Denim (denmart) wrote,

The Wait Continues (and... someone you love may need to read this one day)

In early June, while waiting for the results of the first biopsy... I remember feeling a unique peace at that time - I was concerned, hoped nothing was seriously wrong, but that early in this game I was giving myself the same advice that others are still giving me: Relax, have patience, you've done what you can.

I was, I think, equally prepared to hear the worst or the best... I truly didn't feel any fear at that point... I was able to see that whatever happens, I was at the best place in my life, surrounded by the best people and circumstances to handle even the worst news right then. Right now. I still believe this. KNOW this - but my peace is gone. I am much more proud of how I felt then, expressed in the poem, than how I feel now... but I don't know how to get back there.

I am a person who hates stress, I hate conflict, I hate anxiety, I hate anger... I usually complete a sentence like that with a bit of self-deprecating humor such as: It's a good thing I love irony!! But today it's not funny.

This waiting is becoming a bit much - and I think I am getting on the nerves of others - But I've lost the power of positive thinking, at least for the time being. It's not that I am overly concerned about the ultimate outcome... I mean, I am, of course, but the accumulative affect of not knowing, of feeling a total lack of control of anything right now is what is so frightening... and it feels daily more and more like a game in which I am just a character with a role in response to everyone else's.  That isn't at all derogatory to anyone, not even myself - just the best way I can think to describe my feeling.

I want the world to stop for a moment - let me catch up! I feel like I am suddenly in a glass bubble watching the world go by - a clock represents to me either an endless counting of the minutes until the next day, each time I learn that the waiting continues - at the same time representing the blur of time speeding by that I may be wasting on insignificant things, in the scope of my  life... (and that of my loved ones)

*"For almost all of the women, time was "heavy" during the waiting period. They remarked on how the experience of time passing was altered due to their anxiety state. For example, while they might manage reasonably well at waiting 1 week for a consultation, they might panic at being told that the consultation had been delayed for an additional day. For some women, the psychological tension associated with the waiting was almost unbearable. As one noted, "Well everything is a week or 10 days sort of thing and it adds up. In between, there are the 24 hours a day when you're just going nuts." Some found themselves in a state of despair. As one recalled, "It was like preparing for the end." Because so much of their psychic energy was bound up in awaiting the verdict, many felt suspended from their participation in normal living."

It is frustrating, on top of everything else, to possibly be misunderstood - yes, I am frightened, but what I am frightened of is not cancer, not mortality, not surgery... I am fully aware that whatever "this is", it is likely something curable - even if malignant - I firmly believe that... But what I am afraid of is: "What if I'm dying??" No, I did not contradict myself... The fear isn't of dying, but of wasting precious time! And no, I do not imagine that whatever "this" is it's growing exponentially" every day... that's not what I mean.

I mean, I mean... "deadline" has new meaning. I want to know if I should be focusing my energy 8 hours a day sitting at a desk for a company whose bottom-line is profit, when I might only have limited time to be creating memories with my daughters, my grandchildren, my partner, my friends... that's kind of it. A good example, or the best way I know to explain. I JUST NEED TO KNOW.  I need a plan, I can't concentrate.

Today I cannot look at a calendar and anticipate, as consolation, the cool crisp autumn days ahead... something that never in my life has failed to cheer me up before in the summertime heat... Oh, I tried... but instead of solace I feel a ferverant hope bordering on panic... how do I deal with that? How did my mother? How do the thousands of people waiting for a diagnosis at this exact same moment??  Especially the ones who, without a formal diagnosis really haven't a clue what is wrong. Certain illnesses there is a wealth of information abou; even a moderately intelligent being can patch together enough information to at least gather a semblance of a plan... a modicum of control.

I need the world to stop for a moment - but it cannot. I know. I know.  So I feel so disconnected from everything normal around me... Disconnected, as if suddenly I'm a tourist in a foreign land - Suddenly a guest in everyone's life, even my own. That weird feeling you get visiting friends you love dearly and overhearing them talk about plans they have 2 weeks after the day your stay with them ends... That type of thing always has made me so homesick... if you asked anyone in my family they will tell you how horribly homesick I can get - not just my children, but my dad, my stepmother, sisters... they do know that much about me. 

But you see, in this case, metaphorically, remove the "home-" part of the word, and what I am metaphorically dealing with is only that fact that I am "sick"... until I have a diagnosis, a plan - I have no where that I know to go.

I wish/hope people understood/understand how hard I try to keep above this... I am not being contrary, dramatic, fatalistic, negative.  I believe everything will be okay. I know I am strong, resilient... I know I am in good capable medical hands, now. I know that I am loved and supported. I know I can handle this. I'll come out stronger. I know I am 90 likely not going to die... that the odds are at least 50 that I don't even have a malignancy. I KNOW. I *am* comforted by that, usually.

I also know logic doesn't have much room in MY swirling emotions... and I just don't know what to do about it.

In the off-chance that I do only have limited time in this world, counseling patience, or reassuring that "it just takes time, it'll work itself out" are kind of the words that, instead of soothing me, send me off on another round of  "No, Really - stop for a moment world, Please! Let me catch up?"

The above italicized, quoted text, and that below is something that I found only after more than a week of searching online... I was pretty sure that someone else must understand this feeling - and sure enough, I finally found the EXACT description for what I am dealing with mentally right now, even if my physical problem is undefined. Please email me if you'd like a copy of this, because I guarantee it is invaluable info for anyone going through the "wait" - and their families... the last paragraph affirms how important information is - yet - the only way I could get this document is to pay for it - I am absolutely sick of unneccesary ironies.... Someone you love *will* need to read this some day....

"The actual steps in diagnosis varied considerably among women, depending on clinical factors, available resources, and clinician preferences within their community. Many women received diagnostic mammogram, ultrasound aspiration, fine wire localization, or surgical biopsy, or a combination of these tests, before the results were conclusive. While most women in the focus groups had been given a definitive answer as to whether they did or did not have cancer, some had been booked for further follow-up to monitor suspicious but inconclusive results.

The steps within the diagnostic process typically involved obtaining one test or consultation and then being informed that they would have to wait for the next one, often with a different practitioner. Few women had a clear sense of the entirety of the process at the outset, so the experience was comprised of a series of consultation events with waiting periods in between. All understood that they might have cancer, but most had little insight into the point in the process at which that determination might be made. Thus the waiting period was an intensely uncertain time for almost all of the women."

The Experience of Time:

"For most women the waiting period constituted a "limbo" period in their lives during which priorities were radically altered and their energy was focused on "getting through time." Many described serious disruptions to their daily existence, including insomnia, panic attacks, an inability to concentrate at work, and the inability to plan..."

"...Many women reported information-management strategies as critical to the way they handled waiting. On learning of the abnormal screening mammogram result, some felt an immediate need for all the information they could lay their hands on. As one explained, "I looked it up on the [Inter]net and everything. Every medical book that dated back to 1800, I think. I think that is where knowledge is scary. I would stay up all night and cram as much as I could get in." Other women were more comfortable with awaiting the information that their health care providers thought they would need. From their perspective, unnecessary or disturbing information could accentuate their fears and impede their ability to get through time in the waiting period, and so they avoided the information sources that might have been available to them..."

"A second variation had to do with how women handled the presence or absence of options within the diagnostic process. For some, the prescription of a set pattern of steps toward diagnosis was comforting, while for others, some choices within the process seemed highly important. Most women found that they needed some opportunity to talk to health care professionals about what to expect and how to make sense of this process. They acknowledged that there were occasions, such as on first hearing that their mammogram results were abnormal, when they were unable to retain information. Some asserted themselves to create opportunities for communication with health care professionals, while others merely wished for that opportunity. As one woman explained, "You sort of feel as if you have no control over how much time it takes or over how much somebody else even cares." Because their anxiety levels were typically very high, several participants acknowledged that their attempts to communicate with others were badly handled. (denise note: Don't I know it.) As one remembered, "I never usually talk to people like I talked to him [surgeon], but I just blew up. I was just like a tyrant." Thus some women focused on following procedure, while others found the need to assert their influence over what was happening to them..."

"...Among those who did not reveal what they were going through, there was often a strong desire to talk to someone who had first-hand knowledge of the experience but had not been subsequently diagnosed with cancer. One woman recalled, "I didn't need to live through three weeks to my diagnosis wondering how long I had to live. I needed to talk to somebody who had gone through the experience and survived it." Because the readily available support networks for women in this situation are aimed at women who have been diagnosed with cancer, many women felt the absence of lay support during this period was a significant problem. "I have to wait a week to get this done and I'm really frightened. To have another woman who has been through this process just at the other end of the line may have been helpful."

* The Experience of Waiting for Diagnosis - The Breast Journal

Although a few of the women experienced no significant barriers, the majority were convinced that there were elements in the diagnostic process that unnecessarily complicated their waiting period. The frustration that such problems caused was an important aspect of their accounts of the experience of waiting for diagnosis.

The first significant challenge women reported was that of accessing appropriate information. While not all women sought information during this period, those who did often found that it was not forthcoming from their health care providers. As one recalled, "One of the things that I found extremely frustrating is the way in which I had to work so hard to get information, including information about myself that the medical system hadthis sense constantly of that system closing ranks against me." Often women's attempts to obtain information about their suspicious symptoms made them aware that information could be withheld. As one explained, "I was a bit upset because I found out afterwards that this small lump I had had shown up in the mammogram the year before. No one had said anything to me."

"...Beyond specific information about their own situation, many women also tried to access general information about diagnostic steps associated with breast disease. Paradoxically the route to obtaining such information typically ran counter to the psychological strategies that many women were using to try to get through time and retain a sense of optimism. As one recalled, "When I finished seeing the surgeon, I asked for more information. They said, 'Oh we don't have anything here, go to the cancer society.' Now wait a minute, who'd said anything about cancer! I wasn't going to go trotting off to the cancer society. I didn't really want to acknowledge that there could be that chance of cancer."

"...Complicating this was the reality that each step in the process typically depended on the outcome of the one that came before, so the sequence could not be predicted in advance. As one woman commented, "It seemed to me that every time you had some procedure done you had to run back to your specialist. Then you had another procedure then back to your specialist. It seems like a waste of time and money." This aspect of the diagnostic process made waiting especially problematic. Another woman said, "It's all that scheduling back and forth and your mind plays all sorts of crazy tricks on you." To their surprise, many women also discovered significant seasonal variations in the availability of services. One woman recalled, "What I was told is that they cut back on the surgical procedures by about 70n the operating rooms in the summertime."

"...The net effect of the problems women encountered with information access, bureaucratic challenges, and unpleasant personalities was the pervasive sense that the system itself could not be trusted. Human and bureaucratic errors were common in the accounts, and their effects on the women were powerful. While some women rationalized them as exceptional situations, the majority articulated a general sense of distrust that each instance served to confirm. Women reported such events as errors in their medical records, conflicting recommendations between clinicians, technical errors during procedures, lack of communication between specialties and departments, and even efforts on the part of their clinicians to break rules to expedite their diagnostic process as disturbing clues to the general failures within health care processes. Because they anticipated the possibility of a cancer diagnosis, any shortcoming in the way the health care system functioned was of particular concern to these women, and evidence of its sloppiness, inequity, and dependence on human frailty was particularly disturbing. The feelings of frustration and distrust that emerged as a result of their various encounters within the diagnostic system complicated the experience of waiting for these women."

"...A final theme in the accounts of the focus group participants was the importance and influence of health care communication throughout the waiting process. While verbal communication was a prominent issue, the accounts confirmed the extreme sensitivity of these women to the nonverbal messages they received throughout the diagnostic period. Many women admitted to attending to facial reactions to try to determine whether the news was good or bad. Others read special significance into the look in an eye or the tone of voice, as one woman's account illustrates:

Other women reported individual interpretations of scheduling patterns. For example, many acknowledged that they were highly attuned to the possible meaning of being recalled for additional testing. "Then the next morning I got a call from the hospital that they wanted me to come in the next day to have further testing done; I felt that something was wrong, because if the doctor phones to get us into the doctor's office, there is obviously something wrong." A particularly disturbing combination was reported by several women when they detected urgency in the voice of the professional at the same time that they were being told that there would be a significant delay before the next diagnostic procedure.

Because information access was a concern for many women, the way in which information was conveyed was an important element of health care communication. As has been noted, many women found it difficult to obtain the information they thought they required. As one explained, "For them it's just a job and I understand that. Every day they are dealing with hundreds of women, going through the same procedures But I think my anxiety could have been calmed down by just being a little bit more specific in terms of what to expect."

"...Others found that the form of the communications they received was not particularly helpful to them in the context of their waiting process. One woman explained, "I just didn't know how supportive I thought people telling me not to worry was. It's not that I didn't want to hear that, it just really didn't help. They were so casual." For many of the women, the words and the tone of health care communications were of major significance in their ability to make sense of the situation and manage the waiting period. As one said, "You're certainly on edge the whole time, wondering. When my doctor phoned he said 'most of the time when these come back as abnormal there is nothing to worry about.' So you kind of hang on to that."

"...Until women know whether they do or do not have cancer, they put their plans and priorities on hold and focus their energies on a complex, frustrating, and often highly distressing diagnostic process. Both the length of waiting time and the disturbing experiences endured during the waiting process transport them out of their ordinary realities and into the foreign and often exasperating world of trying to negotiate the health care system. For researchers as well as clinicians, serious consideration of the implications of what women have to tell us seems warranted. As we focus on reducing the unnecessary delays associated with diagnostic processes, it is also important to extend equal concern toward the system and provider communication processes that powerfully influence women's experiences...."

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