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Location: Finally the house is done and we are in Port St. Lucie!
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Quote:
Originally Posted by charolastra00
It's up to $30 a year now. Breaking the bank. :P It's $50 a year on my own, which I'll gladly pay.
At this point, I have been no contact for more than a month. I have to wonder what she thought she was accomplishing? "Oh, look, I'm still spending MONEY on you!"
No doubt. Also to keep 'her' in your thoughts. Stray to far and they want to reel you back in. A Think you've forgot about me?....I'll show you, type mentality.
I ended up postponing the appointment. My appointment is an all day affair going through many different departments at the cancer center: bloodwork, lung function testing, cardiologist, and finally my appointment with my oncologist. While I have no doubt that I'm fine - this is my last appointment and I don't even have a scan scheduled - the amount of acute anxiety involved with the day means that I am unable to function the day before the appointment, am heavily medicated day of, and spend the day after dealing with muscle spasms from being so tense. Hospitals trigger my PTSD and while I have some good techniques for handling it, scanxiety is unlike anything I could have ever imagined experiencing. Worse - I do it all alone and even getting myself to the hospital (in the densest part of Boston - very scary to drive even on a good day!) is an adventure. I know the young adult program staff very well at the hospital and they know my story and background so they're generally pretty good about making sure someone either checks in on me or sits with me if they can, but they have other people who are actively in treatment or with recent diagnoses that I would much rather they see than deal with my lack of emotional preparation.
Normally, I would be able to distract myself with Outlander, World of Warcraft, and a Kate Atkinson novel. :P But because of the presentation and entering grad school finals on top of working 60 hours a week - none of which are things that can currently be changed or postponed - I'm just a walking ball of stress with no real time for self care. My big accomplishment of the week was skipping lunch one day so I could actually make it to my spin class. :\ Most nights I don't even get home until 8. It's a lot!
I do have a tendency of biting off more than I can chew. Before my anxiety was treated, I used being hyper-scheduled to control my anxiety. I didn't have time to catastrophize. Now, I sometimes forget what my limits are. Particularly this summer, a lot of the things that take up much of my time either physically or emotionally were unexpected.
For the most part, my friends are all hyper-overachievers, too: all working full time with either grad school or side gigs, founding nonprofits or companies in their mid-20s, volunteer obligations out the wazoo. Sometimes I feel like I'm not keeping pace, but I have to remind myself that not only am I doing what I'm doing with very little support and a lot of the burdens of a serious illness, but most people look at me and don't know how *I* do it either! Not that I really judge myself against my friends, but as I'm approaching 30, I'm painfully aware that I have not accomplished what I had dreamed of and worked toward.
Funny thing? I HATE public speaking! Or, rather, I hate giving prepared remarks. But after spending years crippled by social anxiety, I started to force myself into situations where I would *have* to deal with the public, speak up, and speak out. In college, I took an internship that involved a lot of phone time (which terrified me then, though I still hate it). After college, my first job involved a lot of event management and I am *still* incredulous when people who don't realize how naturally introverted I am call me a "people person." I have found that it is in my best interest to learn to fake it. So when I started forcing myself to meet people and got my first few invitations to speak, I had to force myself to run with it. I'm lucky to be a good writer with a strong voice and narrative - I don't want to take it for granted!
I got pulled into this presentation initially as a panelist - and I love sitting on a panel. I can speak in front of thousands of people with no problem off the cuff, even talking about incredibly sensitive topics like sexuality and cancer. But expect prepared remarks from me and I panic! Chemobrain makes it hard to memorize, so I lose my natural rhythm, and I get bogged down in details. Plus, it gives me way more time to be anxious about it! Like right now...
For me, the public speaking aspect is more of a second income stream than something I actually enjoy doing. What I say is important - especially at this conference where I am the only patient advocate speaking about financial toxicity in front of thousands of oncologists, hospital administrators, healthcare execs, and insurance employees who know that cancer is expensive, but often don't *know.* (I didn't know either - it was a rude awakening to become one of those people who I have previously thought just didn't plan well.) But I'm also very invested in monetizing my illness - if people want to pay to listen to me pontificate, then I'm OK with that. I also am working on a book (not so much in the past few months) and having these experiences not only makes me more marketable for publishers, but also requires that I hone in my storytelling and see what the response is. Not to mention getting my face out there is great for networking as I look to shift my career.
In my life, security and stability has never been something that comes naturally or as a baseline expectation. I constantly have to be seeking out ways to better my prospects because I know I have nowhere to fall back on.
Your last statement isn't true. Clearly, you are a survivor and you will always have yourself to fall back on. You've already proven that; now, you need to internalize that knowledge rather than just recognize it intellectually.
Further, you can take all the steps you plan to take to ensure financial security and still never feel secure unless you sort out when you are being driven by normal healthy sensible reasons or your fear of never being safe or able to avoid what you've already survived.
So for example, I applaud you for tackling your anxieties and fear of public speaking to get over it. After a while you may come to enjoy it more than you think. But, don't lock yourself into it as a second stream of income if you hate it just to feel safe.
In other words, don't build a life you don't really want just to "protect" yourself.
With regard to the speech, do your off the cuff version to the bathroom mirror, recording it if necessary, transcribe it then clean it up if necessary.
Your last statement isn't true. Clearly, you are a survivor and you will always have yourself to fall back on. You've already proven that; now, you need to internalize that knowledge rather than just recognize it intellectually.
Further, you can take all the steps you plan to take to ensure financial security and still never feel secure unless you sort out when you are being driven by normal healthy sensible reasons or your fear of never being safe or able to avoid what you've already survived.
So for example, I applaud you for tackling your anxieties and fear of public speaking to get over it. After a while you may come to enjoy it more than you think. But, don't lock yourself into it as a second stream of income if you hate it just to feel safe.
In other words, don't build a life you don't really want just to "protect" yourself.
With regard to the speech, do your off the cuff version to the bathroom mirror, recording it if necessary, transcribe it then clean it up if necessary.
Good luck.
Having yourself to fall back on isn't much when facing medical issues that require tens (or hundreds) of thousands of dollars out of pocket and require caregiving that you may have to pay for. My fear is that if I relapse, I will need to spend at least a year out of work and 6 months of that year with round-the-clock care at home. I don't have that and I don't know how to explain how frightening it is that I have no one who will be able to step in to fill that gap. Sure, it's a lot of "ifs," but it is an entirely reasonable and rational fear to feel the need to prepare for.
As it is, I'm 28 years old living in one of the most expensive areas of the country with roommates who share a space, but who are virtual strangers and I have little interest in interacting with. We share a space, nothing more. I can't remember the last time I felt "at home" at home - I hate living with roommates but even a studio apartment would be more than double my already pricy rent. When I went through cancer the first time, I had a very real fear of homelessness, couldn't fill all of my prescriptions, had to space out appointments because I couldn't afford copays, ate like crap, and lived in filth because I didn't have the energy to clean and a roommate who was a slob. I can't go back to that, and I'm not financially secure enough to be happy as I am.
No, I don't think I'll ever feel 100% financially secure, but I'd rather do something I'm not a huge fan of to get myself out of the constant anxiety that is being an introvert living with roommates than not. It's an unfortunate situation.
There is a national group who clean houses for breast cancer patients, for free. See if something like that is available IF you do relapse. I think you are borrowing trouble.
There is a national group who clean houses for breast cancer patients, for free. See if something like that is available IF you do relapse. I think you are borrowing trouble.
I looked for help everywhere when I was sick, including my 4th full time job (after fighting cancer, fighting the insurance company, and my actual full time job) of applying for every charity or assistance program I could find. I got nothing except for pity. I did not have breast cancer, which actually seriously limited the number of charities that offered support. Other more generic house cleaning help had a 6-10 month wait list.
One thing that is important to remember with any case of charity is that there are FAR more people in real need than there is funding and resources to support them. I am on the board of a nonprofit that offers financial assistance to young adult cancer survivors and you have a better chance of getting into Harvard than getting a $1000 grant (which is a drop in the bucket). We are a country whose social safety net is held together by off-brand duct tape.
I have several friends in homeless shelters right this very moment because of medical debt, job loss, and destroyed credit after cancer. These people are in their 20s and don't look very different from me except I had slightly better luck.
I looked for help everywhere when I was sick, including my 4th full time job (after fighting cancer, fighting the insurance company, and my actual full time job) of applying for every charity or assistance program I could find. I got nothing except for pity. I did not have breast cancer, which actually seriously limited the number of charities that offered support. Other more generic house cleaning help had a 6-10 month wait list.
One thing that is important to remember with any case of charity is that there are FAR more people in real need than there is funding and resources to support them. I am on the board of a nonprofit that offers financial assistance to young adult cancer survivors and you have a better chance of getting into Harvard than getting a $1000 grant (which is a drop in the bucket). We are a country whose social safety net is held together by off-brand duct tape.
I have several friends in homeless shelters right this very moment because of medical debt, job loss, and destroyed credit after cancer. These people are in their 20s and don't look very different from me except I had slightly better luck.
I think a lot of people don't realize that most money going to cancer charity goes to cancer research and not into the pockets of those with cancer. Because I was in my late 40's and established when I had cancer I didn't have to look to charities, but I have heard stories about how little financial help you can expect from them and it isn't as simple as just making a phone call to make it happen.
I think a lot of people don't realize that most money going to cancer charity goes to cancer research and not into the pockets of those with cancer. Because I was in my late 40's and established when I had cancer I didn't have to look to charities, but I have heard stories about how little financial help you can expect from them and it isn't as simple as just making a phone call to make it happen.
This is true. I had a friend with non-Hodgkins lymphoma and no resources, and I contacted the Leukemia and Lymphoma Society for information. Thereafter, I got regular snail and email asking to help them raise funds.
I think a lot of people don't realize that most money going to cancer charity goes to cancer research and not into the pockets of those with cancer. Because I was in my late 40's and established when I had cancer I didn't have to look to charities, but I have heard stories about how little financial help you can expect from them and it isn't as simple as just making a phone call to make it happen.
And, to circle back, this is a big reason why I speak even though I am made so uncomfortable and anxious doing so. Yes, a big motivation is a paycheck, but most of my speaking has been done on a volunteer basis and I'm paid in knowing I'm showing a different point of view to people who may be able to make a difference in whatever they can. I'm the stone dropped into a pond to create ripples - it's not necessarily a pleasant experience for the stone.
I don't blame people for not realizing - I certainly didn't until I was in the position to need help! Part of the ignorance stems from the narratives we tell ourselves that there would be abundant charity help if we ever needed it, I think. At least that was true for me!
In other news, just as I was reading this article about the diversion tactics of manipulative people and narcissists (highly recommended even if my experience is not something you have gone through), I got an email from an account I'd never seen before from my dad. I'm not sure if he created another account for this purpose or not. I actually *hadn't* blocked their email addresses, but it's telling that he assumed I had.
The email was short and made all about my parents' feelings. I was asked "when will this thaw end?" "Do you hate me?" And then informed that my mom was heartbroken. Still zero acknowledgement of the email I had previously sent them explaining why I was upset and laying out the steps they would need to take to repair the relationship. First step? Acknowledging that my emotions and my feelings about this situation are valid and deserving of respect. I know I will never get that, and these repeated tone deaf attempts at contact just verify it.
And, to circle back, this is a big reason why I speak even though I am made so uncomfortable and anxious doing so. Yes, a big motivation is a paycheck, but most of my speaking has been done on a volunteer basis and I'm paid in knowing I'm showing a different point of view to people who may be able to make a difference in whatever they can. I'm the stone dropped into a pond to create ripples - it's not necessarily a pleasant experience for the stone.
Think about starting a Kickstarter campaign for your speaking or other type of endeavor that has to do with cancer.
Think about starting a Kickstarter campaign for your speaking or other type of endeavor that has to do with cancer.
Good idea.
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