you for your progress, OPB. I am sending positive vibes your way for your doctor's prognosis.

Please let us know how the doctor went. I’ve got my fingers crossed for you.

OPB. The doctor thought the bump was just an ulcer from radiation. Just to be sure, however, I have a scan in a few weeks, which will also tell me if the cancer is still gone. The highest incidence of recurrence is within the first 8 months of treatment, so they are keeping a close eye on me. I am very thankful that I lucked out with such a diligent team of doctors. I don't like living in Nashville at all, but at least I have the benefit of world-class health care.

Hi OPB, glad to hear from you. That sounds like good news. People’s immune systems get weak from radiation and odd things can come up. Hopefully that’s all it is.

Appreciate the good news, Brian. I think I'll get out of bed and celebrate for you. I tend to sleep to escape unpleasant realities. See, you are already doing selfless good deeds in return. Surely another subtle good sign of ongoing recovery.

Such good news OP Brian!

Hope you have a lovely weekend, OPB. You're doing great! Celebrate all your victories, big or (seemingly) small. :-)

Hugs for you, OPB.

Haven't been here for a while for a number of reasons so its good to return and to learn you're coming along nicely, OP. That's great.

Hi OPB! Hope you’re having a lovely weekend. Keep us posted.

OPB I'm praying for you.

OP Brian, we are hoping you are well and looking forward to hearing from you soon.

Hi Brian! Hope you’re doing okay. I hope you’re enjoying your weekend.

Tomorrow is the rollout for Buttigieg at noon South Bend time, keep your eyes open for that.

OP Brian and r230 and, for that matter, everyone else here: In the words of Coach in "Hoosiers"---

I love you guys.

Knock knock. OP Brian.... please check in. We are worried we haven't heard from.

Thank you, r276 for bumping this. Hi OPB. Hope things are okay with you.

Hey! OPB here. Thanks to those asking for an update. I have been feeling better, but I still sleep a lot more than I would like to. It might be a side effect of the fentanyl patch, my fried thyroid, or just exhaustion from everything I've had to deal with. My guess is it's the fentanyl, and I am weaning myself off it. I have my first post-op scan and a meeting with the radiologist on Monday. My fingers are crossed for a clean bill of health.

I still can't eat normally, but start swallow therapy tomorrow. I'm guessing it will take about 3 months before I can remove the feeding tube. I still can't talk entirely legibly, and start speech therapy in June, which is the soonest there was an opening. There must be a dire shortage of speech therapists. In the meantime, I walk around the house saying "The rain in Spain stays mainly in the plain," but it does not seem to help. (By Jove, he DOESN'T got it!)

Thank you for asking. I will report the scan results on Monday. I hope everyone has a wonderful day.

Hi op! I'm glad you're feeling better.

Hi OP! Sending love and good vibes your way.

OP Brian, thanks so much for checking in. Maybe a new phrase? How about 'Show me the money' or 'Love means never having to say you're sorry?' (Sorry, can't think of anything witty) lol

It does sound like you're in better spirits. We're very happy to hear it.

Thanks for the updates, I am glad you're feeling better. Will be thinking about you on monday! Fingers crossed.

Ngank you, r282. Ngak ngakes nge ngeel ngetter.

Yes! Fingers crossed and we are expecting not only your good news on Monday....but also....maybe news about a certain trip you've been planning?

OPB here. I got the results of the scan, and I'm clean. I was greatly relieved, because I still have a nagging sore on my tongue, which is just an ulcer left over from radiation. The trip, alas, will have to be indefinitely postponed, because it is taking much longer to learn how to eat than I thought it would. I'm still completely dependent on a feeding tube, and I would rather not travel until I can eat normally. Thank you all for the kind words and support. I hope everyone's day is fantastic!

HEY! OP Brian.. One Thought.....

That's great news about the scan, OP Brian. Sorry you have had to postpone your trip again, but glad to hear of your steady progress.

wonderful news OP! Keep on keeping on. Hang tough and take it easy...wishing you and everyone in this thread the best of health!

YAY BRIAN!!!

What a relief. I thought it was probably something like that, but it’s nice to know for sure, isn’t it!

Go do something nice for yourself to celebrate.

In London and sending positive thoughts to you, Brian. x

Great news OP Brian! Sending love and good wishes to you and everyone in this thread.

Thank you, OPB for the update. Baby steps, but always forward. Sending positive healing vibes.

Phenomenal news, Brian! Have they recommended any topical mouthwash to help with the sore? I suffer from dry mouth at times and found that biotene mouth rinse does a lot more than help dryness, it also soothes and seems to have a bit of protection value for scraped gums and the like. I don't know if it would help, but if you don't have prescription stuff, maybe give it a try? Just makes sure to swish for at least 15 seconds to get the benefits, and no stinging of regular mouthwash. So glad you checked in! Congratulations!

Have you started doing any painting, Brian?

I know swallowing is quite difficult to relearn if the muscles or nerves are damaged. I assume they are trying things like swallowing saliva first. I think some have success with really tiny slurps of applesauce and similar textured things. Best of luck. My brother is recovering from throat cancer treatments last fall and winter, and swallowing is still difficult for him, but he is able to do it. He needs to have lots of liquids - and applesauce in those little suckable containers for babies is one of his go-to's

Hey OP. I'm an speech therapist and we work on both speech and swallowing. I would actually have you working on both right now. Sorry you're having trouble finding someone to work with. I know you will get better because you will be a patient that does their homework!

OP Brian, this is your weekly nag to check in. Our concern for your well being is NOT going away... So don't go and ghost us, we WILL hunt you down. Lol

Please do give us a sign you're ok... we miss you.

Waiting for our OP Brian update!

Congratulations on receiving such good news, OP Brian!

The surgical removal of my cancer was not nearly as significant as yours, but I did lose a chunk of my tongue. In the days leading up to a follow-up appointment with my surgeon, I sang The Alphabet Song over and over so that I could more confidently ask him if I could return to work. Back to basics, LOL!

OPB here! I was surprised to see this thread bumped to the top of the watched list. Thank you all for your kind thoughts. Oddly enough, today was a rough day. I am in swallow therapy, but I despair that I will never be able to eat again. Today, I had panic attacks. So much of what I enjoy socially revolves around food -- one of my favorite things to do is to sit in a restaurant alone with a book -- and I get anxious that I will never be able to do that again. I know it is too early to know what I will and will not be able to eat, and the thought of potentially not being able to eat solid food again is a frightening one. I am also starting to worry about getting pneumonia because I continue to aspirate. I know my life will be shortened because, well, people who get cancer do not live as long as those who don't, regardless of whether the cancer recurs, and I am really ok with that, just as long as I outlive my mother and my pets. I would like, however, to be able to enjoy what is left. Not being able to eat makes it difficult to travel, to socialize, to do most everything. You don't realize how central it is to your life until you can not do it. I'm sorry to be a downer tonight, but I was having a rough day. You kind thoughts and words helped. Thank you.

Don't feel like you're burdening us with your thoughts and feelings, this is what we're here for. I am sorry to hear about this rough time, but please don't stress about a possible outcome in the future. As you've said, it's too early. r299, how long was the process for you until you could eat solid things?

OPB, thank you for the update. We are here for you.

R301 is right! Don’t stress. Amazing things can happen.

Try to maintain hope Brian. Don't let these fears overwhelm you - since it is still very early this recovery stage. Breathe. Deep breaths.

Hi Brian, Good to hear from you. Post any time you feel like it. I enjoy food a lot, too. I hope you can get back to eating some of your favorites as time goes on.

Brian, if you’re worried about pneumonia, sit upright on a chair or with a pillow behind you, or stand and walk during the day. Clean the house, stationary bicycle, do anything to sit up straight or stand up. If the weather is warm and sunny, sit or stand upright outside. If it isn’t or you can’t, walk in a circle in the house a bit every day. Do laps. This also keeps your muscle tone up and helps build up your immunity. If you’re staying in bed every day, you need to get up and walk a bit every day even if you get depressed, to prevent blood clots. This will also help your lungs drain.

A lot of sick people get pneumonia from lying in bed because their lungs don’t drain when they are lying down all the time. Avoid that if you can. It will help you breathe generally.

Another thing that may help is change your sheets and nightclothes a lot. Don’t wear nightclothes several days even if you feel terrible. Stay as clean as you can and wash your hands frequently. Change your pillowcases very frequently. Try to keep your bedroom as clean and clutter free as possible. Put away the decorative pillows and dry cleanable throws, and keep to things that can be washed in the machine.

Wipe down surfaces frequently. Don’t use bleach or breathe bleach. It can kill good bacteria in your lungs if you’re handling it yourself. You can wash clothing and linens with hot water and soap if you need to, and that should work unless you’re told otherwise. Cleaning with vinegar makes a harsh environment for germs, but peroxide is better.

Also, the UV rays of the sun are a disinfectant, so you can put things out in the sun all day that can’t be cleaned any other way. It takes all day.

Also, if you have really bad panic attacks, I found two things helped me, one was finding a spot on the ceiling and focusing on it. Something about not looking down helped. The other one, if it got really unreasonable, is to do simple math problems in my head. I would mentally measure the windows in my room and calculate how much yardage it took to make curtains for them. It’s hard to do math and panic at the same time, it’s different parts of your brain.

This too shall pass. It’ll be okay, just be patient.

[R301], as I mentioned, my surgery was significantly less extensive and traumatizing than OP Brian's and, as a result, so was my post-op treatment and recovery. I was told soft foods, like oatmeal or scrambled eggs, would be okay if I could tolerate them, but I couldn't, so that first week or so was all about liquids and popsicles. I was able to move on to soft foods during the second week, which I stuck to for another couple of weeks (learned to "love" instant mashed potatoes). That second week was also when I started practicing talking, which was weird, but The Alphabet Song did help get the ball rolling in that regard. Several years later, I still find myself unsuccessfully forming a word here and there, but I just stop, laugh, and try again.

Hi OP/Brian. That's amazingly good news about your scan. Try to focus on that bright spot when your thoughts get darker. Let it bring you positive energy by reminding yourself of it every day.

You will be able to eat solid food again. I am sure of that.

OPB here again. Thanks for the kind words, and, wow, R305, thank you for that information! I wish my doctors were as forthcoming with information and suggestions as you were. I already practice most of those habits, which might be why I haven't gotten pneumonia so far, and why my doctors do tell my my lungs are clear. Perhaps I am being overly-anxious about it. Thanks again, everyone.

Hi Brian! The reason I suggested putting the decorative pillows away is that bacteria and virus can survive longer on porous surfaces like fabric. It’s harder to survive on very slick surfaces like stainless steel, where there’s nowhere to hide and they’re easily wiped away.

That’s the other reason you have to wash clothing and linens more often. Something like a towel can’t get the pneumonia virus scraped off it unless you wash it. Bathroom counter, just wipe it down easily.

So if you’re recovering from surgery and your immune system is working hard already, make it easier on yourself by removing all the extra porous fabrics and materials that are just bug catchers. When you’re all better, your immune system doesn’t even notice them, but when it’s low you need to make it as easy as you can.

A big part of recovery from major illness is not getting sick again (taking two steps forward and one step back), from picking up some other kind of illness from hanging around germy people. If you go out to the market or someplace, wash your hands the second you get home and don’t touch your face until they’re clean. If you touch a shopping basket handle, wipe it down first with one of those wipes near the market door, and keep wipes in the car and wipe your hands the second you get in the car. Same with doctor visits, there’s sick people in there. When you’re all better you don’t have to any more.

Lying in the sun can also boost your immunity (Vitamin D). You have to expose some skin though. You don’t have to overdo it until you look like Trump, it’s not a tanning bed, just a little bit every day. It can also help with depression.

[quote]wash your hands the second you get home

I just started doing that a few months ago, r309.

So, OP Brian, what ya up to?

Update please, OP Brian!

Hi Brian, how are you doing?

*hugs for you Brian*

This type of cancer is usually caused by analingus.

Hey Brian - Anxious to hear your news please.

Use a dental dam, each time every time.

Hi Brian, haven’t heard from you today so I’m guessing you’re not feeling like posting for whatever reason. I hope everything's okay with you.

If you’re feeling discouraged, I hope it helps to know that there are people that care about you and are thinking of you. Some days are better than others. I hope tomorrow is a good one.

Sending love, Brian xox

Brian, you are allowed to feel down and not wanting to chat, we are just hoping to hear from you to makecertain you are ok. Wish we could help.

🌹🌷🌼🌸🌻❤️🧡💛💚💙

We're here when you need us OP Brian. Anytime ok?

Hi OP Brian, it's ok for you to express negativity. You are fighting to get back to cozy and the experience has been deeply unpleasant. We are here to bear witness to your efforts.

I can’t remember if tongue cancer is a type of oral cancer that results from hpv.

But anyone reading this should know that the FDA changed the HPV vaccine regulations and now anybody under the age of 46 with health insurance can get it for free. It guards against nine different types of HPV virus, one of which causes warts and another to cause cancer. And if you assume that you already have all of them, that’s OK too because they think the vaccine can help your body fight the virus even if you are already infected. Most people don’t know about this and even my phone brought up an article from 2011 about youngsters being immunized. But it’s for everybody under the age of 46 now

If someone has an account they should start a thread about this. Lots of lives could be saved. Most doctors aren’t even aware of this change. Initially the vaccine was reserved for youngsters before they became sexually active, eventually raised the age 23 and now it is 45. If your doctor doesn’t know this, ask them why they don’t know it because any general practitioner should be on top of this shit

Hello from London, OPB! I’m glad to read your last update. If you can avoid it, try not to future-trip too much. The truth is that there are alternative things that you can do if your TPN continues indefinitely. (You made me smile when you said that you love to sit in a restaurant with a book — I love that too.) You have a lot to deal with right now just letting your body heal, which must be frustrating all by itself. Give yourself permission to take a break from worrying too much. You’ll be able to deal with whatever realities happen as they come, honestly. It just takes a little steam. “Normal” changes, and life can still be just as happy and fulfilling when it does. xx

Thanks for mentioning that, R324. And you can’t assume doctors know this stuff because sometimes they don’t keep up.

Hi Brian! I'm thinking of you and hope you are well!

Hi Brian, if you want to kill some time, here’s a link to British Pathe’s YouTube account. There are thousands of newsreels and documentary clips in here. Lots of twentieth century historical events and all kinds of interesting stuff, everything from comedy to tragedy.

Hi Brian, I hope you had a nice weekend. We’re still wondering how you’re doing here, so check in when you can.

I hope you enjoy this picture of a pretty road. I hope there are many beautiful roads ahead for you.

Ok, Brian, if you are reading, even if you don't feel like telling us what's going on, please do wave or something.

Is there anybody who knows Brian personally who can check in on him?

We love you, Brian!

Please say hi.

Hi Brian! Just checking up on you. I’m sick myself this week with a horrible eye infection. One eye is almost swollen shut. I’m on a bunch of antibiotics and it’s still slow going.

Please send a short message for me to read with my one good eye, so I know you’re ok.

😉❤️

Hi Brian, you know we’re not going to quit nagging you, right?

Meet Einstein....

Hey Brian....

Hi Brian!

I’m sending you the fabulous Sutton Foster. Enjoy!

Here’s Bob Fosse and Gwen Verdun:

Loving this!, r337. More please....

OP Brian...please know we're here for you. No questions. We'll just listen.....

And now for something completely different.

Hey Brian, if you have to do some exercises, the Time Warp is actually not too strenuous. Maybe you could dance along.

Don’t try that Gwen Verdun stuff at R337 though, you’ll pull something.

Hi, op. I hope things are okay with you.

This is the incomparable Gwen Verdun in Damn Yankees. The context here is that she is a demon, who’s trying seduce Joe to get his soul.

Joe is played by Tab Hunter, a heartthrob actor of the time, who was a closeted gay man in real life.

Good Morning

Hello Brian, I'm sorry if you're not feeling up to snuff and/or having a difficult recovery, but we're here for you to let off some steam. Hugs.

Hi Brian, I can’t even imagine what you’re going through. But there are a lot of people that care about you here. You’re not alone.

*kisses Brian instead of doll*

Hello

I was hoping for good news...a happy ending but sometimes death is a happy ending, right?

How does one check the obits in Memphis? I tried and just got one heading after another but no obits.

Brian, you there buddy?

R96 you are awesome 👏

I hope things are ok, Brian!

Do you have his last name?

Brian Nash, and doesn't he live in Nashville (not Memphis as per [R348]'s search)?

OP will come back when he pleases, stalker frauen.

He’s been tweeting lots of new art lately. Agree with R354, you all need calm the hysterics.

Speaking of art, I really love his. This one is ‘vintage lunchboxes.’

The Moulin Rouge Room. Click on it to see the whole thing.

He’s scary and a hairy

Jesus, the guy is quiet for a couple of weeks and people are freaking out? Let the guy have his space. If you are worried about him, send him a tweet or email him. Maybe he's taking a bit of a break from here and focusing on other things. A lot of pressure to always have to dodge the "hope you are feeling better" "how are you" questions, let alone the "oh, just get on a plane to England!" posters.

R359 we are not trying to stalk, just concerned over a fellow connection. I think there's too much of solitary living these days. Whether or not Brian wants to talk with us just now is his choice, I agree. But it is my choice if I want to reach out. I am happy to hear he's alive. He may just be needing a break from telling us he feels stuck in the same place right now. I am glad there's enough people here who are concerned about him. Gives me hope for our current times.

You bitches blew his privacy out of the water so I wouldn't blame him if he never returned. I suspect OP is feeling better and working again.

Love and Prayers to you Brian.

He'll return if he needs to, no need to stalk him.

He realized that this had become about you instead of him. He didn’t come here to cure a bunch of terminal do-gooders.

blame is the name of the game with so many of you critics. Speculate all you want but only OP can know why he doesn't require as much support as before. For all we know, he visits this site daily. Good intentions are still the foundation for one being a good person. Blame is just meanness and we all know what kind of person spews blame.

We still care, Brian. Hope you check in soon.

Brian, hope you continue to recover and heal. I, too, am a tongue cancer survivor, and experienced similar treatments and healing issues. I have a few tips for you: The first "food" I could manage was ice cold instant breakfast, lived on it for months once I could swallow. Singing was easier for me than talking for some reason, so when you're ready, try singing along to your favorites. Weaning off of Fentanyl was miserable for me and no one prepared me for this, so just an FYI. Dry mouth is very unpleasant, and it gradually improves. If you have any specific issues, feel free to ask me. Give yourself lots of time to recover. You've been through a battle.

Bump

OPB here! I had to renew my subscription to DL, and clean out my cache and cookies, and I could no longer find this thread using the search engine. I just found it. Thank you for that info, R367. Oddly enough, I can swallow more solid food like grilled vegetables -- badly, mind you -- but I cannot swallow liquids. I aspirate too much. The doctors want me to have an operation to enlarge my esophagus, which I will probably do. It is an outpatient procedure, and, seemingly, fairly simple. According to my swallow therapist, though, I will need the feeding tube for about another year. I'm getting used to it.

Thank you all for the kind words about my health, and my art! I can't tell you how much I appreciate both.

R367 Brian, Fellow survivor R367 here. I also at baked potatoes loaded with butter and sour cream, which slides down pretty well, plus scrambled eggs and french toast, again with tons of butter. The feeding tube made me nauseas and I felt much better when off of it. Grilled sword fish went down pretty easily too. The melty cheesy pizza topping without crust worked too. I always took pain meds before I ate, to get some food down. Hope your surgery goes smoothly, and I am so sorry this is happening to you.

OPBrian!!! So happy to see you! Thanks for checking in! You sound in good spirits, we're very happy!

R367 -- OPB here. Thanks for the advice and suggestions. Before I had the operation, the tumor was so painful that I had to take an oxy before eating. I could not eat otherwise. I'm totally off pain pills now. They had me on 100 m fentanyl patch AND pills, but I was able to wean myself off them with absolutely no trouble. I must be wired differently, because I felt no pangs of addiction when I stopped. My voice is still compromised, although my articulation is up 85; that will get better, but the sound and tone of my voice is not likely to improve. I will always sound impaired. I'm not exactly happy with that -- I still feel like I have to apologize to people because of how I sound -- but you cut the dress to suit the cloth. And great idea about French Toast. I'm partial to pancakes, and might try them in the next week, loaded with syrup! Thanks again to all.

OPB - 367 here. It's especially difficult to explain a speech issue, as others cannot see anything wrong with you and it's really hard to talk and be understood. Phone calls are nearly impossible, so email and text is definitely helpful. Don't look to far down the road. I'm about 2 1/2 years out and my speech is much clearer, but still an effort to enunciate - forget voice recognition devices. My taste buds are limited to salty and sour, but eating is much easier. Such a long road, and others cannot imagine the challenges and how long it takes to recover. It's nice to have someone to share my info with, as this is such a rare disorder, at least in my world.

Love your work, Brian!

Yayy Brian! Thank you for checking and telling us of your process. You've come a very long way and I am proud of you. You're producing a crapton of fun paintings, btw....are you selling any of them?

OPB here. R367. Our experiences sound very similar, and I hope the road is getting easier and easier for you. It has taken a lot longer to recover than I expected it. Also, the odd thing is that I have started to dress much better -- wearing a blazer instead of a hoodie, for instance -- to compensate for the speech impairment. I know it is ridiculous, but I feel I should look as presentable as I can, given my speech can be off-putting to someone.

And thanks for the kind words. Yes, I do sell my paintings. I don't have a day job; that is how I make my living. Although I sell direct and am in a few brick and mortar galleries, I sell most of my paintings through online galleries like Zatista and Saatchi Online. Lately, because of a wonderful online gallery based in Paris — Singulart — most of my sales have been to overseas collectors: I’ve shipped paintings to Hong Kong, Italy, Germany, England, et al. I know I am insanely fortunate and lucky, considering I started painting just a few years ago, and have no formal training.

So wonderful to hear from you, OPB, and with a such a positive update to boot!

Glad to hear you're making progress, are off the pain meds (!) and in good spirits. :-) I concur with the poster above who's impressed with all your new art -- the fact that you're painting again + being so productive must feel EXCELLENT. You have come so so so far since that very first post in the first thread!

Keep on keepin' on!

Best of everything to you and continued recovery.

We'll all be coming to YOU for advice pretty soon, Brian! Great great attitude, and positive mental attitude is everything as we are seeing.

Brian, I am so happy to hear that your artwork is flourishing. I still LOVE my lil painting of my guys in a hot air balloon.

So, Brian, what's going on with you these days?

OPB here. Thanks for asking, R381, and thank you all for the kind wishes. My mood and energy continue to be good, but my ability to speak remains the same. I have good articulation, but I still don't sound like me, and that will take getting used to. Perhaps that will change over time as my tongue gets stronger. I still can't eat well without the feeding tube, and the doctor thinks it might be partly because my esophagus is "tight," so I'm having a procedure next week to enlarge it. It is just an outpatient procedure, fortunately, and, I hope, that eating will be easier after that. As it is, I still rely mostly on my feeding tube, which I think of as an adult umbilical cord. Thanks again for the support and encouragement, and I hope everyone was a fantastic day.

Brian, I commend you for upping your look! Although a well fitted hoodie can be cunning, there's nothing like a guy in a jacket. I hope you have many more turning points as you stay with the speech therapy. Your art is your best friend and comfort, enjoy. xx

Got curious about Brian last night. So glad to find things are looking up.

OP Brian, do you have someone who can go wth you next week? My mom had that procedure done when she was in her 80's. She was fine afterwards....just loopy. Thanks for updating us!

R385. I do, thank you for asking. The hospital requires that someone stay with you whenever you will be sedated. That makes it difficult. What if I didn't know anyone who has the time to wait at the hospital with me? I only know two people who could do it, and, thankfully, one can.

OP Brian, so glad you will have someone with you. Have you ever heard of nextdoor.com? It's a local neighborhood Message Board. You have to apply to belong. Verify in some way that you are in that neighborhood. So it does take a few days. But what a friend of mine who has absolutely nobody to help her has found, if she puts it out there early enough when she needs to go to the doctor, she can always find somebody to drive her and take her back home. She usually offers money. Like $10 an hour. And basically every one of them says no, and she has made a few friends like that. So you may want to look at something like that for the future.

"A guy in a jacket". And hats. Hats tend to distract the eye to the top of the head and give a good shape to it.

OPB here. Then I'm in luck! I've always worn hats. Most guys here in Nashville wear baseball caps -- I suppose that is everywhere, though -- but I wear stingy-brim pork pie hats from Dasmarca. I have a handful of them, and love the way they fit. I also sometimes wear a bowler, although I know that is a bit over the top.

I have always loved hats and when I had chemo my hair thinned considerably I felt justified in buying several. I enjoy them quite often as I'm old and I could wear a bikini and no gay person would ever notice how silly I look.

OPB here. One thing I have noticed after going through treatment is my unwillingness to multi-task. Before all this happened, I could do a million things at once. Watch a move. Carry on with a chat conversation. Paint. Cook. I could bounce from one thing to another, with no problem. Now, not so much. I let the phone message ding, and won't check who texted me until I feel like it. I try to do only one thing at a time, and move on to the next only when I want to. I don't know if the treatment has reduced my ability to have multiple balls in the air, or if I just had to step back to realize how foolish and exhausting it is to juggle so many things at once. Has anyone else who has gone through treatment experienced this, as well? Thank you, and I hope everyone is enjoying their day.

For me I have done the same thing,though I haven't gone through cancer treatment, I have some other health issues. I just decided to say hell with it all I'll do it when I want to. I've learned I don't deal with people who annoy me anymore, I don't deal with people whose political views are so off-the-wall that they just give me grief, it's not worth my time to argue with them at this point. The once in awhile that I have to do some multitasking, I feel like I'm running a race and I no longer like it. You're doing well, Brian, and so i applaud you, continue to do it your way. You deserve to handle your life as you see fit. Bravo for coming to that realization now when your body is healing.

OP Brian, how are you doing? We miss hearing from you.

OPB here. Thank you for the continued interest and good thoughts! I continue to improve. I'm trying to eat at least two meals a day normally, and the rest via the feeding tube. Eating normally continues to be difficult, and always will. My tongue is simply not long enough to move the food that migrates between my teeth and cheek to my chewing area. I will always have to use my fingers or a popsicle stick to move food around my mouth, which is really embarrassing. I can do it with impunity at home, but I would be very self-conscious if I were with someone, or at a restaurant. But...that is what I will have to deal with for the rest of my life, so I will just have to get used to it.

I don't know if anyone who went through treatment has felt this way, but I wanted to spruce up my loft and be surrounded by new things and bright colors. I painted the floors (they're cement), I made a couch and chair (I love building with wood, and have built most of my furniture), I painted the bathroom walls, I hung a bunch of paintings. It is much cheerier now.

Well, onwards and upwards! And I hope everyone has a fantastic day.

Hi Brian, Just now catching up with this thread. I haven't gone through cancer treatments, but I also stopped trying to multitask. It's too tiring. Good idea to spruce up your loft. It's amazing how changing your home or work environment can make you feel better. Take care and check in when you feel like it.

OP, I'm hoping that with time you'll be able to figure out how to use a spoon to help you move food from the front of your mouth to the back of it, so that you don't feel self-conscious eating in public. It will probably take a lot of practice. You didn't mention how your speech therapy was going. I know that was frustrating for you, but I'm gonna guess that it's been improving. So many new skills to learn - but the main thing is that you're mending now from the surgery! Best wishes to you.

OPB, great to hear from you! I love the feeling rearranging furniture and changing things around gives me, so glad you are getting pleasure from it too. I did a quick search on special utensils, and found the below link, not sure if it would help you at all, but thought I'd pass it along. Are you thinking about resuming your pre-surgery travel plans? It sounds like you are feeling so much better, I hope you consider it. Thanks for the update!

What a clever and practical suggestion, r397. It's amazing the variety of adaptive devices are out there!

OPB, there are also the more elegant chopsticks, which come in a variety of widths, lengths, materials. They can come in travel pouches or boxes:

OPB here. Chopsticks might be an excellent idea! I had not thought of them. And, yes, it is remarkable how many adaptive devices there are out there, and surprising that doctors and therapists don't suggest them, and, in many cases, are not even aware of them. A friend of mine has Parkinsons, and has trouble eating because he can't keep his eating utensil stable. I saw an article about a spoon that is on a spring, so it is constantly level, no matter how much the hand holding it shakes. It is perfect for him. Also, I have lymphedema as a result of my surgery -- essentially, they cut out my lymph nodes in my neck, so the fluid has to be manually drained into my body -- but I read that jumping on a trampoline activates draining. My doctors were unaware of the effects. I think it just goes to show that it is not possible for doctors to be aware of all non-medical advancements, and we have to tae it upon ourselves to find things that work for us.

Ah, glad to have found this thread again! And glad to hear you're doing so well, OPB!

Is this really JPG?

Hi Brian, Good to get an update. I hope you find some info about trampolines, etc. Maybe just read the Amazon reviews. Take care and hang in there.

OPB here. I wanted to give you an update that is not, I'm afraid, a happy one.

I had a bunch of scans over the last few weeks, and the cancer has spread to my lungs. If I don't have treatment, I will have just 3 - 6 months left to live. If I get chemo and take assorted drugs, I will have a year or two. I'm leaning towards not having treatment, since I would rather not suffer the side-effects of chemo and anti-cancer drugs. Sure, I will have a few more months to live, but they will be miserable months.

My doctor is looking into arranging a place where I can have assisted euthanasia. They have it in Hawaii, and I might meet my sister and mom there, so they can be say goodbye. Or, perhaps, I will do it in VT, since I spent so much time there when I was younger, skiing, and went to Dartmouth, right on the NH/VT, and love that part of the world.

If I knew the reaction from the drugs and chemo would not be severe, I would be tempted to try them, but my first round was just miserable.

I'm sorry to report bad news. You all have been so incredibly wonderful and supportive. And I can't thank you enough.

I am saddened to hear your news Brian. (after a DL hiatus, I searched threads yesterday containing you) I support and applaude your efforts to enjoy your time as comfortably as possible. We all deserve to go out on our own terms. You are very brave, and I'm glad you can make the arrangements you speak of. I shall continue to pray for you. Perhaps consider some natural or alternative treatments in the meantime.

Brian, I am devastated to hear this. I'm wishing you peace with whatever route you choose to take. If I'm ever afflicted with a serious illness I hope I am able to handle it as courageously as you have. Thank you for sharing your journey with us. Love, John.

I hope it will be better on the other side. Maybe I'll meet you there?

OPB, I haven't posted here in a while (fellow tongue cancer patient lucky enough to only lose part of my tongue to it), but I have been keeping tabs on you, and I am very sorry you have received such bad news.

[quote]If I knew the reaction from the drugs and chemo would not be severe, I would be tempted to try them, but my first round was just miserable.

Have you considered trying the recommended chemo with the option of discontinuing it if the side-effects are too severe?

I wish you the best possible outcome no matter what you ultimately decide.

I'm very sorry to hear about this, OP. Even under the best possible scenario, treatments for a life-threatening illness still involves a lot of poking and prodding, loss of dignity, and constant effort to reassert your own sense of self - you as the talented person you are, not you as merely a patient at the mercy of the medical professionals around you.

I would wish a couple of things for you. A serious discussion with your doctor about maximum palliation - you've already been through a lot of pain in trying to get cured, pain avoidance is important from here on out, with no dickering about doses or addiction or whatever. Enough energy to do some of the stuff you truly love - your art, non-strenuous travel, seeing friends and family, maybe one last big project that gives you pleasure. Enough money to treat yourself to massages and other things that feel good and give you relief, even if just temporary. Although life sometimes tastes like ashes after a doctor gives you horrible news, the reality is that it ain't over til it's over. Having a plan for euthanasia is smart, because if that is in place, you might actually feel a sense of relief. No need to rush it. I read a line once that made me smile, when I was going through some very serious health issues. "The best revenge is to outlive your doctor". Making that your plan, even if just in jest, isn't a bad idea.

OP, I sent you a DM via Twitter. I am your "other" cozy friend. I've been MIA. I am beyond sorry to hear your update. Check your DMs from someone with Lambchop as their profile pic. That is me. Let's get our cozy on where we can.

OP, I remember when you first posted here about your tongue cancer. It broke my heart when you said you weren't needed, and were considering checking out at that time to avoid dealing with the tongue cancer treatment. You decided to weather the course evidently, and, despite the recent bad news, I hope you found it worthwhile -- it was certainly worthwhile to me.

Such devastating news, dear Brian: I’m so sorry for you. I understand that you’re leaning toward no chemo and treatment, and I hope that your doctors can help you in finding whatever palliative care suits you best and/or assisted euthanasia. I wish you as little pain as possible and all the support from (and for) your sister and mom. Love and hugs from Belgium.

OPB, I'm so deeply sorry to hear this news. Sending much love and virtual support your way, whatever you decide to do. Please keep us posted if you can.

Brian, I'm sad to hear your news. I can respect whatever decision you make about the rest of your life. Thank you for letting us into your life a bit. I hope you can continue to post here, but if not, it's understandable.

I'm sorry to see this update but applaud you exploring options. I normally come to DL to laugh, be catty, and just kill time. Whatever brings us here we are a community and it stings when one of us dealing with such a burden. I wish you the best and you know if you need to vent, get some encouragement or just push someone into the old proverbial grease fire we are here for you.

OPB here. I have my follow-up appointment with my doctor the first week of August, at which time I will be making my decisions. One of my exes -- and still one of my closest and favorite friends -- will fly down from NYC to help me sort it out. I know that is a trip no one wants to make, but I appreciate his volunteering to help. If the chemo's side effects are minimal and disappear once I stop, I might go that route, so I can get a few more months in which I could do some traveling, etc. The effects of my last round of treatment lingered for 3 months, but that was mostly because of the radiation I had concurrent with the chemo, so it is easy for me to lump them all together. My doctors are amazing in terms of prescribing whatever pain drugs I need, but I would prefer to not do any of them, or as little as I possibly can. I was on some heavy-duty stuff during treatment -- a 100 m fentanyl patch AND a pump that dripped opioids directly into my bloodstream -- and, fortunately, I am one of the few who actively dislike the feeling that opioids give. My prognosis is definitive -- I WILL die very soon from this -- and don't wish to mask the inevitable under a haze of drugs. The tricky part is going to be knowing when the right moment has come to exit, but I suppose I will know it, like how you know when it is time to put an animal to sleep. (Which, regrettably, I've had to do twice in the last few weeks. First, my 12-year old dog, and, just yesterday, a wonderful 15 year old Siamese cat. Both of them had cancer, too.) I know it a foolish thing to worry about, but I worry about the two cats I have left. When I took them in as strays, I felt it was my responsibility to take care of them for life. I feel like I am not living up to my responsibility. My sister will take them, and they love her, but I still feel like I am letting them down. Foolish, I know. Anyway, thank you all for your support and suggestions, and for sharing this ride with me.

Oh, OPB, sincere condolences on the passings of your beloved pets. I firmly believe, as MARY! as it may sound, that they'll be waiting to greet you on the other side when the time comes.

Thank *you* for sharing this ride with all of us, and being so open and honest about your feelings through the ups, down and otherwise. Through these threads, I've discovered a fantastic and fun contemporary artist whose work is totally up my alley -- whom I (and, probably, others in these threads) might never have found otherwise.

And, as I think I said somewhere in the 1st thread and reiterated in this one, these discussions are why I love the DL.

We can be catty and mean and silly (I'm sure there will be some gallows humor if/when you're ready for it ;-)), but we can also be loving and supportive and kind when someone reaches out, is in need or just wants to talk.

Here's hoping the upcoming weeks bring you the info you need to move forward in the way that feels right for you. As always, we're here as long as you need us.

Brian, at this point, the lung cancer seems to be more the problem than the tongue cancer. People in general have more experience with lung cancer than tongue cancer, probably. My mom died of lung cancer and basically didn't want to fight it 100%. But she did do treatments to alleviate pain (she had tumors metastasized in the brain). So, she did radiation on the brain tumors.

Too bad we can't change the title of this thread, but I think there are people out there who would have good ideas for lung cancer.

Brian-

Have you looked into clinical trials? There are so many new drugs and treatments being developed or just now coming out. Ask your doctor about it, or seek a second opinion.

I know of a guy who had an aggressive form of parotid gland cancer which metastasized, he was put on a brand-new investigational drug and is still stable now, 3 years later. I’m linking his blog below (he was a staffer for Hillary Clinton in 2016):

Oh Brian, I am so crushed to hear this....you've been so incredibly brave to bring your journey here to us and being frank about everything. I don't have anything to offer but my heartfelt love over the internet. If you need anything, please reach out to us....I will try to do what I can to help. You've shown us that DL has a bit of light in its black tarry heart.

Thank you so much for your portrait of my guys, I will treasure it always.

OPB here. I have decided to try chemo, starting Monday. The doctors swear that the side-effects will be minimal, and will go away quickly if I decide to stop. I hope they are not saying that just to get me to agree to doing it, because I do believe that they underestimated the effects of the initial treatment. The main reason I'm going to try the chemo, though, R419, is that Vandy does have some clinical trials, but I am not a candidate unless I have tried chemo and it didn't work. So there is a risk here. The cancer is fast-moving, so they have to be able to detect that chemo is not working AND get me in a trial before the cancer spreads even more. I am continuing on as though I just have three months. My sister will take my cats. I will make plans to donate my furniture to a local organization that rents apartments for battered women. I will leave my clothes -- and I have a lot of them! -- to a homeless shelter. Etc. If I have more time, great. If not, I will be as ready as possible.

[quote] Brian, at this point, the lung cancer seems to be more the problem than the tongue cancer.

He doesn't have lung cancer. He has tongue cancer that has metastasized to his lungs. It's not the same thing.

OPB, I am very sorry to hear your terrible news, but as someone who is also dealing with metastatic cancer, I'm glad you're giving a chemo a shot, and looking into clinical trials. Some amazing advances are being made in the areas of immunotherapy and targeted therapies. I totally get the quality of life vs. length of life dilemma, but as you've noted, you can always stop treatment if you feel it's making you too ill. And while it's important to be realistic about one's prognosis, my oncologist always says that without a crystal ball, nobody knows for sure when someone will die—and I belong to an online cancer group in which many members were given a few months to a couple years to live and are still alive and doing well 5, 10, or more years later.

Love you, Brian.

Brian,

I have not commented much on these threads but I've followed them with great interest. I am gutted to hear your news. As trite as it sounds, none of us know when we'll die. Some of us here may very well beat you to the Pearly Gates. Life is full of uncertainties and because of that we should all be living our best lives every single day. I wish you nothing but peace. You are an example to us all.

With much love,

Warren

OPB here, R422 and others. It continues to astound and humble me that so many of you are dealing with your own illnesses, yet take the time and energy to be supportive and helpful That is a true community, and I can't thank you enough.

Brian, please look into getting a second opinion, preferably at one of the main cancer centers (MD Anderson in Houston, Sloan-Kettering in NYC or Dana Farber in Boston.) There might be something your team has missed or an option they haven’t considered. I read about this sort of thing all the time.

OPB here. Are you my sister?!? She is on me to get a second option, too, at Dana Farber. My whole family is from Boston proper, and she lives close to the hospital. I'm on the fence about it. There is incontestable proof that the cancer has spread, and tongue cancer is notoriously aggressive and fast-moving. I'm not sure what another opinion would yield. One of my good friends is a chief of surgery at Vanderbilt -- where I had my surgery -- and I am meeting him for a movie tomorrow night. I make it a rule to never ask professionals for advice during non-business hours, but I might make an exception this time.

Brian, all my love and care sent to you. I'd love to give you a hug right now.

You're doing the right thing giving chemo a chance, doing nothing would only compound those moments we all have when we're alone and become terrified. I can't begin to describe my sadness hearing of your current situation. My prostate cancer has entered my lungs so I can't be sure how much time I have left either, I'm a totally different case and just 30 months shy of 80. That's a far cry from being only 60 with potentially so many more years to look forward to. We're all here doing our best to consolidate our good intentions on your behalf. There are many tears being shed on your behalf, I hope it helps a little when you're by yourself late at night. Forgive my prattle, devastation does this to me.

OPB, r422 here, you're very welcome. I feel less alone in my illness when I'm reminded that many others are going through the same or worse. And I'm not your sister, but I agree with r426 that a second opinion is a good idea. Obviously, it won't change the fact that the cancer has spread, but another oncologist might have a different idea about the best treatment plan for you and/or might be aware of clinical trials outside of Vanderbilt that you could qualify for now.

BTW, if you do decide to get a second opinion, I'm happy to try to help you find someone to see. I have a different kind of cancer from yours, but my fave oncology nurse worked for many years at MD Anderson and could likely recommend a good head and neck cancer specialist there, and I'm in NYC, so I'm sure one or more of the several oncologists I've seen here could recommend a good head and neck cancer onc at Sloan-Kettering or elsewhere in the city.

[quote]You're doing the right thing giving chemo a chance, doing nothing would only compound those moments we all have when we're alone and become terrified. I can't begin to describe my sadness hearing of your current situation. My prostate cancer has entered my lungs so I can't be sure how much time I have left either, I'm a totally different case and just 30 months shy of 80. That's a far cry from being only 60 with potentially so many more years to look forward to. We're all here doing our best to consolidate our good intentions on your behalf. There are many tears being shed on your behalf, I hope it helps a little when you're by yourself late at night. Forgive my prattle, devastation does this to me.

R429 You sound like a kind and generous person, and I am truly sorry for your situation. Please know that someone has shed a tear for you too this night. I wish you nothing but peace. Godspeed.

I am so sorry to hear this, OP. I am devastated and don't know what to say.

[Quote]You're doing the right thing giving chemo a chance, doing nothing would only compound those moments we all have when we're alone and become terrified. I can't begin to describe my sadness hearing of your current situation. My prostate cancer has entered my lungs so I can't be sure how much time I have left either, I'm a totally different case and just 30 months shy of 80. That's a far cry from being only 60 with potentially so many more years to look forward to. We're all here doing our best to consolidate our good intentions on your behalf. There are many tears being shed on your behalf, I hope it helps a little when you're by yourself late at night. Forgive my prattle, devastation does this to me.

Your post made me weep, r429.

Brian - If I had one personal wish, it would be to gather all these DL posters together, fly us to a lush tropical island for a month, regale you with outrageously funny tales till you stoop over from laughing so hard, hold you, comfort you, admire every sunset and sunrise, walk along the beach breathing the salty air, dancing till our feet hurt, and listening to beautiful music by a fire. Since I can't make this wish happen, I send you this.

What a sweet idea, R433!

OPB here. I had my first chemo session yesterday. I will, henceforth, have it every Monday. I won't feel the side-effects for a few days, and won't know if it is working for a few weeks. I don't expect miracles, but I will be more than happy if it gives me a few more months. Three months to live is really not long enough to tidy up all the loose ends and get everything in order, but I realize I am fortunate to know that I need to do that, soon. Most people don't get that opportunity; they either die suddenly, too are too ill and unprepared for their end.

Hi Brian - I'm glad you are going to try the chemo after all. A few more months will be precious time for you to savour. More time with your sister, friends and the cats you love. I'll be here and so will all the kind DL posters here. Sleep well for now and we'll catch up tomorrow.

R433

I am also glad you have opted to undergo chemo, and very much hope you have an easier go of it this round than you experienced the first time.

You have our support as you continue to "rage, rage against the dying of the light," OPB!

Brian, please look into getting a second opinion and also clinical trials. There are so many new and innovative drugs being developed, Remember Jimmy Carter and his metastatic melanoma to his brain? He was given that “6 months to live” crap but he got on a brand new investigational agent and now he’s still here traveling around giving speeches and doing good deeds several years later. Ask your doctors (including a second opinion one) to search for clinical trials you might be eligible for. Your oncology group might even have a nurse manager in charge of doing that as her only job.

This is so sad. Much love to you, Brian.

This is so sad. Much love to you, Brian.

R437 -- OPB here. Vanderbilt has many clinical trials, but I am not be eligible for them unless I try chemo first, which is one reason I am doing that. I was in an immuno building clinical trial BEFORE I had surgery; their thought was that it would reduce the tumor. It had no positive effect, however, yet it allowed the tumor to grow larger as I spent months on the trial. I thought about getting a second opinion, but I completely trust my doctors, and the hospital is blocks from my house. I would hate to uproot everything for something that won't lead to a cure, no matter where I go, or whose opinion I seek. There is no cure for this, just ways of extending what time I have left. Thank you all to everyone who has expressed support. xo

Love and tears for you OPB from Australia.

Thanks for checking in, Brian. I support you in whatever you decide to do. I hope you can take care of matters (cats, finances, advance health care directive, etc.). It's a good thing to do for anyone, not just for someone who has a life-threatening situation.

Hi Brian. I wish I had words or actions to help you in any way. All I know is that I’m thinking of you and have thought of you often. Sending you love from London. Sleep well tonight. x

Hi Brian! Thinking of you right now. Sending you love.

Hi Brian! Thinking of you right now. Sending you love.

Hi Brian, I hope your week went ok and you are able to rest now on the weekend. Mostly hoping you are holding up and enjoying some time with your sister and friends. Please keep up posted on how you're doing. Sleep well. XO

^^^^Meant to type "keep us posted..."

R446

We are here for you OP, for whatever strength we can give you

How are you doing with the chemo Brian? Another Monday is rolling around.

My favorite cousin is named Brian, as kids we called him Briany Baby.

Brian- I must tell you that I read your thread off and on and was amazed by your bravery and attitude. But I avoided it because it hurt to much to read-

I had not viewed it in a month. And to come back and read this was devastating.

I am from NH , and for some reason it gave me comfort that you have good memories from VT and New England.

I am praying for your peace, comfort ,and protection. I feel that there is so much more than what we can see with our eyes.

OPB here. Yes, R450, I love New England. Vermont is one place where assisted euthanasia is available, and briefly, I thought of renting a house up there with some of my old Dartmouth classmates for one final party before doing it. (It sounds so Big Chill.) It turns out, though, that you have to be a resident of VT in order to avail yourself to it, so I doubt I will get back to the area.

Round two of chemo is tomorrow. It will probably be a few more weeks before I find out if it is working. I know it won't cure anything, but I will be happy if I get a few more months.

My ex, who is now a good friend, is coming down from NYC to go to a doctor's appointment on Thursday, and to help me sort out some issues. I have not been able to talk to any local friends because they are too emotional and not objective about what is going on, so I look forward to talking to him.

Thank you all for your good wishes!

My ex

Brian, you could get a few more YEARS, not months, on the right agent/regimen. Glad to hear you’re thinking in more hopeful terms. ❤️

[quote] I have not been able to talk to any local friends because they are too emotional and not objective about what is going on ...

Hi Brian, I hope a couple of your "local friends" settle down and become more helpful.

Hope you have a good day, Brian.

Good question! Why the fuck does eating pussy cause throat cancer? It is terrifying.

Good question! Why the fuck does eating pussy cause throat cancer? It is terrifying.

Gentle bump.

Hugs for you Brian.

Thinking of you.

Thinking of you, Brian. I have not seen this thread in a long while, and I am sad reading the updates. We are here for you.

Best wishes, Brian, may you find meaning and comfort in every day for the rest of your life.

I've followed your threads, posting now and then, but hadn't seen one for a while. I'm sorry things haven't progressed as hoped, but you have been an inspiration to many of us here on jaded and snarky DL. My wish for you is that you are bathed in love as you face the coming challenges. You have shown courage and quality of character and shared it with us. I hope you are feeling the love we send back.

Brian, I can't imagine what life is like for you since finding cancer has spread. I'm an atheist, but still, each evening when I go to bed I make a request just in case there is an entity able to "hear." Your situation makes me vibrate in frustration not being able to do a damn good thing to help you out. I hope your support fiends in Memphis are able to bring a degree of hope and or happiness into your daily life. I am hoping you chemo bring you closer to those trial drugs that may set you free of this disease. Wishing you my very best...

Good thoughts and vibes for you Brian. You truly are a brave soul.

All good things. You are protected.

Hi Brian - Hugs, hugs and more hugs.

OPB here. I have decided against assisted euthanasia, and will do it alone. I’ve tried to get my doctors to prescribe the drugs I need — seconal or nebutal — but they will not. They are available over the counter in Mexico, but I would prefer to not have to go there to get them. I imagine they can be bought online, although I suspect the chances of being scammed are pretty good. I will figure out how to get them, even if it means I do have to go to Mexico.

I don’t plan on using them right away, but I want to be prepared for when I do need them. Will that be a month from now? A year? I don’t know, but I think I will know when it is time. I would rather die when I still have some life in me, than to waste away at a hospice.

My first — and only, actually — true love flew down from NYC to visit me this week. We lived together for about 8 years, and, after we broke up, we remained close for 30 more years. It meant the world to me that he visited, and I was happy to see him. I have a few grad school classmates visiting this coming weekend. I appreciate that people want to see me while they can.

Hi Brian - I have no knowledge of U.S. regarding assisted suicide but I must admit I am a bit surprised to hear your doctors' stance. Agree, online could be risky. Have you thought of Canada? I did a quick search on assisted suicide in Canada and found this:

"In June 2016, the Parliament of Canada passed federal legislation that allows eligible Canadian adults to request medical assistance in dying.". Link below for further details.

I am so glad your longtime NY friend was and continues to be such a support for you. You are both lucky to have each other. I do hope you are not in too much physical pain and able to get some rest. The summer heat has finally broken - good time for short walks if able. Is your sister able to visit? Sending heartfelt wishes your way on this Sunday.

- Canadian friend

R466 -- Assisted euthanasia is available in 9 states in the US. The problem is, most of them require that you are a resident of that state, and almost all require psychiatric evaluation. I initially thought I would meet my sister and mom in, say, Hawaii or Oregon and have it done there, but, the truth is, I simply want to die at home. I don't want to have to travel and go through the process of being approved. and questioned, and, at that point, I doubt will have much energy left, making a trip like that even less appealing. Worse comes to worse, I will go to Mexico, although I wish I could trust the internet to find something online.

Brian, I am so sad to hear things have come to this. However if (IF) you do get to that point please look into palliative care services (not the same thing as hospice - palliative care specialists can help immensely to keep you comfortable and able to optimize your life) and, again IF it comes down to end of life care, consider hospice. Again they are experts in helping people stay comfortable at that stage of life. It doesn’t mean being “doped up,” just comfortable.

I’m sure Vanderbilt has some top-notch palliative care and hospice services available.

Brian, probably not what you want to hear at this point, but what about hospice? You don't actually have to live in a hospice facility. You can do "home hospice." R468 's post reminded me that hospice would not hesitate to prescribe palliative rxs. Hospice would also provide you with what you need to stay at home. A family member did that and it was a positive experience. At the very end, the family member ended up in a hospice facility. The people who worked for hospice were kind. When I read obituaries, I'm not surprised that people give thanks to caregivers who they've only known briefly towards the end of life.

r469 Did you even read Brian's most recent post?

" I would rather die when I still have some life in me, than to waste away at a hospice."

I see this a lot on these threads. He will outline exactly what he can do/can't do, will consider/ won't consider, and right away come replies telling him to consider what he has already taken out of consderation, or to try to do what he has already said he can't do.

Not speaking for Brian , but it is maddening.

I guess what I was saying is that you don't have to "waste away" at hospice. You can live your life how you want during home hospice; nobody's monitoring you. Hospice provides you with things you might need in your particular situation (e.g., pain killers).

OPB would actually be eligible to sign up with hospice now, since his doctors have diagnosed him with a terminal condition. However, that would mean discontinuing his chemo, unless his doctors designate the chemo as palliative. However, if OPB decides at some point that he's had it with chemo, or it's not doing what we all hope it will do, which is to put him in long remission, hospice can quickly become involved with home palliative care. I regard home hospice as essentially slow-motion assisted suicide, since the workers don't stint on morphine and other pain medication. Those medications depress breathing over time at high doses and put people into longer and longer sleeps until eventually they just drift off. It's usually a much quicker process than most people realize. They'll say one month, but it's often a matter of just a few days.

OP Brian your decision makes me very sad butI respect your resolve.

Hugs for you today Brian. My guys say hi to you:

Thinking of you, OPB.

^^^^ So am I.

Me too.

Me three!

Hospice always has that special dose in the fridge

If this is JPG I hope you realize it could all be fake.

OPB here. Who or what is JPG? I think my situation -- and web site, etc -- has been documented enough for the situation to be verified. What kind of mad man would fake something like this?

Two of my grad school room mates and two other friends visited this weekend. I was dreading their visit because I didn't know how I would react emotionally, since, essentially, they came to see me before I died. They are wonderful friends whom I've known for years, and, thankfully, it was great to see them. I was touched that they all visited, and it did not feel morbid. I regret that I have not seen them more in the last few years.

I have another round of chemo tomorrow. Although it is causing a rash on my face and chest, I still do not feel significant side effect from it. There is only a 25-30% chance that the chemo will have a positive effect, but I remain hopeful. I have already started sourcing the drugs I need to make an exit when the time comes, and I hope I will be be able to get them well before they are needed.

One good thing that has come from this: I had a best friend here for about 20 years. We were like brothers, but we had become estranged in the last few years. He got married and has a family now, and I realize that people's lives change after something like that. We had a few minor disagreements that just seemed to not get resolved. I've tried to bridge the gap between us over the last few years, but nothing seemed to work. I emailed to tell him my situation, though, and all the distance between us disappeared like that. He's a great guy, and I'm glad I was able to reestablish our friendship while I had a chance.

Again, thank you all for your kindness and support. I can't even begin to tell you how grateful I am that I have this as a soundboard and a journal of sorts.

Brian I am so glad to hear you sounding more hopeful. Are there any clinical trials going on that you might be eligible for? There are great things happening for some head and neck cancers as well as breast and bladder cancers and melanoma and others right now. Look at Jimmy Carter, he was diagnosed with malignant melanoma and given that “months left to live” b.s. but he’s still alive and kicking now years later, on some brand-new just discovered drug or other.

And I’m sorry that a couple of sad trolls invaded your thread.

R482. Vanderbilt does, indeed, have some clinical trials, but I will not be eligible for them unless I go through chemo and it does not work. Most of the trials, though, involve immunotherapy, which I tried before surgery, and it did not have any effect. Since my cancer has metastasized, there is no cure for it, but here's hoping they can slow the growth for a little bit.

Hey OPB, I completely forgot, but this cream, Biafine is made specifically for radiation burns. Can I send it to you? It does help- I've had some friends who have had chemo, and it does help with the rash. For everyone else, it's great for sunburns or post laser surgery recovery:

[quote]I can't even begin to tell you how grateful I am that I have this as a soundboard and a journal of sorts.

OPB, just wondering if you've shared this thread with any of your friends and family... or, perhaps, if you plan on giving them "directions" on where to find it later on. It might be comforting for them to read at some point, to see how you dealt with things and what you were thinking/feeling. We're coming up on the one-year anniversary of the start of the first thread, and so much has happened since.

Just an idea.

Hope you have a good week!

Brian, There are many different immunotherapy agents and more are being discovered/developed all the time. It’s not a one size fits all I tried immunotherapy and it didn’t work thing.

JPG refers to Judy "Pills" Garland, an old troll here on DL. Someone on the recent All Our Yesterdays thread said you were JPG, OPB.

Hey Brian, thinking of you.

Shit, Brian, I didn't see your recent updates. I'm sorry. You are so brave to go through chemo again and I hope it will be effective.

Also, I wanted to say, when doctors make prediction on life expectancy it is just an estimation, and not always accurate. I'm a medical student and when I worked at the hospital senior doctors would often make assessments like that on my patients, but were rarely right. One guy (who was a pompous ass) swore that my patient, who was in a critical state, would pass away in 24 hours. Well, guess what, she made a full recovery. My aunt, who had metastatic womb cancer, was given 6 months. She lived more than five years.

So yeah, maybe statistically you have three months left, but it is just a statistic and you are an individual.

Thinking of you, OPB.

Hugs Brian. Great post, r489.

Thinking of you, Brian.

To the Infinite spirit, to the creator of all that is.

Please watch over our brother, Brian.

May he be blessed, protected, prospered, and loved throughout all dimensions of time, space, and reality.

May you enter Brian's heart, where you already abide.

To Saint. Germain- the keeper of the violet flame: Please make manifest in Brian now the sacred violet flame of transmutation. Please bring the violet flame into his every cell, molecule, and atom of his body filling him totally and completely.

So be it. And it is so.

Hi Brian - I don't know if you're reading DL but if you are I want you to know that you are in my thoughts every day. I think of you and miss your posts.

Every day is right.

We are rooting for you Brian.

We will meet up some day my friend.

OPB here. I am, indeed, reading the posts, and can't thank you enough for them. I have been in chemo, and, thankfully, still don't feel side effects, although they still wont know if it is working until I have another scan in a month or so. I have to spend all day at the hospital when I have the chemo, which I hate, but I endure. I'm heading to the Cape next week to visit my mom and sister; my sister has a summer house there. I fear that they will look at me and cry the entire time I'm there, so I'm bringing lots of Xanax. For THEM, mind you, not me! I hope everyone has a wonderful long weekend.

Brian, I will not be that far away, in Rye Beach, NH

thinking about YOU-

Have a wonderful time, my friend.

September in New England is wonderful.

OP - I have not been following the second thread closely but I am glad you are still here. Just sending you a burst of good energy as you heal.

Enjoy your weekend too, Brian. Take care. :)

R494

Sending you lots of love, Brian.

OP, thank you so much for sharing with us. I lost a dear friend to brain, lung, bone, and blood cancer last year, first to be identified was inoperable brain cancer. Having seen my parents through difficult terminal illnesses I decided just to listen to whatever she had to say as she went through the medical procedures and faced an eventual end. We talked a lot about assisted suicide and she started the paperwork to get the pill. She opted for the choice of taking it when she chose (we're in CA) as opposed to having it administered by a health pro. I was completely supportive of whatever she wanted and I wanted her to feel safe talking about all her thoughts and fears to me. We talked and joked about the unexpected circumstances and the blunt reality of death. She was obsessed with it, completely understandable. She had an amazing daughter who researched every resource and found a service that delivered free meals every day to cancer patients, and other helpful services. My friend lived six months after diagnosis and was able to get her affairs in order.

One thing that struck me as the illness progressed and she faced death was that as death approaches, as it does for all of us, the idea of the moments of transition from life to death can be more frightening than what happens after death. None of us can know how it will go, whether we'll be cognizant or not, feel pain or not, be afraid or not, etc. Those thoughts plagued her and knowing she could take a pill and end it on her own terms was a great comfort.

The end came sooner than we expected for my friend, she had not yet received her pill. Toward the end she was peaceful and accepting, but also angry about what was being lost. It's a most profound and challenging experience for both the ill person and those who love them. It stops the clock for all closely involved.

I'm sorry OP, your're experiencing this now, when you should have years ahead. I hope you receive a lot more time than you expect and that you have peace and love always. From what you write I expect that's what you'll experience.

R501 again, I'm sorry the link above is mostly for SF Bay Area residents but it also includes some national resources as well as nutrition resources.

Hi Brian, thank you so much for your update. Your attitude and perseverance is admirable. Here's to a beautiful day in fall in the Cape.

The last day of summer is Sept. 20th. Fall commences on the 21

Enjoy your stay, Brian!

Hey OPB -- just checking in to see how you're doing. Hope all is as well as it can be!

Hello Brian - Sending hugs and warm regards.

Hi Brian / OP, still thinking about you. I have this thread bookmarked. If you're up to it, please check in and let us know how you are doing! If you're not up to it, that's totally understandable.

Brian- You deserve relaxation and fun with your loved ones. You are one strong man. God bless you .

Hello Brian, you made your life count, you made an impact on others in positive ways, you are loved and will be missed dearly by many. Please take care and know that we are thinking of you and sending you positive vibes and thoughts.

Thinking of you Brian.

Thanks for bumping this. Hope you had a good time with your family Brian.

Hey OP Brian, you have been on my mind all day today. If you can, let us know how you are doing. Cheers from Australia.

OPB here. Thanks for the most recent posts. I found out this morning that the chemo is not working, so they took me off it. I have about 3 months left to live. They enrolled me in a clinical trial, but that won't start for about a month -- the chemo has to be out of my system -- and it won't start to be effective for a month, which would put me 2/3 of the time I have left. Ergo, it is probably too late for it to do anything. I remain healthy, and I hope I am until the end comes. I am trying desperately to get euthanasia medication, but it is impossible to get anything shipped into this country because of the increased border control because of the opioid crisis. I had two bottles seized by customs already, and, at this point, I assume that my name will be flagged if I were to get another foreign package. The other option is going to Mexico to get it myself, but I would prefer to not do that, especially since it is not guaranteed I could find a pharmacy willing to sell it to me without a prescription. I would like to control my exit, and my inability to do is making me a little anxious.

Brian! I am so sad you are leaving the world. You will be in the kingdom of Christ. You are entering paradise.

Sad to hear that the chemo is not working. Glad your doctors have other options. Hope you had a nice family visit.

This breaks my heart, Brian.

I wish you nothing but peace.

OP Brian, R513 here. That's devastating news mate. Last year, when you first posted about your diagnosis, you felt justifiably overwhelmed and I myself have been stunned by the pain and suffering you have undertaken to get this far. You are a very brave man. Have you completely ruled out the new clinical trial?

Brian I am so sad and angry to hear this news. This is NOT RIGHT, dammit. I don’t even know what else to say. I hate that this is happening to you.

All my best wishes, Brian, that you find comfort and peace in your remaining time on earth. I hope you feel the love and respect we at DL are sending to you.

I'm so sorry, Brian.

Brian/OP, thank you for the update. I'm sure this is something you've thought through, so I'll just respect whatever research & decisions you have made. I don't know what it's like to walk in your shoes right now. If possible, please keep checking in here.

I depart as air, I shake my white locks at the runaway sun, I effuse my flesh in eddies, and drift it in lacy jags.

I bequeath myself to the dirt to grow from the grass I love, If you want me again look for me under your boot-soles.

You will hardly know who I am or what I mean, But I shall be good health to you nevertheless, And filter and fibre your blood.

Failing to fetch me at first keep encouraged, Missing me one place search another, I stop somewhere waiting for you.

OP Brian, You are amazing and so strong! We love you so much!

Thank you for sharing your journey with us. Please come back and haunt some of our dreams to let us know what the other side is like.

I really don't know what to say but just want to say thank you for updating us and I hope you find what you're looking for and the trial works.

So sorry, Brian.

I think I might have mentioned this before, but if you enroll yourself in hospice (which you are eligible to do because of your diagnosis/prognosis), they will assist your exit (if and when it's your time). (You might want to wait to see if you respond at all to the experimental treatment though). They do so by giving you as much morphine as you want for your pain. Morphine depresses breathing and you slip into a coma rather quickly. Many people I have known who have started home hospice and are told they have 3 weeks or months to live, end up dying within a day or two. Hospice will not call it euthanasia, but basically it is. And I have no problem with it. Some people wait until too late in the process however. They wait until they are in such excruciating pain they can't endure another minute. Better to begin the process when you FIRST experience horrible pain and you've already made your peace with dying. Then it will be relatively quick and you'll just slip away. I think everyone on DL is amazed at your courage and your honesty. And we're sad that we can't alter the facts of your illness, because we would if we could. You remind me in many ways of an amazing musician who was diagnosed last spring. I'm attaching some beautiful paragraphs he wrote in mid-summer. I've yet to read that he's passed, so maybe he's beaten the odds. (As someone wrote once, the best revenge is to outlive your doctors. )

Good to hear from you, OPB, and glad to hear you're still with us... though I'm saddened to hear your latest update. Like many others here, I wish you nothing but peace and love as you continue your journey.

Do you friends/family know about these threads?

So sorry to hear you don't have good news for us Brian. I'm keeping my fingers crossed that you are able to find some drugs soon to ensure your peace of mind. I hope you're comfortable and not in much pain.

OPB here. Wow. I am stunned by the sheer goodwill and kind thoughts on here. I'm touched; thank you. To answer some questions raised upstream, I will find out more about the trial this week, when I meet with the doctor who is in charge of it. Because chemo is still in my system, I won't be able to start the trial for another three weeks, though, and, because it takes a month for it to start to be effective, I fear it might be too late to make a difference, but it will be nice if it did.

Vanderbilt is an amazingly well-coordinated and wonderful hospital, and I have met with hospice twice already. I can't start it, though, until I am not getting any kind of treatment whatsoever; they are mutually-exclusive. I am told that doctors and hospice unofficially "help" those who wish to move on, but I would prefer to have the security of knowing that I can do it for myself, when I choose to. That is to say I might not euthanize myself if/when I am able to secure the drugs, but it is comforting to know that it is one of my options.

I am completely at peace and unafraid about what will happen. I have had an extraordinary life, and have been fortunate in so many was. Thank you all for such amazing and comforting words and thoughts.

Just think of the hospice nurses and doctors as an extention of yourself and you will know that you do have the power to say "when." It will be ok. You will be fine. Eventually, I hope, you will find a way to send all of us here at DL your love.

OPB, I’m so sorry to hear of this devastating turn. However, from the outset of your diagnosis, I have found your outlook uplifting to say the least. Your generosity of spirit continues to shine. Thank you, for sharing your journey with us; thank you, for inviting us into your extraordinary life.

Wishing you much love, light, and peace.

"Eventually, I hope, you will find a way to send all of us here at DL your love."

I will. And I will let you know what was on my iPod!

Brian, 2 things: - hospice people are very good at what they do. Trust them. - although we’ve never met, we love you.

Wonky formatting messed my comment up. Hope the gist of it came through.

Brian, do your doctors know if your tongue cancer was caused by HPV?

If so, it's part of a silent epidemic, and worth speaking out about.

Brian, I am gutted to learn of this latest development. I wish you freedom from pain, comfort, good company and many cat cuddles.

R536. It was not HPV-releated cancer. They don't know what caused it, and it was odd that I got it, considering I don't smoke.

I'm so sorry, Brian. But it's amazing how strong you are. I still hope you'll have more time then expected, and that you'll enjoy it very much.

Follow your heart and soul Brian ! Your soul is eternal.

Did you do anything that you might share to become so mentally strong at the near end of your life? It would be wonderful if you might share your preparation. Many of us would be basket cases and not really be in control of our emotions.

Happy voyage.

Brian, dammit. I am so fucking sorry.

I did hospice at home for my mom. They give you meds to keep at home. We had a bottle of morphine, oxycontin, and several other meds. It's called a comfort kit and you have control of it.

I have genuinely grown to care for you. We all have.

Yes, tell us what's on your iPod! We need to hear your personally-curated list. It's a must OPB.

Hi OPB! I’ve been following your situation for quite a while. I hope you are able to settle things as you wish, and you don’t suffer any pain.

I’m sorry it’s turned out this way, as you seem to be a lovely person I would like to know for a long time. I hope that whatever happens, happens with grace.

So saddened, I can't hold food down and I'm shaking. I'm not handling this well. I just knew you would recover.

I am so sorry.

Oh man, Brian. I am hugging you so hard right now.

I don’t know what to say. Want to say sorry but doesn’t seem appropriate. You said you’re at peace and glad to hear it . Wish you all the best here and thereafter

Well, Brian, at least you know you did your best. You can be satisfied knowing that you did everything you could do, when you had your initial surgery.

I remember you were thinking at the time of not having it. You came through it like a champ, you were brave and carried on as best you could. I’m proud of you. You were scared but you did it. Nothing is harder.

You have had some extra time you wouldn’t have had and you did some things with it. I don’t know how you are feeling now, but you’ve earned taking it easy. Buy yourself some flowers. Do something you enjoy.

I can’t help but feel, due to my own personal circumstances, that the universe favors those that live their fullest to the end. Which you have, although you may not realize it. You've made friends here, you've inspired us all. You’ve been good company.

A big part of life is interacting with other people. Which you have done admirably with us, even though you can’t see us. You’ve made us more thoughtful and better by your presence.

You’ve paid your dues, now is time to enjoy what you can. For as long as you can. There is always beauty out there. Find it in your world.

Thank you for the pleasure of your company.

OPB here. Gosh, guys, I can't tell you how moved and touched I am by the sentiments and kind words. Here's hoping the doctors are wrong, and I have a few more months to live. My birthday is in February, so maybe I will come into and leave this world in the same month?!?

As far as what I've done to have to have this peace of mind, as someone upstream asked: I've never been afraid of death, even as a kid. I've been a fairly committed atheist all my life, so, perhaps, I just never worried about heaven and hell, or the afterlife. I think being remembered as a kind and good person is the best we can hope for. I've also never believed in holding on to life at all cost. I've thought of things like the exploration of living in space, etc as arrogant and vain. Who are any of us to think we deserve to live longer than the time we have?

As for what's on my iPod...I probably should be embarrassed to say that Prefab Sprout -- a British band from the 80s which is still active and relevant today -- has long-been my favorite band.

Prefab Sprout is awesome.

OPB, I'm with you on the god thing, but if there is a god there is no doubt you'd be a welcome addition to heaven. It's far better to be a good and kind person because you know it's right than because a religion dictates your behavior.

Lately I'm thinking, with all the destruction we're doing to the earth, we're all overstaying our welcomes.

OPB, I am sorry to hear your news but glad you are at peace with it. Here's hoping your docs are wrong about the time you have left. Through my own experience with cancer (Stage 4 colon), I have encountered more Stage 4 patients than I can count who have long outlived their doctors' predictions. Hope you see some good results from your clinical trial but most of all, I hope you're feeling okay and able to enjoy your day-to-day life.

OPB, you might be like Valerie Harper or Jimmy Carter who lived about seven more years after being told they were done for.

I've always been afraid of death, even now at my advanced age. I don't fear my own death, just idea of never seeing people I really love and care for ever again. That just overwhelms me. I recall my first realization that my parents would one day die, I must have been about 7. I recall crying so hard I had to bury my face in pillow so my parents couldn't hear me. Dad died at 93 seven years ago but Mom is still with us. She'll be 99 in March. I'm sure she'll make her goal to 100.

I don't know why I am rambling on like this. Every one dies, but to me it's still a tragedy for the survivors. Those who die prematurely imo are even more tragic than those die closer to century mark. I too am an atheist.

R556, I have always felt very similarly, even as a kid. I remember scream-crying "am I going to die!!!!" when I lost a tooth.

I've never listened to Prefab Sprout, but I will for you, OPB.

I have bookmarked this thread because I will be coming back to it again and again for the next few years, maybe for the rest of my life. We've come to inhabit your world a tiny bit, Brian and we've so forever grateful for your generosity of spirit in sharing your deepest thoughts, feelings with us and asking us for advice or comments. I know I feel honoured to have 'corresponded' with you a few times and I am going to miss this and you.

But...the story is not over quite yet. To a man of indomitable spirit - I am staying and rooting for you Brian.

^^ we're....

Same!

My dear POB. I hope you know how many lives you've touched here with your courage and strength. You and I have a lot in common. I've been an atheist since I was ten and I found out I was HIV positive in the mid-80s so I've been expecting to die for a while now. Meanwhile, I've witnessed the deaths of many dear friends so I know what to expect. I will go to hospice, if I can. I want to die in a hospital or some other professional surrounding. Dying at home, to me, has always seemed a messy and unnecessary affair. I have a stash of drugs, - opiates, benzos, etc. should I need them. It's always good to be prepared. In any case, you are in my thoughts and I hope your treatment is a success and thanks again for allowing us into your life. You, my friend, if I may call you my friend, are a legend.

Hello OPB. My neighbor downstairs is in a situation somewhat like yours. She talks about eating healthy to stretch out her time so that she can make amends with an estranged child, and I am clumsily trying to assist her with my hippie brown rice and vegetables. I don't really have much else to offer her except an amusing pet bird and some music. I think of you and admire your strength, and wish you peace.

R562 Can you post a pic of your bird?

i am poster 556, and I hope I haven't made any of you think I am Brian. I am simply another guy who chose to take this journey with all of you and Brian.

I second the request for the bird pic R562

That makes three now, r562.

Brian, would it be weird to want to meet/visit you? You were so kind to paint my 3 guys in a hot air balloon- I'd like to say thank you in person.

BITCH , AREN'T YOU DEAD YET ???

Hey Brian - I'm sure there are many like me who are wondering how you are doing today and wanting you to know that you are in our thoughts even when we're not here on DL. You're an incredible person, a very loving person and so kind. This thread has been such an inspiration for me and I treasure everyone's comments. Sending a huge bear hug to you Brian and lots of warm, caring thoughts.

- Canadian friend

R567 I love Brian’s work too. This one is his dog-

OPB here, and I was actually amused by R568's post. It is greyed-out on my thread; I don't know if it is on everyone's. I am waiting to hear if I am getting in to a clinical trial of a new drug that starts next week. Phase 1 of the trial was to determine toxicity, and Phase 2 was just approved last week. If I am accepted, I will actually be the very first trial patient in the Vandy study, which is kind of cool. I will be "Patient One"! If it works, great. If it does not, well, not so great, but I am at peace with whatever happens. In the meantime, I feel great.

R570 -- I had to put Rufus down a few months ago. He was 12, and, also had cancer. I was not expecting to miss him as much as I do. I still expect him to be at the door when I come home, and still expect him to jump on the couch when I sit down to read. He was a gentle, sweet boy.

And, as always, thank you for the kind thoughts.

I feel you on the trauma of losing a pet, Brian. It leaves a big old hole in your heart. ❤️

Brian- I prayed for you . I can not express enough how admirable your strength and courage is. So sorry for your doggie . Try visualizing your cute and bringing another dog home. God bless you 💗🙏🏻😉

CURE

[quote]In the meantime, I feel great.

Glad to hear it!

I've got a pic of the bird looking regal yet sensitive. May I iinquire how to transfer it from this android phone? TIA

[quote]I've got a pic of the bird looking regal yet sensitive. May I iinquire how to transfer it from this android phone? TIA

Do you mean transfer it to your PC? If you don't have the usb cord with you, you can email it to yourself and then open it up on the comp.

R576 Transfer it to photo hosting site like imgur or postimg then type the link in the “Web Site Link’ box beliw.

^^ below

Good Morning, Brian - Heading out tomorrow on a business for a couple of days but wanted to say hi and hope you are feeling okay. I echo r561's sentiments - my thoughts exactly,. Seems like we've all known each other a lifetime so intense and honest the emails from everyone have been. Wishing you a lovely day.

^^^ business trip

Good morning Brian, have a lovely day!

Thinking of you, OP. Hope you are having a relaxing weekend.

Brian- you are loved and prayed for

Brian- you are loved and prayed for

Hi Brian, thinking of you on a bright fall day. One of my guys you painted, Bosch, the black cat has jaundice and a gallstone type of situation going on (he's getting an ultrasound today). But like you, he's still a sweet guy, despite the pain he was/is in.

Brian has brought humanity to DL 💗😊

"Brian has brought humanity to DL"

I did not. Everyone who is responding has. And I thank you all for that.

I start the clinical trial on Thursday. It is a new drug that doesn't even have a name yet. I will be the first person at Vandy who is in the trial, which was just approved just a few weeks ago. I have a lung biopsy on Wednesday, which I am not looking forward to. I will be under sedation, but the thought of having a really long needle going into my lung does not exactly appeal to me! It is a good thing I will be under anesthesia the whole day! Wish me luck, kids.

You got this B!!! 🙏🏻💗

Will be thinking of you when you go for the biopsy, Brian. Hope the trial is a sucess.

Brian, don't worry too much about the needle. I don't know how similar it is, but I had a test involving a needle in my lung, and it wasn't so bad. I was awake for it. It was probably much simpler--they were drawing out fluid from my pleura to test it--so I only had local anesthetic and it only took a short time. I sat backwards in a chair and they put it in through my back. I know your procedure will probably be different, but I wanted to say don't be scared. Although the idea of the big needle going in there can be disturbing, it's very routine and you'll close right up again.

Good luck with the biopsy, Brian.

Good luck on Wednesday, Brian. I once had a heart operation and had to have fluid drained post-surgery from my lungs. Not a huge deal at all. You will be just fine.

r580

Hi Brian! Good luck with the procedure. I’m sure it will go fine.

Sending you lots of positive and healing vibes and surrounding you with love.

It was so good to hear from you OP!

Good luck on Wed and the new trial!

I don't know you but I love you!

Wishing you all the best next week and always, OPB. 🤗 😘

[quote]It is a new drug that doesn't even have a name yet.

Oh, that's just catnip for us creative types!

Come on, DL, let's give this drug a fun name for OPB, so he/we can use it in posts when discussing the treatment!

(Also, we'll need a Part 3 thread started.)

Maybe they could name the drug after Brian, like “Lorenzo’s oil,” since he’s the first one taking it.

Brian’s Booty?

Glad to hear about your drug trial Brian. I'm so sorry to learn about your little Rufus. Please keep us posted, and wishing you well. I'm still lighting candles for you.