Queer Caregivers for Folks with Cancer: Discussion's Journal|
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Queer Caregivers for Folks with Cancer: Discussion's LiveJournal:
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|Monday, November 28th, 2011|
My donation wishes!
Hey I'm a bi chick and I have a few close friends and family who have had Leukemia and some have been saved by bone marrow transplants and some have passed away because the marrow was not available. Also a lot of research needs to be done in this field which cannot be done without bone marrow donated by people. I am planning to do it. I also think it is horrible that gay men cannot give blood or organ donations. It makes me so angry. :/
But I am going to have some fun too! So I have entered a competition called "Stories Beat Stuff" It is a competition based on what you would trade to charity (basically some thing special to you or something valuable) to win a holiday to New Zealand. I would gladly trade my bone marrow. Obviously I am doing it anyway, but I think winning the trip would be a pretty great bonus for once I recover from the surgery. :)
So please, please vote for my entry! I would appreciate it so much. Thanks for reading guys!
http://www.newzealand.com/au/campaign/stories-beat-stuff/summer-rhythm/filter/latest/page/1/trade/BC2166B1-A3FB-DF01-2F2718F82A1FD36F/ Current Mood: determined
|Monday, April 27th, 2009|
Hello! My name is Patricia Metzger and I am a graduate student studying clinical psychology. Like you, I have been faced my own cancer diagnosis, along with having supported several family members and friends diagnosed with a wide range of cancers and other life-threatening diseases. These experiences have forever touched my life and have inspired me to attempt to better understand the experiences of those facing cancer and other life threatening illnesses.
As part of my dissertation research, I am conducting a study examining interpersonal relationships and communication amongst those facing cancer or another life threatening disease. I hope to gain a greater understanding of cancer's impact on relationships, the role of communication following a diagnosis, and it's role in psychological health and relationship development. In the long term, I plan to develop interventions/therapies to aid in the emotional, psychological, and relational adjustment to this disease.
I am currently seeking participants in a study of relationships after one partner has received a diagnosis of cancer. Any person who is part of a serious, long term relationship (e.g., married, partnered, engaged, etc.) and has either received such a diagnosis, or has a spouse/partner with a diagnosis, is invited to participate. Both halves of the couple are asked to complete the survey; if both persons complete it, they will receive $25 compensaion. Alternatively, these funds can be donated to a charitable organization of your choice, such as the American Cancer Society, National Hospice and Palliative Care Organization, Susan G. Komen Foundation, or any other organization of your choosing.
You and your partner are invited to participate in a brief study lasting no more than 20 minutes - most persons complete the survey in just 10-15 minutes. It will ask you about your experiences following diagnosis with cancer. Only persons who are part of a long-term relationship should complete the survey; we also ask you to refer your spouse/partner to also complete the questionnaire. All responses are confidential and anonymous; no identifying information will be collected. Responses will be used only in aggregate form, so that no one can identify your responses.
The web address for the study is:https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6
In exchange for completion, $25 compensation will be offered to couples where both persons complete the study. Funds are only available if BOTH partners complete the survey. You are asked, following your completion, to ask your spouse/partner to also complete the study. You should simply refer them to the same web address noted above. Available funds can be mailed to you, or donated to a charity of your choice. If you choose to have funds mailed to you, contact information will be stored separately from your survey responses.
To refer your partner and receive compensation, you should direct your spouse/partner to this same survey link (https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6
). Completion by both you and your spouse/partner will better help us understand relational issues resulting from diagnosis and will help us to develop interventions, treatments, and therapies that will facilitate coping with this difficult life event.
If you have any questions, comments, or concerns, please contact me at the following email address: firstname.lastname@example.org.
Thank you very much for your assistance on this project! Completion will help us better address the needs of those facing cancer and other serious illnesses so as to minimize the stressors at this time. If interested, please contact me via email (email@example.com) for the results of the study.
Again, you can access this brief study at:https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6
Patricia L. Metzger, M.S.
University of Wyoming
Department of Psychology
NOTE: Please encourage your partner to take this! It's a small amount of time and is a huge help in the long-term goal of developing interventions for those facing this horrible illness - understanding BOTH sides of the story takes this someplace research hasn't gone. THANKS for your help!!
|Friday, December 5th, 2008|
National Hug Your Caregiver Day Initiative
National Hug Your Caregiver Day Initiative
Caregivers are the backbone that supports our society. They come in many shapes, sizes, and focus in many different areas. Everybody knows caregivers. They can be parents, spouses, family, friends, healthcare providers, massage therapists, chiropractors, nanny's, babysitters, pet sitters, or anybody else who has taken care of another living being.
Caregivers are also some of the most ignored and taken for granted people in our society. These people dedicate part of their lives, if not their whole lives, to caring for others. And yet, they are often touch deprived and feel under/un-appreciated.
Started in 2008, the National Hug Your Caregiver Day Initiative is trying to raise awareness about caregiver appreciation. We are helping people learn to show their appreciation for the caregivers in their lives.
Join our yahoo group at: http://groups.yahoo.com/group/hug_your_caregiver_day/
Use this blog
to share your stories about caregiving, or to share your stories about a caregiver who is special to you.
The website is being created and will be going live by January 2009.
"Smile! You're getting hugged!" Current Mood: ecstatic
|Wednesday, May 28th, 2008|
ady had a mastectomy Feb 2007. Estrogen+, so they gave her tamoxifen. She's also diabetic and takes actos. A couple weeks ago she was informed that actos blocks tamoxifen's effects, which probably explains why she's still menstruating regularly. We inquired about that some time last
summer, and her hotshot doc said it was nothing to worry about. Only because insurance denied refills on the tamoxifen because of this interaction (after having always filled it for a year and a half) are we aware of the effects of the drugs together.
We've been scared, and plenty more. Today she went in for another mash-o-gram. We get the results read on Monday.
We're still scared, and sad, and angry...
What do you do?
|Thursday, September 20th, 2007|
I just wanted to check in and see how everyone is doing.
I am okay. Not great, but okay, and I am very happy to be doing that well.
Hugs and strength to you all!
|Tuesday, August 7th, 2007|
Symposium on Queers and Cancer
Hey there everyone.
I think some folks on this community were actually at this event, but I wanted to post a link to a cancer survivors' panel at the Cancer In Our Lives Conference in SF last fall. Heather spoke at the one of the panels for providers' and today I really wanted to hear her voice so I listened to it, and was reminded of how amazing the whole thing was, with different people sharing about advocacy and getting the best care for the LGBT folks. Heather ended her piece of the presentation with an admonition to providers: "Don't mistake our passion for stridency."
Anyway, you can listen to the MP3 file here.
And info about the conference in general is here.
|Thursday, July 12th, 2007|
3four50.com - Social Network
I hope it's OK for me to post on your journal, it's just that I am collaborating with the interactive website 3four50.com which deals with health issues and chronic diseases such as some cancers, where you will find the opportunity to network with people from many different backgrounds and expertise around the world, as well as the opportunity to post photos, blogs, watch videos and comment about everything!
You might want to take a look at the Experiences section where you can share your stories and experiences - we'd love to have your blogs on the site, as well as any photos or feedback.
I look forward to seeing you at 3four50.com, and hope we can build a really useful, supportive network.
|Wednesday, July 18th, 2007|
Emotional Roller Coaster Ride
So today has been an emotional roller coaster ride. You would expect me to be instantly elated when I heard the news that Jeanine's PET scan came back negative for Cancer and Possitive for grey matter ;-) But no, I started to panic... yup had me a mighty fine panic attack and am just coming down from it (after researching, listening to music, watching a movie about Meat Loaf the singer, and writing) about 6 hours later. Yup.. should have had me some xanax already... I never remember in time to avoid the after panic headache and cry head (even though I really didn't cry.. well OK.. I did my one eye cry I learned to do as a kid).
Anyhow, I re-read a bunch of messages from folks on our Merkel Cell Cancer Google Group. I wanted to make certain I was remembering advice correctly because I had myself convinced that PET scan die doesn't pick up MCC cells and she needs and MRI as well. Thankfully I found out that there was only one person who posted that their PET didn't pick up the MCC only the MRI did. In fact the PET is the Mama Jama of all tests recommended for this cancer and I totally faked my way through my arguement with the oncologist about the latest protocols for MCC stating they definitively state a PET should be done. Um.. they don't but he did it anyway. So... I think everything is OK. I think I ended up with what I was fighting for back in February. I can't really remember. Dang.. I'm starting to panic again. ugh!
Anyway, I thought I would share a post from a group member (and 5 year MCC survivor, Heather, a true angel here on earth) in response to my call for advice on how to advocate for Jeanine (Back on January 5th). It pretty much sums up how I'm fealing.
"My heart goes out to you at this time, Susan. In my opinion (as a
former patient), the job of a caregiver is even harder than that of the
person who has the disease. And now that you and Jeanine are rounding
the corner and finishing treatment, you are now getting the first taste
of "survivorship"... which for me was almost as difficult as the
treatment! Before you had everyone weighing in on "what to do" and
"how to fix it" (doctors, friends and family, etc)... everyone banded
together and was talking about "surviving" and "beating the cancer".
Now that treatment is over, doctors are like "Well, you're done! See
you later! Congratulations on surviving!" Friends and family are like,
"Congratulations! Now go out and live your life!" But how are YOU
supposed to switch gears? For months you have been immersed in the
"cancer culture", fighting every day, afraid of dying... and now the
cancer culture is done, and there's nothing to do to fight, and you
don't remember how to live without being afraid. Survivorship is much
harder than one would think!
Have either of you thought about finding a support group for survivors?
(The good thing about those support groups is that it doesn't matter
what kind of cancer they had, and you don't need to find one specific
to Merkel Cell...) That may help you to vent a little. Also, four
years after I finished treatment, I picked up Lance Armstrong's book
"It's Not About the Bike"... I thought it had a great chapter in it on
survivorship and the feeling of being "lost". Sometimes it just feels
good to know you're not the only one..."
OK... I'm crying now. Finally. Sorry if I made anyone else cry. Good news is crying makes room for feelings and expressing those feelings makes room for healing... OK now I'm counceling you... I'm off to bed.
Night all! Group Hugs & Kisses!
SueB :o) Current Mood: mushy
Introspection on the 4th
Jeanine has gone off to bed but I am up catching up on my list reading. I've been so busy and away for a few weeks that I haven't read much in about a month.
This fourth of July was very different than last years. For one, this morning we sat on our front porch, almost carefree and watched the parade pass by (instead of packing up our apartment). At one point my memory failed me and I asked Jeanine why this year she decided she wouldn't mind watching the parade. She reminded me that she had nothing against the parade last year, it was her nerves. She was scheduled for surgery the next day, to have her first surgery in fact, to remove her left parotid gland. Wow.. It's been a year from that first surgery. Unbelievable... she doesn't consider it as a milestone. She said that once we get to mid January (the one year anniversary of her last chemo treatment) she'll consider that a milestone.
This afternoon we had friends over for a meal in the afternoon (instead of having them over for a painting party and grilling on the front porch in the rain). Tonight, we get to go to sleep not worrying about surgery. A year ago we thought she might have Lymphoma (now we are hoping the PET scan on Saturday shows up clean with no traces of MCC).
A couple of days ago we found out that the oncologist called our family physician to cancel her MRI ... he wants to see what the PET shows first. She is fine with this. I am tired of fighting about the MRI. It took A LOT of energy to get her to read the research and then threaten to switch doctors befor the oncologist would agree to both a PET and MRI. Jeanine is scared about the results of the test and really isn't fond of the thought of radioactive material coursing through her veins. I'm not at all scared, I'm MAD. I'm ticked that the dang b-stard pulled a fast one by calling our Primary (the guy who writes the rx for the scans and also knows nothing about MCC) and convinced him to cancel the MRI. But, she is scared and is still having memory issues related to the chemo, so she probably doesn't remember the hassle we went through to get the MRI scheduled. Rather than making a big sceen and causing more stress I didn't make a fuss. We'll get the PET and even if it's clean I'm still going to insist on the darn MRI. She just wants to move on with her life (she hasn't read the MCC support group list in months because she doesn't want to think about MCC anymore than she does on a daily basis ... when her scars hurt or she can't do something with her left arm because she doesn't have the muscles necessary to do the action or sometimes when I just nudge her wrist a bit so I can put my arm around her waste for a hug and she winces and gasps a bit because shooting pains are going into her shoulder). I don't get scared about cancer anymore. I get MAD because her dying is not an option and until she can remember important information and advocate well for herself, My job is to make sure she has a long life. Dr. Roger Cohen at Fox Chase, watch out. She's getting that dang MRI!
|Sunday, June 17th, 2007|
things are going, I'm getting over a bug and we're both getting over lack of sleep...
R and I did the Relay for Life walk friday night and it was really sureal, strange and kind of sad I don't know how to explain.( Sad newsCollapse )
|Friday, May 25th, 2007|
|Monday, May 7th, 2007|
R starts chemo thursday, I'm not sure how I feel really kind of conflicted right now... am I scared, am I hopeful, am I freakin werided out?
I'm not sure yet
I started school today too so far so good, my only concern is that I want to make sure I have enough time to do everything that I want to do... like going to her appoitments, study, go to class, walk the dogs, clean the house, study, make meals, study... did I mention study lol
I'm trying not to get too overwhelmed with everything that I feel like I have on my plate... any good organizational suggestions?
B Current Mood: busy
|Thursday, April 19th, 2007|
Not sure what to do
I've never posted here before but I am the non-bio mom of an 18 year old living with cancer. She has rhabdomyosarcoma. I have raised her for most of her life. I guess I don't know where to turn for support.
Virginia (my daughter) was finally ready to talk last night about the news she received from the doctors. Basically Virginia’s new doctor was very honest with her and said that she will die from this cancer. Her chances are about 1% that she is ever going to be “cured”. It has come to the point now that they say if she gets rid of it in one area it will move to another. There are little “speckles” of cancer (the best way to describe it) all over her body and at any point those could take over, or it could grow in to more tumors.
The treatments he recommends are to attempt to prolong her life so she can do the things she wants to do. She is only 18. There is no guarantee that those will work and even radiation will keep it at bay and not completely get rid of it. So far Virginia wants to atleast try some of these other treatments because she has things she wants to experience in life first. She wants to go on road trips and have fun.
So that’s it. I can’t even think. I tried to talk to a friend about it yesterday to try and reach out to someone because I know I’ve been isolating myself from friends. I didn’t even want to talk about it for fear of people being limited in their thinking, as if once again, Gina (her bio mom) was the only one going through this. Unfortunately, its how a lot of people react that aren’t more self-aware. None of my friends even ask me how Virginia and I am doing anymore, besides the people on lj. I can’t even remember the last time any of my friends asked me how things were going or how Virginia was doing.
I finally reached out to a fairly good friend about what is going on and how I’m feeling. All this friend could basically say is “That’s hard. Gina must be devastated!” Did it ever occur to anyone that maybe we are all devastated and it’s not just her biological mothers’ loss? It takes a community to raise a child and even her grandparents are going through hell. I am really done talking with friends about this or bringing it up any more. I think it’s better to stay isolated. It hurts more to bring it up with the responses I get than is even worth. I just can’t understand why people who are supposedly good friends don’t even want to know how Virginia is holding up, at the very least. We don’t even need to get in to anyone’s emotions because I know that is hard for people. Not one person has asked me in months how her chemo is going or whether it’s working. I just blab on my journal or talk to my current partner about it.
I’m devastated. I quit my job last week because I had a feeling it was the right thing to do. Turns out it was. My "bug" is going to die. I’m home today because I can’t even move or think straight. I feel like I’m dying inside. More than anything I wish I could somehow blast the cancer out of her and put it in me so I can go through it instead. I have had life experiences and she hasn’t. I would feel okay with dying so she could live. I would give up all of my dreams for her. This is so unfair. Current Mood: worried
|Wednesday, April 18th, 2007|
no real new news
I am now free of school and the constant studying I was trying to attempt last week, I passed yay
Now onto other more important things, Robin starts chemo hopefully next week, we meet with the oncologost on wednesday, and will hopefully get all the answers we are looking for, like how often how aggressive, and all that stuff
she sometimes tells me that she feels the pain that she had before in her breast area and in the airmpit area where she had the cancer, and we're just hoping that doesn't mean that it's continueing to spread, BUT even if it does I am just glad to know that the primary source of the cancer is suppose to be gone
Now I just have to figure out if I'm going back to school in the summer or if I should take the time off to be with her, it postpones my graduation another 8 months so at this point I'm not sure what to expect, so it's again with the stinkin waiting game
But otherwise things are good, she's getting stronger everyday, visits the pity city everynow and then but who doesn't I guess
We also got intouch with a lesbian cancer support group in toronto so we're going to the meeting in two weeks to check that out, so lots going on still
I'm just crossing my fingers that everything is going to go well! Current Mood: content
|Monday, April 16th, 2007|
My dear friend died yesterday. The day before she'd sent me an e-mail telling me how she loved me. Like Jessa herself, it was bawdy, sexy, silly and tender all at once. It was the most beautiful thing anyone has ever written to me. I burst out crying when I read it but never answered, because I thought I'd be talking to her Sunday. Only by the time I got there in the late afternoon, it had started: her lungs were failing. Her lungs were failing, but her heart was strong, so it took time. There were three of us there with her at the end, including the hospice nurse, for which I'm so grateful. Her partner G. was in the car driving back from a conference in Ashland, and we got her on the phone. Jessa was able to hear her voice, and I know she felt us all there, loving and caring her through that hard part to whatever comes next.
She's flying free of her body now. Deep peace.
See you in the next life, Jessa love.
|Saturday, April 14th, 2007|
Chemo Hair Story from yesterday
This is real... My wife, Jeanine, works at a Federal Credit Union. She is currently working at a branch located at a Hospital. Today, one of the customers, a nurse, commented that she loved J's hair and asked where she got it cut. J replied, "Fox Chase Cancer Center", this is my hair growing back in after Radiation and Chemo Therapy Treatments. The woman looked a bit shocked at first but then said that she thinks really short hair on women is very cute.
I almost cried I laughed so hard when Jeanine told me this story this afternoon. I hope I did it justice in the re-telling so you can get a kick out of it too. :-)
|Tuesday, April 10th, 2007|
My wifes update
So last month she had an ultra sound of the neck and it came up clear. So her surgeon re-staged her at stage 0 as there is no remission for her kind of cancer. A few days ago she noticed a couple of bumps near her original cancer site. We are hoping she is just stressed out and it's just tense muscles. We went to Fox Chase Cancer Center for a Check up today (planned months ago). She had the dermatologist feel the lumps and he said they could be inflaimed lymph nodes (they are in an area where the nodes were not removed). He strongly suggested that she see her cancer surgeon ASAP. So we went and spoke with her nurse to schedule an appointment for this Friday afternoon. Then we went to see the coolest Doc. He is the Radiation Oncologist. He felt the bumps and said that he thought they seemed to be muscle spasms.. but just to be safe he ordered a CAT scan.
Today is my 34th Birthday. J asked me a few months ago what I wanted for my Birthday and I said, "A CLEAN full body scan... of your body!" So... we brought this up.. not mentioning my whole Birthday wish thingy... so the doc agreed to get a chest CT as well to rule out any spreading to other sites.. like essential organs. Apparently MCC goes to the lungs &/or liver next.. if it is to spread at all. So, I was feeling good about that until I told my sister-in-law on the phone when she called to wish me a Happy Birthday about an hour ago. I am happy that I got part of my Birthday wish (the scan) as her chemo oncologist has been refusing to give her one. But now I am worried that the bumps are not just muscle spasms... I'm trying to concentrate on the possitive side of things... We'll know on Friday not 2 weeks from now.. so not long to wait... we'll know if her organs are clean or not which I have been anxious about for about 6 months now, and I have a job interview for a second job next Monday... which I desperately need to take care of some of the debt we have accumulated over the 6 months J was out of work.
I must go bite my dog now.. she is destroying something in the kitchen :-)
|Monday, April 9th, 2007|
part one of the ME story
WOW! you guys are great! such long comments I decided to answer them all here...
I guess I'll start near the begining.
(if any of this is an overshare please do tell)
My partner and I have been together two years, and living together for one. and in January she found a lump.... feb was ultrasounds, and a mamagram, march was diagnosis, core biopsy and bilateral mastectomy with lymph node disection....
it's been a crazy year!
Next is meeting with an oncologist to set up a chemo schedule, she has been staged at Stage 2 due to the size of the tumor, and the fact that 4 of the 8 lymph nodes tested positive for carcinoma...
I think I'm going crazy!
Unfortunatly, R and I both have a medical backround, she's a paramedic here in CANADA :) and I was working my way into the program and then changed directions (hence the "vanillamedic" as I am...mostly vanilla and I was going
to be a paramedic but with her in that profession I wanted somthing more flexible for our future, family, kids and all that jazz...
I'm currently in school for Massage Therapy which has a pretty extensive medical componant too so it works out
Anyways, I haven't really got any personal support other then my friends which live at least an hour away, R did encourage me to go see a councellor at school which I have but, I have issues with councellors so it was nice but too much of " and how do you feel and how can you make that better for yourself" (no offense intended to anyone who might be in the profession) so R has talked to a surviver, and read lots of stuff (which is good or bad depending on the day)
I wasn't really sure if I should try to make contact with any "cancer support groups" I feel like I shouldn't really be there, or wanting to be anyways, I should be strong, I should be there for her, I should get on with it and study for finals and be able to cope, which I am doing, not very well but there is effort involved
I'm kind of at the point where I don't know what to do, I have been the shoulder to cry on, for her and some of her family, my parents are aware of the situation, but aren't all that keen on my lifestyle so they aren't really involved in my life as it is (my dad is a layman pastor so it's...strange)
R has her moments where she;s great, upbeat, postive, and other moments or days where she;s down and sad and down right angry, and in those instances I am at a loss, I want to make it better for her, I want to go through this for
her I want to take her anger and put it in a box and burn it!
somedays like I said are like nothing has happend, and others I just... I'm lost
I've never been here before, I haven't really has anyone close to me seriously sick before, and SLAM into reality I go, R's grandmother died of lung cancer in 2000, her mother had and has conditions that are termed "pre cancerous" so we're figureing with a little of this and that it's got a lot to do with her genes!
Like I said, I really don't know what I'm doing here... I'm supposed to be studying but sometimes my brain just can't function at that level.
Okay I'm done, I think
:) Current Mood: distressed
|Sunday, April 8th, 2007|
I'm not sure if I should be posting here....
my partner was recently diagnosed with breast cancer, and a friend told me about this community. I'm not really sure what to do, or expect, my partner recently had surgery, and now we're waiting to meet with an Oncologist in two weeks fo set a chemo schedule...
I'm really lost, and any advice would be so very welcome! Current Mood: contemplative
|Wednesday, March 28th, 2007|
X-posted here and other places, apologies if you read it twice or more.( Cut for the vanilla of heartCollapse )
Any questions I haven't mentioned, or thoughts you have, are greatly appreciated. Thanks.