OK, DL Doctors & Nurses Part III: Ow. Just....Ow.

Oh no! The bed was supposed to be your saving grace. :( What is Raleigh's opinion of it?

I'm sorry, friend.

Damn. I’m sorry to hear that. Maybe tonight. At least you gave the friend that arranged the bed for you great oleasure in thinking that he was able to ease your pain a bit. I’ll bet that made him feel like a million bucks!

Links to previous threads?

For you r4:

OP, here's hoping you didn't chuck your "behemoth" sofa! (Loved your description.....)

So very sorry the adjustable bed didn't help. You probably had no opportunity to test it, either. Such a bummer. You just can't get a break these days, can you?

Sending love your and Raleigh's way, and very happy you got Part III of this thread going. Thank you for that!

You need a nice Epsom salt bath

Epsom salt bath??????

I'm so sorry, OP. I was hoping the new bed would finally allow you to sleep lying down instead of sitting up.

I'm going back into it tonight. I don't give up that easily.

I never heard from my oncologist's office today about why they want to administer the old chemo in a new way that will make things much harder for me. I called, I sent messages, but no one could spare 10 min to bother, so I canceled the appointment and that's that. Wednesday I have an in-home appointment scheduled with a hospice agency, and I should be signed up with them this week.

I'm not a doctor, but I know my body better than anyone else, and all I ask for is to be listened to and not dismissed. And I just don't have any more fight in me to battle overworked doctors. It's too late to start over with a FOURTH oncologist, and for what?

I had a good session with my therapist today. That helped. I'm going to be getting into bed soon, but I have been taking far too many sleep aids this past week and I don't want to become reliant on them, even though my time is short. I'll try it without first.

Good night.

Goodnight Friiend - I hope that you won’t have to count sheep. I’m so glad that your therapy appt went well. . Crazy, crazy that no one called you back from the doctor’s office. How is your mouth these days? Wow too much pain . I hope that this new hospice care situation has better reviews than the last one. ….kisses for Raleigh.

Another horrible night. If I got 3 hours sleep it was a lot. I don't know what I'm going to do, I am in so much pain. And I cannot take morphine again until I've cleared the pipes, so to speak.

Oh wow OP - Have you been able to “clear the pipes” and take the morphine? Do you have an appt today or a friend who can stop over? You must be losing your mind! I am so sorry that you are in this unending pain!! Do you have any edibles that can take a little bit of the edge off?

[QUOTE] And I cannot take morphine again until I've cleared the pipes, so to speak.

I think you should be taking daily laxatives and making use of suppositories and enemas. Ask your doctors!

In hospice they'll prescribe you a nice strong sleeping pill like Ambien.

OP, sorry you’re going through this. Do you have any Colace to help you shit? It’s very gentle. A trick I learned in the hospital is to eat something cold (ice cream, popsicles, jello) and then immediately drink something hot like tea or soup. It really helps get things moving.

I hope you can get some rest. I suppose you've tried pillows under the knees, at your lower back etc. Sympathies and love, op.

Another really bad day. I am starting to feel like all I will be doing on here is complaining and being miserable. I am so sorry.

Have youbtried being hung on a stretching frame?

It's okay r18, if you weren't you wouldn't be human!

OP, no apologies needed. Zero. You are going through a hellish time.

Would your doctors--if they ever deign to respond to you--prescribe a sleep aid like Ambien, as R15 suggested? I seem to recall you already tried or considered that?

Love from Flyover Land. ❤️

OP, Flyover Land here again.

I am not a medical professional, and I don't want to encourage or trigger even more stress for you, but if your care team is not responding to your requests for help, it seems to me they are failing you. You are their patient, and they owe you their best efforts to manage your pain.

Do you have a friend or advocate who could step in and make it clear to your docs that they need to do better? Now?

I'm not necessarily thinking Shirley McLaine in Terms of Endearment, where she throws a fit at the nursing station, but maybe something close to it. Because you need better responsiveness. No one should have to go through this. Seriously.

R22 “Give My Daughter the SHOT!!!!” - I agree with you - that was a great scene! op - I wish we knew how to help you!!

Another horrible night of little sleep. I started on the recliner with a rolled up towel for a lumbar support and slept maybe an hour. Then I moved to my bed, tried on my back with a gigantic folded body pillow under my knees but my back felt like it was on wet sand. Then I moved to my left side, hugging the body pillow. That got me maybe 2-3 hours. Woke up, tried flipping sides and that was a disaster so I got up. I have been trying to build my core muscles by sitting for 10 min at a time with my spine aligned, but it's really hard as I have no muscles left. I was going to take a shower at 5:30am but I wound up throwing myself on the couch on my side and managed another 90 min.

To the person who asked about confronting my doctors, I kind of did that yesterday, but it doesn't really matter. Once I go into hospice, none of them are my doctors anymore. Hospice takes care of everything with a whole new set of doctors. I'm not crazy about that part of it, but I'll manage. I just want to get through the approval for compassionate care quickly. This is too much for me to take any longer.

[QUOTE] Another really bad day. I am starting to feel like all I will be doing on here is complaining and being miserable. I am so sorry.

OP, we are fine with you expressing ALL your thoughts. After two years, we feel very attached. You're such a sweet soul and anything that gives you a tiny bit of relief is okay with us

Seconding this all the way, OP. We're all here to be a collective sympathetic ear.

Love you. ❤️🙏

Sunny & Co., hope all's well with your mother. 🙏❤️

Ruh-Roh. I may have developed some sort of bodily aversion to morphine now. I took some tonight and within 90 min, I had the same really sharp pain on my right side (which turned out to be gas). I gotta figure this out because morphine is the only thing that keeps the pain at bay.

I signed up with hospice today officially. Within a few hours, I began having doubts. I've skipped a few pieces of information from the past few days and will try to fill them in without dragging it on.

I finally talked to my oncologist's nurse yesterday who told me that the reason I was put on the pump is that my Dr. decided he wanted me not back on Irinotecan, but on a drug combo that can only be taken over 48 hours. This drug combo was offered to me the same time I started Irinotecan back in March. I asked if one was more effective than the other and was told they were the same, so I opted for the one that I didn't have to wear for 2 days and then go back to the office to have removed. This is what he was putting me on now. Without telling me, without discussing anything about the drug, including why he NOW thought it was better, what the side effects were, etc. It was just a done deal and I was supposed to accept it. So I told the nurse I wanted no part of it, that I was angry at the way I've been treated there the past few months and that I no longer trusted my oncologist. All of this mattered not since I had decided to go on hospice.

Also, I did further research on the diaphragm surgery and found out recovery time was 8-12 MONTHS. I thought- I won't even be alive that long. So I canceled the consult for that.

I got a little pushback tonight from a friend when discussing this and so I did some research on the drug my oncologist wanted to switch me to and it sounds like it's super powerful, enough to cast some seeds of doubt. But I know it's not as cut and dried as all that. Again, it's something I should have had a conversation with my oncologist about, and that opportunity was denied me. This is all making me a little mental right now. I've read that the median survival rate on this chemo is 49 months. I would assume that I'd have to count time already spent, but that could still give me close to two more years. But again, am I the average patient or am I too far gone in treatment to be able to apply those standards to my situation?

I can't even sit up straight for more than a few minutes, this is how weak I am. I am in pain. I can't eat. I cough like crazy and vomit nearly daily. I yearn for a release from all of that. But if I could buy enough time to see my two projects get completed... and there you have it, I'm back in Dreamland, thinking "What If?" I know what if and it's not good.

I will, of course, bring all this up with my therapist tomorrow, but it's cutting through that nice morphine buzz right now.

Sweet OP! Ok Mission #1 - we (Royal We?) We need to get you out of pain. now. You just cannot make these big decisions in this pain. I can still hear your desire to live. I think the pain is driving you mad. You haven’t been treated well for a very long time but don’t let one crummy on colorist who doesn’t communicate ruin a possible ray of hope. …… As I recall you had a period of time in late summer when you were in this terrible pain cycle and you went into the hospital to break the pain cycle. Is that a possibility now? I am just soooo sorry!

Oncologist not colorist!

Last night's pain was pretty low key, so much so that I was able to sleep on the couch. I had that same weird pain/gas reaction to the morphne that I had on Fri night, so I hope I'm not developing some sort of issue with it. I took it for nearly a month with no problems, but then I also remember they had me on multiple daily gas-x chewables.

Will the morphine make you constipated?

Yes it will. They gave me some oral meds and suppositories for it, but it's hard to know if i'm constipated these days or i'm njust not going because i'm not eating much.

OP, would CBD or THC supplements help with the pain?

Hi Checking in - I think that we are sending our collective thoughts your way tonight - praying that you can get a little relief and you and Raleigh can get some sleep tonight. …….. I am thinking about getting my mom a “Human Dog Bed.” She still keeps kicking her legs (Ala skinny Carol Burnett legs and sharp knees) yelling Help! I’m Falling! Then she flails past the bars of her hospital bed. I have tried putting her on an air mattress surrounded by couch cushions after she goes over the side. The third time she did this in ten days - I couldn’t help but grumble that my life was passing me by …. The human dog bed has sides. ….. And OP - reading that long story should have put you to sleeeeppp zzzzzzzzz

On a tiny level I relate to your communication problems with your doctor, op. It makes the situation harder than it has to be. I just had a messy root canal with a new to me dentist. She was supportive and cheery, but didn't give me some basic info along the way. I hope you're able to sort it out and backtrack if you decide to. Carry on OP

OP, just sending you a message of love - hope you're getting some quality sleep.

Last night was awful, but today wasn't bad. The visiting nurse came to see me and explained my new meds to me a little better, and then she gave me a nice cocktail to relax me this afternoon. No sleep, but I felt much calmer and the pain lessened. My bathroom issues seem to have been relieved, at least temporarily. Raleigh slept in all day and cuddled on or near me when he could.

The debacle with my oncologist got even worse today, but it's such a long story. Maybe I'll bore you all with it this weekend. All I will say right now is after everything I've pieced together over the past week, I think this guy basically robbed me of another 8-12 months.

OP, thank you so very much for the update. Hugs to you and sweet Raleigh. ❤️🙏

Here he is, world!

OP, this made my whole week brighter! He's so happy with you.

Many thanks for sharing!

The meds allowed me to stretch out on the couch for a while today. First he wound up at my head, then he was along my side and I was spooning him, and now he's on the other end of the couch. I just put the heat on so I exppect lots of cozy poses. I will have to send his snowman blanket along with him wherever he goes next.

I adore you OP. You are so giving to us, I wish we could give even more back in a meaningful way.

Gentle (((hugs))).

R43 (and everyone), you have helped me more than you will ever know. That I cannot see you and thank you in person is a huge regret for me, but know how much I appreciate and am grateful for each and every one of you.

Awww, R37, thank you. Pretenders are one of my all time favorite bands. I've loved them since I was a kid. They were also my first official concert when they toured with Learning to Crawl.

^ Oh, I'm so glad you like the Pretenders! I grew up with them, too. Message of Love is my favorite of theirs.

OP, your continued posts--and pics of Raleigh!--are a real gift to all of us. Thank you for letting us continue to be a part of your life through this board.

❤️🙏

Good morning, all. I managed to sleep on my side on the couch last night relatively pain free. It's not a long term solution because I already know certain parts of my body will wind up hurting, but it was a great relief from the recliner and wet sand bed. My massage is in a few hours.

I have got to trot down to my mailbox today. I am sure it's jam packed.

Have a great weekend, all.

I hope that you had a soothing massage - SO good to hear that you are feeling a bit better compared to last weekend. It is cool and cozy in LA - I hope that you and sweet Raleigh have a happy night! Love his little pink toes!

OP, I pray that you continue to have comfort, good rest, plus quality time with Raleigh and friends. My wonderful mentor was in hospice care and the range of pharmaceuticals they have was remarkable.

Thank you so much for letting us be part of your life and help you in whatever tiny way we can.

It's 3:20am. I've been awake for about an hour and in pain. I am not taking my meds as often as I'm supposed to, and tonight it hit me why. And that realization scares me.

I'm not sure I have come to the full understanding of what this particular part all means. (Or maybe I understand it, but I'm not ready to accept it.) Until now, I have been operating under the view that I am taking meds enough until I start to get better, as opposed to keeping myself doped 24/7 because I'm never going to get better. I should be taking my pain meds every 4-6 hours. I'm taking them every 12 hours because I don't want to be excessive and get addicted. I have to remember- it doesn't matter if I get addicted. The goal is to be comfortable until I die.

That realization has been really difficult for me and I'm not sure how to handle it. I'm certain I will figure it out soon, but right now, it's been tough.

Raleigh has the middle of the night zooms and is zipping from one end of the living room to the other. In between he stops to bite me.

Hey Op - Sunny & I are on late night patrol tonight. I totally understand your breakthrough - but TAKE your PAIN MEDS! Maybe in some small way - and you don’t even realize it - the pain makes you feel more alive. Or controlling your pain meds makes you feel more in control. Whatever the reason - I am so sorry that you are in pain right now. Raleigh is a precious little guy!!!

OP, you have been so conscientious and self-disciplined about not abusing pain meds; your providers are saying it's all right to take more, and you deserve not to be in pain.

Sunny & Co.'s observation about maybe wanting to feel more in control seems very astute. Highly intelligent and responsible people like you often have an acute sense of agency about their lives. That's normally a great thing, but now you're in pain and deserve relief.

Love you, OP, and thinking of you each day from Flyover Land. ❤️🙏

~~Checking in on OP. We are having cool rainy weather that reminds me of the day I made my first really independent move away from my home town -- not all that far but a million miles from a traditional lifestyle. I remember the green gabardine coat I was wearing, and my good shoes as they hit the wet leafy pavement. It was a turning point, and every late fall I look for the excitement of That Day and dreams of my youth. Keep cozy OP. x

Love to OP and Raleigh from Flyover Land. ❤️🙏❤️🙏❤️🙏

R53 - what vivid lovely memories. I was deeply in love with someone that I never got over - I even rode a motorcycle the only time in my life. That was a very special November many years ago - sights and sounds and fireplaces and damp leaves bring it all back. ….. Hey Op! hey everybody. Sunny and I are waving hello! Sending everybody good thoughts on this late November evening.

Dearest OP, I'm thinking of you this Thanksgiving. So very thankful to have gotten to know you through DL. What a remarkable and wonderful person you are!

❤️❤️❤️

Hi OP and Raleigh and my “Thread Friends” - Wishing everybody a sweet and quiet Thanksgiving!!!

❤️ Happy Thanksgiving, Sunny & Co. Hope you and yours have a peaceful day.

Hoping we hear from OP soon. OP, you are in my heart and mind today, as you are each day and will continue to be. ❤️

R58 Happy Thanksgiving to you, too Flyover Land! I hope that you are having a festive day surrounded by people OR PETS who love you!!

Ok folks - breaking the 4th wall here - on this Thanksgiving Day my mother is suddenly obsessed - dumbfounded - at war with her diapers, plastic pants and be pj bottoms. plus yesterday her insurance put a “pause” on any in home care. She has been so docile for a while - I don’t know why I am so disappointed right now. …… I have pumpkin pie and sweet potato pie. I think I am liking the sweet potato pie more this year.

Oh, S&C, I'm so sorry to hear this. Don't get me started on insurance companies. Ugh! 🥵

Sending hugs and peace to you and yours on this holiday!

Hope everyone has a good Thanksgiving, sorry to hear about your mother Sunny. Sorry to bring the vibe down, but I haven't heard from OP since the 18th, and I've texted him today with no response. A bit worried.

MrE, thanks so much for posting. I'm very worried. Hoping OP is simply catching up on sleep. If you're able to update us, that would be much appreciated.

Happy Thanksgiving. 🙏

Mr E - I was worrying about that, also … it has been a like TOO quiet - Please keep us posted!

He finally got back to me and simply said, "I 've been having a tough time". I've offered assistance when I get back on Sunday, but radio silence again.

Thank you Mr E …. Hi OP! Get some rest.

MrE, thank you so much for the update. Greatly appreciated. 🙏

OP, love you. ❤️

I asked a mutual friend to contact his mutual friend to OP (they went to uni together and he's been re-involved with OP recently) to see if they heard from OP, and I got this text today:

OP entered Hospice a few days ago and the nurses think he has 2-3 weeks left. I’ve been spending a lot of time with him, have hired him a full time nurse, but it’s very sad- he has no family/ partner/ and no one other than a mutual friend from uni to care for him.

I’m going to try and get there at least once a day for next few weeks. (from uni friend)

He’s not ready to go. He thought he had more time.

I'm going to try to see him on Sunday, could I convey anything from you guys to him?

Sorry that was me a r69

Oh, dear God. MrE, this is what I have been dreading, but your update is greatly appreciated. You are a lovely and wonderful friend, and I admire you.

If you could convey the following message to OP for me, I would be so grateful:

OP, your courage and determination throughout your illness have made such a tremendously positive impact on me these last two years since I began following your thread. Your intelligence, kindness, sense of humor and creative work inspire me. You have lived and are continuing to live a truly admirable life--I hope you take pride in your accomplishments and the wonderful, remarkable person you are. I have never met you, OP, but have come to love and admire you so very, very much.

MrE, thank you for what you are doing to keep us informed here.

Tell him he is much loved and we look for him every day.

It's not as much sad to not have a partner or family left as it's the luck of tbe draw. Bless the helpers MrE. x

R72, similar thought here. What is really destroying me about OP's ordeal--in addition to what a lovely person he is--is that he is young yet and has more creative work to do. Artists want to get their work done. They are the ultimate, disciplined, vital workers. Don't take their work away. And don't take our artists away from us!

My heart is just breaking.

Mr E - Thank you so much for being there for OP. Damn - I had hoped that he would have more time. He has been such a bright kind friend to us the last few years. I think we are probably all of an age where you really don’t make new friends everyday. He WILL BE MISSED and had left such a mark . …. Mr E - is he going through Hospice at home like he had hoped a few weeks ago? Is his friend from New York going to take Raleigh? this is so sad I feel oddly out of sorts as to what to say. He is loved.

He is doing hospice at home, but I’m not sure about Raleigh’s fate, I’ll find out on Sunday.

Thank you all you lovely people that care, I’m giving y’all a big hug and your kittens too.

Oh Boy. OP and Raleigh have been on my mind all day. I am selfish enough to say that I hate change and I hate pain. This is both. My heart is heavy for OP. He has been unfailingly good natured and polite this last 2 years. I just wanted to touch base back here again tonight. Thinking about all of you guys, too. …..Sunny sends his love and a bored toss of his tail.

Sunny & Co., same here. Thinking about OP throughout each day, missing him on this thread he has so graciously hosted going on the third year. It is good to see your, MrE's, and everyone's posts. ❤️

I feel very helpless.

I’ve been thinking about OP a lot. Thank you for keeping us updated, Mr E. Sending you love, OP. if there is something we can do for him or Raleigh, please let us know.

Me E- We’re you able to visit with OP yesterday?

Yes, he was actually better than I thought the situation would be, getting up, showing up some of the art he collected, and we (mutual friend and another uni friend of his) watched his #10 favorite film, Black Christmas. Original uni mutual friend stopped by after I and MF left. I told him that all of us on DL are sending him love, so I'm hoping he'll stop by and comment here.

His Royal Highness Raleigh was getting so much love and attention.

Thank you so much for the update! I can only hope that OP remains comfortable and has as much quality of life as possible for his remaining time. Much love and support for OP and Raleigh!

Exactly what r81 said!! ^^

Oh, MrE, thank you so very much for the update. Greatly appreciated!

Hi to all here!

OP, love you. ❤️🙏

I hope OP is not in pain. We'll miss you and Raleigh so much.

Op and Raleigh and friends - I’m sitting here with my baby Sunny. Hoping you are comfortable tonight and sending you such good wishes ….

Thinking of you OP. x

You too MrE.