Cancer Support and Caregivers Who Are Trail Blazers!

[Oiler41]

Originally Posted by fiercegrrl

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

When my mom was dying with cancer and didn't want to eat, this is what I did as well. I mixed 1/2 ensure, 1/2 instant breakfast and but it in a blender with a banana. It helped keep her up with some protein until she got to the point that she couldn't drink anymore. She opted to not go through chemo and I supported her in that choice. For her, diagnosis to passing was seven weeks and one day. However, it is a fact that she was misdiagnosed nearly six months before the official diagnosis. Early diagnosis is certainly one of the largest keys to beating cancer. I wish everyone, both patients and caregivers, the best with their journey.

Glynn

[SuperFemme]

When I can't eat I just keep trying stuff until something is tolerable.

No worries SweetCali, I will be there soon to fatten you up! I have my handy-dandy recipes for blondes booklet and a lot of will power to make you feel better.

I will also show you how to make ensure tolerable. A girl has to add things sometimes.

[Andrew, Jr.]

Superfemme,

I have had 3 and 4 opinions on this. I have had blood tests run (ca125 and other labs), mammograms/sonograms, you name it - I think I have had it. I am going to the largest breast cancer center on the East Coast. I trust them.

There are doctors who I don't trust, and who leave me with a bad taste in my mouth. How they got their license is beyond my understanding. And trust me, I will never set foot in Johns Hopkins ever again. Not only for how they treated me as a transman, but how they neglected my sister with her cancer. Enough about that.

Thank you for your love and support. I appreciate it.

Waxnrope,

Talk to your sister NOW. Tell her what is in your heart. Tell her you love her. Tell her your dreams, your hopes, your loves, your losses. Don't wait a second more. Help her to die with dignity. I had to help my sister to die. It was by far the hardest thing on earth I ever did. Everything from writing letters to her 2 young sons who couldn't grasp what cancer is or what it was, to planning her funeral, to talking about the afterlife, to reading to her, to helping her pick tomatoes from a vine I planted for her in a small tub. I have such wonderful memories of her. I also remember holding her head while she was getting sick, her hair loss...it is just heartbreaking. So I know what is going thru your mind. Be with her, and don't be afraid to share your soul with her. She needs it just as much as you do.

SweetCali,

Try eating fruit shakes with real fruit. They are good. Or even ice cream floats. I love those, but they put on the pounds for me because I like whipped cream. If it is fattening I love it. And I'm diabetic, so I have to watch what I eat. There is a website from NIH that is from their nuitritional group. I am not sure of what it is called diet something or another. Try doing a search there, and maybe you can get some ideas.

Hospice is awesome. I know I had a bunch of angels helping out with my sister. They were just the best. Always knowing what to do, when to do it, and how to make everything flow. There were some days that were harder than others, but for the most part, I would recommend hospice to anyone.

Tommi,

Thank you my brother. You always are so kind to me. I just adore you!

PearlsnLace,

Humor always keeps me going. I love to get pms that are like that. The more the merrier. Thank you. I appreciate you thinking of this for me! How sweet of you!

Drew

[sweetcali]

Originally Posted by fiercegrrl

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

Thank you!!!

Originally Posted by waxnrope

sorry, sweetcali, I meant to quote and not thank you inappropriately. I'd like to offer suggestions, but have questions before making assumptions. Is that ok?
Do you have appetite?
how is your energy level?
are you sleeping ok?
are you trying to do the traditional three meals a day?
what confused you about the protein shakes? is it hard to concentrate?

Perhaps I should PM you ... that is how I usually communicate with people here. Is that ok with you?

Yes I do have an appetite.
My energy levels are really low. I just do not have the stamina I used to have for anything.
Sometimes I sleep ok sometimes I don't.
Yes I do the traditional 3 meals a day.
What confuses me is some say for muscle gain, some say for weight loss, some say just for added protein. etc etc.

Thank you,

sweetcali

[waxnrope]

Originally Posted by sweetcali

Thank you!!!



Yes I do have an appetite.
My energy levels are really low. I just do not have the stamina I used to have for anything.
Sometimes I sleep ok sometimes I don't.
Yes I do the traditional 3 meals a day.
What confuses me is some say for muscle gain, some say for weight loss, some say just for added protein. etc etc.

Thank you,

sweetcali

Thank you for responding, Sweetcali ....

• see if your provider will give you Vitamin B12 injections at least monthly (every 2 weeks is better for a while)

• take Melatonin 100 mg (health food stores) about 1 hour before bedtime to help you sleep
• eat 4-5 small meals/day (or graze all day). Helps digestion and makes sure that you are getting adequate nutrition. If, for example, you have soup and sandwhich for lunch, have 1/2 sand. and soup, then 2 hours later the other half.
• I am confused about your confusion! for muscle gain, eat more protein and lift "hot dog" weights ( 1 or 2 pounders);
• make sure that you do even a little bit of aerobic exercise daily ... among other things, doing so helps mood ...

[sweetcali]

Originally Posted by Oiler41

When my mom was dying with cancer and didn't want to eat, this is what I did as well. I mixed 1/2 ensure, 1/2 instant breakfast and but it in a blender with a banana. It helped keep her up with some protein until she got to the point that she couldn't drink anymore. She opted to not go through chemo and I supported her in that choice. For her, diagnosis to passing was seven weeks and one day. However, it is a fact that she was misdiagnosed nearly six months before the official diagnosis. Early diagnosis is certainly one of the largest keys to beating cancer. I wish everyone, both patients and caregivers, the best with their journey.

Glynn

Thank you oiler. I can talk about misdiagnosis for days. They misdiagnosed me for a very long time. They put me in the automatic menopausal depressed hormonal group. Until I went to the ER for a swollen elbow and ended up leaving there knowing I had a mass in my lung. So yup I get the misdiagnoses game.

Originally Posted by SuperFemme

When I can't eat I just keep trying stuff until something is tolerable.

No worries SweetCali, I will be there soon to fatten you up! I have my handy-dandy recipes for blondes booklet and a lot of will power to make you feel better.

I will also show you how to make ensure tolerable. A girl has to add things sometimes.

YAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I miss you bubbledoodles!!!

Originally Posted by waxnrope

Thank you for responding, Sweetcali ....

• see if your provider will give you Vitamin B12 injections at least monthly (every 2 weeks is better for a while)

• take Melatonin 100 mg (health food stores) about 1 hour before bedtime to help you sleep
• eat 4-5 small meals/day (or graze all day). Helps digestion and makes sure that you are getting adequate nutrition. If, for example, you have soup and sandwhich for lunch, have 1/2 sand. and soup, then 2 hours later the other half.
• I am confused about your confusion! for muscle gain, eat more protein and lift "hot dog" weights ( 1 or 2 pounders);
• make sure that you do even a little bit of aerobic exercise daily ... among other things, doing so helps mood ...

Thank you waxnrope I really appreciate it. When I was going through the second Tier Chemo they gave me B12 shots. I take b12 vitamins now; maybe I will ask them if I can get a shot.

sweetcali

[Lady Pamela]

Andrew...First of all, I want to thank you for creating such an empowering and supportive thread.

Next...To all those going through such a challenge or taking care of someone who is:

My heart goes out to you and your families.


A little bit about my experience with cancer:

Cancer has struck my family in many areas.
I lost my Aunt from cancer in her entire body when I was young.
I lost my Father 1 1/2 years ago from Melanoma.

My daughter got pragnant at 14..I know yikes! But during her pragnancy the doctors found cervical cancer...She had to carry and deliver the baby before treatment...Which was quite scarey. I am happy to inform that they removed and treated her after and she is free and clear to this date and she is now 30.

As for myself,
I seen doctor after doctor to find out why I was so ill and why I hurt so badly. I was so sick I was making dinner from the couch for my children on a hot plate. Cooking in the fireplace to make things fun. I had written good by letters to all my children in the event I passed. It was horrible to endure.
2 years into the pain I finally found a decent doctor who went in to look. They found all my female organs, including tubes and cervix had cancer cells. Of course they were removed. And that was 18 years ago and I am happy to say....I am still cancer free!


What I would say to everyone is use your supports you have..That is your biggest key. I am so proud of all of you who are or have faught and struggled through this horrible challenge. And I want you to know I will truely be here if you need an ear...Or simply a laugh!

Surround yourself in as much laughter and posotive light as possible.
It makes the healing and process from both sides so much easier.

Namaste

[Sachita]

My 33 year old niece had surgery on Wed. They removed one large tumor and several smaller behind that didn't show up on ultrasound. They also noticed some white spots on various organs. She is home waiting for pathology reports. It's been hard to sleep for all of us. I'm so tired and trying to keep pushing forward with so much to do. Things like this effect a family on so many levels. The extra money I thought I was saving for repairs now goes to help my sister. Don't get me wrong I am soooo very grateful I can.

Have you heard of this guy?

https://www.herbdoc.com/index.php?op...emid=38&cid=42

He's been around for years and had a lot of media attention as well as lawsuit, I think from FDA. His incurables program actually cured terminally ill people. I'm sure dietary changes were also added.

This past year my health wasn't good and even the past few months felt pain and fluttering in my heart. I was super tired all the time and even my moods were funky. I was desperate because to be honest I probably wouldnt go to a doctor. Thats just me. Just changing a few things made a huge difference and slowly I'm getting stronger and stronger.

The shit in the water, in our food supply and all these fucking pharmaceuticals are killing people. It's a very sore spot with me. Dec I will be a grandmother and I'm trying to figure out ways to work and care for my grandchild rather then daycare and hopefully instill things he/she will need to be healthy. I talk to my son's GF about things but then I see her current little 4 year old living on french fries and chicken mcnuggets washed down with koolaid or mountain doo . drives me nuts

[Spirit Dancer]

Today as we sit and hear the doctors making rounds,
the picture on the wall says


What cancer cannot do...

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot destroy peace.
It cannot silence courage.
It cannot suppress memories.
It cannot kill friendship.
It cannot erode the spirit.
It cannot conquer the soul.

[Spirit Dancer]

Originally Posted by sweetcali

I have Stage 4 non-small cell lung cancer and am currently under the care of hospice. I have found this to be a seriously bizarre journey. What I have found most bizarre is that people already have me dead. They will ask Mike how I am doing but they don't ask me. There were only 2 people that would call and check in on me when I was going through chemo the rest got angry because apparently I wasn't communicating enough. The whole journey is just weird. I find it really odd that they got angry with me when I was undergoing chemo treatment and I couldn't put 2 words together let alone type. Yet they were angry with me for not communicating. Ummmm...hello.....you try having every cell in your body killed off, drugs shoved into your body, swell up like a balloon and then then try to act as if everything is just fine. LOL It ain't gonna happen.

The whole thing is just bizarre.


sweetcali

Sweet Cali
I highlighted in red, exactly what we are going through, My heart goes out to you and all the others who are suffering and fighting this battle. At times it seems as if the loved one and caregiver are fighting alone. Its tough when your friends cannot fathom how very taxing Chemo and Steroids are on you.
It takes only a minute to phone and say I thought of you today.
So today I want you to know I thought of you and the others who grace this thread and silently said a prayer.

[fiercegrrl]

i am having surgery this week as well. another massive incision and a few days in the hospital.
this time around there is not going to be the constant help of my mom. not since she decided it was ok to steal most off my pain killers, anxiety and sleeping meds.
so my poor brain that's like swiss cheese these days is trying to play a strategic game of who can come be with me in the hospital and when and for how many hours. it's surprising to me that my friends are actually saying they can't help because they have already made plans. everyone always tells me to let them know when i need help. and when i finally work myself up to actually asking for it i hear no. and people wonder why i resist asking for help.
and to top off the fun of surgery my next round of chemo will be probably be administered while im in the hospital. that's just adding insult to injury.

when all this is done i want a fucking vacation. i want a hotel room with 1000 thread count sheets, a chocolate on my pillow every night, and a view of the ocean.

*sigh*

[Tommi]

5:30 AM Monday. I isolated this weekend, and I know it. Thank you Andrew for a place to visit.

The weekend is over, and I should be getting ready for work. The mail with that envelope from my Dr. arrived.. the results of my latest tests on May 13th at the Gyn/Onchologist arrived Friday, and it lays, still unopened on kitchen table. Is it okay. Do I need further tests? It's the unknown in a white envelope as big as an elephant in the room. It really is just an envelope on the kitchen table. They would have called, wouldn't they? Endometrial cance was Six years ago, I got the tests and the results monthy for the first year, then every 6 months, and after the 5th year, I just go annually. So why is one stinkin' envelope too tough to open?

We have a common bond on this Planet earth-you and I, and I am glad to be here with you.

It's Monday. In the pre-dawn hours I awoke and I thought of sweetcali and what she is going to have for breakfast, Andrew with surgery pending and that stinkin' unknown, and Sachita's niece who just underwent her surgery and waiting on tha stinkin' diagnosis of the unknown, and fiercegrrrrrl, and SuperFemme, and cybersubee, Lady Pamela and Spirit Dancer's walk among this stinkin' disease and SD's Syr, and PearlsNLace adventures.

Waxnrope , I wish you a smooth journey with your sister, as she may just need ears to listen, eyes to love, and a hand to hold. and ((((hugs))))) to the other's on the list of people linked here by my monitor.

We have a common bond on this Planet earth. and I am glad to be here with you. If you were here we could open the envelope together. I want to stay home, but, alas, I have no chocolate left in the house, so, I'm taking the envelope to work, and going to open it among friends, and have some mocha java.

To those that are new and to those who care for those who can't I say helloo, and welcome, and thanks for stopping by. . We have a common bond on this Planet earth-you and I, and I am glad to be here with you.

Tommi

[Tommi]

[waxnrope]

Tommi, I had a vision of sorts while reading your post. In it, all the people who come to this thread, all the people who care about one another, all reached out a hand and touched you .. on the head, the shoulders, the back. And when there were too many people so that some could not touch you (because it is crowded up in here!), they touched somebody who did have a hand on you, and so on, down a long long of folks.
You can feel this in your Spirit, Tommi, if you close your eyes for a sec. It is a mountain's worth of support and love. Now, without breaking contact, open that envelope and know that the hands stay right there ...

[Andrew, Jr.]

The secret of sucess is love. Love is all this life is about.

Fiercegrrl, you will be having surgery the same time I am. I think it is destiny for that to happen to all of us. What happens to one happens to all of us. Both of us will be recovering the same time. So you know I will be thinking and praying for you if I remember too. You know I get sleepy on those pain meds - lol.

[suebee]

Just wanted to tell everybody that I'm thinking of you. As much as is possible I'm with you in your journey - wherever on that journey you may be. Hugs and prayers: that surgeries go well, that envelopes hold only continued good news, that a friend can find it in their heart to visit and sit awhile. I'm with you. You have only to close your eyes and you'll find that I'm with you.

Gentle hugs and prayers to you.

Sue

[Andrew, Jr.]

Fiercegrrl,

I understand about people. I have had to do the same when I had my 4 prior surgeries. I actually had someone drop me off at the hospital when I was having my hysterectomy. Yep. At least it was at the front door, and I didn't have to pay for a cab or walk.

Now with this surgery, the surgeon will not operate without someone being there. It is a much different approach. Plus it is a different hospital too.

Remember one day at a time.

Love,
Andrew
oxox

[Andrew, Jr.]

Dear Sue,

Thank you for your post. It was so very kind of you to hug and pray for us. God bless you.

Namaste,
Andrew

[Tommi]

Originally Posted by cybersuebee

Just wanted to tell everybody that I'm thinking of you. As much as is possible I'm with you in your journey - wherever on that journey you may be. Hugs and prayers: that surgeries go well, that envelopes hold only continued good news, that a friend can find it in their heart to visit and sit awhile. I'm with you. You have only to close your eyes and you'll find that I'm with you.

Gentle hugs and prayers to you.

Sue

My Doc says I'm normal..I have peice of paper saying so.

Waxrope, thank you for the bond that ties us together ! Normal. Opened the envelope @ work , and that little 3 X 5 slip of paper in the envelope read normal on all the tests.


And Ditto on what cybersubee said above Andrew and fiercegrrll....Wow, what a journey, what a bond.,

and sweetcali, have you had breakfast. How bout some Pnut butter n jelly and chocolate milk
PM if you need anything in the hospital, or at home. I can have pizaa delivered, or maybe chocolate shakes..

PM me if you want a phone number and we can talk about the weather. (((XOXO))))).

[Andrew, Jr.]

There are no accidents in life. Everything is done by our Creator. It is a master plan. We all come into each other's lives for a purpose. Destiny is what I call it. Someone once asked me if I minded if they "thread stalked" me. I said no. Go ahead. I have nothing to be ashamed of or to hide. I am what I am. A human being. I have the same DNA as the next guy. This person was shocked. I have no idea of why.

I think in life we have to help each other out. If someone falls down, we have to stop, bend over, and help that person back up. At least that is how I live my life. I am not the kind of person to walk over someone who obviously needs help getting up. It is not only my Christain and Buddist principles but my humanitarian ones that keep my heart in tact. I can go to bed and sleep at night. I don't have to change my name at different sites. I am who I am.

Please pray for both Fiercegrrl and myself. Our surgeries are tomorrow & Thursday. Thanks.

Namaste,
Andrew