Cancer Support and Caregivers Who Are Trail Blazers!

[IttyBittyFem]

Thank you Andrew for opening this Thread.

So many of us, just from the Planet, have been effected by Cancer. Either had/has it and/or are Caregivers to loved ones that are going through it.

I've been on both sides of the Fence and currently, my Mom's Caregiver. I now realize that each case is unique and each person reacts differently.

Having Cancer certainly is no picnic, but it's YOU that has it, so it's a bit easier to go through.

When you're the Caregiver, it seems more torturous to me. I want to take on the physical reactions, I would rather have my own hair fall out then theirs, I'd rather be the one that needs to force the food down, etc. It's just excruciating to sit by, feeling totally helpless, watching your loved one travel through the journey you're so familiar with.

Sometimes I wonder - which is worse.

[IttyBittyFem]

Originally Posted by Daryn

My latest results are back and this test is normal. I am so thankful.

Just WONDERFUL news Daryn. . Congratulations! . Thanks for sharing with us.

[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

[Spirit Dancer]

All i can say is that is so wrong (((((((((cali)))))))))))and it happens entierly too much.

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

[Andrew, Jr.]

I think the problem is fear. Alot of people just don't know what to say or do around those who have cancer. You get alot of talk, but no action. Some well-meaning people really do want to do something but are so afraid. The cancer scares them. It changes everything about your life.

I did receive a note from Fiercefemme. The news is not good. She has a rare form of cancer. It has spread. She is starting on chemo. She asks for everyone to pray for her, and her family. I told her I would pass the word on.

I wish everyone peace.

Namaste,
Andrew

[fiercegrrl]

Originally Posted by Andrew, Jr.

I think the problem is fear. Alot of people just don't know what to say or do around those who have cancer. You get alot of talk, but no action. Some well-meaning people really do want to do something but are so afraid. The cancer scares them. It changes everything about your life.

I did receive a note from Fiercefemme. The news is not good. She has a rare form of cancer. It has spread. She is starting on chemo. She asks for everyone to pray for her, and her family. I told her I would pass the word on.

I wish everyone peace.

Namaste,
Andrew

hi to anyone following this thread.
i do have a rare cancer in that i shouldn't be affected with it for a good 40 years from now. i have a form of ovarian cancer that usually affect women in their 40s-60s. my doctor is baffled as to why i, at 26, have ended up with it.
i am incredibly lucky though and there was an angel in the form of a GYN i saw at sliding scale clinich (that mostly works with the LGBTQ community) who called in favors and got me a fantastic doctor and my medical care is being covered (i am uninsured). i owe her thank yous every day.
because if much time had to had been taken to find health care all of the 100's of small tumors that are on the surfaces of my small.large intestine, colon, and diaphram they would be IN those organs and i probably wouldn't have much hope for recovery much less survival. but i'm lucky and they are still on surfaces so i'm trying to focus on that.
and my doctor thinks that since i and young and otherwise healthy that i will fight this. i just might have to fight it many time over my life span.
not what i asked for from life. but i don't have many options but to be fierce and deal with it.

-nicole

[Andrew, Jr.]

Nicole,

You are a fighter. I am praying for you. God bless you, and your family.

Love,
Andrew

[Andrew, Jr.]

How is everyone doing?

Andrew

[Tommi]

Originally Posted by Andrew, Jr.

How is everyone doing?

Andrew

Andrew,
After a tough couple of months, and DustyBoy Kitty passing through on May 1st, I realized how time flies
I celebrated 6 years of being cancer free on May 15. Endometrial cancer diagnosis shook my world and it felt like the air was sucked out of the universe. After radical total hysterectomy, and 16 lymph nodes removed, i did well UNTIL...I got a massive infection that almost killed me.

I live every day to the fullest, and love like there is no tomorrow..Thanks for all the love and positive energy.

Tommi

[suebee]

Originally Posted by Tommi

Andrew,
After a tough couple of months, and DustyBoy Kitty passing through on May 1st, I realized how time flies
I celebrated 6 years of being cancer free on May 15. Endometrial cancer diagnosis shook my world and it felt like the air was sucked out of the universe. After radical total hysterectomy, and 16 lymph nodes removed, i did well UNTIL...I got a massive infection that almost killed me.

I live every day to the fullest, and love like there is no tomorrow..Thanks for all the love and positive energy.

Tommi

Another rose bush Tommi! My second anniversary is coming up soon. It's a good feeling, isn't it?

Prayers and hugs to all those fighting the fight.

Sue

[Tommi]

Originally Posted by cybersuebee

Another rose bush Tommi! My second anniversary is coming up soon. It's a good feeling, isn't it?

Prayers and hugs to all those fighting the fight.

Sue

soon for you.
WOW..It is a good feeling to be know we will celebrate 2 for you soon. See, it has been fast. i remember you posting way back when.

Plant a beautiful rose bush wherever you are, cybersubee. It is a good feeling to stop and touch the flowers. I am having some friends over, and I will plant my 6th in the front yard this weekend. I took huge roses from my yard to work on Monday.

My private celebration, to stop and smell the roses.

Love to all who carry the torch for those who no longer can.


Tommi

[Andrew, Jr.]

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet.

Andrew

[sweetcali]

Originally Posted by Andrew, Jr.

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet.

Andrew

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

[fiercegrrl]

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

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...

[SuperFemme]

Originally Posted by Andrew, Jr.

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet.

Andrew

If I were you I'd make sure to get a second opinion Andrew.

It is kind of unethical for a doctor to tell you that you have cancer before the biopsy results are in, don't you think? It is unconscionable to have you this stressed out withOUT results!

That would worry me a LOT! I know everyone is praying for you to have a good outcome.

We have to advocate for ourselves. I know that I always get a second opinion because one just never knows what a new set of eyes may see.

If you don't like a doctor then don't go back. If a medical professional is cavalier with you? Step up to the plate for yourself! At the end of the day we are the only ones that know our bodies and what is really best.

[Tommi]

Andrew, I wanted to say thanks for this thread. Thanks for a place we can come to and talk among those who understand this journey

And for those taking care of us, a place to seek and rest among friends. Any time of the day or night call out, someone is near by.

sweetcali,
My Mom loved peanut butter N jelly sandwiches, chased with coffee flavored milk shakes. They now have frozen,I think it's Smucker's Pnt btr and grape jelly..Wishing you well this Sat. AM from So Cal. If you were closer I'd bring you some stuffed French Toast from Mimi's.

"and maybe fiercegrrl could bring you a joint to give you the munchies".

Andrew, ride hard and be prepared. I know you have been here before dear friend.. Candles of hope for you and you are in my prayers....Tommi

Originally Posted by SuperFemme

If I were you I'd make sure to get a second opinion Andrew.. ...We have to advocate for ourselves. I know that I always get a second opinion because one just never knows what a new set of eyes may see. If you don't like a doctor then don't go back. If a medical professional is cavalier with you? Step up to the plate for yourself! At the end of the day we are the only ones that know our bodies and what is really best.

Great advice SuperFemme,
I canceled surgery a day before I was to scheduled for a total radical hyster for uterine cancer. I had done the autologinous blood transfusions for 6 weeks at the Red Cross and my blood was waiting at the hospital for me.

I asked the Doc if she had the results from my CT Scan, because my one kidney looked enlarged on the ultrasound..She said no, but if I see anything when I'm in there, we'll take care of it!!!there is always a general surgeon in the OR. STOP>>>I asked if maybe an MRI should be done prior to surgery. She said no, we can "always" remove your kidney...ALWAYS...cause I have 2?

Went to a Gyn/Onchologist, who did total workup on me, including the MRI, bone scan, liver scan, lung scan, etc , prior to OR..and saw I had some lymph nodes that were swollen, and 16 had to come out.BUT all was known, ahead of time.

[Tommi]

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

Post chemo
Get 2 paper plates. Glue a tongue depressor, or a couple of banana popsicle sticks. on each. Put a happy face on one side, and a sleepy face on the other. Trace your fist with middle finger extended on the other plate, and a bigger smile on the other side..
banana popsicles always make me feel better

[PearlsNLace]

Andrew, is there anything that we can do for you, here on the Planet, to help you through this time?

When I had my lump removed a couple years back, it was humor that kept me going, and a whole lot of PMs.

THinking of you today, and this week.


PnL

[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"