Realization

[John9]

Hello my friends,

I had a setback today, they keep increasing the amount trying to reach a goal. Sadly I am not sure if I will reach it. I had diarrhea and I threw up again. If the food doesn’t stay in, then I’m not going to get any nutrients. I will try to address the denials as soon as I can but I will figure something out. 
Kay C, are you doing okay with your health issues. Did you recently become a moderator and are congratulations in order. I agree that insurance companies should be more helpful, but I think we already have discussed those things before. Take care John 

[KayC]

Hi John, it seems so hard what you are going through, and nothing about this is fair, dang how life takes it turns!  Can they feed you intravenously for now?  So hard!  I keep hoping...

Yes moderator, shortly after widower2.  The spammers keep us busy!

I pray for you continuously!

Taking my neighbor Iris to our church Mother's Day breakfast, I don't eat breakfast as I've done intermittent fasting for three years, but I'll break it this one time so she's comfortable...

[John9]

Happy Mother’s Day to all of the Moms out there. 
KayC, the Doctors were trying to feed me with TPN but said long term it isn’t good for me and I couldn’t really be released from the hospital on it. I didn’t do well with it either. Honestly I don’t know what keeps me alive. From the beginning of my disease, I have so far lost 85 pounds. Spammers are a sad part of today’s world. Take care, john

[KayC]

Wow, 85 lbs is a LOT when you don't need to and so quickly!  God must have something for you if you're still hanging in there after all you've been through.  We're all rooting for you!

So far the spammers have slowed down the last 24 hours, maybe they're taking the day off!

[John9]

1 hour ago, Gator M said:

John:

I ran into this with Ann.  It's like they didn't care.  She was getting 500Cal a day or less and that was protein drinks. They never even tried a port. 

I am praying for you: peace, comfort, and healing.

Gator Mike

Gator Mike,

Thanks for the prayers .This feeding tube has been nothing but trouble. I don’t know if I would do it again if given the option. I know it sounds bad but all it has done is cause me pain and suffering on top of the pain and suffering I already have been going through. Take care, John 

 

 

[John9]

Hello all,

The Surgeon came to my room yesterday and performed an incision and drainage on my painful abscess. It was painful before and painful during but today is very minimal pain in the area. The grief pain is still here though. The Doctor who is in charge wants me out into the real world again. I just want to make sure that I don’t end up back in the hospital again for the same issues. Take care John 

[DWS]

49 minutes ago, John9 said:

The Doctor who is in charge wants me out into the real world again. 

Gotta love those doctors who are genuine when they say they don't want to see you in that hospital bed. Hope that means you'll be out in the real world again very soon. We're rooting for you, John!

[KayC]

DWS speaks for us all when said, 

33 minutes ago, DWS said:

We're rooting for you, John!

I'm so glad the abscess is feeling better today!  Keep getting better!

[Gail 8588]

John, 

So glad there is a bit of good news.  Glad the surgeon was able to provide you some relief.

Here is to hoping you are on the road to recovery!

Gail

[Sparky1]

John, good to hear about the abscess. Sure, they want you out of the hospital so they can give your bed to someone else, that's what happened to my wife, but they put her in palliative care. If you're able to eat on your own at home you're better off, just try eating healthy foods to get your strength back. We all pray you get better John.

[foreverhis]

5 hours ago, Gail 8588 said:

John, 

So glad there is a bit of good news.  Glad the surgeon was able to provide you some relief.

Here is to hoping you are on the road to recovery!

Gail

Absolutely!

Thank you for checking in with us, John.  I'm glad there's a bit of good news for you and pray that there will be more soon.

[Shinka]

4 hours ago, Sparky1 said:

John, good to hear about the abscess. Sure, they want you out of the hospital so they can give your bed to someone else, that's what happened to my wife, but they put her in palliative care. If you're able to eat on your own at home you're better off, just try eating healthy foods to get your strength back. We all pray you get better JohnJoh

Possibly, but some doctors do mean what they say and do care. It's not always about money. And getting someone out of the hospital can improve someone's quality of life. 

 

[Sparky1]

9 hours ago, Shinka said:

Possibly, but some doctors do mean what they say and do care. It's not always about money. And getting someone out of the hospital can improve someone's quality of life. 

 

I know there are good doctors, but a lot are so inundated that they don't have time to care. My wife had a supposedly really nice nurse in the hospital, when I told her to change the dressing in her oozing leg wound, she said it doesn't matter, she doesn't have a lot of time left. How can you be a doctor or nurse, and treat people like cattle being led to a slaughter. Every person in a hospital is a human being with family that needs them. I'm sure the doctors and nurses have families too. Have compassion and try your best as you are able to. And yes, getting home is the ultimate goal because you will recuperate better there.

[KayC]

I went to the doctor Tuesday...blood draw and "physical," she didn't examine me, she asked questions (interrogation) for 1 1/2 hours!  I have to go in June 2 for spirometry testing so I can get COPD off my records...I was diagnosed with Asthma before George died in 2005, he prescribed a breathalyzer which I was on for 16 years.  Along the way a doctor said Asthma fell under COPD category so that's how that got in my records.  I went through a tongue/throat issue 2 1/2 years (looked like thrush) so my doctor took me off the breathalyzer, thinking that might be the offender, it wasn't but I learned I didn't need it!  Whether Keto reversed this too or whether I never needed it I'll never know, but it amazed me I'd (and my ins.) had been paying out for this all these years for nothing!  Never did find a home for my stock of them.  So they put this in my records without testing but now can't take it OUT of my records without testing!  

[Gail 8588]

Kay,

I am glad you are getting an overall medical assessment before the fires of summer and after the snows of winter make going to the doctor so difficult.  

I hope your June 2 appointment feels more satisfying.  

I am amazed, and hopeful, that your doctor spoke with you for an hour and half.  I usually only get 3 to 5 minutes with the actual doctor, if any time at all. I hope the doctor really listened to you!

It is so hard to get the doctors to consider discontinuing any medication.  I feel like I am taking too many meds now, but all they do is add more if I have concerns of fatigue or poor concentration or such. 

Good luck that you have some improved quality of life following your June 2 appointment. 

Gail 

[KayC]

It was actually an RN, usually I'm seen by a PA, I don't think they have any doctor here.

Kodie's vet in Pleasant Hill (an hour on a good day with no construction) is moving to West Eugene, very high traffic and congested...nope, not going there! Called an made an appt. with a vet on the most east side of Eugene, just as you enter town, so it's a hop, skip, and a jump from the highway, getting in 6/1 so canceled with old vet.  I hate switching but you have to think about emergencies too, it'd take 1 3/4 hours to get there so no can do.  This place will be easy in/out of Eugene being on the outskirts.  Means I'll have to drive to the valley two days in a row (ugh) but will do this for my baby. Won't find out blood test results until June 8, three weeks wait but what can you do!

[Shinka]

Blood results only take one or two days... Don't they have a telephone service? (I'm not from the US, so don't know how things work there. ) 

[KayC]

I have no idea what their holdup is. The "visit" to get the results ARE a phone visit, just in three weeks instead of a couple of days.

[John9]

Hello all,

I was released Thursday afternoon from the Hospital, They kept me until the were sure that a Nurse was able to come to the house and teach me how to use the feeding pump. Also they had to make sure I has "new" supplies. The first night went well but since then the pi+ump has been nothing but trouble. It is so temperamental when loading and setting the rate of feeding. We called both the Company and the medical supply company and neither seem to care about the issues I am having. I think the pump is defective and should be replaced, but they don't seem to listen. That has become the ongoing theme about everyone, nobody cares about the "patient". The abscess is almost gone and I only have one day of antibiotics left, so hopefully it won't come back. I can't say I feel any better not being in the Hospital because while I was in there the Nurses and Doctors made sure every thing was done on time. I have so many medications that seem to contradict each other as far as the directions go. But somehow I am still here and I will be until GOD says otherwise, I just don't understand why I am still here. Take care, John

[KayC]

Oh John, I am so sorry, I know this is not what any of us "hoped for," I'd keep calling the company and trying to get results, it's kind of like me and Spectrum (1 1/2 months fighting to no avail) only yours is way more serious, mine just costs me.

I keep praying for you, and I'm glad the abcess is nearly gone, I would contact the prescribing doctor, tell him how you're doing with it and see if he feels it warrants an renewal at this time so it doesn't have a lapse but it could be (I have no idea) it'd be in your system a while longer and take care of it.  Need expertise opinion on this!

[John9]

On 5/19/2023 at 12:30 PM, KayC said:

I have no idea what their holdup is. The "visit" to get the results ARE a phone visit, just in three weeks instead of a couple of days.

KayC,

Here in Michigan, I can see the results from both the Hospital and my Doctor in "My chart" and I would receive results daily while I was in the Hospital. The results were available about an hour after blood was drawn, but I know it was because the Hospital has its own labs. Its funny though because they took a lot of blood but it never seemed to have an effect on my treatments. I had low number that were flagged in the results but no treatment was ordered. Usually I do all blood draws through the Hospital outpatient lab so the results are available sooner. Not sure what the options are for you where you live and where your Doctors are. Hopefully you can get results sooner, especially if it is something "important" for future treatments. Take care, John

[John9]

5 minutes ago, KayC said:

I'm glad the abcess is nearly gone, I would contact the prescribing doctor, tell him how you're doing with it and see if he feels it warrants an renewal at this time so it doesn't have a lapse but it could be (I have no idea)

KayC,

I have an appointment to see the Oncologist on Thursday and my Primary Doctor a week from Tomorrow, hopefully they will be able to determine whether I need any more treatment for the abscess. Take care, John

[Sparky1]

Good to hear from you John. All I can say is keep fighting and hanging in there brother. Like you said, it's up to God for when our time is up. I pray you get all these things sorted out and hopefully you can regain your strength. Take care.

[KayC]

We're all thinking of you and saying prayers for you...keep us posted what they tell you Thursday...meanwhile I hope you're getting rest and being as comfortable as you can. You still have your son and his friend there?

[John9]

On 5/23/2023 at 7:30 AM, KayC said:

We're all thinking of you and saying prayers for you...keep us posted what they tell you Thursday...meanwhile I hope you're getting rest and being as comfortable as you can. You still have your son and his friend there?

KayC,

Yes, our Son and his friend are still here but it is a strain on them to get me to my appointments because of their jobs and own appointments. The Oncologist wants me to have an EGD to see if I have a stricture in my throat because I still can't swallow a small pill, I tried last night and it hurt so bad, I thought I was dying. That is next Thursday and then he also ordered another PET scan to see how the cancer responded to the radiation. Then he wants me to consult with the Surgeon to find out IF surgery is an option or not. I really don't feel any better, except that I have a feeding pump and so far seem to be able to tolerate the new formula. According to the scale at the Oncologists office I gained a few pounds back, but I don't see it as I am so skinny in every way. But all I can do is try to do what the Doctors tell me to do. It is easy for them to say something because it isn't them but as long as I'm still here I have no choice but to try. I am just so tired though of all of the grief and pain from the cancer treatment. Take care, John

[Gail 8588]

John, 

I am so sorry all this is happening to you and that you don't have your loving wife to help you through each day. It is not fair or right, it just is. 

I hope you feel some comfort in being home.  Hospitals generally are not conducive to rest or sleep. Every few minutes it seems someone is coming in the room to check a monitor, take a measurement of something, or who knows what.  Perhaps at home you will rest more comfortably.

Medicare may be able to arrange for your transportation to and from appointments.  It is not as convenient for you as having your son take you, as there will undoubtedly involve more waiting on your part. But perhaps you can use the medical transport for some of the appointments to take some of the pressure off your son/his employer.

You're doing everything right John. I hope it brings you some relief soon. 

My prayers for you will continue. 

Gail

 

[KayC]

13 hours ago, John9 said:

I am just so tired though of all of the grief and pain from the cancer treatment.

Oh John, my heart just bleeds from your situation. My Iris is going through it too, is going to have surgery, her daughter will be here with her. Also her friend Denise is dying of cancer, rapid growth, will be on hospice when she gets home. Iris has been taking care of Denise' dog, hard as you have to keep them separate, it's elderly and grumpy, does NOT like other dogs.  Iris had to go into the valley three times this week (140 miles round trip) taking Denise to the hospital in the middle of the night, going to Naturopath and back to Oncologist while  I went down and took care of Jazzy and cleaned up her kitchen, picked up branches in her yard.  Denise' roommate also has cancer but is gone for a while, don't know when she'll be back. These ladies are in their 60s.  

I'm glad your son is there.  It IS a hardship on the person and their family.  Praying they can figure out something so you can swallow, normally they stretch the throat but no idea what they do when the throat involves cancer.  

[John9]

Hello all,

I was unable to have the EGD, because our Son has Covid and someone has to drive me. I am not old enough for Medicare yet. Honestly I don't think I will make it to claim it. That is another of the many things I have going through my head. My health Insurance runs out in March and I don't turn 65 until the following September. SO many worries that I don't need but all I can do is keep trying to deal with this. IF I have Covid I will not be able to have my PET scan next week and also I will not be able to see the surgeon because I need the results from the scan.

Quote

 

 

[KayC]

Oregon has the Oregon Health Plan for low income people, does Michigan have something? Iris isn't low income but they also do it for cancer patients, and the Cancer Center helps with rides.  Do ask about it! We also have RideSource, is it there as well?

I'm sorry about your son, I hope he gets well SOON!

[Jemiga70]

@John9 John I'm sorry to hear all this.  I hope you avoid catching covid and I hope your son gets well soon. As you say so many worries you don't need. I admire your attitude and strength to keep pressing on.  You are certainly one strong man.  Take care,

[John9]

Hello all,

I have said many times, I have no choice but to keep going, as much as I hate all of this. Our Son seems to have  been hit really hard with Covid. It took a lot out of him and he seems to be getting better. I have a deep cough, but I never took a test for Covid, I just kept my distance from everyone. I have to see the Surgeon on Wednesday to discuss the results of the latest PET scan. I just want this to end, I am so tired of everything and I need it to end. Take care, John

[KayC]

You might want to take a test before going in, with a cough you may have it, did you sense any fever?  I'm so sorry you're going through this at all.  Prayers for you and your son.

[Gail 8588]

John, 

Thanks for the post. I wish it was better news, as I am sure you do too. 

I'll add your son to my prayers. 

Praying for you to get some relief from all of this. 

Gail 

[John9]

Hello all,

Sorry I haven't posted much lately. Spoke to the Oncologist Thursday and my cancer has advanced to stage 4 and is into the bone. It is likely terminal. He wants to try chemotherapy with pills, but I am not sure if I can handle the side effects again. The previous side effects were terrible but I will attempt the pills. So once again I will state that I just want this to end and I don't understand how I am still here. I really need this to end soon. The pain is terrible and it is getting worse. Take care, John

[Sparky1]

Hi John, good to see your post but feel sad that you're going through even more complications. I don't know what to say, I just pray that you do get better hopefully. Hang in there brother, we're all rooting for you. 

[Shinka]

John, I'm so sorry. If it is indeed terminal I hope you will have the support of loved ones. I wholeheartedly wish and pray that you don't suffer. Maybe your doctors can adjust the pain medication, have you talked about that? 

[KayC]

John,

I am so sorry to hear this news...if it was me personally and I had no hope of a cure, I wouldn't opt for chemo, it's horrible, not only what it puts you through but what it does to your body. My heart goes out to you, this isn't what any of us wants to hear for our loved ones, and you've been a part of us for quite some time now.  I will continue to pray for you for strength to get through each day and also for your son.  If they set you up on hospice, it may benefit you as they can keep you free of pain.  Iris' best friend Denise is going through this right now.  I know Denise although not as well as Iris does, and it's hard to watch her experience this. Iris has been good at enlisting help for Denise (no family, her brother is in his own bad shape and not able to comprehend any of it, he lives elsewhere) to provide meals, outlets, etc.  Iris is having surgery tomorrow.

Do talk with the doctors about hospice, it can help you greatly.  I know it's the word no one wants to hear, but when a person has had enough they just want truth and help.

[Gail 8588]

John, 

I am so sorry. 

Hospice may be a blessing for you and your son.  It will help him to know they were able to fully address your pain. 

Gail

[Jemiga70]

@John9  John, I'm so sorry to hear this.

Thoughts / prayers that you find relief.

[foreverhis]

John, I am so sorry your news is grim. Hospice may very well be right for you, but only you can decide.

I’m sending you love and pray you find peace no matter what happens next.❤️

[KayC]

John, I want you to know we are thinking of you, praying for your comfort.  (((hugs)))

[Gail 8588]

John you are in my prayers.  God grant you peace. 

[KayC]

John, thinking of you and wondering how you are. My heart breaks for all you've gone through, praying for you...
You've fought the good fight, you did so much for others, I pray you are comfortable...

[SSC]

Oh John!  Another friend, another one of the many grieving who have suffered so much!  We pray for you and hope whatever your future holds there will be peace for you there.  My heart hopes your wife is with you no matter where you are!❤️

[foreverhis]

John, I will add my prayer that no matter your situation now, you are comfortable and comforted. You have given so much of yourself to others. It is time for you to be the one cared for and supported through this painful journey.

We care about you and send you love and hope.❤️

[KayC]

Amen.

[Sparky1]

Anyone hear any information about John? Been wondering and hoping that he is okay. 

[KayC]

Continually...

[Griefsucks810]

On 7/23/2021 at 7:47 PM, John9 said:

tnd,

I have said that all i really am doing is what i have to do, feed and care for MIL, take care of wife's cats cut the yard which I used to do in 1 day and now takes at least 3 days to do because I don't want to do it and now time constraints that weren't there before. My wife and I clicked like you and your husband did early on as well and nothing was one sided, before she was the only one who was working we both worked and we both shared the "housework" after she became the only one the majority fell to me and she was very proud of how much I "helped" out. We fit together like puzzle pieces and now that she is dead there are so many pieces of my broken heart that don't fit together anymore.

Every day is a somber and uneventful day for me since my husband died 4 years ago. I don’t have a support system of family and friends who I can turn to for support and talk to so I’ve been going at this journey of grief alone. I stay in my bed all day long and don’t have any motivation to do anything around my apartment and I don’t cook any meals  for myself as it easier for me to buy frozen dinners and pop them in the microwave when I’m hungry.  I don’t know how to start living a new life for myself.  My cat is the only source of comfort and happiness I have in life and she’s the only reason and purpose I have to survive each day because she counts on me to provide her with food, water, love, attention, affection and play time every day. She provides me with unconditional love and emotional support  24/7 and never leaves my side day and night. I wouldn’t know how to go on with my life if she were to pass away. I cherish each and every day I have with her hopefully she’ll live for many more years

[Roxeanne]

My female cat is a loving companion too! I love her and she try to love me back even if sometimes her wild side come out...she was and is the best help in my darkest times without my love!

Anyway i hope you can find some interest, some comfortable person...some friends in your life who help you to try to find a life again! We all miss our loved ones, very hard sometimes but the important thing is find a way to appreciate our life again...no it's not the same without our loved ones, but the hard pain of grief is unbearable!

Hope you can live again, little by little, step by step...when you will be ready!

Sending love and understanding