Tuesday, 29 November 2016
Wednesday, 26 October 2016
As my two boys flitted around from toy to toy, enjoying themselves but being wary of the babies and not getting in their way, I couldn't help but hear a lot of the chatter from the other mothers. Talk of losing the baby weight finally, the trials of going back to work, something about the fathers... I tend to try to block out when people talk about their husbands... I'll tell you why in a moment, but first, my first thoughts as I heard their banter.
The women spoke to each other with such tension about how they would breastfeed while trying to work and how exhausting it is to "try to do it all", and all I'm thinking is, "I wish that was all I had to deal with." I found myself wondering if they would react the same way if they knew what some parents go through that are their age. If they had a baby and were trying to figure out how to get to radiation appointments. If they had a toddler and needed to get their port flushed. If they had to miss reading their children bedtime stories because they were sick from chemotherapy. If they didn't have a choice about breastfeeding because they no longer had breasts.
I'm not saying their issues are not valid. They have every right to gripe about the stressors in their lives, we all do. What I'm saying is people constantly look at me with wide eyes and respond stuff like, "It puts things into perspective", when they hear I have cancer. I know what they're getting at but does everyone really need to have that reality check? Why can't I wish that that was the only problems I had and not feel guilty that if I did mention my cancer that the ensuing gasps and pity party would follow... and they most always do... Can't I mention my cancer and not have them instantly want to take back all their griping? I'm jumping around here... Let's backtrack to another train of thought for a sec.
The husband thing. I don't like listening to when strangers talk about their spouses, especially to other women because they badmouth them so much. They complain and bitch about so many things, and the listener responds like it's an acceptable occurrence!! A husband is not your "biggest child", and if they act like one, tell them to grow up or get out. Your husband is your partner, and if you guys don't understand that, then it's time to start talking to each other. It's okay if you have chores split as best as you both can manage, but don't act like a marriage is babysitting someone for life. And don't bad mouth your spouse behind his back like that. That's horrendous! If you say stuff like that, especially around your kids (!!!!), then what picture are you painting of the "love of your life" to people? You may not like it but you guys need to get to marriage counseling, and that's fine. Every marriage is different and you both need to learn how to communicate with each other.
Anywho, that's some rants for now... Now bed...
Monday, 12 September 2016
Tomorrow is an anniversary for me. It's not my wedding anniversary, not my birthday, nothing like that. Tomorrow will have been 6 years since I heard something. Since I heard that the lump in me was cancer.
I've had lots of different chemotherapies and radiation. I've had days I couldn't get out of bed for more than to go pee. I've had days that I desperately wanted to be normal again. But I never get the typical normal life again. Even with stable scans my life won't be like the average 35 year old. I have cancer. I'll always have cancer. But I'm not cancer.
I play with my children, I play with my husband, I live, I breathe, I do my best to be present. I've had a couple years with no tumours but that time is gone. Now I hope for years of stability, for I know not when the chemo will fail me.
6 years. That's more than a lot of my friends were given. Happy anniversary.
Saturday, 10 September 2016
Tuesday, 23 August 2016
Thursday, 11 August 2016
Wednesday, 10 August 2016
A friend had started up a GoFundMe page for our family, but it's not really taken off. I'm not a cute little kid in need, I'm not totally bed ridden yet, so I don't get a lot of funding coming my way. A lot of people don't think I'm sick when they see me. My hair is coming back (thanks to a lovely lady, it's blue and purple currently), I'm looking healthier because I've gone down almost 4 pants sizes, I'm not displaying the tired, sunken, daunted appearance that most associate with terminal cancer. In fact, at first I didn't want to go near fundraising for two reasons:
1. I'm stubborn. I've worked for what I've wanted since I can remember. I would pet-sit, had a paper route, made/sold crafts, got a job in the school cafeterias at lunch, had an after school job, frig, I always had a job, I was always earning my keep, I had to go on EI once and hated it. Now, I need help because I can't just go out and get a job. I can't seem to sell my art because it's so easy for cheap crap and cheap crap artists to flood the market that quality handmade items are deemed too expensive. This leaves me with basically asking for help because my husband's salary is taking a hit with all the extras that have popped up because of cancer.
2. This is going to just seem pessimistic to many of you, but it really hasn't given me many signs to the contrary. People don't give a shit when you don't look like death with cancer. They don't understand "living with cancer", the mass populace still thinks cancer is curable in all forms if caught early. Stage four breast cancer is not understood, breast cancer is over used to fatten corporations' pocketbooks with that fucking pink ribbon/save the tatas/save second base/etc bullshit. Once you get passed that, my other thought along the same line, not enough people really want to help. There's been so many con-artists that they just think people want free money.
Now I'll tell you why I agreed to fundraising.
I had hoped, hoped and hoped, I was wrong. I hoped that people would support me as much as others that are/were in our community. I saw friends helping raise over $10,000 for people so they could go on family vacations, pay off cancer bills, just not have to worry about money. And those people weren't even terminal! So I hoped we would be able to have the same happen to us. I mean, I have hundreds of friends out there, lots of people that say they want to help out, so why not? I could take the kids to Disneyland or Disneyworld, my hubby and I could have a special night to ourselves without incurring more debt, we could pay down the bills so that his salary was more than capable of handling the surprises and fumbles along the way... I actually got excited. Then I saw exactly what I had originally thought come to light. People say they'll come but they don't. People say they'll support, but they won't. I can't expect the same people that actually commit and keep their word to support me and my family. That's a burden I don't want to place on them.
Not everything is dismal, however. Like I said, we were able to go to Upper Clements Park and another friend let us know about a great place in PEI that has something available for terminally ill people and their families. We'll probably be digging the hole deeper, but we'll be having memories made for the kids. Things they can look back on and be fond of. I'll find solace in that.
Sunday, 24 July 2016
Saturday, 23 July 2016
What surprises me? People actually being nice to others and not wanting something in return. This includes people taking the time and effort to make meals for my family, taking a moment to call/text/msg me or Mike to see how we are actually doing and not assuming, people that follow through, now that really surprises me lately.
It's come to the point that I see people that understand how the shadow of death looms over the future of people with late stage cancer and I am in awe. I have seen some friends get things they so justly deserve: family vacations, help with child care, and even help with paying off debts that got out of whack with their diagnosis. Cancer happens. None of us did anything to deserve it, like you insinuate when you tell us what diet will cure us, like when you tell us of all the things to stop because you saw a hoax video that you now take as the Gospel truth, when you look through us as we tell you we are still trying to live. You might mean well with your pseudo science, but you're making a bad situation worse.
Then there's the other side, those that refuse to admit we're deathly sick. This is why I'm so shocked when I hear about people that "get" what it's like to live with ailments and don't judge a single ounce. They just act like we should be able to do everything, we're making a mountain out of a molehill, or compare us to people without terminal/permanent illnesses. First off, no one person is the same, and we all have our difficulties in life. Now, remembering that we all have issues we're dealing with, start envisioning some of the complications that illnesses add to that. The constant appointments, the tests, anxiety waiting for the results, the defeat when things are worse, the brief breath when things are okay knowing that could change in a heart beat, the pain, the mental confusion, the exhaustion, the constant questioning of self, and so much more. As much as one tries to convey what reality is for these people to understand, they don't get it, and likely never will.
I am also surprised when someone doesn't turn the situation to about themselves. Trying to make the victim be the cause of their pain, trying to make the patient be the fault in their life. It's common... all too common. People would rather point out "all you have to be positive about" instead of admitting you might have a reason to be as depressed, sad, angry, upset, etc. They also like to start fights when there is no reason for one other than that they want the focus on them and not one second on someone else. They're more important, the world must bow to them.
So, yes, I am surprised when people are nice to me and my family. Especially those that do not know us that well. I'll be thankful every time I'm surprised, and try to not wallow in the times that my "normal" surrounds me for long periods of time.
Thursday, 14 July 2016
It's been a year since I started my chemotherapy for stage 4 breast cancer, today. 12 months. At least I'm here to say that. I'm able to say my med team works very hard and looks at all possibilities for my treatment. My kids don't fully understand but they know mama is trying to be here for them.
Soon, I'll find out if I get a slightly longer break from treatment or if we're starting right back up again. I've still got a few friends that the longevity of my diagnosis hasn't chased off. They understand this isn't a one month, one year, one decade thing... I hope I get a decade or six.
I think that's one of the most annoying things (other than the cancer/treatment itself). Trying to explain to people that this is a lifetime thing, like my back/shoulder injury. I'm not being negative in saying that, and telling me I'll beat this isn't a positive response. I am thriving. I am living. I'm not curling up in a ball and stopping my life. I am giving cancer a middle finger and doing my best to have a life. And I have many reasons to: my husband, my kids, my friends both alive and gone, and especially because of a promise to one friend. He's gone but he was so scared when he heard of both my diagnoses. He knew what it was like growing up without his mother and it hit him in a different way than other friends. I promised him I'd stick around. I just wish he was he to see me keep it.
Thursday, 7 July 2016
I'm mentally exhausted. I lost another friend today. Too many good hearts being lost, too many bright flames being doused. It makes my heart and my eyes ache.
I need to ask that my friends do their best to stay alive from now on. I don't know how much more bad news I can take
Monday, 4 July 2016
For a second I'll let you into my mind, here's my daily thoughts:
I'm so tired, why can't I feel normal today? I actually slept all night for once, why can't I get more energy?
I love my kids...but they're assholes at times...but I love them to bits.
I feel so bloody lazy, why can't I stop hurting long enough to get (insert basic household chore here) done.
Why does that hurt? Is the cancer spreading?
I hate you, idiot that caused the car accident in '08.
I love Mike, why the hell does he put up with me?
I wish I could draw more.
I wish I could work.
I miss being really active and fully independent...
I wish there was some way I could help us financially.
What if I need to go back on iv chemo? I won't be able to watch the kids for days, Mike would need time off work that we can't afford, can I mentally deal with the way it makes me physically feel again? Would it be better to just let the cancer run its course?..
Thursday, 30 June 2016
Yesterday I broke down. I literally crumbled into a ball and bawled my eyes out. It was an ugly cry. It was a release. I was doing everything wrong, forgetting everything, at least I could say the kids were safe and sound.
My depression became real to me in that moment, curled up in the kitchen next to the sink of dishes I was trying to clean. My memory is messed from so much chemotherapy and stress. My body is still exhausted even though I've been on about 3 weeks of my 6 week chemo break. My back and shoulder give me more pain by the day. I have to decide if I want to risk another surgery and have my breasts identical or play it safe and have them slightly disproportionate. I'm constantly reminded the realities of my cancer because I need to explain it to everyone I meet, even doctors don't understand stage 4 breast cancer. I had a few friends try to help us raise a few funds to help us be less stressed, but some emergencies depleted that quicker than I ever imagined. Another friend started a GoFundMe page to try to get us some assistance, but that's not getting any support...which is completely disheartening. My colouring books that were designed to help my family aren't selling, just another kidney jab to my life.
I'm feeling like a failure. My attempts amount to falling further behind. My mind makes me forget important things/dates at the drop off a hat. How am I supposed to be a functioning adult when my injuries from the car accident and complications from cancer keep me from doing basic things, like remembering, cleaning, walking...I'm stopping there before I further depress myself.
I wish I had the answers. Until then I'll wait to see if the antidepressants start working soon
Tuesday, 14 June 2016
YACC is the feeling of not being alone. It brings together those of us that have cancer, had cancer, live with cancer, love someone with cancer, support someone with cancer, and many more combinations. We have a starting point to understand what life is with cancer because of them. We have a way to unite and share because of YACC. YACC gives us the connection that we thirst for the moment we hear the words "You have cancer."
YACC is the middle finger to the idea of being the typical cancer patient. It helps us see people enjoying life while their body scans light up like a Christmas tree. We see life in the defiance of the the shadow of death that lurks in our bodies. YACC lets us believe that we can have life in this vortex of despair.
YACC is the sorrow of seeing others leave our community. The grief of being here while others did not make it. But, through us, they are celebrated. We honour them by keeping the truth of YACC alive in our hearts. We miss them as they would have missed us. We do find solace in the fact that we can grieve together, that we can cherish our times with the fallen as a community and not just wallow in our darkness alone.
YACC is a heart that welcomes us the moment we connect. The moment we are joined by email, text, online group, or in-person, we are one in the same. We are loved, we are understood, we are united. It is the one point of wholeness. We are unquestionably one. YACC is devoted to us as individuals and as a group. YACC is accepting.
What is YACC? I am YACC. We are YACC. YACC is living after hearing the word cancer. YACC is life.
Might sound a bit creepy, but honestly, until you are a part of YACC it's hard to understand. I hope you never need to comprehend this feeling, never need to answer the question "What is YACC?", but if you to remember one thing:
"Any cancer, any stage, YACC's got your back."
Tuesday, 24 May 2016
Depression can come on in many ways. It has different effects on the body for each person. Mine makes me low, I forget to eat because I'm not hungry, I cry a lot (reasons to follow, but they linger in my head like a pet dog that knows you're about to eat), I show no emotion, I pull out masks from my past so that I can appear "normal" and not have to deal with the "help" people think is useful... There's more but it's digging a deeper hole just typing this.
Some of the reasons I'm depressed lately, that I have been able to identify, are as follows. (P.S. thinking about the reasons causes the crying).
- Bills are adding up quick, making our savings disappear quicker than we can build them.
- I can't even try to get a job to help with income.
- Not being able to be self-sufficient and care fully for my children without assistance.
- Seeing that I have less support than so many others, including those I have always tried to stand by
I've come to the point that I don't know why I try, any more. I feel like an idiot for asking for help and that I should never have asked people to care about me. As I sit here feeling like pulling my hair out and throwing myself away, I feel everything and nothing. I feel tired of facades. I feel tired of games. I'm tired of having to try so hard to just get thrown aside. I'm just tired of life.
Friday, 15 April 2016
I find I don't turn on the tv for background noise anymore. I sit and listen to the hum of the refrigerator, the whirr of the heaters, the purring of the cats. The silence isn't as evil in my ears, any longer. I sit and eat in silence, I sit and check Facebook or emails. Sometimes I cry, sometimes I just sit, soaking in the lack of sound.
I don't know what's to come but silence isn't so hard anymore
Tuesday, 29 March 2016
You're a painter, you've finally decided on your masterpiece, your life's work. You start setting everything up, doing your best to get things in order, and start painting. As you paint your brush suddenly falls from your hand. In disbelief, you look at your hand, it's not working right. The brush is on the floor, paint splatter on the ground. You look at the painting, there's now a line of paint down the middle of it, painfully obvious that it is out of place. No matter how you look at things, your hand isn't gripping the paint brush, and you're feeling stuck, with your beautiful vision left unfinished.
You see doctors, tell your family and friends, and try to start some treatments. You get lots of "advice" from non professionals. Some tell you to just pick up the brush and paint, you'll get through it, eventually. Some are convinced that if you don't listen to the doctors and just rub mint on it, you'll cure yourself. A few do their best to be there for you, but they just cannot relate on any level. You keep going back to your painting, picking up the brush as best you can, and try to paint like you used to.
One day you walk into your studio and there is a small group of people there. You look around nervously but take note of one thing: they all have a painting with a line of paint splattered in odd areas. One by one you all sit in front of your paintings and a person comes into the room. They guide you through discussions on your works. Everyone talks about what they were going to paint before their brush fell. They say how that line of paint has been haunting them ever since it showed up. There's tears, their laughter, there's a lot of silence, but it's never awkward. Eventually you realize that the line of paint doesn't have to be a blemish, it can be part of your painting. You don't leave the session with all the answers, but you connected with others struggling like you. They might not have the line of paint in the centre of their work, it might be blotches instead of a line, but you all had the brush fall. You finally have people you can talk to that know what it feels like to look at the paint on the floor, seeing the brush roll away.
Later on that year there's a gallery opening. Everyone has their paintings on the walls. Some are completed, some are barely started, some are almost finished. All the painters are there, they're milling about, chatting, laughing, crying, some even in serious debates. As you look around you see it's only painters. Every artwork also has the paint that was out of place. Some have worked it into the painting flawlessly, some expanded on it, some tried to just paint over it, others have left the odd paint alone. Most of the paintings have their artist's names written clearly near them, some are labeled anonymous, and a few have big neon lights spelling out the names of the artists, inviting you to talk with them about their experience painting. As the night rolls on, you join different people and discuss different topics at each group: how you watched the brush fall, different mediums you started trying when painting got difficult, methods doctors are trying to help you with your hands, different canvases and how they affect the paint, what you can do to help insure the paintings, and even what you want done when you finish painting. Some talks are sad, some are extremely educational, and a few are just plain fun. The night grows late, a host comes out to thank everyone for coming. A few words are said for those who are not in attendance. Several people could not make the journey due to family or health issues, some have felt they didn't need to attend gallery openings any longer, and some have passed on, leaving the most beautiful paintings that touch the hearts of everyone that view them. The gallery opening closes with music, dancing, laughter, and tears from knowing you won't see each other in person for a long time. As much as there might be sadness in that the gallery opening is closing, you still feel full of love and joy from getting to be with others that understand your plight. You excitedly start planning your journey to the next gallery opening as you tote your painting back to your studio and try to pick up your paint brush.
Some of the painters you met had recovered fully, their hands were back to normal. Other people, the affliction grew further, their arms, legs, or necks are now unable to fully function. A couple people just started their journey with the issues of their hands. Some have been living with the affliction for a long, long time. But no matter what stage the others are at, you all support one another. You now know you have those people to fall back on when you just want to throw the paints and brushes, scream, and cry. They will be there when you get good news, they'll empathize when you get bad news, they'll be there whenever you need them.
That's what YACC retreats and conferences are like. No matter what, they help you keep painting, because no matter where that splash of paint is, they help you see that it's still your masterpiece, and you are one hell of a painter.
Saturday, 13 February 2016
I hit the jackpot with my husband. He's someone that is responsible and caring. Examples? Start with when we met. He knew that I was dealing with a horrible divorce, but didn't care, he was willing to work with me and help support me through that terrible experience. How about the fact that after we married I was hit in a car accident and became permanently disabled. He's never made me feel like less of a person for not being the independent person I once was. Then there's the parenting side, he gets up with the children when they wake up in the middle of the night. He plays with them even when he's tired from work. He can't wait to get home to see us. We can be together for days on end and not be sick of each other. We'd actually continue to stay next to each other for days on end without a single thought of annoyance.
Throw cancer into the mix. He stands by me, supports my decisions, listens to my rants, still tells me he loves me, grabs my butt and tells me I'm beautiful, and never once looked at me differently when I lost my hair, eyebrows, eyelashes, looked like death warmed over, was stuck in bed, or had only one breast.
He still likes to get me treats, surprises me with tea, he steals kisses, gives me hugs. He loves and plays with his kids, but shares with discipline and responsibilities that come with having a child.
I win. :) <3
Thursday, 21 January 2016
As you may or may not know, I live with two types of invisible disabilities. The most common one that people are aware of is cancer. The less spoken affliction is in my back and shoulder.
Long ago, before cancer was handed out to me, there was an accident. There was a chain reaction created by someone else that left me injured. It's not an injury that's easy to monitor/explain, it is nerve damage. I now live in constant pain. In the morning I wake up with pain, in the afternoon I have worse pain, and in the evening I have even worse pain.
They haven't found a cure for it, the medical field has found some ways to help, slightly. I get nerve blocker injections monthly. These help make the pain more of a toddler's fury than a rabid badger being fed steroids. They only work temporarily, and the pain level goes back to being as intense as ever.
I'm not writing this for pity. I want you to understand something. Not all disabilities are created equal. I can walk, I'll even make it look like it's not causing me pain, but I've had times that my body almost fails me and I need to sit down quick or I'll fall flat on my face, from pain. Imagine that. You're walking and suddenly your body says, "No more". Can you easily live with that looming overhead? I have a disability permit because of this. I might start out okay when I get to the store, but line ups, avoiding crowds, even just walking the aisles might trigger my nerves to worsen beyond my capability to stand it. I need my vehicle to be nearby. Others have reasons that are invisible, too. Common ones are crohns and cancer.
Don't glare at someone younger getting out of a vehicle with a disabled permit. They have the permit for a reason. Be responsible for yourself. If you're not disabled, don't park in the spots for them. If you're not pregnant or with infants, don't use their spots, either. If you're not a senior, leave their parking alone. It's not that difficult. I know you're in a hurry, and you'll only be a minute, but a minute when you feel like you're being stabbed in the back with razor sharp daggers is an eternity.
Everyone is fighting their own battles, don't add to the attack.