Cancer Support and Caregivers Who Are Trail Blazers!

[waxnrope]

Originally Posted by sweetcali

I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali

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?

[waxnrope]

I will be going to Switzerland in about a month ... if all goes well ... to be with the last of my immediate family, my sister. I can only go for a week because it is all the time that I can take off from work.

My sister, Dolores, was diagnosed with an aggressive lung cancer which I learned about the in April, and has lived there, in Switzerland, with her husband for a couple of years. They have good health care there, albeit, slow, and from what I can ascertain, the various specialist do not communicate well with one another. I have been doing the arm chair quarterbacking of her care from afar. I hope that by my going this time I will be able to establish firm contact with at least the oncologist so that I have email communication with her on a fairly regular basis. We have "fired" her primary care doctor, the "professor" who is dismissive and unresponsive.

My sister gets confused about all that is going on: she was having palpitations and her PMD did not think to do a simple EKG. I told her to ask for one, and it turns out that she had a significant irregularity that required medications for the rhythm as well as a blood thinner to prevent clot formation and subsequent stroke. There were complications from this in which I had to intervene/interfere. Thus, we fired the bastard.

I initially planned on going in the fall/September, but she wants me now, during the next cycle of her chemo and when she will begin radiation therapy.

While this does not place me as the usual "caregiver" (her husband is that), I am the one she turns to for help in navigating the tangled webs of western medicine. So, in that fashion, I am a caregiver. If/when her condition worsens, I suspect that I will be there for a longer spell and providing her husband with some respite.

I cannot utter that which lays like a stone in my soul about how I feel about my "big" sister having this cancer. I don't know what to say when she says, "I don't know what to do" ... meaning, about dying. We have started the conversation, as a suggestion by a friend of mine, about a bucket list. We've begun the stories of mom anew (she was a medical "miracle" in that she had 3 separate cancers and lived 3 1/2 years beyond her "six months" prediction) ... and have started the laughter in the telling of such tales.

There is someone, on this site, knowledgeable about cancer research. She has helped me as I am trying to stay one step ahead of the "natural history" of my sister's cancer (if and when the treatment fails). She has been supportive and kind.

As for me, selfishly, I feel at times abandoned and homeless, in an odd sense. I have been writing when I can face it. The pen is my therapist. Metaphors are my life. My new love keeps me from drowning.

Thanks for reading/"listening"

[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

[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

[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.

[Tommi]