STEAM ROOM FOR ANGER

runor

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.

JCSLibrarian

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

candy-678

JCSLibrarian----YES !!!!   A VACATION FROM MBC !!!!!! 

jaycee49

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.

Betrayal

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.

jo6359

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.

CreatureKeeper

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. 

Artista964

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.

jo6359

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

bennybear

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!

Betrayal

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.

Micmel

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!! 😡

DawnS1962

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

JCSLibrarian

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.

jaycee49

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.

bennybear

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!

jaycee49

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.

bennybear

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

jaycee49

Thanks, bennybear. My MO's practice also has a social worker. Social workers can be trained in many different ways, as can psychologists. My therapist actually got the law changed in my state so that psychologists could prescribe certain medications. That is uncommon. Quite a bit of extra training is required. What I think many cancer patients suffer is something called situational depression. Yeah, it's called depression. And, no, I'm not calling you crazy.

Schweety

What is the hell is the difference between recurring bc and bc cancer that just keeps rearing its ugly head??? I had dcis in May of 2000, idc in May of last year and now they found another small 1 cm mass or "area" of concern rt below or behind my nipple. In 2000 I had a lumpectomy with rads, last year lumpectomy. My Oncodx score was a 1!!!!! 100% pos for hormones but her2 pos, clear margins....everything looks peachy. Now this! I am mad as hell and do not want the biopsy...I am 69 years old on Monday with diabetes and RA all this shit....well I just don't need it.  I have had to give up 4 summers for health issues....I live way up north. ~sigh. So I was wondering what the difference is between recurring and non recurring. Anything that is earth shattering?

Lita57

CreatureKeeper...that co-worker is a b$tc& c*n%!

Throw the "malocchio" (evil eye) at her. I hate it when these people try and tell you what to do. Cancer's no walk in the park - you NEED YOUR REST in order to heal. Just wait until SHE GETS cancer! As women, we have a one in eight chance of just getting BC, not too mention all the other cancers out there: lymphoma, colon, lung, pancreatic, liver, brain...the list goes on and on.

She's "stunad" (stupid, ignorant) and "scustumad" (rude, no manners, tactless).

(There's your three "bonus" Italian words for the day )

CreatureKeeper

Lita57 .. LOL .. I can't wait to return to work and give her the malocchio in person. Being half Sicilian, I do it well. 

DogMomRunner

I just had my lumpectomy yesterday. Everything was going well, woke up with minimal pain and went on a 2 mile walk. My husband and I did some light cleaning and then decided to take my bandages off so I could finally take a shower. The first bandage came off ok but when we started on the second, I started feeling lightheaded. Stupid me was standing up and I fainted before he could get to me. I hit my mouth on the counter. Chipped one of my front teeth and lacerated my lip. Almost knocked my tooth out.Stupid cancer.

AliceBastable

Oh, my, that's really adding injury to injury. And you really overdid it. I was told to keep the surgical bra on for 48 hours and just do bird baths those first few days. And to take it easy! Although it was outpatient, it's still surgery.

bcincolorado

Schwetty it might be a new cancer perhaps and not the same one that "recurred". It may have different characteristics perhaps?

I think MO basically feel if you are not Stage IV you should not be "worried" at all and do not understand why people should feel how they do. I loved my old one and this one who took over (same practice) is one who deals only with breast cancer. She has a whole different attitude though than the first one. She treats more aggressively right off the bat and was surprised I was not treated a certain way, which of course caused more fear. She doesn't understand why I'm worried though after she said "your tumor was HUGE" and "why did not do radiation therapy right away?" But of course now I'm not to be worried.

Betrayal

Lita57: OMG, thank you for the Italian lesson. I have not heard some of those words in many years and needed a refresher course. LOL

bennybear: I think we agree that access to a counselor during treatment for BC would be an asset since dealing with grief and loss is an individual experience and none of us can live another's experience. I feel the psychological aspects of BC (or any chronic disease for that matter) are sometimes downplayed or ignored in favor of the physical ones; those physicians feel comfortable dealing with. They ask you to complete (both the RO and MO) an assessment form regarding your anxiety/stress level but there was no actual follow-up once completed. I asked what happens to these forms and never received a satisfactory answer; some mumbling about they are evaluated...but no actual follow-up plan was presented.

Unfortunately, many insurance companies do not pay for psychological or psychiatrist support and the out of pocket cost in my area for a psychiatrist specializing in BC patients was $550 for the first visit of 45 minutes and $375/ 45 minutes thereafter. Insurance was not accepted so I would surmise this was too expensive for most. Referral to a clinic was discussed with care provided by psychiatric residents in training on a sliding scale payment plan but access was limited to a few hours per week. The days and hours were oddball and not convenient for those who were employed full-time.

I had access to a SW but the scope of practice was limited and did not include psychological support beyond being present during anxiety producing procedures. It was the SW who suggested a psychologist, provided a list of those locally and I did share my experience with the SW when I decide to terminate the relationship. Plus, none on the list specialized in BC counseling.

DogMomRunner: Ouch! Anesthesia can take 24-48 hours to be metabolized and excreted from the body (depends upon the type used and the individual response) so your discharge instructions should have mentioned not resuming normal activities for this time period. Sorry that you hit your mouth and tooth and wish you a speedy recovery. Rest is also important to recovery including wound healing so give yourself time to do both.

Schweety

bc in Colorado....thank you for your response!! Wow....Huge and not to worry??? Well I wonder if it were her sister or daughter if SHE would worry!  Right?

Yea....I just am still in a state of shock I guess. And a little scared. And mad as hell that they want another damn biopsy.

runor

It just occurred to me that if we added an H to the word Anger, this would be Steam Room For Hanger - a place to air your dirty laundry. Ha ha! Get it? Oh my god.

jo6359

jaycee- I completely concur with your views on the stigma attached to antidepressants and mental health issues in general. Antidepressants do not suppress your true emotions. There are also many different reasons for taking antidepressants. There are some individuals who need them for a short time to assist in dealing with an acute loss whether it be a death, divorce, cancer diagnosis or etc. There are those who suffer from major depression who will remain on antidepressants for most of their lives. I do believe there is a tendency to over medicate. We need better analysis from our doctors, social workers and counselors in assessing the situation.

Most major cancer centers provide social workers who are trained in breast cancer issues. While you are receiving treatment, the service what's provided free of charge at my facility. Once treatment ended if you wanted to continue with the oncology social worker you had to pay. As with most of us that comes with a high deductible or co-pay.

Micmel- my heart breaks for you as I hear you vent about your pain, fear and frustration in dealing with this damn disease. I am glad you do have your dogs and family to provide you with some joy. I am so sorry about the loss of your father. You've been dealing with so many losses . At times, it's difficult to find the right words to say. All I can tell you is we're here for you.

Betrayal

Micmel:

I wish I had words that would offer you comfort at this time. You offer comfort to so many as they struggle, so it is difficult to not be able to do the same for you. All I can offer is a hug and that others do care.