Cancer, Chronic Illness, and Abandonment
Hi, my name is Britney and I have a monoclonal gammopathy. I Found out a year ago that I Had some something wrong with my blood and the original doctor that I saw, um, Had no clue what was going on and referred me out. And since then I have learned a lot, I have also, developed a lot more questions and no answers. I have met a lot of amazing people around the world who's living with similar conditions--with multiple myeloma or Poem syndrome or (fumbling over my words) amyloidosis and even other people living with monoclonal gammopathies that aren't yet, um, "life-threatening", I should say.
I don't know how else to put it because they are all significant They're just not all life-threatening. So.... Yeah... I have labeled myself as having MGUS because I do not have multiple myeloma. However my doctor told me that there's a chance that I may progress.
She also hasn't ever uttered the words MUGS she has just said that I have paraproteinemia or monoclonal paraproteinemia, and from my research that is just Kind of like MGUS, but then you look other places and it says not to be confused with MGUS I think maybe after this year she'll have a better idea as to what's going on with me and whether or not It's true MGUS or if it's something different. In this time that I have become, pretty much, very well read on plasma cell dyscrasias. And just being the big nerd I am I felt like I've gained a wealth of knowledge. I've felt like I've been able to help a lot of people in my time of discovering what's going on with me and also helping other people as they find out what's going on with them. To kind of walk through that process, and it's been amazing and humbling and just... I'm really grateful that all of you who watch this, and have reached out to me. I am forever grateful that I've been able to meet you guys--a lot of you-- Today I wanted to talk about abandonment.
When you get a malignant diagnosis or when you're living with a chronic illness, I've heard this on both the cancer side and those who are living with chronic illness, that there's a feeling of abandonment sometimes. That people who you think should be there for you, to be your support, family members, maybe anchor relationships aren't there and present after a diagnosis. Or maybe they kind of fade away or they're not there the way you expect them to be there. I have found--and actually it's just been recently, although I've been feeling it all year I haven't expressed my frustration or being upset that I hadn't had the kind of support I expected. However, it could be too, that me and my husband Haven't really given any kind of inclination of the magnitude of our situation and we've dealt with it largely just between us.
He is my caregiver. He takes very good care of me and our family, and our household. Although I wouldn't say that I'm severe in my symptoms, or the things that are going on with me, but I do have frequent infections. I have a lot of pain throughout my body. I have a lot of neuropathy and neurological issues, that some days I tucker out a little early, and I can't get out of bed as fast as I can, or should. He's been a real help to me but outside of him we've been really limited in the kind of support we've seen. And I've heard a lot of other cancer patients and those living with other chronic illnesses, express this kind of feeling as well. That family members just disappear and..
I think today I have probably cried like six times over just finally I think letting myself feel what I was feeling all along. The disappointment, the hurt, the feeling of, "why don't they love me more", "if they here with me..." "Don't they know I need them?" But then there's also that feeling of, kind of, understanding that cancer is scary and that the word "Malignancy" is scary or that it "could be malignant" or that you're not going to get better and when people hear that, I think there's a few things that happen they're afraid, and they're trying to create a distance from the thing they're afraid of and that's somebody they love, their mortality. I think another thing that's really driving this for some people, I'm not making excuses, --I just-- this is what my mind can make sense of, and my husband's jokes I should be a psychologist, Well, you know the fear aspect of losing someone you love, but cancer itself is just a scary word and most people I think Myself included, there's been times where I may not be very close to somebody even if it's a family member, and maybe we don't talk much, and there's not an openness between me and that person, that I feel like maybe if I'm too forward or I'm too in the picture or just too in their face and Too worried and do this and do that that I'm actually more of a bother than a help. So I think maybe for some people who may not feel an openness to help you. That could be why they have, kind of, separated themselves from you because they don't know how to help, and I think see that's where it comes in on our part. Articulating the need-- but then, and I have done this a couple of times, articulating a need, and that falls on deaf ears or unwilling ears, and that's where we also have to, you know, myself included..
I know some people just mentally cannot handle it. They have their own issues and you know some people are narcissists and You becoming too much of their life is unacceptable They're the center of their life in their world so dealing with somebody whose needs are greater It's not it's not okay, and we all know a narcissist. We all know somebody who can't handle somebody else becoming the focus.
So that's also another reason maybe somebody in your family or somebody who was a friend, you know, kind of disappeared. I think... I'm sure there's more issues.. But those are the big ones that really kind of sit with me.
And I think, for myself anyways. Love is Unconditional and love is forever and love is something That's so deep within us and so strong that, for me, I think it would be hard especially If I really know and love a person, to stay away from them in a time where they're needing me. So part of me feels it's just a bad excuse and it's a lack on their end as a human being, and not on my end. And it's not my problem. And it's not personal, this has everything to do with the other person. And in my loneliness..
It's been the loneliest year of my life. It's really made me rely on my husband, and it's brought out issues within our marriage, but it's also made us stronger working through those issues and kind of building our relationship on something more solid than just Happiness and health and wealth. You know, there's so much more going on between me and my husband Because we have had to go through some nitty gritty type of stuff as human beings. And as a couple. I would have to say though with all the bad. It's handed me It's handed me a lot of good. Like I've said, all of you guys who have Been there for me virtually all over the world. It's been amazing and I love connecting with you guys! Some friends here locally.
I'm kind of new to this area, and I was kind of shy in the beginning But I had one friend that I made pretty quickly and she has been a rock for me. She's heard the ugliness out of me. Just when I had enough, and I just need to Overspill and just spill. And she's been that person I've dumped on, and I mean, we all have that person We all need that kind of person in our lives, and she's been that person for me and I've actually apologized too.
Like, "Sorry that was not okay", but she has been a rock she has just been kind and Giving and loving and helpful in every sense of the word. And there's times where I've told her, "No I don't need your help." Just because she does so much all the time. My sister actually has always been close with me, and we've had our bumps along the road because when she was a teenager, I kind of... Was bossing her around cuz I was an adult and our mom was out a lot working to provide for our family, so I was the grown-up in the house and She did not like that. "You're not my mom!" "You can't tell me what to do!" And now as a grown up, she's just like, "Wow, you were right about everything!" So this is how my mom feels? She's my best friend. I talked to her pretty regularly.
She calls me. She's busy. I'm busy, but you know, we talk and it's not about anything... She just calls me because I live far away, and we just talk! I think it's built something more solid in our relationship. We don't really talk about my illness so much.. And I know she's uncomfortable with it because of just that, again, your closest friend your closest relative... Their mortality.
It's being presented [to you]. It's uncomfortable, and it's unpleasant. But she is my best friend, and she calls regularly and it's awesome, and I love it, And thank you. Then last but definitely not least my husband..
Again. He's been my caregiver, and he's been there through thick and thin. He's been my advocate and he's also helped me advocate for myself and give me the strength to speak up for myself. In everything that's been going on. I've just recently felt myself to be open more with other people in this area.
In my church and stuff, so I feel like I have really I'm starting to find that family that maybe I feel like I have been missing along this process. A lot of that it has to do with distance because I do live far from everyone but then you know kind of having my Chosen family now and starting to develop that here where we're at and it's making a difference and it's making me hopeful for the future. Whatever me and my husband may have to walk through that we will have support and it doesn't Negate some of the abandonment I feel. Earlier today, I kind of ranted to my husband about it And how I'm kind of going through the anger phase, and you know you have to first recognize something to fix it.
You can't ignore a flat tire and it get fixed. You have to fix it yourself by first recognizing that there's a flat tire and admitting it. So admitting that I am hurt and then feeling that hurt... Letting myself feel that hurt crying about it and now being angry and kind of walking through the process and I'm sure I'm gonna go through moments where it's still kind of ugly on my part, dealing with the abandonment that I'm feeling. But I'm also realizing that it's temporary and that the relationships, I'm developing through this phase in my life... Or this trial.... Or whatever if this is for the rest of my life... And if I may die due to what's going on with me..
I feel like the relationships I'm building now are so much more rich than what I've had before. And are really true relationships, the meaningful ones that you should seek after. So I just wanted to talk about this a little bit because I feel like we don't really talk about The abandonment and the ugliness that comes along. We always want to say, "Well cancer" or "my illness has really pushed me forward." Which it does, and it should. We shouldn't just get stuck and be miserable all the time just because Something bad has happened to us, but I think we should also talk about some of the unspoken things of dealing with a illness and cancer. Talking about the loneliness that comes along with it.
Also, in speaking about it someone out there is not feeling alone... Like I felt for the last year. Thanks so much for watching this guys and listening to me rant I also wanna let you guys know that I am planning to probably start uploading once a week on this channel.
I'm going to stick to myeloma and myeloma related type information. Maybe do some vlogs with my appointments--bring you guys along with me--to show you what my appointments are like. Keeping it central on my myeloma information. And also, along with that, I want to let you guys know that I started a Awareness page on Instagram called "myeloma what" and it mixes humor with some serious information, to just getting real about what's going on in cancer and The lack of awareness there is for multiple myeloma, and really, all the Plasma Cell Dyscracias.
So guys, Thank you so much for watching, and I will talk to you guys later. Bye!!.
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