STEAM ROOM FOR ANGER
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Does anyone else wait three weeks for scan results? I had a Pet/CT last Tues. and I know I have to wait at least a week for my MO to have them. I called this AM (after two other unsuccessful unrelated phone calls) and the person who answered said we usually do that at your next office visit. That would be May 28. Many times I've waited because it usually takes me longer to get in for the scan. This time, the scan was sooner after my last MO visit so we're talking three weeks. That's too long, even for me. I hate it when the person on the phone acts like this is my first rodeo. I've been doing this for three years and I KNOW what the usual process is. I'm asking for results now. Is that so hard to understand? I asked her if she would want to wait three weeks. I'll be talking to MO about the people who answer the phone and maybe educating them better. And runor, I know, in Canada you wait MUCH longer and I shouldn't complain but I am.
Lita, I never would have made it through one shouting match. I don't do them, ever. She would not be my friend already. Maybe that's why I have very few friends. And you know the story of my son and his wife's $700,000 1024 sq foot house in San Jose. Real estate of any kind in that area is RIDICULOUS. Does she not know that? Maybe she wants you to kick your DD out so she can move in.
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I would not waste my energy on a shouting match with Friend or Foe.
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Very funny, runor!
But I can't make up a fiction. DD WAS A PLANNED pregnancy. Waited a long time, was 35 when I had her, etc. Just gonna stick with the terms and conditions and tell her mind her own damn beeswax.
L
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Lita, it really sparked an outrage for me. Maybe our homeless situation or people in severe debt crisis wouldn't be so bad if families took care of each other. I think it is stupid for "friends" to tell you what you should do. I have heard so many stories about getting kicked out at age 18 to fend for yourself, why did they have the kids in the first place? Makes me angry. And for you Lita you probably want your daughter with you, close to you. I would. I am not at immediate risk of death but it is likely I might not see age 75 or 80, time is precious.
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Jaycee-- I do think we are soul mates. YES waiting 3 weeks is too long for the results. I think the MO offices get too busy and lose the human perspective. They would not want to be in our shoes and have to wait on pins and needles for the results. They need to be reminded that they are dealing with human lives. I would MAKE them tell me the results NOW. How about going to the Medical Records Dept and signing for the results to be turned over to you? That is what I do. I get my labs, CT's, etc done at my local hospital and then I go to Medical Records after a few days and sign a release and the receptionist hands me the typed report. Perfectly legal. The MO might not like it, but oh well. My body, my results.
Keep us informed.
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One of the reasons I chose Swedish Medical for my treatmemt is the way they treat cancer patients. My oncologist works very long hours goes to all the last symposiums and it seems like he is always available when I call. Also when I had my mastectomy I was put in a wonderful hospital room with a sweeping view of Seattle and puget sound 10th floor I think. The nurses were so good to me. My breast surgeon said the best facilities and care for cancer patients.
I'll never forget I had a scare on my MRI and they booked me asap for biopsy. I had the biopsy wednesday midday and that friday night at 7:30pm my mo called to say everything was fine. I remember the next Monday morning the radiologist called to tell me good news. I told her, oh my doctor called Friday to tell me. She said yep he is the best.
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Medical Records is in a really hard place to get to at my hospital and I don't want to make an extra trip down there. Pet scan results are not posted on the portal either. I first thought that results that need MO discussion are not posted but then I remembered that my BIOPSY SHOWING METS was posted. What a stupid contradiction. I almost wish I hadn't called and just waited. Now I have to sit on my phone and make sure it is charged all the time. She may not even call since it is Friday. I forgot it was Friday.
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Meow-- You are very lucky indeed!!!! I like my MO But she is a mom of 3 young kids and someone who knows her told me "she is a mom first and a doctor second". I think that it is right and good that she cares for her family first, but as a cancer patient receiving care from her I am selfish. When we talked about scheduling my last CT, she told me if there was anything new she would call me. I went to the office visit a couple of weeks after the scan (I had gotten the results 3 or 4 days after the scan from Medical Records) I found out she had gotten back into town from a family vacation the night before. My scan was good, but what if it had not been good. She was out of town and I am sure did not see the results until that morning. I don't know what it will be like if I need her on her after hours. And I know she works 3-day weeks in the office.
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Jaycee---So sorry they are making you anxious. Yes, you need to talk with the MO about the office staff and how they handle these situations. I have the Patient Portal also. I was told that the ordering physician clicks some button to release the results to the Portal. If they don't go to the Portal either it is because the doc doesn't want the patient to see the results before they get to talk with them or simply a mistake in that they didn't click the button. I hope you hear from them soon.
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Jaycee49, I have just the opposite situation. My PET scan results were posted (I think after I'd been told the results), but I had a follow-up biopsy on April 30 and I won't get the results until an appointment next Friday, the 24th. Nothing posted except the actual procedure, no pathology results. WAAAAY too long; I'll have an ulcer by then. I think I'll call and see if I can get the results by phone.
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Jaycee I had to get an EEG on the 2nd and still have no results from that one. My PET though got posted after a week on the portal. Our hospital system does not release to patients unless the doctor "releases" them to you. I don't know about yours but it may be similar. Ours has the policy listed on the website where you log in to the portal.
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Rants for the day:
I'm still fuming about a comment a co-worker made about those who don't go into work while fighting cancer or another such disease …. "What, are you going to sit at home and feel sorry for yourself?"
Guess what - I'm home on medical leave while on chemo. NO I'm not sitting around feeling "sorry" for myself. I'm home trying to HEAL myself, stay away from stress and the long commute plus avoid the endless co-workers who go into work sick as dogs because they can't or won't take a sick day off.
2nd rant - Support groups that go off the rails
I've been attending a weekly support group that had a schedule of topics per session. Last week one member declared that they didn't want to discuss the topic for the evening (post-treatment). So instead they began a TWO HOUR session of their own. This person brought several bags of items, everything from books, their latest headcover purchases to a nearly used up bottle of their facial moisturizer for all to try out (kid you not). Plus they dumped their emotional and physical issues on the rest of us for good measure.
I get it, everyone has their way of coping. I also get that some subjects may be difficult to discuss but they have to be dealt with at some point. However, my time as well as everyone else's is precious now. I want and need information to help me now and in the future. That is the point of the support group I'm attending. We are to learn and discuss a topic for the evening. I don't want to spend two hours listening to one person talk about themselves after they derailed the meeting. The person who is suppose to run the meeting didn't even bother to try and stop it. It left me drained and angry.
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Jaycee, yes we wait long times for appointments and results. Don't kid yourself, we complain like hell. My new doc actually phones me right away with results and this is NEW, and the first time he called and said 'I have your test results', I almost had a heart attack, I was so sure that a phone call ( so out of the ordinary) was because the news was dire. Waiting is agony.
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I have a PET scan planned for June 7th. I was to meet with my MO on June 11th for the results. The center called and the MO has a meeting that morning. Would I mind meeting with the PA? I agreed. Then I thought about it for a day and changed my mind. When I call the center they tell me the MO is really booked and then leaves for a 10 day vacation. I can either wait for him to get back or meet with the PA. So the choice is I wait nearly a month or get the results from the PA. A treatment change depends on the results of the PET scan. I find it frustrating that the MO does not check his calendar prior to ordering tests. The portal is a joke. It will list blood test results, but nothing else. You cannot even send an email for any reason.
I will keep the appointment with the PA because I do not want to wait to hear about progression. Then I will have to wait for the doctor should we get to change treatment protocol. Wish I could take a vacation from MBC
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JCSLibrarian----YES !!!! A VACATION FROM MBC !!!!!!
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MO just called, after 5 PM here. I called them at 8 AM this morning. But I'm glad she called. Very tiny progression, not enough to change tx. My portal only posts things done in a LAB. Blood work, biopsies.
JCSlib, yes, changing tx is the key. I like the one I am on. Nothing else sounds appealing. I would meet with the PA but I always get another MO in the practice when mine is out.
My stomach is currently unknotting.
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CreatureKeeper:
I was impressed that your support group actually met weekly and had scheduled topics. The one I attended (monthly) would periodically have a guest speaker but it was like a free for all on most nights. There was a certain core group that did seem to monopolize the conversations. The two SW in charge could usually rope them back in bit being a new member I felt like I had to pledge a sorority to be included.
Could you address this "takeover" with the organizers so the group could remain on topic? Your description reminded me of "show and tell" like in kindergarten and I was completely "yucked" about trying someone's moisturizer. How unsanitary and in a group where some might be immunocompromised. Hope you can get back on track at the next meeting.
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betrayal- I traveled for work throughout chemo and radiation. I never hesitated to borrow my friends or sisters moisturizer. If I had any open sores or if they had open sores it would have been a different story. I never would use a stranger's moisturizer. I do think it's icky for any person to bring a single moisturizing lotion and offer to share the lotion amongst the group.
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Yeah the moisturizer thing sent me over the edge. It was close to empty and looked like one someone would have around for years in the back of their medicine cabinet. I didn't even want to touch the bottle.
If I get to the meeting location early enough I will speak with the leader about staying on topic. We only have a couple sessions left and want to hear about the subjects scheduled. Our group is for newly diagnosed patients and intended to provide us with info most new patients ask about and need. It was going along well until this last session.
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For all people, one question. Do they add to my life in a good way? Is it enough if there are issues? If not, bye.
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rosabella- interesting. I believe we all have issues and we expect a certain amount of Tolerance and support from friends and family. I also believe if the issues are always there and it's always the main focus of any discussion then one might want to explore the purpose of the friendship. Do we maintain the friendship out of longevity? Familiarity? Or we like the drama? I always ask myself when the negatives consistently outweigh the positives then one needs to take a very close look at the relationship. Thank you so much for the food for thought
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I have just caught up and you make me laugh cry and want a like button!
I have to comment on the adult children living at home. Our son is an artist and had been supporting himself working as a support worker for addicts in a big city. He crashed and burned and Developed PTSD. We literally packed him up and brought him home. Little did we know that a few months later I would be diagnosed with a recurrence and he would be a major support For me.
I had to leave a support group too because I felt a big loss of confidentiality. So appreciate everyone here!
I get distancing oneself from some friends. Had to do it myself for my own preservation. People can be so disappointing!
I also relate to the you are lucky crap! My recurrence was diagnosed at the same time as two friends who were not so lucky, both have died in the past year. So I have survivors guilt and yet find it hard to come to terms with what I have been through. I know it is not as bad as a lot of people's but still it has been tough for me. So we can never discount others experience or our own's. I also was disappointed in my counsellor who thought I was over concerned about losing my breast. Well honey.....
Saw my MO this week and asked some questions about recurrence and she asked if I was spending all my time thinking about it! Not! But? Is it not front and center when one Isdealing with This?
Also upset about my severe bone loss in a short time span, that shouldn't have happened yet! Thank God for my PCP who ordered the bone scan or who knows how much more I would have lost!
Thanks for being here! Sending good thoughts to all!
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bennybear:
Thanks for dropping in and sharing your story. I, too, tried a psychologist who was very sweet but could not identify with the needs of someone with BC. I do think the definition that runor provided of sadness vs depression helped me define my experience. I was sad and having adjustment issues due to the dx, but was labeled "depressed" because the reimbursement was better. I do think we all have moments of depression related to this beast and do not think it necessarily is unwarranted.
The last straw was when it was suggested that I take "antidepressants". The rationale was "it would suppress my feelings". Now, I am not knocking antidepressants nor their use since they do serve a real purpose for many. However, I did not want to suppress my feelings because they were real as was my dx. I needed to rant and that was not happening. Finally, it was the lack of understanding and paying for lousy advice that made me terminate the relationship.
I do wish we were assigned a counselor at the time of dx that could identify with our experiences and to help us smooth the rough edges. Sadly, this is the one area of health care that is underfunded and/or downplayed.
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Welp.... it's been a week of crying on and off like some Zombie who has lost her brain and cannot make sense of up or down. I haven't driven yet, since he passed. I can't think straight. My mind races with a reality I already hated, now i hate it more, knowing the grim reaper Is circling my family. My life basically has turned to absolute shit since my diagnosis. I just get to sit and watch the carnage unfold .Sometimes it's just too much. Like walking through tar knee deep. Impossible!! 😡
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Betrayal, my 22 yr old daughter went to the clinic at college because she was tired and feeling down. They gave her a depression questionnaire to fill out.
After meeting with the Dr she was diagnosed with mono, but was questioned about the answers she provided and told them about my BC. The Dr immediately wanted to prescribe antidepressants. Thankfully she called me and I told her not to do anything till she's home for the summer and can see our family Dr. I think some have a tendency to prescribe antidepressants before looking into other aspects. I mean the kid has mono!
Anyway, she graduated and is home for the summer and feeling better. I think she needed to see I'm ok on a daily basis. She also has a tendency to internalize her feelings. I'm going to work on that this summer. It'll be a good distraction for me too.
As for sadness, I completely get that. My daughter graduated Saturday and it was the first time I felt normal since pre chemo but getting back to the hotel after a long day of festivities and taking my wig and makeup off, looking at the person in the mirror was the sad reminder nothing now is normal and won't be for a long time. The sadness can be overwhelming at times.
Best to you.
Dawn
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When I first met with my MO after diagnosis, I asked about if the center had a counselor should I need to talk with someone. He acted surprised, but said no. There was a counselor they could recommend, but no one on staff. Seems odd to me that a center working daily with persons diagnosed with an end of life disease and they have no counselor to assist with feelings. While I try not to be overwhelmed knowing I could easily reach out to someone would be nice. They do have a social worker, but that is not the same thing. There is also a support group. I am not thrilled with either alternative. Guess when the time comes I can find someone on my own. Having this forum has been great for me so far. Lots of information and support when needed.
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I'm really feeling hurt by all the comments that support the stereotypical misunderstanding about depression and antidepressants. I've been taking an antidepressant for 20 years. I've been seeing a psychotherapist off and on for that same period. Your comments are making me feel like you think there is something WRONG with that. There's not. Whatever provider said that antidepressants suppress your feelings was misinformed. Choosing an antidepressant is very complex and requires a psychiatrist or specially trained psychotherapist, which my therapist is. I don't think we should reinforce the stigma prevalent in mental health.
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Micmel I am sorry for your loss. It can be truly shattering to lose a parent! I am So sorry you are dealing with so much!
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Micmel, I'm sorry I haven't said anything to you about your loss. I just don't know what to say. Just know that I love having you around in all the threads I read. I know that will continue and it makes me look forward to reading BCO every day.
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The whole area of grief and loss has been a passion of mine since I lost a brother to cancer at 30.
I think the losses that cancer brings need to be acknowledged, sadness is part of the process. Diagnosis Of depression needs to be done by a medical professional, and other causes ruled out. Like my brothers brain tumour or mono IMO.
I think counselling should be offered as part of the process. I am biased but find psychologists more helpful in working through issues than social workers. The psychological impact of cancer is real and needs to be addressed as well as the physical.
Jaycee, you have done what is best for you. We are all on a very individual path and we all have to do what is best for each of us
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