Do I focus on the worst case scenario?

I was asked recently how often I think of the dysplasia my body is fighting, as it was perceived I spend too much time thinking about it, and it must be affecting me negatively.  That question got me thinking, and the truth is that after two years of going through this, I don’t think about it as much as I use to, which granted was a lot.  I’ve almost become complacent during the six months between follow ups, it’s a time to relax and just live my life, as I don’t have any control over the situation medically.  That being said, I do spend a lot of time tweeting and talking about cervical cancer and pre-cancer, and the reason I do that is to make sense of things.  I’m sure I’m not the only person who’s been affected by cancer who does this very thing, and I’m someone who does better when she knows more than when she knows less (Huzzah for anxiety!).  Let’s say I never allow myself to think about it…..well,  it’s still my reality, something that I need to accept. When I do think about it, I want to turn away from it always being a negative thing and having my anxiety destroy me. I’m tired of anxiety taking away some of my joy in life. Really, this is the one part of my life where I’m an extrovert, as I will gladly share and talk about how this has affected my life.  It’s not that I want attention, in fact I hate it. I just want to feel like I am normal, and talking to other people with pre-cancer or cancer helps me, and I hope I help them too.

When talk about it with others,  I am taking control of the situation through my story and making things a little more positive for myself.  I hope I am educating people that we didn’t ask for this through some behavior, or lifestyle, and that listening to your body can make a difference. I also hope that people become more comfortable with gynaecological words, and don’t flinch when I mention where the dysplasia is occurring.  The best part is when someone tells me that I’ve made a difference, like when I’m  told someone’s daughter will be getting the HPV vaccine, a friend scheduling a pap that they’ve been putting off, or someone speaks up about their condition and no longer suffering in silence, normalizing things for so many.  I’ve seen how this can bring people together in such an amazing way in my support groups, and the love and respect I feel for many of those in the group has made me a better person.

This is the only way I’ve found to be okay with this condition and the procedure last year, and of course I’m not really okay with any of it, but that doesn’t change the reality of the situation.  I can pretend it’s not there, but that just isn’t the truth, it is there and I need to trust that my body has the chance to fight it off for good.  So for those who worry about me and how my choice to be outspoken affects me mentally, you don’t need to, because now when I think about the dysplasia, it’s usually in a more positive way.  And those times my thoughts are darker? I call a friend, or I go outside and exercise, and I don’t let those dark thoughts drag me down.

Similarities and Sadness

Every time I go to the support group I learn something about myself, and today it was that I’m really not so different in how I view the world.  For the past year, I’ve felt very dissociated from who I feel is the real me, a happier, healthier me.  She’s someone who anxiety doesn’t bother, depression rarely touches, and doesn’t have vicious mood swings.  I don’t know how to be her anymore, and maybe I’m wrong that she ever existed.  But no matter what, in my mind, she’s living a better life, and has everything she could ever want.  So it was startling to hear the group facilitator say those exact words, that somewhere her family was existing in another world very happily, and that she wished they could be that family again.  It’s amazing that we all have these exact same thoughts, and not from someone else’s influence.  It’s not something I’ve talked to with anyone I know, as I don’t want people to worry about me, but yet here we support groupees are, all are thinking these sad thoughts.

I do know that this current me, well it is me.  And I am generally happy, even when I’m feeling a bit sad.  I enjoy my friend’s company, exercising, and spending time outdoors in the sunshine….oh, and my new favorite show, Tabletop!  I know this is more about feeling like I am not getting better quick enough, and somehow I am failing, because I tell myself that it is all I am good at lately when I am feeling really low. Really, it’s that I am still mourning a more carefree me, one who hasn’t been touched by pre-cancer, and doesn’t have to worry about anything. It’s not like that can’t be my future in some way, it’s not like I won’t change again to another version of me, but I need to accept a lot of things before that will happen.

If you do see the real me on your travels though, could you ask her to call home?  I worry about her……

The Underwear Affair

I’ve mentioned previously that I would be participating in something called “The Underwear Affair” (June 7, 2014), which is an event to raise awareness and money for cancers that happen below the belt.  I’m not normally one to participate in a charity that is so huge, but I felt that there is a real lack of awareness for these cancers, and that lack of awareness needs to change.  I can’t tell you how many people I speak to who avoid seeing their doctor when they have bowel issues, or think pap smears are embarrassing and useless and won’t go.  I can’t imagine thinking this way as a pap smear saved my life.

My story

I went for a routine pap smear in January 2013.  It something I do regularly, and didn’t think about it at all.  That was until I got a phone call from my doctor’s office less than a week later, telling me there was abnormal results, and that I needed to see a clinic.  I again passed it off as nothing to concern myself about, abnormal results are fairly common, but when the clinic called a few hours after my doctor’s office…..I really began to panic.  I was told I needed to see them in about three weeks, as my results weren’t cancer, but they weren’t to be taken lightly either as they were abnormal glandular cells (AGUS).  Those weeks leading up to my first appointment were horrible.  I was so scared, and alone, cried all the time, but it was nothing compared to the weeks after the appointment. I won’t go into the deep depression I suffered for over a year, or the anxiety that was trying to drag me down, safe to say I was in a very dark and lonely place. At that first appointment, they found a cancerous lesion, and took three biopsies. Those were dark days waiting for my results, I can’t even really explain how messed up I was during that time.  I didn’t know if I would need chemo, and because of chemo put my life on hold, have all my reproductive organs taken out…basically I knew nothing and was scared about the future.  The results came back pre-cancerous stage one, and my colposcopist took a watch and wait approach.  This meant leaving the cells inside of me to see what they would do.  They got worse, very rapidly progressing to stage two,  and by my next set of biopsies in Septebmer 2013 the decision was made to remove part of my cervix.  That happened in November 2013, by way of a LEEP procedure.  I will go for my first follow up in May, to see what’s happened since the LEEP.  Since January, I have felt like things are really improving, both physically and mentally for me, so I am very hopeful of the results from my follow up.

Why I am participating

I am participating in the Underwear Affair because I want to change the perceptions that people have about cancer and pre-cancer’s that are below the belt, so anal, cervical, ovarian, prostate, just to name a few. There is a lot of stigma attached to these cancers, as they happen in “awkward” areas,  and there shouldn’t be any reason to be offended by them.  I would like to see people stop questioning a cervical cancer patient’s sexual history, and stop slandering these women, as you can get HPV from just one sexual encounter.  I want my friend who has just had surgery for anal cancer not to feel embarrassed when speaking about his condition, when he has no reason to be embarrassed.  This shame and stigma really affects our mental health and overall well-being.  Overall, I want people to stop judging and just listen, as that is the best thing anyone can do.  No one can fix our problems, except the medical team, and even their skills are limited.

Thank you for listening, and if you are so inclined, please see below for the link to my donation page.  Any donation is greatly appreciated.

Team: The Lady Bits

 

Article on Managing Fear of Recurrence

Sorry about being such a terrible blogger as of late, just had a lot on the go, and mulling a number of ideas for the blog. As well, a few important people in my life are dealing with their own battle, and it has been a lot to accept in a short amount of time.  I did find this article today about managing the fear of recurrence, which is something anyone touched by cancer knows is something quite difficult to deal with.  You are often told to “just live” in between your appointments, or while waiting for follow-up, but it is probably the hardest thing to do, and really only gets easier with time. 

http://www.mskcc.org/blog/six-tips-managing-fear-recurrence

I should be posting with more regularity soon. 

Cervical Cancer Support Group

In the past week I have really stopped feeling so alone with my cervical issues.  I’ve met a few great ladies who are blogging about HPV, cervical dysplasia, and/or cancer, but I have also attended a cervical cancer support group.  It was amazing from the moment I stepped in the door at Wellspring, everyone was very kind and helpful.  As I was early, I sat in the kitchen waiting for the group, and the facilitator found me and we had a quick private chat.  It was nice to have a little one on one time, since I was new. I did feel weird about going to a cancer support group, as I wasn’t diagnosed with cancer (as many have reminded me), but as she and the rest of the group said,  “You went through everything we did, the same tests, the same fears, and the same emotions, the only difference is you caught yours early enough that hopefully it won’t progress!”.   The next hour and a half really calmed down my anxieties, and made me feel more normal, and supported.  All the ladies had similar situations and talked about how their emotions were all over the place, happy one minute, sad the next, and angry all the time.  Or how you are made to feel shameful by society, like you caused or asked for this situation to happen to you, like you didn’t eat healthy enough,or you had one too many partners .  Hearing their stories, it did mirror a lot of what I have gone through, and while some of it made me worry (what if I do develop cervical cancer, and have to have chemo/radiation), but then I thought, I will at least know where to turn, and find support to make it through these things.  It’s not that my friends haven’t been there for me, or don’t try to understand, but I am quickly realizing there is no way for them to understand what I went through last year, and will go through the next year. It’s a weirdly unique to you and yet similar experience for all the women who go through the stages of cervical dysplasia/cancer.  Everyone had a chance to talk, and tell their story, or concerns to the group, and we all felt better when we left.  I also wasn’t the only one with dysplasia who was at the session, as there are no support groups that target us separately from cancer….but really why should we be separate? I’m not sure I will ever find a place I felt more accepted, and cared for than in that room.  If anyone is in Calgary and would like cancer support, check out Wellspring, they have so many support groups, and social workers, I can’t even begin to name them all, but they really help you to feel less overwhelmed.

As well, if you haven’t already, or it’s been a few years, book your pap!  Don’t wait for something bad, or don’t hide because you are afraid your doctor will be mad, or you don’t want to know if that weird symptom you are having means something far worse. Believe me, ignoring the symptoms is far worse.

30 Day Blog Challenge – Day 1

 

As you can see, I’ve decided to participate in the 30 day blog challenge, and the first challenge is to write a little about myself, or why I started this blog.  The reason I started this blog was ultimately personal.  I have been going through a very traumatic time in my life, cervical dysplasia, and when I looked to the internet to find information, I was very disappointed by what I found.  People were fear mongering, or posting unrealistic ways to cure dysplasia, and not much else. In October 2013 I began a social media course, and one of the units was about blogging, so I decided to create a blog about cervical dysplasia and HPV.  It’s been really beneficial to me, as writing a blog or journal is a great way to relieve stress, which I desperately need right now.  The reason I am not writing in a paper journal is simple, it’s never worked for me in the past, and I thought an online one would keep me more accountable.  I want my blog to become a place where people can find information, and openly discuss their issues…and maybe one day it could grow to be so much more.  I also want people to become more comfortable with discussing “delicate” issues, and not to feel uncomfortable when a friend speaks openly about things like cervical cancer. 

I honestly hope to connect with anyone and everyone, not just women.  I know a lot of guys that might be searching for information on how to support their partner, or how they can participate in halting the spread of HPV, and I would like to help them in that regard.  Ultimately though, I do want to connect with women who are going through some scarey times and show them a realistic view of one woman’s journey through dysplasia. I am fully aware that my responses to treatment are mine alone, so that is why I would love to have other people contribute content, or reply with their own story.  I really enjoy connecting with people (even though I am extremely introverted) and discussing any topic, so I would love to have people reply to my posts.

I’m making my hopes for this blog realistic for now, and it’s partly so that I don’t disappoint myself and become discouraged, as I always expect too much from myself.  I know I am rusty at writing, and that these things take time, but quite often I still end up feeling a failure when I compare myself to others.  For now I will be happy if I by December 2014 I have doubled my followers, and I have people replying to my posts, instead of just reading them.  A few people I know say they have enjoyed my work, but they aren’t leaving comments, so that doesn’t help me on the promotion side.  Some of my other ideas like creating a forum, or polls, need more followers or they will fall flat, so this definitely is a slow work in progress.

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There is one website that I have found that briefly discusses cervical cancer, and that’s HysterSisters.  They can be found at:http://www.hystersisters.com/

I’ve also discovered two other woman blogging about cervical dysplasia: marinasedna.wordpress.com and http://blogeocompanionpiece.wordpress.com/ . Please check them out

The World’s Most Popular Virus

I’m honestly not sure I can describe how this made me feel, other than inspired and less alone.

Blogeo

Lynne describes her delightful romp with HPV and the truly spectacular procedure, The Colposcopy.

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Why I should be embarrassed….

This word has been coming up a lot in my life, embarrassment.  I hear it from people who have gone through (or are going through) a similar situation, that we shouldn’t be embarrassed to talk about below the belt cancers.  Of course I agree, and I’ve noticed it in my own life.  People who refuse to speak to me anymore, sinceI talk openly about my cervical dysplasia. It’s really sad that we feel there are things people should hide, that they shouldn’t talk about ever.  I don’t know if it’s like one nurse’s opinion, that people are afraid, or if it really just is plain ignorance. Really, I shouldn’t be surprised though, since every day people are told to change who they are.  It would be nice to see things change, for people to be more open, and there are places where that change is happening.

That would be what I learned on Friday, that there are people who are working on changing how we talk about our bodies.  It was my first rehearsal for the Vagina Monologues.  It was amazing to be in a room of women who were open to discussing anything.  They said words like vagina with ease, and made jokes that were hilarious and daring.  And a few were there like me, to be part of something that forces our society to accept that female sexuality exists, and to speak about their own sexual health issues!  One girl was even there because she wanted to learn to become comfortable with talking about sex, cervixes, as she was very uncomfortable with feeling uncomfortable.  How brave is that?!?!  I’m still not sure about this whole being on stage thing, but just being in that room for 2 hours for rehearsals made me feel less alone.  And no one laughed at me when I answered the question “What would my vagina wear?”, everyone else spoke about wearing diamonds, and fabulous things, whereas I said mine would wear something inconspicuous because it wants to hide.  And the level of acting talent in that room, and how brave one girl was with a monologue that was mainly moans…..

I think women like us are meant to change the world, the maybe small ways, but even small changes can be powerful.  I think the director was right that being a part of something so challenging and scary will be healing for me.

HPV vaccine given to young men in AB….

http://metronews.ca/news/calgary/874972/province-to-announce-hpv-immunization-program-for-boys-sources-2/

I can’t wait to hear the news tomorrow, and I hope this is true.  It does seem odd for boys to be inoculated, but they can get cancer as well.  Why I am truly happy is that I was in a trusting relationship and still got HPV, many do, it could be that someone they were in a relationship previously got HPV and has spread it to many others.  It’s amazing how quickly it can spread, even with the use of condoms, and though not all HPV infections progress, who wants to take that chance that it might?  Kids are already kids as well, it’s not going to change their behavior, but it’s nice to think that maybe one day women won’t receive the horrible news that they have dysplasia and/or cancer.  And yes, for those who might be curious, I am waiting for injection #3 on the advice of my doctors.  I don’t want to catch another strain and go through that I have again.

Today was an amazing day…..

I can’t actually believe what happened, now that the day is over it seems a bit unreal.  Last week, I was dealing with some depression and feelings of hopelessness due to a family issue, but a few things have helped me break out of it and I am feeling a lot better.  It all began when I read the UToday email, which I do every day as I learn about some pretty amazing things from it.  I learned about a group that is involved in advocacy in regards to the HPV vaccine and how they are fighting the current negative perception that is out there about the vaccine.  It was a great conversation, talking with someone who really understands how I’ve been feeling lately, and how I feel when I read material on HPV vaccine.  I hate the idea that young girls are growing up and will one day go through what I have, that of cervical dysplasia, and the misinformation going on out there about HPV and vaccination is really hurtful.  I don’t mind honest debate at all, and differences of opinions, but I don’t like it when a fear campaign is waged solely to push an agenda. I know that I am going to meet this fear time and time again, and that I need to grow stronger and be able to face it without making it personal, but that is really hard right now as everything I’ve gone through is very recent.

This group not only is trying to spread the word about the facts on the vaccine, but it is pushing to have open and honest dialogues in schools, and with religious and medical professionals.  It has also put me in touch with a cervical cancer support group, and though I may or may not have that diagnosis (find out in a few weeks), I know they will accept me and understand what I have been through as of late.  Though my friends have tried really hard to support me, they don’t always understand exactly what I have gone through these past few months. I think it will be nice to talk to people about my situation, and even talk about how we can help other women who will face this challenge.  Together, I think we all can do a lot of good work and lessen the awkwardness that people feel when someone starts talking to them about feminine based issues.

It seems I may also be stepping somewhat into the fire with this blog, as there is a war being waged again on the vaccinate or not vaccinate front.  All I ever wanted to do was speak honestly to women about my situation, and provide a place that they could feel safe confiding some of their fear, and I will do that, but I may have to expect some flack from people who don’t respect those wishes. I am very much for HPV vaccination, mainly because too many women do not go for their regular pap smears, and when HPV does affect you it really devastates your life, so preventing this devastation is pretty important to me.  I wish that something like this had existed when I was younger, as I could have prevented a lot of suffering for myself.  I also hope that my story reminds women that they need to have their pap smear regularly! It’s very important! Unfortunately, not enough women do this regularly, as they may be embarrassed, afraid, or feel it is against their belief system, and it’s the best prevention tool that we have currently.  So if it’s been awhile make that appointment!