Tag Archives: Glioblastoma

Claws of my Heart

8 Mar

My heart – or better a part of my heart –  has been so tight in recent months, caught in anger that it wasn’t able to process any other feelings. Anger towards a disease science has yet to find a cure for; anger at the person having said illness. It’s been almost six months since Mom’s passing away and only now am I finally feeling the grip of that anger lessen, making it not easier but harder to remember her.

In the last year, I started hating her, yes, actually hating my own mother; hating her for getting sick and being an impossible patient; for making my life miserable and hard; but mostly for reversing our roles. It was all so messed up, I was trying to hold myself together as best as I could while trying to take her to all those doctor’s appointments, making sure she took her meds, ate, didn’t burn down the house, had enough money in her bank account. Those were not my responsibilities, they were hers, she was the mother but I was taking care of her. And I hated it. As her cancer progressed, so did my hatred for her until she died and I was relieved of the never-ending worries of how and when. I was actually glad.

It meant that I could finally breathe again, lick my wounds and start to heal. The months before, I was barely holding on, I was overwhelmed with everything, mostly because I didn’t see it ever changing. A sea of misery and I was in the middle of it, holding on to the smallest piece of wood possible while wave after wave was trying to swallow me whole. I am not sorry for hating her as I know I didn’t hate the actual person but the character her cancer turned her into but it has taken me all these months to actually – finally – miss her because I was still so caught up in my anger.

Now the memories of “patient mom” are fading away and instead the “just mom” sentiments are resurfacing. This sweet, lovely woman that was always trying to give me everything I could possibly want and I am finally missing her. Only, it hurts! FEELINGS ARE THE WORST!

This realisation dawned upon on me earlier today as I was at the university when the thought of a Mom-hug popped into my head out of the blue. I didn’t want a hug but just remembering that I will never be hugged like that again made my eyes fill with tears. Mom-hugs are these special kind of hugs that are filled with unconditional love and an edge of everything-will-turn-out-right-in-the-end that only a parent, but especially a mother, can give. Stupid feelings, I couldn’t start ugly sobbing right then and there in an office with 4 guys. I tried to push those emotions back down but was not successful at it. So I left earlier than I had planned for today because I needed to process these feelings. Holding stuff back only comes back to bite one in the ass and I was not gonna do that. This is me processing because I have feelings and I don’t know where to put them – so I write them down. My answer to everything. Keep on writing.

It’s been two days

16 Sep

It’s been two days now since my Mom passed away. I honestly don’t know how I feel about it except that I don’t really feel sad. I cried when I got THE call and the next morning I went to see my gran but after that I haven’t.

Everything happened so fast. Thursday I came back from my vacation and on the car-ride home from the aiport I called my gran since I hadn’t talked to her in a week (because my stupid phone decided to throw a temper tantrum ever after I left Ottawa) and she told me to come see my mom that day. I hadn’t planned to do so. All I wanted to do was go to sleep since I’d been up for 24 hours. Nevertheless I got into my car and drove to the hospice my mom was relocated to earlier that day.

She looked worse than when I left 3 weeks prior but I expected that. My best friend who picked me up from the airport had already told me that he believed my mom was only waiting to see me again before she could let go. As it turned out, that’s exactly what happened. So I went to the hospice and she was still awake. I briefly talked to her but she was confused a lot. When I tried to make her look at me, she only looked past me with empty eyes. It was a short visit of under an hour but I promised to come back the next day. All I could think about was going to sleep, and so I did. Slept for 12 hours before I got a call from the nurse at the hospice telling me Mom’s condition had worsened considerably during the night. I told them I’d come by later since I had some things I needed to take care of before. But I called my gran who went there immediately.

I got there around 9 am and she was unconscious, just getting another dose of morphine to calm her down and keep her of pain. It was so tough to look at her like that. Both the nurse and my gran (she’s seen a lot of people die, too many by now) informed me that it won’t be long now and they were right. Shorty before 10 pm the same day she passed away. I had only left her 1 1/2 hours earlier as my gran had settled in at her bedside for the night. I needed to go to sleep again since I’m still jet lagged. I was already asleep when Gran called to inform me. I asked if I needed to come down there but was relieved when I needn’t to.

And like that I became and orphan. Well, technically I’m not but since I don’t know where my father is and I haven’t even seen him in years, it feels like it. He’s nothing more than a sperm donor to me. My small family got even smaller. But at least I was granted one wish, that the day of mom’s death won’t be the same as the birthday of my best friend.

I could beat myself up for not feeling more sad at the moment but that would be stupid, I guess. Maybe my head is still in vacation mode and it will probably take a while until my consciousness will have caught up with reality but I also know that it’s better for all of us this way. She wouldn’t have recovered from that type of cancer, nobody ever does. I couldn’t have taken her home again because the last weeks before my vacation had taught me that I couldn’t take care of her anymore by myself. And my granny was/ still is taking it the hardest. She was alone with her the last three weeks as I got to go away. She’s been in emotional pain for a long while now but also in physical pain since she desperately needs an operation to at least relieve her of some of the pain in her knee. She can hardly walk anymore because of it but put everything on hold as Mom got progressively worse. Now we can all begin to heal again. Slowly.

My body’s been shaking since I started typing this post but there aren’t any tears left. I’m all cried out from months upon months of desperation, not knowing when and how it would end. The day Mom left for good I was so calm, so damn calm. I only cried when Gran was sitting next to her, holding her hand saying a prayer. My family is not the most religious bunch especially not my Mom but since she was unconscious it was more for my Gran. She needed it! And it was heartbreaking only my heart had already been broken a long while ago. It’s different to loose a parent, it’s the normal cycle of life but loosing your child is so much more wrong! So much more! It pains me to see Gran so sad.

The funeral is already arranged and will be next saturday so my cousins won’t need to be kept out of school a they have to get here from the south. We only have to pick a tree since she won’t be buried in a typical grave. I don’t care for graves and can’t predict if I’ll stay in this town once I finished studying so it’s the better alternative. I also bought clothes to wear for saturday. Gran wants me to dress in dark clothes for a while but I will only do so until the funeral. I don’t own a lot of black as I prefer colourful clothes and refuse to buy stuff I won’t wear later. Also, I should be allowed to be dressed in clothes I feel comfortable in, that I like and not just for the sake of a colour.

It may be silly to some of you that I had to recap this so detailed but somehow I needed to do so. Things only ever get real after I write them down, get them out. Thanks for staying with me. I foresee a lighter future for this blog and a recap of my awesome vacation in Canada.

Hallelujah

10 Aug

It’s almost 11 pm and I’m sitting on my balcony, in the dark. The thermometer tells me it’s 15°C and I’m lying on the chair in shorts waiting for the cold to numb my heartache.

Above me the starts are partially covered by clouds and Jeff Buckley’s ‘Hallelujah’ is playing on repeat because it soothes my aching heart and soul.

I feel like I’m falling apart – bit by bit- until nothing more is left. I need to cry but I don’t want to. I don’t want the puffy eyes and running nose that come with it. I want to hit things – break stuff. Instead I’m writing – trying to get my rage out.

I’m tired but I have a hard time falling asleep because so much is going on in my head. Today my beloved Granny collapsed at the doctor because of all that’s happening with my mom. She is 78 and also tired of this constant battle – this battle with a person who doesn’t eat. Fair enough the chemo treatment messes with her senses but still. It’s no wonder she is this weak – the woman doesn’t eat! Everything we make her, she picks at it and leaves half of it on her plate.

I can only hope Granny will have some strength restored from a long sleep. The doc gave her something so she’d be out a while. It’s bad enough I’m loosing one family member a bit every day, I don’t want to loose two at the same time!

I can’t wait to leave Mom at the hospital on monday because then I’ll have 2-4 days of not having to worry. She falls down nearly every day now. Do you know how hard it is to get a grown woman off the floor by yourself?  Someone that is weak? I’m quite strong but it’s still not enough. I’m getting better at it but it’s not how it’s supposed to be.

NOTHING IS LIKE IT’S SUPPOSED TO ANYMORE!!!!

Parents shouldn’t have to worry about their children like this! And yes, I shouldn’t be imprisoned by someone elses illness either. I don’t want to constantly have to worry when I leave the house.

JUST FUCK YOU CANCER. I CAN’T TAKE IT ANYMORE!!!!!

Thankfully we now have a placement for her beginning the day after I leave for Canada so she’ll be taken care of for 4 weeks.

When she falls, a part of me wishes that she hits her head badly enough on something so she dies. Or when I come into the room and she’s asleep in the TV chair and I can’t immediately see if she’s still breathing I hope for a second that she fell asleep for good. But then I see her chest moving and know she’s still with us.

I DON’T WANT TO FEEL LIKE THIS!!!! BUT I DO!! IT’S TERRIBLE!!!

It’s now 10 past 11 pm and I’ll go to bed now, read a bit – hoping it will move my mind off things – restore some happiness inside of me. The next post will be lighter, I promise!

Something’s Missing

16 Jul

I feel my posts are lacking lightness and happiness recently but I don’t know where to take it from, I’m sorry. I feel sad and lonely which is probably why I’m jeaouls of the people I know that have a clear understanding of where they’re headed.

I’m not doing enough of anything, taking care of my mom, keeping the house in order, finishing my studies… I know it, I feel it every day but I can’t change it.

My mom’s chemo treatments have had a bad effect on her blood lately so the next two rounds of chemo were delayed. We still don’t know when they will start again but as her blood tests are showing improvement it will probably not be for long. Still she is so weak, so forgetful and just not the person I knew for most of my life.

Often I ask myself if going through all this shit is really worth it. The possibility of surviving this kind of tumor is near to zero and I don’t feel like the time I have with her is doing me much good. As much as it pains me to say this, but for me, she more or less died a while ago even though her body is still around. But what else is left of that independent woman that raised me, the person who fought so many battles to give me everything she thought I might need? Not much.

My life has me in chains so to speak. She is just a phone call or a text message away and she lets me know this. I don’t feel like I have that much time to myself even though I hardly spent time with her except going to the doctors or other appointments with her. Every time she tells me how good a person I am my heart shouts “NO, I really am not!” because I feel like a looser. I wish I could break free of it all, just leave her behind and start my own life someplace else. But how is this ever going to be possible unless she dies?

I’m not talking to her much lately because I don’t want her advice and also because explaining stuff to her is just really annoying lately since she has a hard time understanding more difficult things. I’m still not finished with my student research project (but getting closer) and I don’t have a place for my thesis yet. She has been asking me about these things a lot for a couple of days now but I refuse to explain her why it’s taking me so damn long because I don’t have an answer for myself. I’m lazy, some things are still missing, I’m stubborn and I don’t know what I will do after graduation.

So I try to avoid talking about this but she keeps getting back to the subject, threatening to talk to our neighbour who is advising my project. I told her that I didn’t want her doing it but she won’t give it a rest. The thing is though that I have to do this on my own, I don’t want my mommy taking care of everything (which she also can’t do anymore). I’m grown up enough to sort out my own things or else how will I ever learn??? I’ve been clear about this, that I want  and need to do this on my own, but she doesn’t understand it.

She thinks we’re in a fight (which we’re not) because I don’t want to talk to her about it and she says that she feels our relationship has taken a bad turn. It probably has but not just recently. It’s been getting worse as her illness has gotten worse. Which makes me feel so, so bad. It does! But I can’t help it.

I want a goddamn break from everything around here which I will get in about four weeks when I’ll leave for my Canada trip. I can’t wait to leave! When I go out with friends I’m still not really free, she calls me with not so necessary things or texts me. I can’t ignore them because something serious could have happened but it hardly ever does. In Canada though I’ll have an excuse to leave my cell phone off because it would be too expensive to talk to her all the time. Ha!

Then again I feel like a horrible person because I can’t show her more empathy, be there for her more. I just don’t know how to do it.

The night she was rushed to the hospital as an emergency I told God (or whomever I believe in) that He could have her. Since He made it pretty clear that she won’t come out on the upper side of things, that it was ok with me if she died. I want it to be quick, maybe an aneurism bursting in her head…so she won’t feel a thing. It’s been three months now and she is still here and I wonder why. What’s the purpose of her sticking around this long?

– Well, I have no clue!

I only know that she is still here and I’m still here, both caught in the ties that bind us to each other. I’m so sorry this is such a depressing and dark post but I need to get things off my chest.

Most people say/ wish/ want to live their lives to the fullest, enjoy every moment of it. I don’t feel like I ever really did that. In general my life is a good one, I have many luxeries, enough to eat and drink. A functioning health care system, friends, hobbies and a loving but small family. Still I’m never satisfied and rather complain about it a lot.  I’m 24 and I feel so overwhelmed with the task that was laid upon me – taking care of my sick mother and being mostly alone with it except for my granny.

I wish I could do great things, help people, make the world a better place to live in, and yes, live my life to the fullest. But how can I do that when I fail at being a better person in my own home? How does one live the crap out of one’s life anyway?

Time seems to be fleeting, going faster with every day that goes by. How many days do I even have left before it is all over and I have to look back at what I did with my precious time on earth. Will I be sorry in the end?

My greatest fear is not being loved and not loving enough. Will I ever fall head over heals, madly in love with another person? Will I ever be loved back in an equal way? I want this so badly yet I’m afraid of putting myself out there. Being gay is most likely not improving my chances at finding a partner. I’m just so sick and tired of being alone, going to bed alone, waking up alone, going through my days hoping things will change but not having the the nerve to actually change things.

I feel as far away from accomplishing any of my dreams as possible. I don’t see the road anymore and some dreams are vanishing in the mist that covers most of them.

So far, the only thing I figured out about myself is, that I need to run at least once a week to keep my inner bitch tied to the ground. So, even though it rains and rains and rains, I go into the forest and run because it’s the only thing helping me these days.

This post has been long enough now, and I applaud everyone who made it this far. Thank you for enduring my ranting and complaining and whining. I’m also sorry for using ‘I’ so much. It must mean I’m pretty self-centered most of the time. See you tomorrow. Maybe my mind won’t be this dark after sleeping tonight? – Oh, one can only hope.

A little bit of everything

20 Jun

There’s not much happening right now except that I am tired even though it’s only 4pm. I blame the weather because it’s been raining for a while now and the grey in grey mix of not really bright days is getting a little bit to me. Hopefully tomorrow will be better because I have two performances and it really sucks when you have to play in the rain. The forecast says it will be dry but I’ve been burnt before, I don’t trust the forecasts blindly. One never should!

Other than that, it’s only 13 days until I will see my friend family from Sweden again. They are doing this amazing thing of visiting me only to see me act in Peter Pan! Can you believe it? – Me neither! I mean, they’re coming from Sweden!! This is crazy but so lovely and I admire them for it. It’s been over two years since I saw them last but they were so sweet to me while I was in Växjö. He is a trained opera singer who teaches at Malmö University now and she is a teacher for adults. During my stay in their hometown they took me to theater rehearsals which he was directing, I got to tag along when she went to junta with her friends and I was treated to lovely dinners and fikas!

In front of Lantcafé in Öhr. A lovely place for a fika on a sunday.

If you have no clue what a fika is, let me try to enlighten you. A fika is the best thing coming out of Sweden after IKEA and Astrid Lindgren! Not kidding. There is not a simple translation, like in one word, for it. A fika is a get-together with friends, you have coffee or tea, something simple to eat or so. It’s a meeting with friends and some food. I don’t know how to better explain it, but it’s cool, maybe just because I like the word so much. You see, it can be used as a noun and verb (amazing right?)! Oh, and it’s just so swedish :D Maybe you want a better explanation, click here.

In the same instance my mom is driving me nuts in the last couple of days. She is weaker than ever, well not ever but she hasn’t been this bad in a while. She forgets a lot of stuff, can’t keep her few appointments in order and so on. Simultaneously she tries to tell me how I have to do certain things and I’m sorry, but I refuse to be told what to do by someone who is unable to remember taking her meds three times a day. I have to keep not only my affairs in order but hers too and that is a big ugly mess.

Everything is so complicated with her, I prefer to let things come and then I’ll deal with what is right in front of me rather than going bananas way before anything even happens. You don’t have to complicate simple things, it’s ok to let them be the way they are. Clean and simple.

We don’t talk much anymore, the thing is, I don’t have much to say to her aside from asking her what she wants to eat, when her next appointment is and if she has taken her meds. I don’t want to talk about what shit they’re selling on QVC and I have no private stuff to share with her because it always comes back to haunt me (aside from there is nothing happening in my life anyways), because again she makes everything bigger than it needs to be. It’s sometimes like we don’t even speak the same language anymore. I don’t know. All I can think about is, that I want to move out and away as soon as possible but that I have no clue how to do that because it means leaving her alone and she cannot take care of herself at the moment.

Damn it, still too early to go to sleep. What do I do now? Oh, right, watch the pilot of Heroes, because, my will is weak and I’m too lazy/tired to read.

Running for my Sanity

14 Apr

Today pretty much sucked from its beginning even though today is saturday the 14th and not friday the 13th (I was born on a 13th of friday so I don’t really believe in that superstitious stuff surrounding the day). It all started with my mom falling down while doing our usual saturday morning shopping for the weekend. She lost the spare key to our house earlier so we needed to buy a replacement key but as she wanted to go into the shop, there was one pretty big step and she didn’t have the strength in her legs and fell down. It took 3 people to get her on her feet again. The worst is, this wasn’t the first time this has happened but at least the third that I was present.

After that, my day was already in the toilet because I again had to see how fragile she is and it breaks my heart. When she tells other people that the worst of her situation is, that she is unable to drive a car at the moment then I get angry, because it’s certainly not the worst! I’m actually relieved she is not out in traffic, causing accidents and what not, and she told that line a lot today, adding to my anger and frustration.

It’s getting harder every day to put on my mask of happiness so other people won’t see all the pain I’m in. My usual answer of “Fine” to the question of how I am doing comes up less and less as I am more and more answering with not good and then blabbing out my problems. I know that other people have problems as well, the blogosphere especially reminds me of it again and again. I also know there are millions of people out there doing way worse then me, but still, it doesn’t help me when I see my mom falling down, smashing things because she didn’t see them, running into stuff with a shopping cart, not being able to fasten her seatbelt…

At the supermarket I then bought a bag of my favorite potato chips, because that’s what I do when I am really upset, I eat and watch something. Today I chose Sex and the City 2, because it is idiotic but bound to have a fucking happy end. A half an hour before the end, I hit pause and went for a run, not because of all the stupid calories I ate before, but because I felt like it and it is the only way I know to deal with my anger and frustration and fear and all the other emotions I feel these days. I go into the woods and run up and down those small hills, pushing myself to run faster uphill so I nearly collapse when I get to the top.

I love the feeling of moving forward, that’s why treadmills are not for me, I need to see the changing scenery, being alone around God’s creation. It’s so beautiful to see how wind moves the grass, experiencing that ants can be pretty loud on dried leaves and pushing your body as hard as possible. Running gives my mind the time to think things over or let my constant heavy breathing drown out every thought and just be; be myself in motion, not stopping until I am at the bench where I have to stop and enjoy the landscape. Nothing bad can happen while you’re moving because you’re never in one place, the now can’t catch up while you’re running into the future.

My favorite place in the woods around here.

What I am trying to say with the title of this post is, I need to run, to put my frustration, anxiety, anger, self-loathing and hate into these runs in order to keep me sane because pushing my body to its limits sets free these little friends called endorphins and they can make someone happy, most of the times. Even if they fail their mission of cheering me up, at least I know that I have put all the negative energy into motion without punching someone or hurting people with my words, which sometimes I really can’t help doing because I’m this pretty direct and honest person that just has to say everything that comes to her mind without censoring it.

Although I had a great run (who knew that was possible with 175 gr. of potato chips in your tummy?!) I’m still not completely my cheerful self that I want to be but at least I am exhausted and calm now. I didn’t change my tires today, hopefully tomorrow, and I also did not work on my project for the university but frankly, I don’t feel like it today. I felt like shit to begin with and I am dwelling in the rest of these feelings to let them out which is better than to keep them bottled up forever. I really hope that after another good night’s sleep, everything will be better – I will be better, stronger, more hopeful…which I know is a very high aim.

As I was on my way home out of the woods, there were dark rain clouds in the sky so I told them to feel free to drench me in water, because it is a pretty cool feeling to be walking through raindrops when you don’t have to care about running around in wet clothes for the rest of the day. The funny thing is, they actually started to send down the rain so I looked up and thought “There is actually someone listening to me up there” which was a great feeling that might be only based on the fact that rain simply falls out of dark clouds, but who knows?!

At least I’m not angry, horny, frustrated and filled with hatred anymore, so I guess I’ve proven my point…a little bit. Now, I’m going to watch some more TV to live in worlds with happy endings and resolved problems of pretty people for a short while.

My glimpse at Hell…or am I already in it?

12 Mar

This was one of the worst weekends in history, at least for me. Saturday afternoon I walk downstairs to prepare myself a little snack and I hear sounds from my mom’s bedroom. I go there while thinking she may have a bad dream or so. Boy was I wrong! Her face was all swollen up and she was talking nonsense and that she is dizzy. I was horrified and didn’t know what to do, since it really looked bad. (My mom has terminal brain cancer so something like this was not totally unexpected but WTH?? Also, I am an only child and my father is long gone and not missed I should add. I’m left alone with most of it, except for my 78 years old grandma, who is great but not the youngest under the sun.)

I calles my grandma, who thankfully only lives a street away. She was instantly over at our house and when she saw mom’s condition didn’t know what to do either so we called 911. The ambulance came quickly and were not reluctant to take her with them to the hospital she is familiar to because she was operated there and got her chemotherapy at it as well. Just as most of the paramedic’s equipment was already stowed away in the ambulance again, she had a seizure or something similar. It looked like a nasty epileptic shock. I was so horrified and thankful that the doctor was already in the house at the same time. They stabilized her and took her to the hospital.

I had to take my car and follow them since my granny was riding shotgun in the ambulance. They made  an emergency CT upon arrival but it was not too revealing so my mom had to stay in the recovery room until this morning. They made an MRI this morning as well which came back as clear as it can be for a patient with a recurrent glioblastoma kind of brain tumor.

Needless to say, I spent my Saturday evening in the hospital was well as Sunday afternoon and Monday morning because we didn’t want her to be alone before the MRI as she was scared. I don’t mind doing all of this for her, after all she is my mom! But it’s just so hard doing most of it alone and she can be a real handful.

I get that it’s hard being dependent on other people, not being allowed to drive and all but as soon as she woke up in the hospital on Sunday morning she wanted to leave which was absolutely out of the question. The nurses were very nice and it is their job to help her and make sure she doesn’t fall but she got angry because she thinks she is fit and can do it all alone which she most certainly cannot do. I really wish it were different, but it’s not.

She is behaving like a little tyrant or a spoiled only-child, everything you do is just not as she wants it. I get that she is frustrated but I’m almost falling apart myself. After all, I’m only 24 years old, I shouldn’t be taking care of my dying mother. It’s too soon!!

Eventually she will die though and I already dread it because things are difficult enough as they are now and I don’t know how much more I can take since I have a ton of studying to do at the moment, too. It’ll only get worse for a while I guess until it will get better one day, only, when will this day come?

And the mess doesn’t end here. I just got a call saying she broke her left arm when she fell earlier today. Hip-Hip-Hooray, 6 weeks of wearing a cast. Seriously, haven’t I suffered enough?

I may be the worst person ever, but honestly, I wish she would die rather sooner than later. The chemotherapy can only stretch her life expectancy, give her more time, but what kind of time is that? I don’t want it, cause there is nothing of it I’m enjoying at the moment. Everything is work. Our house looks messy all the time, the door of the fridge is left open for more than half an hour sometimes and a lot of other stuff. The worst is, she doesn’t see herself as being that ill.

So, in conclusion I’m not sure whether I’m already in hell or just stuck with my nose against the window of it. Bear with me as I keep finding out, will you?!

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