Journal Entries

I'm going to start a new thing and see how it goes.  I have a new journal thanks to Compassion That Compels and I will be occasionally posting on this blog the entries.  Names may be abbreviated or changed for privacy sake, but I will be otherwise keeping the posts the same as the written entries.  It will give a further glimpse into my life and I find I still prefer writing by hand late at night, when I normally write in a journal.

Stay tuned...

Post Conference 2018

Mike and I were privileged enough to attend the 2018 Young Adult Cancer Canada Survivor Conference at the beginning of the month.  We had the chance to connect with old friends and make new friends as 99 survivors/supporters were in attendance.  I was able to help with making sure everyone had some fun by raising funds for a social event, karaoke (YACCaraoke), at Karaoke Kops. It was the hottest spot in St John's that night!  Huge thanks and much gratitude to the staff and owners of Karaoke Kops!

We were able to attend workshops and discuss matters that have come to light in the past year.  There was a panel, a Big Cancer Hook Up, and many presenters.  Saying the conference was a success for YACC and their ideals is a gross understatement.

The aftermath of conference is one thing that is never easy to deal with.  It's the pain of having to leave your friends for at least another year.  It's the fear of how many friends will die between now and next year.  It's the fear that this was your last year.  That's the thing about making connections: they're awesome and help alleviate your loneliness and fear of isolation, but you are brought into this circle because of a terminal illness, some of us get to stay around longer than others.  I could never say I regret any of the connections I've made through YACC.  I've cherished every friend that I've met through them.  I weep at their death because they had so much that they wished they could do and I weep for the hole that their absence leaves in my heart.  But they are still in my heart.  Always thought of and fondly remembered.

I try to soak in the energy that many gave over the conference.  The laughter and joyful jubilation that saturated us.  To take the tears that were shed in stride and try to remember it is for my loss I cry, that their pain is finished.  I giggle at the jokes we told, I hold dear the smiles and happy faces, I recall the strong hugs and high fives.

I will try to spread the happy.  I will try to remember it is okay to cry.

 

Me and Mike on the bus for one of the social events at conference

Love that we had the opportunity to fly with Porter Airlines

After Shock

Something that comes up with a lot of "lifers" or "thrivers" or those with terminal cancer* is that things are quite different from those with early stage or curable cancers.  We're the taboo cancer, the cancers that don't go away for good after our treatment.  Treatment is for the rest of our life, whether that is days, months, or years.  As much as people want to support you, the mass populace is all gun-ho to help the second you are initially diagnosed.  That's when they understand you'll be starting treatments so you will be sick or tired or busy with multiple appointments with multiple doctors.  Add a couple months and they seem to lose interest in assisting you with what really dogs many young adults with cancer: finances.  They are used to you having cancer now.  This is the After Shock of Diagnosis.

Cancer costs a lot.  It can cost your life, but before that there are expenses like: treatments that your province/insurance does not cover, parking, gas to get to the never ending appointments, transit passes, car repairs/maintenance from having to drive to those appointments, meals when you're just too weak or depressed to cook, childcare, and so much more.  All these things add up quick and your debt gets larger and larger.  A lot of young adults get diagnosed before they even thought of getting life insurance or they are diagnosed before the probation period and the coverage is canceled.  That means once we're gone our families will be left in debt.

I have killed my pride and tried the gofundme route.  I have asked for help.  I am fortunate that I have a few friends that are sticking by me but it's the same ones each time and I cannot see them go in debt trying to help me.  Will not rob Peter to pay Paul.  This is something that isn't going to stop, at least not until I die.  I really am running out of options, everything I'm attempting fails.  I cannot work due to injury.  I cannot sell my art.  I cannot sell my possessions.  I cannot get a gofundme to work.  Where do I go now?

Where am I going with this?  No idea.  I'm angry and frustrated.  I needed to complain. 

*A lot of people use different labels for living with cancer

Death - *some not so delightful language included

It's that taboo thing that most people will zone out the second you start to try to talk about.  It's that dark, looming shadow in the back of your head that comes out when you're at your lowest.  Death is something that we all will come to face but that no one likes to talk about.  I have to think about it.  A lot of my friends do.  We're terminal.  Despite all the other issues we may face, we will either die from our cancer, an accident, or if we're lucky from old age.

No what sucks?  I got cancer in my twenties, I never got life insurance then.  I was waiting for my 5 year mark of no cancer to try for something after having cancer, but at 4.5 years my cancer came back.  Now I'm terminal.  Does that mean I'll die tomorrow?  Hopefully not.  Does it mean I'll die in three years, who knows?  But I'm living with cancer.  I'm living with a ticking time bomb that no one has the defuse code for.  As far as insurance companies care, I'm already dead, they don't want to touch me.

So I have a gofundme going, I thought if I could get our bills down.  If I could take that away from the cancer, I would not feel like such an ass when it comes my time.  Cancer expenses aren't just chemo and the pills to help you cope with it.  Cancer is gas money to the hospital for all appointments and scans.  Cancer is daycare so you don't have kids in tow while the oncologist explains that the cancer is showing an "evolution".  Cancer is eating away all your savings so that your family is left with nothing afterwards.  Cancer is not having the energy to do things normal young adults can do on their own.  Cancer is not being able to make food some days and needing to rely on frozen dinners or take out.  Cancer is asking so many people for help that all pride is gone.  Cancer is bawling in a private place because you're tired of being tired, sore, and feeling like a burden.  So yeah...  I started the gofundme to try to make some of that horrible feeling go away.  Unfortunately it's not doing so great.  It was at first, but it's died down now.  It made one month less horrible, so I'm thankful for that.

Cancer is also sitting on the couch watching a show with the Grim Reaper eating popcorn as they watch the cells in your body trying to take over.

I will die.  Will I go to Heaven?  Maybe the afterlife is a bit different.  I believe Albert Einstein was the one that theorized that energy cannot truly die, it continues, it spreads out into the world and space.  The human brain is energy, all those electrical connections that make up you and your thoughts.  Perhaps that is your soul, the energy that makes up your brain, so when your body is returning to the soil, your energy, your soul, leaves your brain and drifts off.  Do you retain your consciousness?  Who knows.

This post is also inspired by getting too many emails and messages that people have died that I know.  Some from cancer, some chose their day to die and had their assisted deaths, some committed suicide, and some from horrible accidents or other health issues.  Either way, I'm surrounded by death.  It's around me and within me.  This is what I live with every day.  Don't take this as a sign that I'll be looking to make an end, cancer chose the wrong bitch to fuck with.  I like life.  I am married to my soulmate, I have great kids that are also assholes at times but I love them more than I can explain, I like cheesecake and rum too much to give them up forever like that.

I'm not sure how to end this post.  I'm not sure where I'm going from here, but I've put my thoughts out there, into the interwebs.  Farewell words I've typed, perhaps you will do some good out there.

Why Should You Shave for the Brave?

Wondering if you should participate in a Shave for the Brave?  Here's a few reasons to sign up for the razor:

• A shaved head is a great way to cool off in the summer
• Savings: think of all the money you won't be spending on shampoo!
• Less to pack. When traveling you won't need to remember a brush or comb
• No hair to hide your funky and classy earrings
• Saves time getting ready in the morning, no brushing or styling hair
• Shaving for the Brave means that other people are paying for you to get your hair cut
• As your hair grows in you can try funky colours and if you don't like them, you can just shave it off, again.
• Bald is beautiful: Just look at these ladies to name a few. Of course who could deny the beauty of Lupita Nyong'o or Danai Gurira
• Many women see bald men as attractive, just look at Dwayne Johnson, Bruce Willis, and Jason Statham
• You can cosplay a lot more characters
• Wigs look a lot better when you wear them without hair underneath

And one of the biggest and best reasons to Shave for the Brave:

All the young adult Canadians that you'll help connect through Young Adult Cancer Canada's conferences and retreats.  It'll give you the warm fuzzies ;)

Shaving and Spring Fair for YACC

What a whirl-wind this weekend was.  We had the Spring Fair for YACC and the Shave for the Brave.  My son and several others shaved their hair for Young Adult Cancer Canada.  I'm happy to say that the group raised over $2,000 together.  We had the Spring Fair to raise funds for social events at the YACC Survivor Conference this June.  The total for that has been $600 raised.  I cannot thank everyone that helped me and stepped up, asking if there was anything they could do.  I admit I'm extremely sore after putting on the fair and shave but I'll gladly take being in pain for several days if it means fundraising for YACC and getting the word out that the organization exists.

There's still time to donate to either event.  If you want it to go towards the Shave for the Brave please donate using THIS LINK, it's for Archer's Team.  If you want to host your own Shave, please check out the link in the first paragraph.

If you'd like to donate towards the social events, either send me a message or contact YACC and let them know that's what you want the funds to go towards.  There's a link for them in the first paragraph, too.

I hope that we get to do this form of fundraiser again, the vendors said they had fun, many were happy to hear about an organization like YACC, and it was great to see the smiles and hear the laughter of people working towards something they believed in.  Take care guys. xoxo

Bit More Explaination

I started a GoFundMe after saying "no" to it for a while.  I want to get out why I was saying "no" at first.  For one, a friend tried once before for me when the cancer came back and it was a flop.  This seems to be the norm for any personal campaigns for my family.  It's just the way it works.  Maybe it's because we're used to working for everything.  I was working in elementary school as a newspaper carrier, I had a pet sitting business, I made crafts.  One I could fully work, I had a job.  Then another job, and sometimes more.  I did manual labour, tech work, I did it all because I like earning my money.  I'm limited now.  Very limited.  I've tried to do more but physically cannot.  I need to accept that.

Now that I'm back on chemo, I tire quicker and quicker each dose.  I have three awesome kids that can be tyrants because they're all under 9 years old, they're kids, they act like kids.  The average mother will agree that the most agreeable child can become a tempest of doom in a heart beat.  Kids are growing, they get frustrated, they are learning how to express themselves, it does not always mean they found the proper way to do that yet.

My husband had started his career before we met and long before we married.  We had lots of plans and we could do them all on our own until someone caused a car collision and I was permanently injured.  Now I can't do a lot of the stuff I once could.  Then cancer compounded onto that.  This month alone, I have eleven (11) doctor's appointments and I'll be having a bone scan.  Bone scans take 4-6 hours depending on a plethora of variables.  I need child care for two kids for all of those appointments, I need gas to travel the average of 30km to the appointments (one way), I need to pay for parking (but I do get it half price at least), I have to pay for my prescriptions including chemo, thank heavens my husband's plan covers them.  (Before anyone asks I have to pay for my chemo because it's dispensed at a pharmacy outside of the hospital).

I'm the one that does most of the cooking.  Why?  My dad taught me how to cook and bake and I like doing it.  My husband does try to help when he can, he really loves helping with chocolate chip cookies, but I'm the cook in the family, that's our life.  So I get tired and fall asleep because my body can't take it any longer, what happens then?  If there's leftovers, they're used, if not it's one of two things: something my hubby is comfortable making, or take out.  Three meals a day and snacks can add up on my tired body.  We have been doing our best to make this strain less on me, but it still acts up often - who knew you had to eat every day several times! (HA!)

I have days I can't walk far because of pain.  I have days I can't move without feeling like parts will shatter off my body.  I have stabbing pain from the cancer sometimes.  All this stuff is adding up.  This is life with disabilities and cancer.  Some are REALLY good a hiding the issues they face and, honestly, we generally pride ourselves in appearing "normal".  I guess it's a case of masks.  Today my mask will not show my back pain is already a 6 on the scale of 1 to 10.  Today my mask will not show that my depression is kicking in.  Today my mask will not show the tears I cried because I feel like I'm failing.

This is definitely now a rant...  So this is part of the why I finally said okay to the campaign: It doesn't help my family if I'm prideful.  I cannot do what I used to.  I need help, I need to ask.  I just hope that people will step up like they've offered before, and if nothing else SHARE the campaign.

To find the GoFundMe that I started CLICK HERE

I'm really so tired that I'm not even proof reading this before posting.  My youngest is sick and I got to come back to finish this after I picked him up from daycare, got his fever down, fed him, and got him to have a nap.  I'm tired.  I'm going to have a nap and worry about supper after.  This is my day