No treatments for me.
Comments
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Bren,
If your friend is not trying for a cure anymore(even if she's having chemo or rads for pain control) and is needing better pain control she might want to talk to someone in a hospice near her home. They aren't just for the very end of life, they are great at dealing with pain, she doesn't have to be dieing right now to call and talk to them. I know a lot of people are afraid to have that conversation but if you know enough about what's going on with her you could even make the call to them and just tell them that you and her have some questions. I was on hospice and was not doing very well...I was told that in the condition I was in then that I only had a few months left. Hospice made me better by coming to my home and doing whatever possible to make me feel better. Hospice can give whatever pain meds they feel are necessary. She can have her IV Dilauded at home if a hospice Dr wants her on it. I know that because I was on it. We are in different states though so you might also ask hospice if they would be OK with giving that to her(not if they normally give it but if they are able) if they saw that she needed it. I think you and her will both be very suprised at what they are willing and able to do. Regular Drs have much stricter guidelines when it comes to the heavy pain meds. I hope she will agree to just have someone come and speak with her about it. They came to me in the hospital within an hour of me asking about hospice. A phone call can change a lot. I hope she finds a way to deal with the pain soon, I know what it can do to you.
I'm having another surgery. I met with my surgeon yesterday and he said that because the tumor is causing me pain and as it bets bigger it will keep me from being able to walk on my crutches that he thinks it's a good idea to try to remove it. He made a point of telling me that this would not slow down my cancer at all but it is important to keep me moving. There is a chance that I might go through this and wake up with it if he thinks that he would cause any more damage to my body, and I agreed that if it looked like there would be major problems with removing it then I wanted him to leave it there and close me back up. He wanted to do this out-patient however I was able to convince him that at least one night in the hospital would be a good idea. I told him that I usually wake up from surgery screaming in pain and that I just wanted to make sure that was under control before being sent home. He was a very personable man and after I spoke with him I was sure that he understood what I wanted and was going to be a good choice for me. I don't usually trust surgeons but this one was not in a hurry to cut me open unless I was sure that this would give me some relief. I liked that.
cin
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Hi Cindy
It's Lorna here. I hope you have been feeling well lately. I had to have some more surgery - for clear margins and it looks like my left breast is getting smaller all the time. I sure hepe the surgeon got enough this time! He still tells me its a good prognosis so Im happy to believe him. I hope you are not in too much pain and I pray for you every day and for your dear husband Rick. I feel so much for all your suffering so sick so young. You are so much younger than me, I'm 59 and I'm the one who gets the good prognosis! As you americans say - go figure!
It's late here, I'm tired after my surgery yesterday and going to bed.
Love, Lorna
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Just a quick note to let you all know I am thinking of you and hoping you are having more good hours than bad. I had wide excision of new recurrence on Monday, had postoperative check today. Healing well, and path report was clean margins! There was microscopic disease in center, but wide clean margins. BS again suggested rads, but also indicated the surgery itself was potentially "curative" at this time. I know my team would be happier if I chose rads, but they can't guarantee it would change my risk of further recurrence or mets all that much, so I am hoping to be in the 70 percent that have no further recurrence. And rads is still available in case of future recurrence.
I am so very much at peace with this. Every time I think about rads I feel agitated, anxious, depressed, tearful, fearful - think I am much more likely to die sooner if I do that now, more likely to live longer without rads. When I accept that there is still a lot of risk if I don't do rads, I am still at peace.
Having you all here is such a blessing. Thank you, and hoping for a good weekend for all of you. Much love.0 -
Linda - I am in the same place. At peace with where I am.
LOVEEssa
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Hi Cyn,
Thanks for thinking of Brenda and taking the time to write. I have spoken to her about palliative care to help manage her pain. She has looked into hospice in her area ... North Carolina ... but is not ready yet. She was in the hospital all last week trying to get her pain under control, so she missed the appointment that had been set up with the palliative care group. She is now on long-acting morphine and also regular morphine for breakthrough pain. Today she sees a pain specialist ... so I'm hoping they can do something to give her some relief of the back pain.
When is your surgery scheduled? I'm sending best wishes that it helps with your pain.
hugs,
Bren
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I just came home from a week in the hospital after being told I now have a PE but I'm refusing treatment for that too. I'll write more another time when I'm not so tired and in pain. I just didn't want anyone to think that I had dropped off the planet.
All my love to everyone,
cin
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Hi Cindy, did you go to hospital for the pain or was it surgery? PE, i had one session and nearly hit the woman as it hurt so much. Are you on morphine? have to say it worked well for me i was off my face when i had it. How is your son and girlfriend? happy times for you and them.
Went to yoga again and only did what i could but boy do i ache now.
sending you lots of love and pain free days
xx
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Hey Ali,
I had to go to the hospital in an ambulance because I was having chest pain and in the er they found that I have a pulmonary embolism (blood clot in my lungs) and kept me in the hospital for the past week. They wanted to keep me there and send me straight into inpatient hospice but I made them discharge me from the hospital and I just came home. It hurts pretty bad still but I refused blood thinners because they were causing me other problems. Kind of a damned if I do and damned if I don't type of thing. The Dr in the hospital was trying to talk me into taking the blood thinners and told me that I could die if I develop another clot and I told him that considering that dieing from breast cancer would be slow and painful that a quick sudden death from a blood clot didn't sound like a bad way to go. He agreed with me after that. I'm doing alright with just taking my pain meds but I did come home to find that someone ate all my M&Ms. I'm sorry that you didn't feel well after yoga, hopefully it's just a matter of getting used to doing it and then it will help you feel better. I do take mscontin which is a long acting morphine as well as vicodin and muscle relaxers...most of the time it works very well.
All my love,
cin
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Cin .. I'm glad you're home from the hospital ... and I hope you're not in too much pain from the pulmonary embolism. I'm glad you were discharged home, but not happy to hear that somebody ate your M&M's! arghh!
My friend Brenda takes the long-acting morphine too. She also takes the short-acting type for breakthrough pain as well as Ativan. Does the morphine make you kind of sleepy? It makes her sleepy, but she's only been on it for a week, so maybe her body is still getting used to it.
hugs,
Bren
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Bren,
All pain meds in pill form make me hyper and shaky, but the same meds in IV form do make me sleepy and I have no clue why. I only take the morphine in the morning or I can't sleep for a few days even if I take my sleeping pills. It was a huge shock to come home to no M&Ms so my DH is at the store as we speak to fix this problem. If your friend calls the palliative care people they should be able to send someone to her. I really hope that she finds a way to stay comfortable, I don't know what I would do if I couldn't control the majority of my pain. It can take a toll on your spirit as well as your body. If she isn't ready for hospice yet then I agree that she should wait until she is ready. Sometimes people see it as giving up on life...I don't, I see it as trying to live as pain free for as long as possible so that I can continue to do things that make me happy. That's why I have gone on and off hospice a few times. It looks like I may be going on again soon but it's such a personal decision that I think people should only do it if they believe that that's what is right for them. She has a great friend in you.
All my love to you and Brenda,
cin
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Cindy I am keeping you in my thoughts. Drat those M&Ms! Here are some to keep you company:
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Athena,
That's the bestest gift ever!!! He should be home any minute with them so I'll just leave this on my screen till he gets here. Thank you so much for the thought.
All my love,
cin
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Hmm wonder why they dont make purple m and m's....
Dear Mrs Cinch...
You are beautiful... sharing your path with us, is priceless. Knowing that you have taken control of your life.. means so much to me.
Shaving my head seems to be the only thing "i decided" ... you inspire me to look for other oppurtunities.
I see so much life force around you... your energy is clean and clear.. even tho you are on all those meds..
Thank you
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Celine,
They do have purple M&Ms but you have to order them straight from the factory and it costs a lot more...now if they were to come with a gold bracelet or something it might be worth the money but I have to admit that the special color M&Ms are way overpriced. I have received gifts of M&Ms that I felt guilty for eating because of what they cost but because I am addicted to M&Ms I couldn't just let them sit there...and they were delicious!
Good for you for shaving your head, I love to hear when people take the initiative to do things on their own terms. It always gives me a little giggle to see the look on Drs faces when I tell them how things will go with me. They seem surprised that I have an opinion at all. I highly suggest screwing with Drs every once in a while...it's a great mood picker-upper.
cin
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It might also make them think twice before giving us some of the advice they dole out - lol.
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i got my port yesterday... asked about the emla cream..
my pivot nurse said the docs in usa over perscribe it bcause big pharma is their god..
but that here its goverment run so they dont use it unless they have to.. and to be honest it didnt hurt at all to have it hooked up
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Celine,
Ports are a beautiful invention...I don't know what I would do without mine. I'm very happy to hear that it didn't hurt you...your pivot nurse was right about some things being over perscribed.
cin
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Just popping in to say hello and let you know I (a newbie
) have learned so much from reading this thread.0 -
I am beginning to wonder how much I am influenced by the overall attitude of my MO regarding further treatment. I have been so unhappy with the evidence-based approach vs. the patient-centered approach, ignoring my own values, not paying attention to the fact that the chemo was poisoning me so badly that my quality of life has deteriorated, and not addressing a whole host of other issues. I know I do not trust her to give me any more meds. I wonder if changing MO to one who embraces integrative health concepts and a more wholistic approach might enable me to agree to any further therapy. In theory, it is possible that I have long life ahead of me, especially if I agree to more medical and/or rads, neither of which I can do with my current mental health and personal values. Just some thoughts that entered my brain today.
Hope today finds you all safe, as comfortable as possible, and at peace.0 -
Cindy-Rose
I think we all have to make decisions that are best for ourselves. But it is always very hard on the families as they usually think we should keep trying.
I was jam packed with cancer when they found it-the tumors in my lymph nodes are bigger than most woman get in their breast and the tumor in my breast was huge i also had cancer leaking out into my tissues. I have been trying treatment options hoping for a miracle and will continue to fight as long as they give me the tinyest glimmer of hope even for time.I am a Mom i still have a son in public school who still needs me greatly.
But if or when it gets to the point i feel i am not going to benefit in any way from treatment i would definately like to step out of this world gracefully. I think thats a choice we should all have a right to.
I wish you the best with the rest of your journey i hope you go through very little pain or discomfort. You sound like you are okay with your choices that is what i think matters the most.
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I'm sorry that I've been away but I have my daughter having medical problems now and I've been staying in the hospital with her for most of the past week. I'll definately write more when I get home for good, right now I have a few hours to sleep while one of her friends is there with her. I needed a break bad!
Hope all is well and I'll write soon, All my love to everyone,
cin
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Cin, many prayers for your daughter and you. May you have rest and peace today.
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dear MrsCinch...
your care and love shine thru your words
my thoughts r with you and yours
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Cin - I am so sorry to hear about your daughter. I hope she gets well soon.
Linda-n3: I think most cancer treatment today is obsessed with getting rid of tumors and not really balancing out the patient's needs. They honestly don't seem to care if you almost drop dead so long as you do the recommended therapy - which doesn't really work in many cases. I have a co-morbidity and if I didn't put my foot down and curb cancer therapy, I'd be de4ad from that one.
Cancer has been put on an irrational pedestal. As a result, doctors and patients are scared into trying near useless chemicals that risk destroying the body. Such is the hysteria that people convince themselves that these near useless medicines are worth it. Even if they ruin their health and leave them maimed for life. Cancer is set us as the bogeyman. To me, the real bogeyman is blindness over treatment that leads to a false sense of security and even smugness amongst some people..
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First, I want everyone to know that I very much appreciate the well wishes. I'm back home now and after the problems with getting my daughter healthy again I'm completely wiped out. I explained it all on my blog if you want the details, but I wanted everyone to know that I'm doing OK and I ended up canceling the excision surgery. I don't know if I want to reschedule it or not yet.
Athena,
I agree with you that it seems like an assembly line of treatments once there is a cancer diagnosis. Patients don't seem to be asking enough questions and doctors don't seem to be treating everyone as individuals. Chemo can and sometimes does kill the patient not just the cancer. I'm still afraid of what another surgery would do to my already wrecked body, which makes me leery of trying to have anymore tumors removed. I honestly don't know if it would be better to just leave the cancer alone and do my best to work on my over-all health so that I'm able to enjoy what time I do have...no matter how long that is.
cin
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Hi Cindy, glad you and Jess are home and you can chill for a few days.
Sending you rest, laughter and warm sunny days.
Your friend
Ali xx0 -
Ali,
Thank you. We are both trying to get back to normal so I let her take my car out last night to see her friends. While she was gone Rick went to thew mailbox and brought me a letter from a near bye police station. It was my daughter speeding in my car. i had to laugh because now things like that seem so minor. Hope your kids are doing well...and you too.
All my love, cin
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Cin, thinking of you today. I am so glad your daughter made it through her ordeal and is feeling better. Adults seem to have such a rough time with pain after tonsillectomy - I have heard many adults say they had no idea before surgery what the pain was going to be like, and the docs just don't seem to recognize it as "real" and needing aggressive treatment.
How much surgery does the excision involve? I think you mentioned lymph nodes and nearby nerves.... I had wide excision of local recurrence 3 weeks ago, and had MAC (just IV meds, not general anesthesia) and was able to come home within a couple hours of waking up. I had exacerbation of all my pain and pain in BMX scars because I was guarding a lot, but got in to see PT for myofascial release and pain has decreased by more than 50% after first treatment, back to nearly baseline after 3rd treatment. Pleasant surprise considering how miserable I was the first 2 weeks after surgery. And it seemed like such a "minor" procedure - just a small incision was all you could see, but I know there was more to it than that - and I was grateful that my BS is now taking me seriously and helping with the pain issues. And the interesting thing is that after the excision (which she got "clear margins") and improved pain, I am the most hopeful that I have been in over 2 years that I MIGHT have a few good years left and I need to do all I can to enjoy that time. And if I don't have that much time, I am still going to do the best I can to use the time wisely.
Blessings to all of you today.0 -
((((Cindy)))) You and your family have been through so much. I just wish you could all get a rest. I am also confident that you will make the wisest decision for you regarding the surgery. There never is a "right" or "wrong" answer.
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Linda,
My surgeon is only talking about taking the tumor it's self and nothing around it. He was leary of even doing that much because he is concerned that he'll just make it spread faster if he tries to take it out. The pain afterwords was and is a huge concern for me because pain is the only reason that I'm even thinking about taking it out. I wish I knew for sure if it was going to make things any better, then it wouldn't be so hard to decide.
Athena,
Yes, my family seems to have everything go wrong that possibly can go wrong. I'm just so used to it now that it seems normal to me.
cin
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