Hey all! So this will be more like a brain dump that a well thought out post - I feel like I just need to get it out. Maybe that is the first step to truly moving on.
Two things:
1. No one panic - everything is fine medically
2. There will be some swearing so apologizing in advance
Here goes - I fucking hate November. Is it possible to truly regret the onset of a month? To physically want to punch it right in the face?? That's how I feel. I used to like month 11 - it's my birthday month (which inevitably meant time with friends and a few cocktails); it was the calm before the lead up to the craziness of Christmas, and it was usually the month where we got a light dusting of snow that made everything look like a story book. It was a good month!
Then the cancer diagnosis had to go and fucking ruin it. For the second year in a row, I feel like I need to cower as the month comes closer. I want to just stick my head in the sand - it actually crossed my mind that if I went to a different time zone I could delay the onset. But no matter what I did it came anyway LOL And of course this month was when I had my 3 month follow up with the neurosurgeon. I wasn't expecting anything to be wrong - but then again I wasn't expecting breast cancer either. That little voice in the back of my head kept me wondering if there wouldn't be something else that showed up. That appointment was today, and happy to report that everything looks good. Back in a year to monitor. You would think that would make me happy - ecstatic really. But I got nothing. I felt relieved for sure, but I didn't get that joyous feeling I expect with good news.
Was I disappointed I didn't want to shed tears of joy? Yes. Was I surprised? No. These days my emotions have been all over the place. So weird for me...I was always pretty level headed and rarely let my emotions get the better of me in public. I considered myself solid. And now? What is the exact opposite of solid?? My emotions range from feeling nothing to crying - and rarely move to joy. I miss it. I miss feeling light hearted and ready to take on the world. I miss laughing hysterically like I don't have a care in the world. I miss me. I am pissed that she hasn't come back now that everything seems to be mended. What the fuck is she waiting for? I'll roll out the red carpet if that makes her skip back into existence. Just hurry the crap up already!!
The reality? There are days where the only reason I get out of bed is because I have to drive my kids to school. There are days when it is wayyyy easier to sit and watch mindless TV than to try and engage in conversation. There are days when it takes everything in me to put together a coherent email or text, and I pray that noone calls to talk to me in person - I just cant' do it. So far the last few months, I have cried for no reason; I have walked in to the hospital feeling fine only to have random tears stream down my face; I have had multiple panic attacks that I cannot attribute to anything specific; I have yelled and lost my mind with the people I love and I can't explain to them why. I have said out loud that I can't do this (not sure what this is, but in that moment this is everything). I have tried to engage in things only to feel like a failure because I don't want to be there. My reality right now isn't me - but I am living it. Such a mind fuck.
I have been told I need to just take the time I need. That the symptoms of PTSD need time to be dealt with. It has taken me some time to recognize what is going on for what it is. Someone put it into perspective for me recently. They reminded me that in the last 18 months I've had to deal with two traumatic events that, at their worst, could have turned out way differntly than it did. And I use the term "deal" in the lightest way. I haven't dealt with anything. I've been faking my way through things and trying to wish being ok into reality. And I've been feeling guilty for having to fake my way through. I have so much more that some others - family and friends that never waiver and hold me up always; a roof over my head and food on my table; prescriptions and medical care covered so I don't have to worry. All that is missing is me. The real me. The new me. Whatever the fuck that she.
Don't have it figured out yet, and I am working on it. I'm relying on my medical team to help me get through this part as awesomely as they helped me get through the physical part. I am going to continue to lean on family and friends - please be patient with me. There are time where my smile will look fake, or when I say I just don't have the energy to be there. Keep asking please. In the (hopefully) near future, some version of me will emerge. This version will be a fiercely loyal friend who has a new perspective on what is important; this version will want to laugh until her sides hurt; this version may want to go for a few cocktails just to feel giddy; this version will be ready to take on the world and whatever it throws at her. She's just not here yet. But she is coming - that I promise.
Thank you again to everyone for support and love. It means the world. For now I will spend my energy on looking forward, but living in the present. I will do everything in my power to make this new me fucking fabulous. Watch out world - or at least watch out family and friends LOL.
J
Wednesday, November 6, 2019
Wednesday, July 17, 2019
Just a quick check in!
Hi everyone!
Wanted to check in quickly and thank everyone for the positive vibes being sent my way - they seem to have done the trick. Brain surgery was on Thursday, and I was sleeping in my own bed by Sunday night. I have marvelled at every step what the body is capable of. Who would have thunk that 3 nights after cutting open my skull I would be sleeping on my own pillow...so weird.
Goes with what I was told though - this one went off without a real hitch. The hardest part was moving for 2 nights while connected to the leads that monitored my health. I couldn't move, couldn't walk, couldn't sleep. Day 2 was the hardest - nauseous (expected), mild headache (expected), elevated blood pressure (not expected but not terrible). Once that night passed, I started feeling immensely better. Got disconnected on Saturday and was able to move from bed to chair (YAY freedom!!). The hard part after that was the boredom. I never actually got into a room which meant I spent time in the OR recovery space. No phone, no TV, no visitors - moving from bed to chair at a snailspeed pace. So when the offer to go home on Sunday came I jumped at it. Immediately felt better!
Not to say wasn't scared out of my mind. Home on day 4??? Was this normal? Would it be ok? Truth is it absolutely would because I have a rockstar of a hubby who had everything under control even when I was freaking out a bit. So here I sit - today is the first day where I feel tired and in a bit of pain. Pain is a weird thing though...my last 2 surgeries were way worse in terms of recovery. This one I'm on regualr Tylenol and just have to remember not to move my head too quit. The most annoying part is the staples in my head that I sometimes forget are there. Get them out at the end of the month, then a follow up. That's it. Well we wait for the pathology results to make sure its nothing but the surgeon has already said he is confident so going with that!!
For now I'm taking the summer to recover, reconnect with me, family and friends, and to figure out what is next. I figure the last 2 years counts as my share, and it's done for awhile so I'm going to go with that.
As for everything else, I am thankful for technology so I can keep up to date with my girl who is in Ireland doing summer school. She is pretty stressed about completing everything, but in my eyes she is amazing. At 16 she headed to a foreign country for 4 weeks, knowing no one who was going. She is homesick and hates not being here, but I know she is enjoying pieces of it. I know she will thank us that she got to go, and I know I'm super jealous I can't be there. Will live vicariously through her for now. And will remind her everyday that she's got this - I will believe for her. And hell...if she doesn't get the mark she wants she has options - but she will never forget her first trip to the green hills. I admire her - and if she can do that, I can recover so when she gets home we can talk all night :-)
Cheers everyone!
J
Wanted to check in quickly and thank everyone for the positive vibes being sent my way - they seem to have done the trick. Brain surgery was on Thursday, and I was sleeping in my own bed by Sunday night. I have marvelled at every step what the body is capable of. Who would have thunk that 3 nights after cutting open my skull I would be sleeping on my own pillow...so weird.
Goes with what I was told though - this one went off without a real hitch. The hardest part was moving for 2 nights while connected to the leads that monitored my health. I couldn't move, couldn't walk, couldn't sleep. Day 2 was the hardest - nauseous (expected), mild headache (expected), elevated blood pressure (not expected but not terrible). Once that night passed, I started feeling immensely better. Got disconnected on Saturday and was able to move from bed to chair (YAY freedom!!). The hard part after that was the boredom. I never actually got into a room which meant I spent time in the OR recovery space. No phone, no TV, no visitors - moving from bed to chair at a snailspeed pace. So when the offer to go home on Sunday came I jumped at it. Immediately felt better!
Not to say wasn't scared out of my mind. Home on day 4??? Was this normal? Would it be ok? Truth is it absolutely would because I have a rockstar of a hubby who had everything under control even when I was freaking out a bit. So here I sit - today is the first day where I feel tired and in a bit of pain. Pain is a weird thing though...my last 2 surgeries were way worse in terms of recovery. This one I'm on regualr Tylenol and just have to remember not to move my head too quit. The most annoying part is the staples in my head that I sometimes forget are there. Get them out at the end of the month, then a follow up. That's it. Well we wait for the pathology results to make sure its nothing but the surgeon has already said he is confident so going with that!!
For now I'm taking the summer to recover, reconnect with me, family and friends, and to figure out what is next. I figure the last 2 years counts as my share, and it's done for awhile so I'm going to go with that.
As for everything else, I am thankful for technology so I can keep up to date with my girl who is in Ireland doing summer school. She is pretty stressed about completing everything, but in my eyes she is amazing. At 16 she headed to a foreign country for 4 weeks, knowing no one who was going. She is homesick and hates not being here, but I know she is enjoying pieces of it. I know she will thank us that she got to go, and I know I'm super jealous I can't be there. Will live vicariously through her for now. And will remind her everyday that she's got this - I will believe for her. And hell...if she doesn't get the mark she wants she has options - but she will never forget her first trip to the green hills. I admire her - and if she can do that, I can recover so when she gets home we can talk all night :-)
Cheers everyone!
J
Wednesday, July 10, 2019
What a week!
This week has already been an eventful one. I sent my oldest off on an amazing adventure (for the record I already miss her like crazy). She is gone to do summer school in Ireland - we figured if she was choosing to reach ahead and get her Grade 12 English credit, she might as well do it in Ireland :-)
Sending her through security at the airport was hard, but at her request I did not cry. I watched her walk through with confidence and chatting with the friends she had just met, and all I felt was pride. Man this girl has come far...from the kid who I worried about constantly to this young woman who is tackling everything she has to head on. I can't wait to hear all her stories when she is back in August!
Now for the part that I'm starting to freak out about - surgery is Thursday. It has really been surreal up until now. I never really processed that they were going to open my skull and remove something from my brain. Even saying "brain surgery" was something I could not do with ease.
People have been asking me how I am doing. I have been answering them honestly with "I'm fine; it will all be ok" - I really am fine. I have felt calm about it all, and trust that the docs know what they are doing. But this morning it really hit me. It is taking everything in me to keep the panic at bay - lots of deep breaths and "you got this" mutterings in my head. I am staying in control cause, to be honest, I'm afraid that once I really start to process it I will get completely overwhelmed.
I do believe that everything will be fine - I'm in the best hands I can be in. I've been told what the recovery is like, and it doesn't sound too bad. And I'm keeping a positive attitude because I believe that it helps. And I have LOTS of support around me. So really I am fine - but truth be told I am scared shitless about tomorrow. Today is the first day the emotion of it all is sitting right under the surface - and I'm not sure I can keep it in check the whole day. I am sure tonight will be a sleepless one, and I will likely lose it at some point. If you happen to witness me starting to lose it, just give me a hug. Or even better do something to make me laugh. Or just stand beside me and know that I really am ok. Gonna take more than this to knock me down!!
Will be pretty silent for awhile...talk to you all soon!
Julie
Sending her through security at the airport was hard, but at her request I did not cry. I watched her walk through with confidence and chatting with the friends she had just met, and all I felt was pride. Man this girl has come far...from the kid who I worried about constantly to this young woman who is tackling everything she has to head on. I can't wait to hear all her stories when she is back in August!
Now for the part that I'm starting to freak out about - surgery is Thursday. It has really been surreal up until now. I never really processed that they were going to open my skull and remove something from my brain. Even saying "brain surgery" was something I could not do with ease.
People have been asking me how I am doing. I have been answering them honestly with "I'm fine; it will all be ok" - I really am fine. I have felt calm about it all, and trust that the docs know what they are doing. But this morning it really hit me. It is taking everything in me to keep the panic at bay - lots of deep breaths and "you got this" mutterings in my head. I am staying in control cause, to be honest, I'm afraid that once I really start to process it I will get completely overwhelmed.
I do believe that everything will be fine - I'm in the best hands I can be in. I've been told what the recovery is like, and it doesn't sound too bad. And I'm keeping a positive attitude because I believe that it helps. And I have LOTS of support around me. So really I am fine - but truth be told I am scared shitless about tomorrow. Today is the first day the emotion of it all is sitting right under the surface - and I'm not sure I can keep it in check the whole day. I am sure tonight will be a sleepless one, and I will likely lose it at some point. If you happen to witness me starting to lose it, just give me a hug. Or even better do something to make me laugh. Or just stand beside me and know that I really am ok. Gonna take more than this to knock me down!!
Will be pretty silent for awhile...talk to you all soon!
Julie
Tuesday, June 25, 2019
It's a date!
Well...I wish I was referring to a date where we were going away, or something exciting was going to happen. Not that, but it's an important one nonetheless.
July 11th, 2019
That's the date that the neurosurgeon will remove this stupid thing in my head, and I can (fingers crossed) just get on with life. It seems every time I hope to "move on" something happens that throws me for a loop. So instead of "moving on" from things, I'm going to embrace them and move forward. Well, maybe not embrace them but at least accept them :-)
Doc explained the surgery and the first part of the recovery (looks like I'll be in the hospital for 5-6 nights). Not sure what recovery entails after that, but I assume it's just resting to get my strength back and more trips to the doc to make sure things are healing nicely.
In true Julie fashion, I haven't thought much about the specifics. Every time I start to process the fact that I'm going for brain surgery, I get overwhelmed and shut the thoughts down. Maybe not the healthiest way, but it's how I'm dealing and that's ok. I still haven't really had a meltdown (and haven't shown up on Sonia's porch with Malibu yet) - I do know it's coming. We've been busy so procrastinating has been easy. But it's coming I'm sure. Hopefully it's not in a public place...the cashier at Loblaws may not appreciate a break down in their line up!
In any case, that's all I've got for now. Going to enjoy the next couple of weeks, then will trust the doctors to do their thing. In reality, that's all I can do. Well that and continue to soak in any good vibes I can find.
J
July 11th, 2019
That's the date that the neurosurgeon will remove this stupid thing in my head, and I can (fingers crossed) just get on with life. It seems every time I hope to "move on" something happens that throws me for a loop. So instead of "moving on" from things, I'm going to embrace them and move forward. Well, maybe not embrace them but at least accept them :-)
Doc explained the surgery and the first part of the recovery (looks like I'll be in the hospital for 5-6 nights). Not sure what recovery entails after that, but I assume it's just resting to get my strength back and more trips to the doc to make sure things are healing nicely.
In true Julie fashion, I haven't thought much about the specifics. Every time I start to process the fact that I'm going for brain surgery, I get overwhelmed and shut the thoughts down. Maybe not the healthiest way, but it's how I'm dealing and that's ok. I still haven't really had a meltdown (and haven't shown up on Sonia's porch with Malibu yet) - I do know it's coming. We've been busy so procrastinating has been easy. But it's coming I'm sure. Hopefully it's not in a public place...the cashier at Loblaws may not appreciate a break down in their line up!
In any case, that's all I've got for now. Going to enjoy the next couple of weeks, then will trust the doctors to do their thing. In reality, that's all I can do. Well that and continue to soak in any good vibes I can find.
J
Wednesday, May 8, 2019
Another Bump in the Road
So like many, I often struggle with how much to share on social media. I ask myself often if sharing things is good or bad; am I putting too much out there. Then I remember how writing about things helps me cope with what is going on in life - so I'm not questioning anymore. I'm going to share the good, the bad and the ugly and what will be will be :-)
At my last check in, I talked about dealing (or not dealing) with all the one year markers that had happened. Will admit, still wasn't entirely done coping with all the baggage the cancer journey left in my hands, but I did feel like I was moving forward and getting things somewhat under control.
I did, however, continue to have these nagging symptoms. Dizziness, headaches, blurry vision, memory gaps, balance issues - all things I attributed to the medication that I was on as part of my continuing cancer treatment. I mentioned them to my oncologist and, in his words "I'm sure it is the medication, but let's send you for a MRI just to make sure - but I am sure it is nothing". To say I no longer trust the words "I'm sure it is nothing" is now an understatement. These are the same words my doctor used before my cancer diagnosis. I had convinced myself it was just part of the recovery process, but went for the MRI anyway.
I guess I should know by now that if a specialist calls you at 7 PM on a Tuesday night, it's probably not to tell you everything is good. Another one of those calls to add to "moments you remember". So here is the deal - it appears that the cancer is not back. To say this is a huge relief for me would be an understatement. I am genuinely thrilled that is doesn't seem to have spread - one point in the positive column.
The next part of the call was the kicker. He told me they did find another tumor. I kind of only got snippets of what he said after that - I was standing in the middle of St Laurent shopping centre with my girl and refused to get worked up over it. What I did catch was it is called an meningioma, that 80% of the time they are benign and that a neuro specialist would be in touch. I figured I would have to wait a bit for that call, but I guess once your in the system things move fast. Got a call that Thursday and saw the neurosurgeon the following Wednesday. For that week, I boxed it up and didn't think about it.
Then came Wednesday - off we went to another doctor. Without all the details, essentially if you've got to get a brain tumor, this is the one you want. He does not believe it is cancer, but will not know for sure until he looks at it under a microscope. So that means he has to go into my brain to remove it (because of where it is, he cannot take a wait and see approach). Is it weird that everyone was excited that this "bump in the road" was only brain surgery and not cancer?? Except hubby - he thought we were all crazy for saying it was good news LOL
The kids took it like troopers (as they always do), although I admit they both seem a little more stressed these days. Has meant lots of hugs from us to assure them all is ok. I'll take hugs from my teens anytime I can get them!
As for me, I'm kinda still ignoring it. I still have the symptoms, but I haven't really dealt with the reality yet. I'm sure it will come, especially once I have a surgery date (doc indicated it would be this summer at some point). And I'm really good at procrastinating when I have to deal with the emotional part of all this. I refuse to let the fear of what is coming (known and unknown) take over my daily life. Not gonna lie - I am positive there will be a time where I will yell, cry and I may even throw things. When this happens, I will lean on my family and my circle (heads up to my circle - I may show up on a porch with some Malibu at some point...don't ask questions, just join me :-) ).
To say hubby and I count our blessings with a little more gusto these days is an understatement. We really don't sweat the small stuff (most of the time), and we fill our time with things we enjoy instead of focusing on the "must do" things. It only took us 20 years of marriage, and a few medical issues to realize doing this is what would make us the most happy.
I'm sure there will be another post coming before the next step, but for now I'll just take all the good vibes and positive mojo you all can muster. One day at a time...
J
At my last check in, I talked about dealing (or not dealing) with all the one year markers that had happened. Will admit, still wasn't entirely done coping with all the baggage the cancer journey left in my hands, but I did feel like I was moving forward and getting things somewhat under control.
I did, however, continue to have these nagging symptoms. Dizziness, headaches, blurry vision, memory gaps, balance issues - all things I attributed to the medication that I was on as part of my continuing cancer treatment. I mentioned them to my oncologist and, in his words "I'm sure it is the medication, but let's send you for a MRI just to make sure - but I am sure it is nothing". To say I no longer trust the words "I'm sure it is nothing" is now an understatement. These are the same words my doctor used before my cancer diagnosis. I had convinced myself it was just part of the recovery process, but went for the MRI anyway.
I guess I should know by now that if a specialist calls you at 7 PM on a Tuesday night, it's probably not to tell you everything is good. Another one of those calls to add to "moments you remember". So here is the deal - it appears that the cancer is not back. To say this is a huge relief for me would be an understatement. I am genuinely thrilled that is doesn't seem to have spread - one point in the positive column.
The next part of the call was the kicker. He told me they did find another tumor. I kind of only got snippets of what he said after that - I was standing in the middle of St Laurent shopping centre with my girl and refused to get worked up over it. What I did catch was it is called an meningioma, that 80% of the time they are benign and that a neuro specialist would be in touch. I figured I would have to wait a bit for that call, but I guess once your in the system things move fast. Got a call that Thursday and saw the neurosurgeon the following Wednesday. For that week, I boxed it up and didn't think about it.
Then came Wednesday - off we went to another doctor. Without all the details, essentially if you've got to get a brain tumor, this is the one you want. He does not believe it is cancer, but will not know for sure until he looks at it under a microscope. So that means he has to go into my brain to remove it (because of where it is, he cannot take a wait and see approach). Is it weird that everyone was excited that this "bump in the road" was only brain surgery and not cancer?? Except hubby - he thought we were all crazy for saying it was good news LOL
The kids took it like troopers (as they always do), although I admit they both seem a little more stressed these days. Has meant lots of hugs from us to assure them all is ok. I'll take hugs from my teens anytime I can get them!
As for me, I'm kinda still ignoring it. I still have the symptoms, but I haven't really dealt with the reality yet. I'm sure it will come, especially once I have a surgery date (doc indicated it would be this summer at some point). And I'm really good at procrastinating when I have to deal with the emotional part of all this. I refuse to let the fear of what is coming (known and unknown) take over my daily life. Not gonna lie - I am positive there will be a time where I will yell, cry and I may even throw things. When this happens, I will lean on my family and my circle (heads up to my circle - I may show up on a porch with some Malibu at some point...don't ask questions, just join me :-) ).
To say hubby and I count our blessings with a little more gusto these days is an understatement. We really don't sweat the small stuff (most of the time), and we fill our time with things we enjoy instead of focusing on the "must do" things. It only took us 20 years of marriage, and a few medical issues to realize doing this is what would make us the most happy.
I'm sure there will be another post coming before the next step, but for now I'll just take all the good vibes and positive mojo you all can muster. One day at a time...
J
Thursday, March 21, 2019
After the "one year"...
I didn't realize how long it had been since I sat down to write! I could say it was because I was super busy - but that would be a lie. I could say it was because I was speechless, but those who know me would call me out on that fib too. The real reason?? There have been alot of "one year since..." dates in the last few months and I just truly wanted to ignore them.
One year since diagnosis; one year since surgery; one year since first treatment; one year of trying to figure things out. One year sounds like a long time - but in reality it isn't long at all, especially when dealing with the last piece.
So in a nutshell, I avoided thinking about all the one years. On November 8th (one year since diagnosis) hubby and I treated ourselves to a night away. We ate good food, drank good wine, went to the spa - an excellent way to try and re-image that particular date. All the other one years, I didn't give a fleeting thought. OK that's a lie - I gave them a fleeting thought then promptly stuck them in a box and put them aside. I was trying to forget all about them. NEWSFLASH - it didn't work. Did I really think that I could forget about all the craziness of the last year? Pretend that it hadn't changed me? Since my avoidance strategy wasn't working I had to start confronting it all. Blech!!!
Here is what I learned. It's friggin hard. ALL. OF. IT. Everything about this stupid journey is hard. Mine seems a little easier because of the amazing people that surround me, but don't let the smiles and social media posts fool you. There are still days when it takes all my effort to get up and get dressed. Days when I want to cocoon myself in blankets and Netflix binges, or want to sit in silence because noise is still overwhelming. I really try to limit those days, but they happen. My new life mantra is "you can visit there, but you can't pack up and live there".
One of the things that bothers me the most is the notion of "one year". I keep thinking what the heck is wrong with me? It's been almost a year since my chemo treatments are finished - why am I not bouncing back and just getting on with life? It seems like a long time to be "dealing with it". And every time I set a date for myself of when I will "be better" and it doesn't happen, I feel like a failure. I know...wah wah wah - but this is my blog and I can wallow if I want LOL
So how have I dealt? I've gotten help. I'm talking to people who remind me that "one year" isn't that long when you are dealing with a life changing event. That it's ok to say "I'm not ok" and not give any explanations. That it is acceptable to say "I just can't today" and not feel guilty. And that I need to remember that cancer is something that I am dealing with, but it isn't who I am. Did an interesting exercise the other day. I was asked to list all of my accomplishments and all the places I thought I was failing. Every single thing on both lists was from the past 18 months - I'd forgotten to list all the things I had accomplished before diagnosis. Was a bit of a reality check - I realized I'm letting the stupid disease define me. Not what I want. So am working on a mind shift.
So where am I now? I think I am finally getting the pain under control. Still have days where I feel like my joints are on fire, but they aren't as frequent so I will take the win. Cognitively and mentally is where I still struggle. The fog that I've been experiencing has not gone away, nor has the inability to multi task. I still get very overwhelmed if there are "too many tabs" open in my brain, or if there are too many things going on at once (like I need to walk away overwhelmed). And memory loss - this one is a little scary. Literal black holes in my short term memory. I'm told all of this is normal, and it will get better with time. No one can say how much time, but I'm learning to just leave it fluid - cause it's gonna take the time it takes and I can't change it.
I still haven't figured out this "revised me" thing. I'm not sure who she is yet. I know my priorities have been solidified; I know my tolerance for bullshit is at an all time low; I know I want to revel in things that make me happy; I know I hold everyone I love a whole lot closer; and material things are nice, but are even less important now. I have no idea how all these pieces will fit together to define me moving forward...but I can assure you however she is defined, she will be pretty bad-ass. I am kicking cancer in the teeth after all...that in itself gives me the right to describe myself as bad-ass.
Keep moving forward...
J
One year since diagnosis; one year since surgery; one year since first treatment; one year of trying to figure things out. One year sounds like a long time - but in reality it isn't long at all, especially when dealing with the last piece.
So in a nutshell, I avoided thinking about all the one years. On November 8th (one year since diagnosis) hubby and I treated ourselves to a night away. We ate good food, drank good wine, went to the spa - an excellent way to try and re-image that particular date. All the other one years, I didn't give a fleeting thought. OK that's a lie - I gave them a fleeting thought then promptly stuck them in a box and put them aside. I was trying to forget all about them. NEWSFLASH - it didn't work. Did I really think that I could forget about all the craziness of the last year? Pretend that it hadn't changed me? Since my avoidance strategy wasn't working I had to start confronting it all. Blech!!!
Here is what I learned. It's friggin hard. ALL. OF. IT. Everything about this stupid journey is hard. Mine seems a little easier because of the amazing people that surround me, but don't let the smiles and social media posts fool you. There are still days when it takes all my effort to get up and get dressed. Days when I want to cocoon myself in blankets and Netflix binges, or want to sit in silence because noise is still overwhelming. I really try to limit those days, but they happen. My new life mantra is "you can visit there, but you can't pack up and live there".
One of the things that bothers me the most is the notion of "one year". I keep thinking what the heck is wrong with me? It's been almost a year since my chemo treatments are finished - why am I not bouncing back and just getting on with life? It seems like a long time to be "dealing with it". And every time I set a date for myself of when I will "be better" and it doesn't happen, I feel like a failure. I know...wah wah wah - but this is my blog and I can wallow if I want LOL
So how have I dealt? I've gotten help. I'm talking to people who remind me that "one year" isn't that long when you are dealing with a life changing event. That it's ok to say "I'm not ok" and not give any explanations. That it is acceptable to say "I just can't today" and not feel guilty. And that I need to remember that cancer is something that I am dealing with, but it isn't who I am. Did an interesting exercise the other day. I was asked to list all of my accomplishments and all the places I thought I was failing. Every single thing on both lists was from the past 18 months - I'd forgotten to list all the things I had accomplished before diagnosis. Was a bit of a reality check - I realized I'm letting the stupid disease define me. Not what I want. So am working on a mind shift.
So where am I now? I think I am finally getting the pain under control. Still have days where I feel like my joints are on fire, but they aren't as frequent so I will take the win. Cognitively and mentally is where I still struggle. The fog that I've been experiencing has not gone away, nor has the inability to multi task. I still get very overwhelmed if there are "too many tabs" open in my brain, or if there are too many things going on at once (like I need to walk away overwhelmed). And memory loss - this one is a little scary. Literal black holes in my short term memory. I'm told all of this is normal, and it will get better with time. No one can say how much time, but I'm learning to just leave it fluid - cause it's gonna take the time it takes and I can't change it.
I still haven't figured out this "revised me" thing. I'm not sure who she is yet. I know my priorities have been solidified; I know my tolerance for bullshit is at an all time low; I know I want to revel in things that make me happy; I know I hold everyone I love a whole lot closer; and material things are nice, but are even less important now. I have no idea how all these pieces will fit together to define me moving forward...but I can assure you however she is defined, she will be pretty bad-ass. I am kicking cancer in the teeth after all...that in itself gives me the right to describe myself as bad-ass.
Keep moving forward...
J
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