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so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials. i agreed. and i'm still having panic attacks about it. i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food! most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial. oy i'm rambling... |
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Going into hospice isn't giving up, it's another tool in your fight against this Cancer, a tool to help you remain strong and try to be free of pain. Let your family know you're not giving up that you are simply adding to your exsisting support system. Panic is a coping mechanism we use when we fear losing our control, it is okay to feel. Know if you need more support there are many online support groups as well there are many in the DC area, if you should neeed anything PM and i'll link you site. Hope, Faith and healing light to you. |
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want to know something fabulous? if you DO get hospice care it doesn't mean you HAVE to die within a certain time frame. get your doc to write you a scrip for zofran injections...it's the only thing that really works on the nausea. take your pain meds. start hospice...goddess knows we are all pulling for you and worried about the fact that your mom likes to steal your medicines. you need support and a team. hospice can give you that. ((((hugs)))) |
Fiercegrrl, Zofran is wonderful! Use it to your advantage. I took it when I had my surgeries. It did wonders for nausea. Plus if you have hospice workers there with you, your mother cannot take your medicines. They will take that over first thing. Remember that hospice is a service. It is not giving up, honey. No No No. I will tell you what I told my sister when this service was offered to us. I said yes and she looked at me with huge brown eyes. I could tell what she was thinking - I was a nut in writing her off. That was the last thing on my mind. It meant that we would have backup giving us more time together. We would not have to worry about the little things in life that take our time up. Let them worry with that. If we wanted to sit outside on her shaded deck and enjoy the garden, and lawn, then we had the time to do so. Nobody knows the end. Nobody can tell you that. No doctor, no nurse. Get that thinking out of your head. You are on my mind, and in my prayers. Know that I love you dearly. Love and Peace, Drew |
There is a free magazine to anyone and everyone who wants it. It is called "Cure-Cancer Updates, Research, & Education". I was told about this by my late sister's oncologist. In fact, she told all of her patients & families, relatives, & friends to get it.
This is everything you need: 1. www.curetoday.com 2. call 1-800-210-cure (2873) 3. fax 214-367-3306 In the upcoming issues of Cure: -The latest advances in treating breast cancer -Health Care Reform -Energy Balance -Survivor Guilt -Finding a Professional Caregiver -Managing Depression Namaste, Drew |
Parade Magazine Article of Getting Rid of Medicines
Rosie came across this, and actually told me to post this article. It was in The Baltimore Sun's Parade Magazine July 4, 2010 issue. It basic states that leftover medicines safely is not about flushing them down the toilet or throwing them away in the trash. The National Community of Pharmacists Assoc. has launced a "Dispose My Meds" campaign. More than 800 communiity pharmicies in 40 states have signed on. It's easy to do. Find a partcipapating pharmacy and it will send them to a medical waste facility. Or you will get a postage paid envelope to use to mail everything direcly from your home. Some of the medicine and other medical supplies are also recycled for those who are in need. Go to DisposeMyMeds.org for details and to find a pharmacy near you. Namaste, Drew |
Two years ago yesterday, and I forgot all about it until I saw this thread. I guess that's a good sign, huh?
Prayers and hugs to everyone. :praying: Sue :floatbee: |
Cancer never ends. It takes so many loved ones. I am just so unprepared for what it has taught me. It takes my very breath away each and every time. |
Wanted to share this experience here, in case it may help
someone else out. You are your family members best advocate, especially if they cannot voice their issues or concerns at this time. If they've been told all avenues have been exhausted and the only road left is clinical trial. Know that if the doctors want to keep you on even low dose chemo, that can diqualify you from most trials. Ideally they like you to be on a rest period first then start your trial. When a cancer patient is already struggling with their diagnosis and the issues related to it, you the caregiver are their best advocate. A journal and planner have been my best friend throughout this fight. |
Candles for Milana
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Great advice Spirit Dancer. Information gets lost in the desire to just live and breathe. We take so much for granted. I need to write a story, and vent..so here goes. My friends life changed forever in a simple hospital visit yesterday. She has no family locally, lives alone and has 2 cats. So far, Radiation doctor wants to start treatment. Onchologist wants to start chemo. She had a portacath inserted last week. I took MB to the hospital yesterday to have a feeding tube inserted via a laparoscopy, and an expected overnight stay so they could teach her how to use it and observe her status. Due to breathing complications , she ended up in ICU on a ventilator as I type this. She has been going through testing for esophageal vs. lung cancer over the last 6 weeks, and has lost 30 pounds, because something was closing off her throat and she couldn't swallow. I was in the room when the Anesthesiologist and the Gasterenterologist interviewed her about what , when , where she had things done. She was totally dazed. Since I had taken her to the hospital/Dr. visits all over SO Cailf, I knew she had the PetScan, when the portacath was done, and when the thyroid biopsy came back adenocarcinoma. Docs. said "You seem to be having trouble breathing . She was indignant and said "You would be too, if you couldn't breathe or swallow, and you had this thing pushing on your throat.". They KNEW ahead of time. I told them she wasn't able to have an espghogram because they couldn't get even a pediatric size tube down her throat. She said "Oh yeah, I forgot about that" Well, the Surgeon came out to tell me the feeding tube was in and the surgery went well, and she would be in the recovery room and go to her room in about an hour, and they would call me on the surgical waiting room phone. 1.5 hours, I called recovery and was told she wasn't in there yet. I called again at 2 hours, 2 1/2 hours and the 3rd hour call , a nurse came out to tell me.. " There are complications. She isn't able to breathe on her own. Doctors are deciding if she needs a trach,needs to be put on a ventilator. Are you next of kin, a relative, or?/?." I was dazed, said no. and she said well, I can't tell you anymore . I called Milana's sister who lives in Northern CA to tell her the news, and she called me back to tell me they are taking Milana for a Cat scan to see the position of the tube, she is on a respirator, tied down, and sedated, and I am not permitted to see her since I am not a member of the family. She said she will call me with any news. Life changed for Milana at 3:30 PM yesterday, and for all her gay friends who are shut out. So, I just needed to vent.. Keep a journal for those that can't. I wish I had thought of that for Milana. |
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I so very sorry to read this, it is very unfortunate when we are not next of kin or have that wonderful advance directive or POA we are shut out. Clearly even in 2010 there needs to be more in place for those of us who are deemed "just a friend." Today I light candles for you all and send light your way. :vigil::praying: |
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MRSA and Cancer
MRSA and Cancer do not mix; the symptoms of MRSA will mimmick those that you commonly go through with Cancer tx. If you're ever in doubt and they've not run tests for infection ask, it can save your life or your loved ones life.
It's funny the body doesn't like foriegn objects such as picc lines and ports a wonderful place for MRSA to lay in wait and take over and can cause serious issues even death.: Defined by the Mayo Clinic Methicillin-resistant Staphylococcus aureus (MRSA) infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections. Most MRSA infections occur in people who have been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints. MRSA Death Numbers The vast majority (85%) of those with MRSA infections who had visited a hospital caught the infection or had it when they were not even hospitalized. It's estimated that in America, more people die of MRSa than die from AIDS. The Centers for Disease control came out with the report in 2007, stating that in 2005, 18,650 people died and 94,000 people caught the infection. In the same year, only 16,000 people had fallen victim and died from AIDS. Most cases of MRSA infection are considered harmless. The problem is when an open wound or weak immune systems is present, that the infection gains a fatal foothold. The other problem is that MRSA has continued to gain strength and mutate, so that when a person does catch it, it has become potent. In the mid-1970s, MRSA was only 2% of all staph infections recorded. Two decades, later the percentage climbed to 22% and another decadeafter that, the number was up to a staggering 63%. being proactive, when in doubt ask for blood cutures. |
Each time you send a cake, Electrolux will donate $1 to the Ovarian Cancer Research Fund.
http://www.kelly-confidential.com/index.html It will cost you only a minute or two of your time. Cheers for Queers! |
tonight i can't figure out why i should go tomorrow and get an infusion of a drug that will add some extra time to my life. i don't really have any reason to get up any more. my friends have mostly all run away. i have no job. i can't find the energy to do the things i like to do. things that would help bring in some money. driving my truck is now painful sinc ei have a manual and my joints all hurt. i just don't see why i should prolong this. kind of a sucky place to be in.
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Because you are alive, and it is in living that hope can be found. |
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i have to tell you that i am one of your biggest fans, and quietly cheer you on especially when I am in my worst of ways. the universe will take care of you if you take care of you. i know this for sure. please don't give up or in. your star shines bright and i need it here with me. xoxo cancergirl |
There comes a time when we don't fully comprehend
what our loved ones are feeling or thinking at certain times. As of late it feels like a twilight zone movie and no matter what I say it is the wrong words at not a good time. Being the Partner/ Caregiver/Advocate can really be a demanding roll especially when your partner feels you're siding with the doctors over them. It's a fine line we walk in assisting with decisions and being supportive as well. Now I find that keeping a separate journal with issues for the doctor to review and then the issues my partner has with the doctor, has helped me to better improve communications with both. Most important role for me is Hys partner and protector, the guard of the gate that will allow no harm, and if there is an issue the doctors answer to me. :fastdraq: |
Cancer Doesn't Knock, it just comes crashing in.
Spirit Dancer,
My heart goes out to you and yours. You must be in that proverbial rock and hard place. Keeping the separate lists sounds like a great idea. I found myself going around to the nurses station before I go see my friend Milana, and reviewing what has and has not happened. She put me down as #2 on her Advanced Directive, and # 1 to get and give info to the Doc's. I have been calling when not there, as my visits and or not visiting cause her to get into such a rage it became unhealthy for her for me to be there all the time. She is agitated all the time now, no matter which anti-anxiety meds they give her, and is lashing out to hit at the nurses, and at her sister and I. Found out last week Milana's path report in June was Stage 4 Lung Cancer, and we were told it was espophageal CA. She Still has not had chemo, or radiation treatments since the accidental trach event in July. She went from Acute Care hosp and is now in a nursing home. Next week she goes to UCI to have the PET Scan repeated, since they don't want to start radiation based on the scans done in May. Hopefully they will start treatment soon, as her. Wish we could find the magic elixir to wipe out this fucking disease. :moonstars:. Love to you all, Tommi |
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we do what we do; because it's in us. We take care of others and often we forget to breathe ourselves. Take time to smell the:rrose::praying: |
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Thanks, and backattcha ya know* Just sayin. http://www.davita.com/UploadedImages...rStress-th.jpg |
BuMpInG
http://i177.photobucket.com/albums/w...41209/HOPE.jpg http://i332.photobucket.com/albums/m...abob/Faith.jpg My Faith is larger than the Hills -- by Emily Dickinson My Faith is larger than the Hills -- So when the Hills decay -- My Faith must take the Purple Wheel To show the Sun the way -- 'Tis first He steps upon the Vane -- And then -- upon the Hill -- And then abroad the World He go To do His Golden Will -- And if His Yellow feet should miss -- The Bird would not arise -- The Flowers would slumber on their Stems -- No Bells have Paradise -- How dare I, therefore, stint a faith On which so vast depends -- Lest Firmament should fail for me -- The Rivet in the Bands |
this will be the first time I have spoken of this online, hell I don't talk about it much in person. I have stage 3a breat cancer. I have been batteling cancer of one type of another for a few years, first just benign tumors, then uterin cancer, after a hystorectomy I was good for a few years then one day there they where...3 lumps in my left breast.went it for a checkup, then the biopsys...then the 5 days wait...wich I think was the hardest part...then the news that changed everything. they wanna take my boobs, and I know that choosing between cancer and my clevage is a no brainer Im a girlfriend and a mother, but I love my clevage....I finally found a doc that will use my body fat for reconstruction...yayy! tummy tuck and new clevage! went in for per op stuff and my white blood cell count is in the 100,000, for those that don't know thats WAY more then it should be. So now I take pills and wait some more....
I, at first, felt like this was punishment for some awful thing I had done and then I thought about my life and I could't come up with one thing I had done that was that bad, I mean I know I am not perfect but jesus...I'm not that bad either. I made a bucket list...Everyone thoought that was funny, but what if they can't fix it, what if I die? I dont wanna go out feeling like I haven't done anything I wanted to...ya know...now I live in a new place, and I don't have a lot of adult friends...that sucks more cause I feel the depression...So I am seeking new peoples to relate with, people inside and outside my community to laugh with and talk about stuff other then cancer, but I guess I have to talk about this stuff too:hangloose: |
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We are here for you(f) Don't Quit When things go wrong as they sometimes will, When the road you're trudging seems all uphill When the funds are low and the debts are high, And you want to smile, but you have to sigh, When care is pressing you down a bit -- Rest if you must, but don't quit. ife is strange with its twists and turns, As every one of us sometimes learns, And many a fellow turns about When he might have won had he stuck it out. Don't give up though the pace seems slow -- You may succeed with another blow. ften the goal is nearer than It seems to a fair and faltering man, Often the struggler has given up When he might have captured the victor's cup, And he learned too late when night came down, How close he was to the golden crown. uccess is failure turned inside out -- The silver tint of the clouds of doubt, And you never can tell how close you are, It may be near when it seems afar, So stick to the fight when you're hardest hit, -- It's when things seem worst that you mustn't quit. -- Author Unknown -- |
It doesn't knock
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Hi there.. Well, if you were close by, we could chat about that Club we became members of without even asking. That one that makes you realize your mortality, and that makes every day matter. And it's scary. Have you researched ALL your options? Looked for Clinical Studies in your neighborhood. I signed up for one after being diagnosed with Uterine cancer almost 7 years ago. If there is anythiong I can do, holler, write, scream, send smoke signals, or PM me. My email addy is in my profile. This is from NIH.gov website. Stage IIIA (operable) Modified radical mastectomy or radical mastectomy with either radiation or chemotherapy. Radiation could be preoperative external beam radiation or postoperative external beam radiation with a booster dose to primary site. Chemotherapy could be CMF, CA, CAF, CMFP, CMFVP, L-PAM and 5-FU with or without tamoxifen. Here is a link to look at what's new and what's going on in the research and clinical trials. http://www.cancer.gov/clinicaltrials...archid=8960422 So, stay in touch. and PS: I'm glad you are going through with the mastectomy, with or without the reconstruction, the cancer needs to go. Bang Bang:fastdraq: |
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Last week I had my last chemo treatment for Stage 3a colon cancer. I had surgery in early August and then had chemo starting a month later every other week (along with a chemo pump for 48 hours after each infusion). I tend to be a person who researches the heck out of the smallest of things when making a decision (for example, when buying a new camera), but this was the one time I chose not to. I was concerned that I would become overwhelmed with the information I found and I was worried that I would get the wrong information. You have been down this road before, so you probably know a lot already and know what you want to know and don't want to know, so that is a good thing. I found that I wanted to know little about the surgery, but a lot about the chemo treatments. Fortunately, I chose a surgeon who didn't talk, but found a chatty oncologist. Let your doctors know what you need and the pace you want to receive information. I live in an area that has one of the highest cancer rates in the nation. I am considering moving even though I have lived here my whole life. Although I believe that nutrition, exercise, and in some cases heredity, impacts one's chances of getting cancer, I believe the environment does, as well. Hopefully, someone who has had breast cancer will come in here or PM you. However, if you want some additional support from someone else who has had to deal with cancer (although not the same type), please don't hesitate to PM me. Seriously. Anytime. Take care of yourself. |
So I have been away from the site for a few months now. My ex was dx with this in Sept. 1 week later was starting chemo and the 1st day of chemo she found out it had already spread...3 spots in her L5 1 in her hip and 1 in her femur. She in the beginning pushed me away then she wanted me there to take care of her and our house and animals we have together. I am the 1 she screams at...fusses with etc. I feel like I am CONSTANTLY on an emotional rollercoaster to the point of starting therapy next week :(
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One Day At A Time
Cancer doesn't call to see if your busy and have anything planned
Cancer doesn't care that you have other plans. Cancer doesn't knock, it just comes crashing through the walls of your sanity. and then...it disappears. Or does it. Morbid thoughts before a pre-op at 3:30. Raw feelings..me with feelings, wanting to see the sunrise, and hold my tigger while she purrs, and rub Peaches boy till he goes to sleep, and smell the roses. To hear the voices of loved ones near and far that I have failed to call and touch base with. Wanting to plant that 7th rose bush on May 15th. Wanting quiet in my mind. Wanting everyone to be okay. Just for today. I'll deal with tomorrow when it gets here. .:bunchflowers: |
Blessings and Strength
http://i201.photobucket.com/albums/a...t/DSC02256.jpg A Time To Believe To believe is to know that every day is a new beginning. It is to trust that miracles happen, and dreams really do come true. To believe is to see angels dancing among the clouds To know the wonder of a stardust sky and the wisdom of the man in the moon. To believe is to know the value of a nurturing heart, The innocence of a child's eyes and the beauty of an aging hand, for it is through their teachings we learn to love. To believe is to find the strength and courage that lies within us. When it is time to pick up the pieces and begin again. To believe is to know we are not alone, That life is a gift and this is our time to cherish it. To believe is to know that wonderful surprises are just waiting to happen, And all our hopes and dreams are within reach. "If only we believe" Author Unknown |
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Yes, it is understandable that her fear and anxiety may result in irritability, but that doesn't mean that she shouldn't acknowledge it or keep it in check. As a side note, I know that the steroids in my chemo treatment (5FU) causes some BIG TIME irritability in me. My point is, her irritability is not just about having a serious illness, it is also chemically induced. I worked almost full time (72 hours every two weeks). I had been only taking a half day on chemo infusion days, but after noting I was irritable with coworkers, I decided I needed to take the whole day off. In general, I was kind of whacky. In fact, I screwed up and wrote something in a work email that I shouldn't have during that time (and never would have if I was in my "right mind"). There were some repercussions due to it. My point is, understand her emotional state, but don't excuse her behavior. Therapy may be helpful to her. Some cancer centers have therapists trained in working with people who have cancer. Also, there may be some free support group there, as well. At minimum, it may help her to get on some support groups/forums online to talk with others who have the same illness. I know that you and my partner have been PMming, but if you want to talk to someone who went through cancer treatment, please don't hesitate to PM me, as well. I would also be happy talk with your ex via email if she is not on this site. It is a very tough road to travel. For both of you. Take care of yourself. |
Rosie and I are asking for prayers for her one and only sister. She has Barrett's Disease. In fact, she has had this for a number of years, and it has just gotten worse over time. Medicine no longer works, and surgery is a 50/50%. However, she is highly allergic to most anethiesthics (sp?), which decreases her survival rate. We are hoping for surgery in August, but that too is up in the air. She has a tumor growing around her voice box and vocal cords. It is a bad situation no matter how you look at it. Thanks. |
Reminding those that believe., and those that don't. Know what it is all about.
~ If only we believe~ Cherishing today. Thanks SD..
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Just thought I would read, and resend strength and courage from my heart to yours. Hope today is full of sunshine for those in the dark, and warmth for those that are indoors, If only we belive |
Finally got my chemo port out yesterday! Nice to have that reminder, gone!
Soon I will have another colonoscopy and then I will feel completely in the clear! :thumbsup: |
Congratulations Dap. Having lost My Dad to cancer.. and watched My Mom fight and beat breast cancer.. I know this must be a huge relief.. and victory for you. I hope you continue to regain your health.. and remain cancer free. smiles.
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One to Another
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Hey DapperButch, Having that chemo port out must be a reason to Celebrate...:wine: My friend Milana heads to surgery for her second one in on Monday. Infection at 1st port site, and she has only 3 more sessions. Every day is such an adventure, and your upcoming colonoscopy is one of the favorite things you can do, and I KNOW YOU WILL BE THRILLED WHEN IT IS OVER.. :vigil: Had mine several weeks ago, and got the best report. Doc said "Your colon is boring. See you in 5 years." So, keeping my fingers crossed that all the tests, MRI, US, lab work over the last month match the negative colonoscopy results. |
DapperButch, a question about your chemo port...did you ever consider leaving it in or was it a no brainer for you as far as having it removed? My thinking is that it's yet another surgery. :(
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It was a really simple surgery. They don't put you under like they do when getting it inserted. My doc just gave me a local, cut me about 1.5 inches, and then popped it out. Easy peasy. I asked to look at it b/c I was curious. It just looked like a large tadpole! And there really isn't much pain afterwards, either. I had some serious pain for a few days when they put it in b/c they have to push and pull on the muscle, but no pain really after it came out. I don't think I even took a Tylenol. ETA: It is funny that someone posted on this thread today. I have my colonoscopy tomorrow...so I going through the "prep" right now. sucks ass. no pun intended. |
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Positive thoughts for tomorrow's "butt T.V." Oh, how I loathe bowl prepping! :goodluck: |
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If you have any more questions/need support, feel free to PM me! |
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