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Have I pissed of the universe?????

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

I must have done something wrong. I'm being punished..... :(

So you all know I had a rough time after Christmas. And it just went from bad to worse. At the end, I was bedridden all day and I couldn't keep anything down. So at one point, I thought. This is not good. Went to the ER and they committed me to the hospital On Sunday, February 21st. I got a scan and I had an obstructed bowel..... Yah!!!! I had that in March 2019 as well, that required surgery. I feel so god damn lucky.... 

So they tried to fix it with a tube down my stomach and I had some radioactive stuff that I had to drink. Then X-rays throughout the night and morning to see if there was any passage. Only challenge is that everything I drank - and ate - came up again. Tuesday they decided that I had to have surgery. Was told that tree things could happen. I would wake up and the surgeon didn't do anything, or that they were able to make a bypass. Or....., stoma and a permanent one. Guess what outcome I had???? The latter :( So within 2-3 months, I have been dx with lymphedema and now stoma... 

I was at the hospital for 17 days. Been home almost two weeks now. It's going okay but truth be told. It SUCKS!!! It really does. I've lost SOOOO much weight. About 25 lbs and I was no way near being overweight to begin with. I look like a skeleton..... And I find it extremely difficult to eat enough still. And to add to the pile of crap in my life currently, I've developed an intolerance to milk. Not cheese and yougurt and such. But those protein shakes you can get if you can't eat, are based on milk and they make me sick. Since coming home, I continue to loose weight. And it's scaring me. I've tried vegan protein but OMG that taste abs horrible....

Tomorrow I'm having a dietitian coming here. I'm still struggling with walking and I have to use a walker. So thats nice that he can come here. He has reserved 1,5 hour for me, so that indicates that he's serious and professional. I had one earlier on and she sucked. Honestly. Hoping this one is better. 

Have anyone in here tried the same? Anyone with stoma? Anyone that have had success gaining weight somehow? My BMI is on 19,2 :( I can count my ribs. I have bones sticking out on my back, that shows through my clothes. I fimind this to be one of the most difficult things I ever have had to to. Gain weight. Eating a small amount, makes me utterly full and I'm full for hours... I'm waking inside the house and I went to a PF and started at rehab. I have absolutely no strength left in my body. Zero muscles. It's gonna be a fight but I'm willing to do whatever it takes. Would love some advice from you girls too ❤️

In terms of the cancer. Chemo, topotecan, did not work. I ended the chemo before time, as CA125 continues to rise. Before all this started, my onco put me on Tamoxifen, anti hormone, as my cancer is hormone driven. I'm to take two pills daily, the ladies with breast cancer is to take one daily. Something about reaching small blood vessels... But after two days, I had to stop as I vomited all the time. 4 days ago, I had the green light from my onco to continue. So that's my current treatment. I'm not having any side effects from it, so that is actually a relief. Then I can recover faster, not having to deal with side effects 🙂 I'm gonna start up my repurposed drugs again but very careful. One drug at the tim to see how I react. 

So..... That was the latest episode in my crazy theater. I hope you are all doing well. Haven't been reading up on your posts for a while, so have some catching up to do ❤️

cmb's picture
cmb
Posts: 625
Joined: Jan 2018

Oh, Fluff – I'm so sorry to hear about tough things have been for you lately. I didn't have the difficulties during treatment that you've had, so unfortunately, I can't offer any ideas about dealing with your current problems. I hope the dietician can suggest things to help you gain back some of your weight. I'm sure that would make you feel better.

I did have problems with nausea and lack of appetite while I was taking Ifosfamide and Doxorubicin, although not on the scale you've experienced. I'm a bit embarrassed to admit that just about the only thing I could eat and keep down were grilled cheese sandwiches – and not the more healthy variety with good bread and quality cheese but the classic 1960s US-variety with white bread and American cheese. I envy those who talk about improving their diets during treatment, but I did what I could to get through.

However, when I got my A1C tested after treatment ended, I found that I was in the "normal" range for the first time since I had been diagnosed with Type II diabetes years before. And my cholesterol was fine too. I guess mainlining grilled cheese sandwiches for three months didn't do any irreparable damage.

So I would just say, eat what you can tolerate right now. If it's "healthy" that's an added benefit, but some intake is better than no intake.

yetti's picture
yetti
Posts: 42
Joined: May 2019

Dear Fluff., I'm so very sorry, to read of what you have been through!   I always read your posts to see how you are doing!  Bc I'm also a endometerial cancer survivor. Too!   Stage 4B Figo 2.    Dx June 2018.  Had chemo hysterectomy more chemo,  I'll be NED. 2 years. As of April 18, 2021.  My cancer is also hormon4 driven.  ER PR +.  I've been on letrozole ince April 2019. side effects. Weight gain, and hair thinning. So not great, MY Onc claims. That they all have same side effects. ,  not sure i believe it !  I just wanted to tell you that my 🙏🙏🙏 are for you! As you fight as a cancer survivor !  You have been through much more than I have,  my heart ❤️ just goes out to you!  Please continue to keep us posted. As I continue to pray that you can put on some weight,  and feel healthy. !   Sincerely. Yetti😿

Tamlen's picture
Tamlen
Posts: 294
Joined: Jan 2018

God, Flufff, you're grappling with a lot. I'm sorry -- it sucks so bad and you're fighting so hard. It just feels unfair.

I'm sensitive to whey so can't use milk in my protein shakes either. The nutritionist at my cancer center recommended I try Ripple, which is made from pea protein. I expected it would taste awful but actually like it. I use it in shakes, coffee, hot chocolate, even straight up. Many supermarkets seem to carry it, as well as green grocers. There's a version that's in the dairy case and also a shelf-stable version that doesn't need to be refrigerated until it's opened. Amazon carries that shelf-stable version by the case. Maybe Ripple will help you get the protetin you need -- it's got a lot of protein in it. You can read about it here: https://www.ripplefoods.com

Big hug,

Tamlen

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

I have been wondering how. you are doing.  I wonder if medical marijuana would help. your appetite.  Meringues are protein and sugar and so light I wonder if you could tolerate them.   And I thought of you when I read that article mentioned that succeeded in reducing serous endometrial tumors by a third.  In the US we have a right to try law.  I wonder if Denmark has such a law.  I cannot see any reason in the Universe.   I am so sorry to hear about your difficulties.  I am glad you have come here to share your problems.  Hugs to you.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

oh my gosh Fluff!!!  

All I can offer you are my thoughts and prayers.  I do agree that the 1.5 hour visit planned with the dietician is in the right direction, and hopefully they have the insight to help you best!  Please let us know your plan.  Hugs dear one.

Kathy G.'s picture
Kathy G.
Posts: 221
Joined: Dec 2012

Fluff...what an awful time you are having! I feel so bad for you...wish I could say something that would help.

You did ask about the stoma. I had a temporary one for about a year. It was the result of sepsis and not cancer related. Is yours temporary or permanent? I didn't  like having it, but learned to live with it. Learned what to avoid eating...that was for sure, and dairy products were one of them.

 

In reference to the need for protein and gaining weight...I had to take in roughly 100 grams of protein daily in order to recover from my sepsis related surgery wound. I also need to maintain a high daily intake due to my 2015 weight loss surgery.

 

I found protein shakes at Amazon under the brand Cellucor. You can mix them with almond milk, sherbert, ice cream or even water with ice cubes in the blender. You can also use the powder in baking...if you were able to eat...like the chocolate flavor in brownies, the peanutbutter flavor can be mixed in with peanutbutter and put on toast or a muffin, etc.

 

I hope the dietician can recommend ideas you may not have tried to help you eat and ENJOY as it really sucks to not be able to do the very basic things in life...especially when they are crucial to you feeling better.

My thoughts and prayers are with you that things turn in a better direction very soon. Enough is enough, right?

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

I'm really sorry to read of all your trials, and so amazed and proud of how tough you are!  What a fighter!  Please let us know how it goes with the dietitian.

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

My prayers are always with you. I come here all the time to see how you're doing. I was hoping your lymphedema was better.

My uterine cancer was easy and for my breast cancer I was only really sick in December after Adriamycin, but Taxol was easy. I've lost my interest in food now that I'm finished with Taxol (and I'm a foodie), but I go on eating because it is required that I keep my weight.

Can you make a full menu for the whole week with different things you could eat and start early in the day, eating five small meals a day? I don't do it with joy anymore, and I even try to forget that I'm eating, while watching a movie or some online class. I take a long time, but I finish my meals.

I remember when I got really sick in December, my boyfriend would make sure I had a small breakfast at 7am (no more waking up at 10am) so that I had time during the day to have five small meals. By 10am he would make me eat some fruit, by 1pm I had a cup of soup in front of me, or a peanut butter sandwich (less jelly); by 2pm he would make me healthy muffins or give me a piece of chicken with scattered vegetables so that I wasn't overwhelmed. And I would end up eating fruit popsicles at 6pm while watching TV. It was a lot of work, but it worked. And of course, it's easier when someone else is providing the meals. I'm not sure I would have had the strength to make all that myself, even though cooking is my whole life.

Keep us posted about the nutritionist. I have to admit that at some point, I didn't listen to mine anymore because she really wasn't in my shoes. I just ate what I could because it's better to eat something than nothing at all.

Maxster
Posts: 63
Joined: Apr 2020

I am sending positive energy to you and hope you begin to feel somewhat better.  Your journey does suck and I admire how well you have handled it.  This stuff isn't fair and it is hard to find some way to make sense of it.  I don't have any practical advice to send as I have not had eating problems.  But I am so happy for all the women who can share some helpful hints.  I hope your nutritionist can give you some good advice too.  Keep on keeping on.  My best to you.

MAbound
Posts: 1101
Joined: Jun 2016

Oh Fluff! I hate hearing about what a rough time you've been having, but good for you for getting mad about it and channeling that towards not giving in to the beast. It's the beast that's pissed off, not the universere, so keep up the good work!

I know you are taking Tamoxifin, but has anybody discussed you taking Megace? It's a type of hormone therapy indicated for advanced stage hormone sensitive cancer and appetite stimulation. Besides inhibiting the cancer, it has the side effect of stimulating appetite and promoting fat cell production. It can make controlling blood sugars and blood pressure harder if you have issues with those two conditions, but otherwise it is relatively safe to take. It's not effective indefinitely for holding back the cancer, as our dear Cheese Queen experienced, but it could help to make things better for you for awhile. I noticed that I slept so much better during the 18 months I took it ....I miss the uninterupted, dreamless sleep I experienced for the 18 months while I was on it. It won't cure you, but it may give you some relief for a while.

((Hugs)) to you.

Primavera!!  Give that boyfriend of yours a hug from me! He's a real hero!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

Fluff, What a time you are having. So sorry to hear this. I don't have any advice to offer up but wanted to send my support along with all of those that responded above. 

I hope you find some relief and are able to eat things that taste good and help you build your strength.

Please keep coming back and letting us know how you are doing.

Love and Hugs,

Cindi

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

I'm so sorry you are struggling with so many issues.  I pray that relief will be your's soon.

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