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Frustrated

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

Just want to vent!  It’s always something, isn’t it?  Although my cancer is currently in remission due to Megace, I’ve suffered varying amount but constant pain due to the need for a renal stent because of a blockage of my right ureter probably due to radiation damage. My urologist had finally agreed to do a surgery to fix the blockage and it was scheduled for the 24th.  My oncologist and Gyn/onc were all on board. Clearances were done. Then my A1C came back 8.2. Last 3 month period was 8.1. I was sure it would be better this time. But between the Megace, 20# weight gain, and a year of inactivity due to stent pain this is what it is. 

I begged all my doctors for 3 years to put me on metformin for anti cancer reasons and I was predIabetic. No one would do it. I worked in the diabetes area for years. I know what I’m dealing with. Finally I’ve got a little metformin (1500) but I feel there’s a good chance it’s not going to be enough to hit the blood sugar. So I’m frantically trying to pull all the strings I have to get in to an endocrinologist (mine doesn’t do diabetes) before 3 months. 

Needless to say, because a blood sugar this high can impede healing and radiated tissue already heals poorly my surgery is probably off for now.  I appreciate that my PCP is hyper concientous and really the only one looking out for my total well being  But I’m disappointed that Thursday when my urologist pulls my current stent (which I’ve had since November and had no pain but isn’t working) he’ll have to put a longer one in with probably more pain just before I’ll have a house full of people for Easter.  

I‘m trying to be grateful that I’m cancer free, that I have family to celebrate the risen Christ, and I’m sure I’ll get this under control.  But I was looking forward to taking care of this and moving on to the next treatment issue(of which I have many)  But I praise the Lord that I’m  still alive and sorry for wining.  You all know sometimes you just have to say, “Really?”

Thanks for listening my dear sisters.  I’m sure I’ll get my head straight on this one too  

 

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

As we travel this "after" cancer time, wondering what on earth will the next scan, check, show or not, we have moments where we just need to stand on the mountain and scream as loud as we can. I have followed your blogs as we were diagnosed about the same time and I appreciate your openness and honesty. You have amazed me with your continued strength. So, CQ, vent all you want for your sisters in this journey want to be the wind beneath your wings. May you get the best outcome and enjoy the joys of spring and Easter. 

MAbound
Posts: 826
Joined: Jun 2016

You sure are in a Catch 22. You need surgery to hopefully end the constant pain so you can exercise again to control your blood sugars better, but can't have the surgery because your blood sugars are too high! Yikes!

I know the metformin helps with the cancer, but aren't their other combos with it that they can consider that would control your bs better? My husband has been diabetic for over 20 years and was first started on metformin, but has since had Actos and glyberide added to his regime. They really need to find what controls the bs for you with the Megace so you can have the surgery and then start excercising again to help control the bs. They should be able to keep checking you to adjust things as you go along. It just seems like everyone wants to pussyfoot around with it, doesn't it? 

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

I’m so sorry Cheese:(. Yes, it’s great to be cancer free, but our treatments can continue to cause problems. Here’s hoping they will up your metformin. So frustrating!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Cheese, I don't have the right words at the moment, but wanted to chime in and offer support. I hope you can go forward with the surgery to get some "permanent" relief. 

Take care and come back to vent to all of us whenever it is needed. We are here for you!

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Dang it.  You have every right to be frustrated and I hope you can get it done soon.  Dang it. 

Lulu7582's picture
Lulu7582
Posts: 111
Joined: Jun 2018

Hi CheeseQueen,

I can understand your frustration. If it's not one thing it's another. Diabetes was my speciality so reach out if I can help. Metformin helps the fastings but it doesn't take care of the post prandial blood sugar. So my advice to help the post prandial's try to watch the carbs at each meal. Typically most adult females can only handle 45 - 50 gms of carbs at a meal....now this is not to replace your medical doc / endocrinology advice but my personal opionion after working in this area for 20 plus years...... Count carbs and with each meal make sure to have protein and a heart healthy fat and that also can help flatten out the sugars post meal. All the best and Happy Easter! xo

PS The endo might think about putting you on a GLP-1..... deals with fasting and post prandials and will pull down that A1C!!

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

Thanks for the info LuLu. Fact is I’m a dietitian and worked in the pharma industry for 10 years for an insulin company so I know what I should be doing. BUT I DON’T WANT TO!  I’m so angry about this. I’m concerned about a GLP1 cause I have thyroid nodules and my liver enzymes are not what they should be. I just have to accept that this is my reality. I can’t even get in to see an endo until June. 

Lulu7582's picture
Lulu7582
Posts: 111
Joined: Jun 2018

CQ well I am preaching to the choir!!!! LOL! Gosh that is terrible you can't get in to see the endo until June... anyway all the best and like you said you know what you need to do. xoxo

PS which insulin company. I just spent 5 years working for NovoNordisk! xo

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

10 years in home office. 

Armywife's picture
Armywife
Posts: 263
Joined: Feb 2018

Dear Cheese, I'm so sorry for this big speed bump!  You sure have suffered enough with those stents.  Hoping for a better result tomorrow than you can imagine, and for a joyous Easter for you and your full house!

EZLiving66's picture
EZLiving66
Posts: 1318
Joined: Oct 2015

Wasn't it Roseanne Roseannadanna who would always say, "Well, Jane, it just goes to show you, it's always something — if it ain't one thing, it's another?" I kind of feel that should be the motto of our after-cancer lives.

My GP did not hesitate to put me on Metformin especially when my port site would not heal even after they removed the port. My fasting BG is still too high - around 170 or 180 but my A1c is normal (5.5) so obviously, my body can handle the carbs I eat all day, but my liver can't handle the fasting. 

Good luck, my friend! I hope you can get that A1c down and get the surgery you need.

Love,

Eldri

SF73
Posts: 251
Joined: Oct 2017

I also have a weird fasting blood glucose. Last time I got my HbA1c checked it was 5.1%. But my fasting blood glucose is about 110-114. Fasting longer (skipping breakfast) makes it go even higher. I think I might have the dawn phenomenon. To see if Metformin I used to take after dinner was causing too low BG levels during the night and leading to higher fasting blood glucose levels in the morning I stopped taking Metformin but nothing changed. I should first get a brand new HbA1c measurement and then probably Continue using Metformin. I also was on Megace for over a year. It really feels like I broke my body either with chemo or Megace or by taking Metformin when I didn’t need it or by experimenting with intermittent fasting.

CheeseQueen I am so sorry that you have to deal with this. You would think we could get a break from normal diseases since we suffered the worst. I really hope your doctor would find a good solution for your stent problem.

MAbound
Posts: 826
Joined: Jun 2016

I believe the reason blood sugar increases during fasting is because of a process called gluconeogenesis (sp?). When you fast, the liver breaks down fat for energy and it can raise your blood sugar when you are eating nothing! 

SF73
Posts: 251
Joined: Oct 2017

Would it be safe to fast then even if it increases your fasting blood glucose level? 

MAbound
Posts: 826
Joined: Jun 2016

The point of blood sugar control is to keep blood sugar levels as stable as possible throughout the course of each day. Fasting while taking hypoglycemics increases your risk of hypoglycemia and spikes in blood sugar do damage over time. If you are working on weight loss you have to remember Aesop's fables and ask yourself if you want to be like the tortoise or the hare. If you have a lot to lose, it's really hard to be the tortoise, but it's lifestyle change that you can live with forever that's going to have the most lasting effect. Quick loss diets may work, but usually not for the long term.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Geez, Cheese, I'm so sorry about the latest complication. You've been through a lot and it must be SO frustrating to feel like the rug was pulled out from under you at the last minute. I hope they're able to get things sorted for you so you have some long-term relief from the stent problem and pain.

Donswife48
Posts: 289
Joined: Nov 2015

I wish the doctors would listen to their patients and consider their input.  Yes, if you could be without pain from your stent, then you could and would work on the other things.  Fix the first problem, then work on the others?  Whatever the decisions of the wise ones will be, I wish you and your family a blessed Easter.  You and I go back a few years, so I feel like we're sort of old friends.  Hugs Nancy

janaes
Posts: 736
Joined: May 2016

Cheese, i wish you didnt have any pain. What a pain in the but for you. You have been through enough.

derMaus's picture
derMaus
Posts: 551
Joined: Nov 2016

I'm sure you'll get your head straight, as you say, but damn I wish you could catch a break. This just keeps going on and on and it's not fair. I'm so sorry, Cheese. I wish I had something in my power to ease your stupid kidney situation but, alas, prayers and virtual hugs are all I can offer. All you've been through and you're still standing - you are my hero !!!

barnyardgal
Posts: 197
Joined: Oct 2017

I am so sorry you have to deal with all that. Hope your doctors can find a good solution.

BluebirdOne's picture
BluebirdOne
Posts: 187
Joined: Jul 2018

Vent, vent, and then vent again. We are here for you to listen to your ventings! Sometimes the best way to get the frustration out is to just let it out. No shame there. 

xxoo

Denise 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

Jairoldi's picture
Jairoldi
Posts: 197
Joined: May 2017

What a time you've been having. I'm glad you can be home for Easter. 

BluebirdOne's picture
BluebirdOne
Posts: 187
Joined: Jul 2018

I am so sorry that you have to endure this. These procedures that I have never heard of, but of course, someone needs them. I just had a nice dinner with my family which will be my Easter as we are moving this weekend, so take as much joy and happiness with being with family on Easter. I am thinking of you and knowing that you can do this and get through this.

xxoo

Denise 

Lulu7582's picture
Lulu7582
Posts: 111
Joined: Jun 2018

So sorry to hear that CQ!! Gosh how awful! Pain is so debilitating! I do hope they managed to get it under control for you. All the best Monday. Will say a prayer that things go smoothly and for minimal pain. Glad you can at least be home with the family. Delegate all the work to them ok. xoxo

MAbound
Posts: 826
Joined: Jun 2016

Trust you to see the bright side in all of this! I really want this to finally get better for you...I don't think I can take it anymore, either! 

Armywife's picture
Armywife
Posts: 263
Joined: Feb 2018

Can't tell you how sorry I am to read the original post and this update.  Thankful you got some pain relief, but dang, the rest of it is a nightmare!  Sending best wishes for a joyous Easter and better results onward.  Praying for you.

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

hello Cheese

sorry you are going through this.  I too developed hydroureternephrosis of my left side.  I had ureter stent put in which needed to be replaced e wry three months.  I did this for over a year.  However I started not to feel good and my urologist did a ureter reimplantment.  I had a mass near the bladder from the brachytherapy.  I hope you are able to get the help you need

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

So here is my sorted story!  I went in for my stent exchange and the doctor couldn’t get it out!  It had migrated up above the blockage and looped into a knot. He said he’d never seen anything like it. So after trying about 8 times, everything he knew, he had to leave it in. I woke up to the worst pain I’ve ever had in my life probably due to him manipulating the stent and worsening swelling of the kidney. The had to hospitalize me overnight for pain management. By the next day I was a little better and they couldn’t do surgery because I wasn’t off me Eliquis long enough, it was Good Friday and the sent me home. I had a nice Easter with my family then the pain started again. 

One Percacet hit it but is often the case, the 2nd one didn’t have the same effect. I was scheduled to be in Hackensack (A 1.5 hour drive) at 7:15 am for surgery prep. When I met the interventional radiologist he seemed to have no idea the potential severity of the stent situation and the knot ( don’t they talk to each other or read the notes?). Unfortunately my world renowned surgeon went on vacation but my husband and I remembered very clearly what he said and he used the word knot!

He finally came around to our way of thinking (WTF) and realized the situation was much more serious than he anticipated. Now my challenge was the anesthesiologis. I was concerned about laying on my belly for the surgery considering my terrible reflux which I have even and especially when I have not eaten. The wouldn’t give me a general in which they always protect my airway. We compromised on she giving me anti nausea drugs which seemed to work. I was semi awake which didn’t thrill me and I did feel some pain but not terrible. 

So I went home after 6 hours, stent gone and a nephrostomy in my right kidney. Pain much improved but a bag to empty hanging on my right thigh. I had to fight like hell to get my home health care which I was told had been all arranged. This hospital is great at passing the buck. So I finally got them to arrange it. Nobody told me how to care for this thing despite the fact I have a tube going into my kidney draining into a bag!!!!!   I knew I needed home health to teach me basic life skills. This is ridicules!

I’ve got until June 5 to get my blood sugar in order for corrective surgery on the ureter. Meanwhile a trip to MI to get my mother’s (who’s in assisted living ) finances in hand. Whew!

Enough whining!  Onward and upward. Thanks for listening to me. But darlings, pain makes all the difference doesn’t it?  We can tolerate almost anything if it doesn’t involve pain. 

zsazsa1
Posts: 287
Joined: Oct 2018

Wow.  CQ, you are incredible, enduring all this.  And now you're gonna travel to MI to deal with mom's finances?  Hope it's quick and easy.

MoeKay
Posts: 196
Joined: Feb 2004

CQ, I'm so sorry to learn about your ordeal, but I'm very happy that your pain is much improved.  You couldn't make this stuff up if you tried!  Rest and take things as slow as you possibly can.  And you're not whining at all, just reporting the facts!!

MAbound
Posts: 826
Joined: Jun 2016

It's absolutely stunning to me what you've had to go through when you are one of our most fearless when it comes to standing up for getting what you need for your care. It makes me nuts that any of us have to work so hard for care that we should be able to trust in. One can never really be even a little bit passive or trusting when it comes to the health care system even at our most vulnerable times. I think most of us can and do put ourselves in your shoes and feel like this can't keep going on like this any more than you do. You are so right that pain makes all the difference! It upsets us all when we hear what you've been dealing with in spite of your best efforts. I'm sure there's a lot of us who would like to give some of your doctors a piece of our minds on your behalf. "Wow!" just keeps resonating in my head!

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

Like Eldri, my PCP has often time saved my life. Not only is she an excellent doctor but a beloved friend and lives across the street from me. I can contact her at any time of the day or night and her husband is also a doctor and her partner. I hit the jackpot when God put her in my life. She also has an excellent MA who will go to the moon and back for her patients. My advice is to find a good PCP as your go to person and hold tight. You may not be as lucky as me but he/she can be your lifesaver. 

Lulu7582's picture
Lulu7582
Posts: 111
Joined: Jun 2018

CQ sending you lots of hugs! Glad you have a good PCP who will listen and help. Yes pain is so debilitating and makes it so hard to be upbeat and positive. When pain is tolerable it makes all the difference. Hope your home health nurse is helping out and yes that is ridiculous to send you home and expect you to know what to do. 

All the best with the trip to MI, hope everything goes smoothly for you. Will say some prayers for peace, safe travel and no pain!! xoxoxo

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Cheese, thanks for updating us. So glad you are out of pain and I hope you are able to get the needed surgery in June. Have a safe trip and try to get some rest along the way. You need to be kind to yourself.

Love and Hugs,

Cindi

SF73
Posts: 251
Joined: Oct 2017

Cheese,

I cannot believe how much pain you had to endure with this stent exchange. So glad to hear you advocated for yourself effectively. It is so scary to hear miscommunication between teams. I am sure it happens a lot. Happy that you are pain free now. Wishing you all the luck for your June surgery. 

Wannabeatit
Posts: 97
Joined: Dec 2017

Wow! We all look up to you! You need this done with!

 

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

oh chrese!  So sorry you are going through this.  Please know you are in my thoughts and prayers.  I ended up with an ileostomy last year for several months. And finally had it removed.  I am sorry I can’t write more but I broke my right humorous bone which required surgery and I am right handed so I can’t type much.  

 

Thinking if you b hugs!

 

kathy

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

Oh Cheese I’m soooo sorry! This is all too much!! I agree withEldri! It’s always something!! I’m praying they can solve all of this for you!

EZLiving66's picture
EZLiving66
Posts: 1318
Joined: Oct 2015

Reading your latest post made me so angry and yet so sad about what you're having to endure! D*mn them all!! I wish for one hour they could be in your shoes. But, you're right about finding one doctor who was in your corner that you could trust, makes all the difference in the world. I am so sorry, my friend, that you are going through this! Your stamina is unbelievable, as is your courage.

Love,

Eldri 

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

So I’m slumbering in my relatively new bed (thank God my husband is at the shore) when I feel wet. I’m like “what the hell?”  I jump (well sort out of) out of bed and urine is pouring out of my pee bag. Some how the little valve to empty it had got turned in my sleep. Meanwhile pee is pouring on the floor and the bed and me are soaked. It’s 3:00 in the morning. I clean the floor, rip the sheets and heated mattress pad off my new mattress and thank God it didn’t stain my mattress. But full clothes change and stuff in the washer. I think I’ll spend the rest of the night on the couch. Nobody told me this could happen! Ah, the trials of a pee bag. I’ll keep you posted. I see the endo today. Curiious his advice on how to control diabetes and the desperate hunger of the Megace. Onward and upward ladies. 

Jairoldi's picture
Jairoldi
Posts: 197
Joined: May 2017

What a way to wake up! Sounds like you handled it with your usual aplomb. I keep a waterproof/resistant mattress cover on all of our beds. I get them at the furniture store so they aren't plastic.

derMaus's picture
derMaus
Posts: 551
Joined: Nov 2016

The good times just keep on rolling, don't they? Dear god, you'd think they could give you some warning or instructions or SOMETHING - like maybe slapping duct tape over the valve when you go to bed? Or putting the whole thing in a larger ziploc and zipping it right up to the edge of the tube? I'm continually amazed at how little patient education takes place these days, it seems like we're just turned out into the world with our treatments/appliances/prescriptions/surgeries/whatever and left to bumble our way along. I know I'm an old fart, but really, truly...I DO remember when things were better organized !  Hugs and dry nights to you, dear Cheese !!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

QC - oh boy.  I'm with derMaus, wishing you a DRY NIGHT.  

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

So now the valve on my bag keeps getting plugged with little clots because of course my urine is still the color of Hawaiian Punch because of all the trauma. So this is another challenge. I’ve tried to get an extra bag but apparently this is a newer one and none of the medical supply stores here have it. Of course, I was told I can drive up to Hackensack to pick up an extra bag. Why didn’t they give me one?  Of course they won’t mail one to me. And Medicare won’t cover the cost (about $30) of this particular bag even if I could find one. Of course I have the option of buying a box of 5 from the manufacturer. 

So I thought this would happen, my endo put me on insulin. Just another thing, huh. I’m not terribly uncomfortable since I worked for an insulin company for 10 years but it’s not what I wanted at this point. And it goes on....

BluebirdOne's picture
BluebirdOne
Posts: 187
Joined: Jul 2018

Really, that is just ridiculous. Totally BS ridiculous. Hope you get it sorted out and have a dry night. My incontinence (which is better (at least I am not peeing on myself as much involuntarily)) has been a challenge. My kingdom for not peeing on myself. Cheese, hope things get better! 

xoxo

Denise 

Armywife's picture
Armywife
Posts: 263
Joined: Feb 2018

Girl, you deserve a medal for perseverance.  I'm really sorry you're having to endure all this.  Praying everything starts looking up soon.

SF73
Posts: 251
Joined: Oct 2017

I am concerned about how big Amazon has become but considering the challenges you are having at your local medical supply stores, maybe it is not a bad thing that they have ambitions in medical supplies distribution. I am so sorry you are suffering because of the thoughtlessness of the medical team. 

Cheese, you are such a fighter. I am so inspired by your fighting spirit. I know you will take care of yourself and be ready for the surgery in June. Glad that you have a plan in place to bring down your HbA1c level. Isn't it remarkable that there is a tool like insulin that will help you get there? Once you get to normal range you may not need it anymore. Wishing you all the best.  

SF73
Posts: 251
Joined: Oct 2017

Cheese

Does your endo know you are on Megace? I was answering another question on the board and thought of this.. "Megace may interact with insulin or oral diabetes medicine and may decrease the effects of these medications, and blood sugar levels may increase. If you have diabetes, monitor blood sugar and talk to your doctor if you notice unusual changes. Megace may interact with indinavir, or insulin or oral diabetes medications."

CheeseQueen57's picture
CheeseQueen57
Posts: 779
Joined: Feb 2016

SF73, yes doc knows I’m on Megace. In fact, it’s megace that probably got me in this stinky diabetes mess. 

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