Kristal

This site is about my experience with cervical dysplasia, as well as anything else I might feel like discussing!


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Moving Forward During a Retreat

I’ve been avoiding blogging for some time now, and I’m not sure why that is exactly?  I wrote this a few weeks ago and promptly avoided posting.  Tonight, all the inspiring talk on twitter about Stand Up to Cancer made me realize I need to post more often, and be open about things, like last week’s specialist appointment. So before I talk about that, I should really post last months entry…..

I would never have said I was a girl who would like to be on a retreat. I do love to talk about feelings and emotions, and I love the outdoors, but being stuck in the middle of nowhere with a large group of strangers?!?! That’s just not me….though many of my friends would probably say that is something I need to do, be okay with the unknown. I generally prefer smaller group settings, something that is more on the level of a one on one interaction.

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I am recently back from YACC’s retreat yourself BC, and I have to say it was probably the best decision I have ever made to go on that trip. I owe a lot to a friend who convinced me to come in the role of her supporter, so that I could attend the event. It was a very last minute decision. I know the term “gets it” is over used, but let’s be honest, we want people to “get” us, so that we feel normal again. We want to feel accepted, safe, and that people care about our wellbeing. That is what I got this weekend. Acceptance. Friendship. Kindness. I could go on and on, but I won’t bore you with those kind of details (yet), instead, I will go into this idea of acceptance. Whether it’s friendship, dating, family, etc., relationships make our world. These relationships provide comfort, a sounding board for crazy ideas, and they listen to our shit (that is a skill that so few people have as we are all fixers!). Currently, my family life isn’t what you’d call healthy, my dating life is well…..there’s not a lot going on there, so it’s friends that provide the support, companionship, and love that I need. It’s been a difficult year as many know, and I would say for most of it I was lost, alone, and very afraid…that is until I found a cervical cancer support group.  I also found Localife, and made so many good friends there, but I still felt like a bit of a fraud in comparison to the people in these groups as I was dealing with an aggressive pre-cancer, not cancer itself….but they funny thing is that I identified with them so much more! They understand the constant doctor’s appointments, the biopsies, the fear, all the bad things that come with a dealing with any type of cancer. For example, this weekend, I got to talk about how one dates when you are dealing with cancer (when do you tell them? First date? 12th? Never?), how one deals with physical and emotional side effects, and even simply, how does one feel desirable in any way at such a vulnerable time? No one ever told me I was a fraud, or that I didn’t belong, and it made me think that maybe we need to spend more time caring about each other, and not so much time trying to pigeon-hole people into constrictive definitions. That way, we might not feel so alone and less deserving of support when we go through a difficult period in our lives.

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This isn’t to say that my diagnosis is the same as everyone in the community, as it comes with it’s own unique circumstances, but that is true of any cancer diagnosis really. What it means is that I just feel a lot less alone. I feel a little more capable of handling my future, and that maybe I can  move ahead and work on things I want in my life. I really don’t know what that entails right now, and I don’t have to make the decision today. I do know one thing though, it involves wanting to make more connections with people, both friendship and romantic wise. It’s more being open to any opportunity that might present itself, but also just being okay with what I have now.

That, I haven’t laughed so much in a weekend in all my life! It felt so good to laugh at the same time that you were facing your reality.


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Roller Derby – Season Opener

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I am a huge fan of roller derby, that may come as a surprise to some people.  I think these ladies embody so many qualities that I would love to see in everyone, they are brave, strong, spirited, supportive, and they just know how to have fun.  I’ve only seen exhibition games to this point, so it was great to finally make it to a proper bout.  If you asked me why I enjoy the sport so much, I don’t know that I could pinpoint one part (though a lead jammer breaking through a pack is pretty exciting), but I know I’ve loved it for awhile….actually since that A&E show about derby girls so many years ago.  

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What was even better is that I know a few people on the Cut Throat Car Hops (@CDRA_CarHops), which made the game so much better.  It was fast paced, hard hitting, and just all around a lot of fun, with Jammers leaping over blockades, and hits to satisfy any hockey fan! It’s safe to say that if you haven’t attended a game, you should! The final score was 307-242, with the Car Hops losing to the away team from B.C.

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Confession Time: I’ve always wanted to be a derby girl.  I want to learn how to take hits, skate with speed, and not be so scared of everything.  I know what many of my friends are thinking as they read this, that I am prone to some pretty serious accidents/incidents, and while that is true, it’s also true that you can get hurt at any time in your life.  I need to learn how to take life’s hits, as with this last illness, I’ve become a lot more anxious and afraid overall.  Even though I do move on from these challenges, I need that constant reminder that life hurts, and when it knocks you down…well you just get right back up.  I’m going to try and get out to Lloyd’s a few times, skate around and see how it feels.  I’ve been on roller skates before, and ice skates, so it’s not like I’ve never had any experience.  If things feel good than maybe I will check out the next Fresh Meat Camp, and spend three months in an intense training period.  And having people think of you as a bad ass is kind of cool…..as my bad ass quotient is currently quite low.

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Hell, who knows….maybe one day I will be one of those ladies on the track, with a Piper to serenade my entrance!


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Similarities and Sadness

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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……


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One week

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I know we say this all the time, but I have no idea where the time has gone.  My first follow up is next week on May 2nd, early in the morning.  I’m telling myself I will be ok, but my attitude lately says that I’m buying none of this bs.  I’ve been a bit up and down with my emotions, lacking sleep, and been falling into multiple depressive episodes…hell, I am probably just depressed.  I only seem to be happy when I am around certain friends, as they can distract me from myself, which is pretty consistent with depression. 

Looking back, these past six months have been somewhat comforting, which is odd, as I don’t like unknown situations, ambiguity, or being uninformed, but in this situation I am happy to not know a damn thing.  There is a comfort in being a bit ignorant, because next week, good or bad, I will have more information.  And even more when the test results come back at the end of May. Of course everyone I know hopes the results are good….but what if it’s not?  What if I have to start  this whole circus again?  What if I have to stay as a patient at this clinic for years?  What if things have progressed even further?  So you can see why not knowing is a comfort to me, it reduces my anxiety.  I know I am luckier than most people who deal with these kinds of situations, and I try to remind myself of that fact daily, but every detail of next week’s appointment still weighs on me heavily.

What’s even scarier, is that people would use this comfort zone to avoid their yearly paps, or their follow up colposcopies (if they are as unlucky as I am).  I read way too often of people who are not ashamed to admit they are avoiding going for a pap, as it is embarrassing, uncomfortable, or awkward.  I don’t even know if they realized how ridiculous that is, or how dangerous a game they are playing?!?  And that anyone thinks a world exists where people aren’t embarrassed on a regular basis? That seems ludicrous to me.  Avoiding paps has become a serious epidemic, and if my situation makes them rethink that idiocy, well then it makes suffering a little less horrible.  Even though I am terrified of next Friday, of course I’m going to go, avoiding the appointment would only make a bad situation much worse.  I’m also a huge fan of “everyday bravery”, and this is a prime example of that concept, which is in contrast to my weekend exceptional bravery of Grizzly Bear fights, cliff diving, and  drag racing 😉

Side note: you can’t fix things for someone who is depressed, you can only try to be there for them.  It’s the hardest job in the world to just listen to someone, and really just sit and say very little back. Be prepared that if you offer a bit of kindness, or lend an ear, it may open a bit of a flood gate, but no one should fear intense emotions.  To those who are depressed, remember, it is never shameful to ask for help, to take kindness when offered, or even ask someone to just come over and sit with you, above all, you need to do things that make you happy. 


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Protection

Today something interesting happened.  I was seeing my massage therapist, the first time in over a year, and she immediately knew something was wrong with me.  She noticed that I was hunching my shoulders (mentioning I looked a bit like a linebacker, and that I was protecting my core.  When I mentioned the LEEP procedure I had, and the year of testing in my abdomen, it all made sense to her.  I was protecting myself.

I guess it should really come as no surprise to me, as I have done this kind of protection before.  I’m very aware of how I favor my right leg, ever since the knee fracture and surgery to repair the damage.  The key here is that I am aware though, and I always have been, right from the moment I was allowed to try walking again.  And I didn’t allow myself to put more strain on the opposite side of my body.

I wonder again if this is something that comes from the vulnerability you feel from gynaecological issues?  Maybe it’s feeling so small and scared of what’s happening in your body, that you begin to slowly close up inside?  The big C word?  Who knows.  All I know is that I was not aware that I felt I needed to protect such a specific part of myself from the world.  I’m highly self aware, and yet something so important about my body escaped me. I think it’s this line of research, a more mental component that really needs to be researched.  I can’t imagine that I am the only woman who acts this way after going through dysplasia, and I would bet it’s even worse in those who went through cancer treatments.


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I’m not sure what’s more important….

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…protecting myself from life, or actually living.  There are two really difficult parts of going through major trauma or illness.  One, is trusting that you can actually be a part of life, and the second is trying to control your depressive tendencies, and focus on more positive things.  Life doesn’t happen when you are ready for it, and especially not when you are prepared for it. For about a year I put my life on hold, even though the medical staff told me to live like I normally would.  But how can you not put your life on hold, or hide from the world when things get rough?  How can you just move on knowing that at any moment the doctors may come back with something far worse?  Well, you just have to, otherwise you are stagnating.  Since January, I’ve felt like maybe I can move on, and that is in large part to the ladies at the support group, who are an example to participating in life even when it seems like a waste of time.  I see them living with far worse situations (and realistically I know they are likely as broken inside as me), but they are bravely accepting their situation and trusting in good things.  It’s really all we can do, any of us, is live.  Is this easy?  No, of course it’s not, but as I said earlier, life doesn’t wait for you to be ready, and life isn’t inherently good or bad, it just is.

Ideas like this scare me, being normal scares me sometimes….. Trusting that I am making good decisions, and taking care of myself……doing what I need to do at any given moment, and just being normal.  That word comes up a lot in the support group, “normal”, like it’s something that is actually defined and real, like any of us know what that really is, normal.  I keep being told I am normal, that I react to life like anyone else would, but my lack of trust is strongest with myself, so I am not sure I believe the ladies when they tell me I’m okay.  I find it difficult to be vulnerable with others, though I am trying to accept that no one is really out to hurt me,  and that I need to put myself out there to the world, accept that I may get hurt from time to time.  I guess maybe that is normal…..

Farley

The above picture is of Farley, he was diagnosed with cancer in his hip and was given six months to live, he is now at two years.  He doesn’t know that he should be sad, angry, or curse the world for his misfortune.  He just knows he was once in pain, and now isn’t, and lives in the moment.  We can say it’s because he’s a dog and doesn’t know better, but it’s also maybe a lesson that we can all learn, to accept life and change our attitude in response to it.  Easier said than done, but being negative doesn’t really help any situation I’ve been involved in to be honest.  Sometimes you have to accept the bad situation you are in, and try and find the good around you to get through it, and trust that….well, just trust in general that life isn’t out to get you.


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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.