Wish List: Vacations

Next edition to the "wish list" or "impossible dreams" I have in my head. This one will cover two biggin's!

As I finally did start to come forward about, the trip that our family took last January was very far from "worry free" for Mike and I. The kids did have a great time, of course, but I'm not getting back into this tangent... On to the wishes:

Big Honeymoon Take II
Mike and I have a dream vacation in the back of our heads for a long, long time... I think about 10 years to be honest. It would be to fly Westjet first class down to Jamaica, stay for 2 weeks in a butler suite at Sandals, doesn't need to be the top of the line, just one with a nice whirlpool tub and fully stocked bar lol. We love Montego Bay, it was our location for our honeymoon, but part of us wants to go to Negril and stay on the lovely, long beaches. I think if we could go to either, we'd be ecstatic but neither is obtainable currently or ever in the near future. And there would be an excursion we would have to do, we'd need to visit Appleton Estates. We tried to before and it stormed so we could not have the tour, very disappointing. At least we got to sample all the liquor and it was the only disappointment that trip. Ultimate vacation would also include us getting to have a trip to the spa, have massages and more pampering, whatever was available!

Real Worry Free Family Vaykay
Maybe this would be me just asking for more trouble but I really wish I could have the worry free trip that we tried to have last winter. Fly to a Beaches location with Westjet, maybe I should have just stuck with Jamaica for a location, maybe then it wouldn't have been a horrible like at Turks and Caicos. Details for this one if it was ultimate family vaykay would be things like, again, a butler suite. Two weeks would be amazing, in a room that had a separate room for the kids so we could have some privacy. We'd have a nanny for a night or two so that we could go out for a couple night once or twice, and relax as much as possible. I just don't want to end up in tears multiple times like I did last time.

These are all very expensive, not even slightly financially possible dream vacations. But like I said, these are my impossible dreams

Wish List

I've been up and down all week, emotionally, so I'm thinking as a distraction, I'm going to start posting a few extravagant, basically unobtainable wishes that I would love to have but will never be able to do/receive. Maybe post a couple dreams every day or so.

Renovate the kitchen. We have the backsplash to put up but that's it. Doesn't need new appliances, just new cupboards, countertop, maybe a spacial redesign, but we'll never afford it any time soon and I'll likely never see it.

Have a chairlift installed so I can go downstairs easier. I might have to make this happen no matter what... Which leads to the last one that I'm going to post today. I'll dream more tomorrow, but lastly:

Pay off our credit cards. Every time we start to get on track emergencies happen and cancer happens, leaving us with more and more piling up. I just don't want to leave so much debt because of me....

Cheers

The World to Date: A Rant

A lot has been happening over the last few months. The chemo over the summer did not work. We discovered that I had tumours in my brain. I had radiation, another chemo, the pneumonia twice in a row. I keep hoping to go back on chemotherapy and start shrinking the tumours in my lungs, liver, bones, and the mass on my chest wall. However, I keep getting delayed, and I have been delayed, again. My oncologist is nervous of a tremor I have in arm and is going to have my head scanned to see if there is another tumour in my brain. If there's one tumour, it may possibly be treatable, if there's no tumours, great, if there's mulitple tumours, it's likely not treatable and all chemotherapy will be stopped. Treatment will have come to an end. I need to wait on a scan to know if I have the chance to continue treatment or if this is it.

Because it has come to this I have decided to make a huge fucking rant post. My sister said to me last weekend she rarely hears me complain, well, I'm about to.

I'm frustrated that Mike and I always seem to get the shaft and have to work triple hard just to get what others are given. Things like the wish vacation that we were sent on last January. Many were so happy for us and we were so excited. The entire week was stressful and upsetting for Mike and I. Yes, we can easily say that the kids had a blast, they did not have to deal with all the upsets that we had to constantly argue about, the problems that kept arising over and over again. The most relaxing time of the entire vacation for Mike and I was the flight from Turks and Caicos to Montreal.  Everything else was a aggravated, disappointing mess. I was in tears there more than once. Not a worry free vacation at all.

And it's not just that. Constantly we go away and we end up with the hotel room that is falling apart. Our plans are destroyed and given no compensation or remorse from the parties involved. Oh, sometimes Mike and I can complain to the point of a slight rectification, but only if we're willing to fight, and it's always a fight.

I might be finding out tomorrow that I'm at the end of the line. I might not get to ever try to go on a real worry free vacation with my family now. I might be preparing for the "lasts": the last Christmas, the last birthday, the last summer vacation, if I haven't already passed that line. And I'm angry. I don't want it to be the end of the line. I don't want this to be all that is available, but it seems to be the way our lives go. Yes, I probably sound like I'm whining, but right now I don't fucking care.

I know, too, that I have had small fortunes sent my way. I have several friendships that have developed due to cancer that I would not give up for the world. Whether we speak only on Facebook or in person, I cherish these friends, dearly.

Honestly, I want to type more. I'll have to do a continuation. I'm too sore and the painkillers are not kicking in all the way yet. But for now you have my bitching notes. And I'm going to remind people that I don't want to respond to 500 "any news" messages, tomorrow. I post stuff when I'm ready

Break Down of Stage 4 Breast Cancer a la Julie

A movement is starting to trend for metastatic breast cancer. Many of us are beyond frustrated with misinformation and ignorance of metastatic breast cancer, and breast cancer in general. Facts are now being spread to help people realize that any early stage breast cancer can develop into stage 4, even stage 1, we just don't understand why or how. This has been "triggering" some, apparently. I'd try to empathize but this is reality, you don't get to keep your head in the sand. No one wants an early stage breast cancer survivor to find out they're now metastatic, but the truth is 20-30% of them will. And that doesn't even include those that are diagnosed stage 4 denovo (from the start).

Being stage 4 has not just flipped my world, it's made a lot of it crash and burn. I've lost my hair 3 times now as stage 4. Last night I went to wash my hair and it came out in clumps from the radiation treatments for the tumours in my brain. I looked like some massacred doll when a 3 year old found a pair of scissors. Yes, it's "just hair" but having hair makes you feel a little normal for that split second that you see your reflection. Now I've got a shaved head so I don't look like a living Halloween decoration.

I've gained 50 lbs because of treatments this year. 50 fucking pounds. I've never weighed this much, even pregnant. I'm fat and I hate it for more than one reason. Don't say it's just weight, don't worry about it. Being fat makes more complications in my life. For one, clothes. Nothing fucking fits and I'm not about to walk around in muumuus. Another thing is it makes my back and shoulder pain worse from the non cancer shit I get to deal with, so that's more fun. It puts more pressure on my lungs, you know the ones filled with tumours and now with pneumonia because my body hates me that much. And I already have tumours in my liver, I don't need it to start getting fat. Not to mention just body image in general. I even gave up on having breasts because I found out the cancer was growing around and under my implants. It was just better to take them out for easier monitoring the cancer, plus it was causing pain with the pressure that would happen from compressing the tumours.

Lungs, yeah. I miss breathing. Coughing constantly because of the tumours and now I have pneumonia for the third time this year. I can barely do anything without becoming breathless and sounding like a 10 pack a day smoker.

Independence. I used to be so independent. I could do whatever I needed, myself. Then the car accident. Then cancer. I can't drive now because of the risk of seizure until I get a clear MRI of my brain. I can barely walk because of the extra weight killing my back and my lung refusing to process oxygen. So I get to ask for help with.. everything. I can't even cook well right now because of the energy and effort. I'm so tired of needing to ask for help. I hate it. I hate it so much. I really don't think people understand how much it kills my soul having to ask for help. A lot of it, I know, is rooted in the fact that I never want to be like my mother, but that's another rant for another time.

I'm constantly on the edge, wondering if the treatments will work. The list of options is getting shorter. I constantly get to try to figure out if I should try to live life and push treatments or take treatments and miss out on events. I get to be the one stressing over am I asking too much? Will pushing a chemo make me progress to the point that I cannot recover? Will I regret not being able to be a part of something that I could try to attend but only if I push treatment? Constant fear of fucking up is a part of my life. And making the wrong decision could make that life a lot shorter.

Having cancer has eaten away at more than just my body, it's taken away a lot of our finances. Yes, even though we are in Canada and a lot of my treatments in the hospital are covered, there's still a lot that costs us and takes away from everyday finances. There's prescriptions for one, constantly getting drugs to help with the treatment. From pain killers, antinauseates, steroids, constipation, diarrhea, and so much more. Then gas, parking, trying to keep up with daycare, food because you just cannot cook for various reasons, hospitalization messes up the finance plan, and so much more. People ask how they can help and it's hard because, really, you need financial stability and no matter how many things you try to cut or save on, something always depletes all your money. Our savings died long, long ago.

So this is life now. I put this out there to let people have the opportunity to understand. I hope that it helps.

By

What's your life motto turning out to be? "There's more fish in the sea"? "Tomorrow's another day"? "Be the good in the world"? My husband's and mine has been looking to be the same for the last decade: "We'll somehow get by." This could easily be exchanged with "We'll find a way," or many other close clustering of words along the same lines. But the problem is, we're getting tired of just "getting by."

We go to the doctor's and find out that the cancer is spreading, onto a new treatment: "We'll somehow get by."
We look at our expenses increasing and I still cannot work: "We'll somehow get by."
The new medication needed for treatment is another expense for us to shell out for: "We'll somehow get by."
I'm too tired or sick to cook and my husband's exhausted from work and chasing kids, order food but it's costly: "We'll somehow get by."
Appliances break: "We'll somehow get by."
Childcare costs increase: "We'll somehow get by."
We lose a main source of help and childcare assistance: "We'll somehow get by."
That new treatment isn't working, try another: "We'll somehow get by."
Kids need school supplies, clothes, broke something in the house..again: "We'll somehow get by."
Animal needs to go to the vet: "We'll somehow get by."
Our hopeful vacation has us stressed out over multiple things that won't stop or be corrected: "We'll somehow get by."
A much needed quiet night in gets turned upside down by an accident or sudden change in plans: "We'll somehow get by."
I need to go on another new treatment and the side effects will potentially destroy chances to take care of myself, let alone children: "We'll somehow get by."
I get admitted to the hospital..again: "We'll somehow get by."

We do get some positive things that happen, times that we think we'll finally get a foothold on our lives. Things do tend to go the most sideways, then. Extra things suddenly break, go missing, or simply go wrong. We're trying to see the bright side, but sometimes the brightness is the flames of our hope burning like a forest fire. The warmth of the chaotic fire might take off the chill of our despair but it doesn't help with the issues that sparked the flames.

We're trying. That's all we can do. But it's starting to feel like that all we do, and it's making us feel less like living and more like barely surviving.

Wanted: Worry Free VayKay

I need a vacation. I mean a real one. One where my hubby and I aren't frustrated or arguing with staff of the resort. One where things go smoothly. I would love it to be a location that we could take the kids with us but still have the opportunity to have couple time daily. A place to have drinks on a beach or by a pool. A place to swim and laze in the sun or dance in the rain. A place that is quiet at some places for relaxing and that is bouncing at the places you want to party.

My head is aching thinking about this.

I need a vacation where my only concern is getting the children to listen and go to bed before 9pm. Where our only fear is the kids waking at 6am. Where our only problem is having too many places to choose from to eat at meal time. A vacation where staff don't ignore us, where they are happy to talk with us and make sure we're pleased with everything. I need some place that will make sure we're always happy. I need a place that is willing to bend over backwards to ensure that we have anything and everything we need, no bickering with us on the issues when we present them, just fix the issues. Or better yet, don't let the issues happen.

I need a place that when we get back I won't have to keep repeating the response "The kids loved it" when people ask how it was. For the real response is that the time was heartbreaking and not relaxing. We made the best of it. We tried to put on a happy face for the kids. But that's not the responses the one asking wants. The kids were content and at least we have that, so that is what they are told.

It's also required that the timing work with my treatments... I am getting behind on those enough already with having pneumonia twice in 6 months. So this is getting more difficult to think of a way this could ever work. Money is too tight for now, but we'll try to save. Maybe some miracle will happen and we can go sooner. Some major sale happens, perhaps. Until then, save, save, save. It's better to set aside five dollars and slowly make it than to not put anything aside at all.

But I really need a vacation.

Thanksgiving post - a little delayed

Thanksgiving had been last Monday, here in Canada. I was filled with turkey on Sunday and we rested most of the actual holiday. I was messaging someone that I realized might not have seen my posts about cancer progression and from that conversation came something I thought would be a good blog post.

I hate cancer. It will one day take me from all I love, it has taken loved ones from my life and from the lives of others.  For now, I am here, so I can say one of the oddest things to ever come from me: there are ways I am grateful for my cancer. I'm not happy I have it, I'm not thrilled that it is trying to spread, but if I had never had cancer there's a few things I wouldn't know or have.

Because of my cancer I have many friends across this nation and the world that I would likely have never even known existed otherwise. I have had the rare and wonderful opportunity to meet others with various cancers and share with them our laments and our joys. I have several friends that do not have cancer but because of the way it helped connect us, we now have a friendship that I could not of dreamed of finding.

I know how much my husband values me. There's always tests in a relationship, there's stressful times and many tribulations. Despite all the horrors we've faced with cancer, my husband cares for me, his love has been unwavering. He shows me daily that he loves and cherishes me.

I've seen the kindness of strangers. I have been able to witness and experience the love given by someone that does not know more than your name and maybe a brief account of your affliction. Love coming from someone that has no connection going in is beautiful and becoming more unique. Although in my mind, if someone needs and you have or can help then you do, it is not the norm. That is something that I have slowly come to realize, but seeing that there are still some out there that feel the same way warms my soul.

I know that I am capable of being stronger in spirit than I would have thought. There have been times that I thought of the next treatment and my shoulders would drop, my head would hang heavy, and my breath would be no more than a resound sigh. There were days that I wanted to say "no more", just stop everything because the feeling I would have to endure was abhorrent at best. But I did take that treatment. I did bare the effects and make it through to the better days. Part of it was for me, but part of it was for my family and friends. I'm not saying it to place any weight on their shoulders, I'm saying it because I know if our roles were reversed and I was watching them deal with this, I would hope that they could find the strength to hold on as long as they could, to stay in my life. I am not ashamed to admit that I selfishly want my friends here to talk to. I have lost so many to this date that I do not want to hear the words "they're gone" one more time. I do not want them to hear that I am gone, either.

I will also admit that some days I do wonder if I am becoming more of a burden with all that has happened since the car collision in 2008. I have become limited in physical capability due to the MVA, something that has made dealing with cancer worse. If I was a fully functioning adult there are some things that would be easier with this cancer life. I still continue, however. I do what I can and try to accept what I cannot do.

I hate cancer, I would not wish it on anyone. I cannot deny the good that this mass of unruly cells has brought into my life, though. I am grateful for the lighter side of this experience, but would still like it if one day I was told the cancer was irradiated or would be forever manageable from that day forth.

Ode to Today

I am exhausted, I am stressed
My mind is spinning, the house is a mess.
Cleaning is not happening, a guess?
No motivation is currently possessed


I must nurse our canine
Corral the kids, protect the felines
“Don’t hold her like that” is a common line
Ask me how I fare? “Oh, fine”


Chemo to take, and caffeine to think
Want to just slip in bed and sink
Hide in the covers, gone in a blink
Forget, disappear, let my mind sync


Clothes to fold and put them away
Stand looking at the room with only dismay
Appointments, calls, food needs made
Close my eyes and heart to today


I cannot feel outside of the void
Different methods with, I have toyed
The result the same, still annoyed
Throw on a smile, a worthy decoy


Do what I must and continue
Trudge, walk, crawl, roll through
Tomorrow may be different, true
But the darkness still floods deeper in hue

Moments of Thanks and Inspiration

I'm in a bad spot right now.  To help avoid a "downer" blog - which seem to be too often lately - I'm taking a moment to try to think of a lot things I'm grateful for:

• I have my soul mate as my spouse. Mike and I honestly say the same thing at the same time quite often. We can finish sentences, we want to cuddle at the same time, we can be apart or do different activities and not feel left by the other.  I can never be grateful enough for him.
• My talents. I love that I can do a lot of things on my own. I do wish that I could do them more often but that's leading into some of the dark stuff, so let's avoid that part. I love that I can draw to express myself, I love to write, to do woodworking, metalworking, I can build things with my hands with many mediums, and love to sing.
• I have some pretty amazing friends. Friends that will do whatever they can for me, that go out of their way to see me smile, from watching the kids to sending surprises that mean a lot to me in the mail.
• My kids are sometimes exasperating but they are also a source of happiness. I get hugs, kisses, and "I love you"s often.
• I'm able to still do some things, even if I cannot do everything any longer.  I can still feel slightly useful as I am not bedridden.
• My cats and dog love me and give me cuddles. 
• I have a chemo regimen that appears to be working.
• I apparently inspire people to do good.  This one I want to talk more about for a second:

I have had a lot of people tell me ways they were inspired by my actions.  It has been from being their new selves after surgeries or other issues that made them have scars or marks that make them appear different than the average person to stepping up and helping another person.  One person stopped worrying about wearing a prosthetic breast because she saw me freely walking around with one breast (and the remaining breast made it extremely obvious I only had one).  In relation to that IDGAF attitude, others have stopped trying to hide scars or missing hair, etc, and told me it was because I gave them the inspiration to just care about how they saw themselves instead of how others might react.  Some have told me they cannot believe the amount of things I help come to fruition.  I helped save a retreat, I helped make welcome bags more full than they would have been, I organize events with little effort.  To me, it is little effort.  I can plan these things easily.  I know enough about Excel and Word that I can make things very simple.  I have an ancient version of Adobe Photoshop and I can work that thing to my needs extremely easily.  If I am going to be an inspiration, I want you to take away one thing from me.  This is why I do what I do.  This is what makes me want to do things for others, whether they know it is me or not:

If something needs to be done, do what you can.

Change does not happen by shrugging your shoulders.  Help does not come from twiddling thumbs.  You cannot help if you are too worried what others will think of you.  Follow your heart, it is speaking to you, it twinges when you know that you can do something to right a situation.  Be selfless sometimes, think of how happy you can make someone with something as simple as a small, inexpensive gift or by doing a selfless act.  Share your friends' fundraising efforts, share their attempts to go outside their safe zone, share their events, share their triumphs, help where you can.  Can you imagine a world where everyone tried to help when they knew they could?

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

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

I give up, I need help

I have swallowed the last of my pride.  I have started up a GoFundMe for myself.  I am tired of cancer sucking all the life and money out of my family.  If you can donate, awesome, if not, please share.  Thanks

Support Julie Living With Cancer Here

33 months

Today is a hard day.  I have come to the conclusion that February 15th and I do not have a healthy relationship.  February 15th is the date for both of my mastectomies, but today is not difficult because of that.  Today is harder than some days because this is 33 months from the time we discovered my cancer had metastasized.  In the US studies, the average life span for stage 4 breast cancer patients is 33 months.  We do not have any proper statistics, that I can find, that are for Canadians.  And even if we look fully at the US studies, they do not include people like me, they are only for people diagnosed stage 4 at the start of their breast cancer diagnosis.

I find today hard because there was a chance I would not make it here.  Statistics said I might not see my son turn 3 years old.  They said that I might not see my daughter off to her first day of school.  I definitely would not see my eldest go to jr high, if this had been true statistics for my situation.  Even though these numbers that we are told after diagnosis are from the past, they still hit me hard.  I know many that have lived passed the 33 month mark, but I know a lot that have not even made 12 months.  Some did not even make 6 months.

There are a lot of emotions at play today.  I am happy to be here, I am tired because of the chemotherapy, I am pissed at all the snake oil salesmen and misinformation pushers that pounce on unsuspecting cancer patients, I am grateful for my chemo that has helped me be here today, I am thankful for my medical team, I am sad for all my friends that are not here, today.

I will have a lot of ups and downs today.  I just need to see the day through, but now I wonder if I am on borrowed time.

Chloe Comic September 2017: Bucket List Kicks the Bucket

Bucket List Kicks the Bucket

Chloe Comic August 2017: Dealing with Emotions

Dealing with Emotions

YACC Saved a Life Yesterday

When you think of a support group for young adults with cancer, you probably just envision a bunch of people in a circle talking about treatments and life expectancy.  I'll tell you now that that is not how any retreat or conference works, it is so much more than merely that.  It helps create friendships and connections that are so different from your typical ones.  There's something deeper in the relationships that you make while attending a YACC event.  And, yesterday that helped save someone's life.

I'm not going to say anything specific because of several reasons, but I think people need to understand both that it's okay to have dark feelings, and to also know there's a couple ideas that you can do to help friends that are away.

Yesterday hubby and I had taken all the children to grandparents' houses for the night (whooo! We get to sleep in!), and I received a message asking if I was not busy by any chance.  A friend was trying to reach me to let me know our mutual YACC friend had delved into a dark place and refused to look for help as much as they had begged them to call - they wanted to end it all, they didn't see any point in living.  I told my husband I had to go call the friend, he knew who they were, soon I was on the phone with them.  They didn't want to deal with the daily pain anymore, they were dealing with so much and it was weighing down their soul.  I didn't know how to deal with this, I'm not a trained crisis counselor, I'm just their friend, thousands and thousands of kilometers from them.  I had a heartbreaking moment of a thought of finding out that this friend was gone, like so many others that we had lost recently, and I said the only words I could think of.  "I'm selfish, I want to keep you here.  It's okay to have bad thoughts, it's okay to be tired of the pain, but I don't want to lose you.  Please call the crisis line!  Promise me you'll call them when we hang up.  I'm selfish and I want you here."  They agreed and promised they would.

When I spoke to the first friend that had messaged me about the our friend, it didn't consol them at all that they had promised.  They had told them they would call crisis line.  Our next thought was who could get to them so they had someone physically with them.  We think of two people, one that wasn't close enough to physically go there but that they are close to so a phone call would probably go a long way, and another that could probably be there in half an hour, someone that is very loving and that could give support in-person.  We contact the latter to get that ball rolling, the sooner someone is with the "darkened" YACCer, the better.  When contacting the first person mentioned, they are amazingly near the YACCer even though they're not normally within driving distance.  They would first call though, see if that can help in any way.  When they have no response to the call, my heart sunk, and they said they were turning around immediately to go to the YACCer's house.

Still terrified that something would happen before the other two arrived, I texted a connection to the YACC office.  They offered to call and talk with the YACCer.  Right now, keeping them busy and in contact until someone showed up in person was the best we could do.  And, the more people contacting them, the more they knew we loved them.

Things went amazingly well after that.  The friend from the office was on the phone with them until one person arrived, and had found out the YACCer did finally contact the crisis line.  They aren't normally this darkened, but it happened, and they were at risk of spiraling downward to the point of no return.  The second friend showed up and this gave the first arriving on the ability to be able to leave to reach work on time, but not before letting the YACCer know that they would be putting a lot more effort into making it out their way from now on.  That awesome friend that had arrived stayed with them for a long time.  The YACCer finally was able to eat and knew the crisis line was sending a counselor to see them soon.

Many will read this and think, that wasn't YACC, why would you say that YACC saved someone's life?  Well, everyone mentioned, other than the one at the office, was a person that had or has cancer and the only reason we know each other, the only reason we had each other's phone numbers and ability to message each other was because we met through YACC.  If we had not known each other, if we didn't all know that YACCer, they might not have seen today.  The world would be that much darker for losing their light in such a tragic way.  Our friend is alive and knows they are loved.  That is all thanks to the connection YACC has given us.  So, yes, I say, "YACC saved a life, yesterday."

Survivor Guilt

Ever watch a movie or read a book about an immortal or long-lifed creature?  One without a delusional god-complex?  They at some point tell the heartache of being blessed with living and watching those not like them dying around them.  The curse of immortality.  It's not just for the eternal, for those of us that still have an end-date looming over our mortality, it's survivor's guilt.

Survivor's guilt comes at you strongest after someone you cared about, related to, loved, and admired passes away, especially if it is sudden.  Salt in the wound is if you're a ticking time bomb, yourself.  An unfortunate catch to getting to know other people living with cancer is that you are all on borrowed time.  You don't know how much any of you have, of course doctors can speculate, percentages are given, but no one truly knows the amount of seconds you will get to enjoy in this life.

Today's post is brought to you by seeing that another friend has passed.  She was a kind, wonderous woman, a devoted mother, and as many would say, take too soon, that she was too young.  I've seen many, many friends pass over the last years, this last year especially.  We're all terminal.  But, I'm still here.  My scans have been stable for some time now.  The chemotherapy was really effective against my tumours.  Their cancer got to the point where the treatments, no matter which they tried, were now useless.  Some tried alternative options towards the end, some decided to not try delaying it any longer, some opted for even ending things before their body shut itself down.  No matter what they chose, it was their choice.  A choice no one should ever have to make.  I don't know what I'll do when I get to that point.  I hate thinking about it.  I also hate knowing that my friends' children won't have their parent by their side, any longer.  They'll miss the hugs, the kisses, the fights, the getaways, the trips, the advice...  Some will still have some memories.  Some will have things to help them along, cards, letters, videos, books, pictures, but they won't have the person.

So why do I get to be here and watch my friends go?  Some say that I'm so lucky.  How is it luck?  You get to feel the heart break every time you are notified that someone passed.  You feel death's hand a little tighter around your neck.  You watch your children and know that could be them soon, one parent less.

You to take comfort in that you are still here, but the weight on your chest is real.  The darkness in your mind is there.  You feel guilty because you are on this side of the grass and all you can do is try to honour them by living.  Try to live so that you can give reason for being the "lucky one".

When is it too much?

I guess it's something that I have asked many times.  When is enough, enough?  When should I just say, okay, I need to stop?  When should I tell myself to cut the stress off?  When should I give up?

It's not always about something big and important.  Small things should be easy to say "That's it" to but that's not always the way.  I had a couple instances where I knew right away that the line was crossed.  I acted accordingly.  I find myself, however, constantly turning back to this question at some point in the year. 

To be a bit morbid on the subject, this is something that any advanced cancer patient has to face.  When will there be no more options?  What will I do then?  Will I choose to end things on my terms or to let nature seize me?  What is too much when it comes to treatment side effects?  When is the quality of life diminished to the point of not being life any longer?  It's something no one should have to face and decide on.  But some of us do.

On a less deadly topic, sometimes you do your best but the effects are toxic and you need to just walk away.  It can be a relationship, a job, a career, a hobby, a volunteer event, or a situation that you turned around and realized you fell into it long ago.  In those instances it is best for your mental sanity to try to stop.  That's when you need to look out for your mental well-being.  The stress that something, even out of good intentions, has turned toxic and it can do a lot to you.  Stress can effect a lot of your body and you don't generally realize it until you get a chance to detox.  If you step away from the cause, sometimes just as your mind has decided that you finally need to stop, that can start the healing process. 

Once you have accepted the path you need to take, even if it means burning bridges, or temporarily cutting ties, you might find the air less dense or less thin as it had been.  Your shoulders may stop slumping.  Your heart might feel lighter.  It'll still take time to fully recover, but you might be able to feel that you did what was best for you and your well-being.  Even if it isn't the best for all parties involved.

Busy waiting

I'm currently trying to type this through tears, so I don't know how well it'll go.

I'm waiting on a call from the vet. One of my cats has a broken femur. It's not the first one for her, either, and that's part of the heart ache. We don't know why she's breaking bones. One thing the vet said, hesitantly, is that she could have osteocarcinoma. If that's not spelt right I don't care right now. I hate cancer. I hate that my cat that has been always ready to curl in my lap or onto my shoulder and purr her head off is suffering.

The call from the vet will say one of two things, the specialty surgeon will meet to discuss possible surgery, or that she is not a candidate and we need to look at putting her down. So either it will be go beyond debt or kill my furkid... My husband and I are in turmoil, we love this cat, she is our furkid, she might die soon. We have to make that choice, shortly.

My heart is breaking. And to top things off, I'm going for a ct scan tomorrow to find out if my cancer is spreading. I'm lost, so lost. I wish I knew what to do.