Remission and Guilt

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A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

 

So the latest CT scan went well….very well in fact because the Doctor officially granted me REMISSION status! Yes…. Remission. As in, he doesn’t think that I have anything to worry about, that I will continue with my five year check-up routine but he isn’t expecting anything bad to come back. He put my chances at around 10% of reoccurrence. He told me to go celebrate life and not worry so much. I’m feeling so excited that I slept an extra three hours this morning to celebrate. I don’t know why (duh!) I get so stressed around check-up time that I don’t sleep and then after the appointment it’s like my body wants to catch up on all the sleep it missed in the stress up to the appointment. The fact I was feeling some strong pains in the last few months had me pretty convinced that the cancer had come back so to get the news that I’m clear has thrown me for a happy loop. So when do I catch up with the happy?

Because here’s the weird part. I’m thrilled to be sure. I mean, seriously, remission is the word most cancer patients want to hear about themselves and I’ve heard it. But I feel a little guilty, like, why me? Why do I get to be in remission and other people that I know are battling for their lives and don’t get the same news? I felt guilty putting the status up on Facebook. In fact, I knew I was in remission for several hours before I put it up on Facebook even though there were people waiting for the news. Because I feel guilty. I get to face a normal life now, pretty free from the fear of a reoccurrence and other people are being told that their cancer has gone to stage four and its terminal.

I’m not complaining. I don’t want the doctor to call me back and tell me he was messing with my mind, my cancer has actually grown to the next stage now. But it’s hard to deal with such good news and not feel bad for the friends and acquaintances that don’t get such words from their doctors. I know I should be breaking open the non-alcoholic fizzy wine that’s sitting in my fridge and drinking it straight from the bottle, but I really don’t want to. I’m sitting here in quietness of my family room, aware of how blessed I am. I don’t know how to celebrate life when I’m so guilty that for other people  it’s a daily struggle just to survive.

I know… I suck. My attitude sucks. My lack of celebration sucks. I’m so grateful that I get to face being a mother to Bronwen for a lot longer than the statistics had me believing. I get to do things with my life that I’ve always wanted to. I get to pretend I’m a writer for a lot longer! I wish I could just expel the other people from my mind and celebrate without thinking about them. I know that they wouldn’t begrudge me the news that I’m in remission. I’m sure they would celebrate my good news with open hearts. But I also know there would be a little part of them that would question, why not me? And why not them? Why do they face terminal and I get off ‘scott free.’ I think I had built myself up for a reoccurrence and it hasn’t happened and my head and heart are still catching up with the news.

Remission. It’s a strange beast.

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Gastrografin – One of Life’s Experiences

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Gastrografin (Diatrizoate Meglumine and Diatrizoate Sodium Solution) is a palatable lemon-flavored water-soluble iodinated radiopaque contrast medium for oral or rectal administration only.

Oh Lord, Gastrografin is evil stuff to drink down and I had to drink two large cups of the stuff for my CT scan yesterday. And I wasn’t allowed to glug it down (if that were even possible) as I had to drink it slowly over a period of one and a half hours – it was a very long appointment.

Even just thinking about it now has me remembering the taste but I lack the skills to narrow down what exactly made it so bad. It didn’t taste like anything I know (palatable lemon my arse!), it wasn’t sour or bitter but with every mouthful of the drink  I was gagging and at one point I did throw it up. Truly it was foul. A technician suggested that it tasted like bad country town water…. I’ve never tasted water like that in any town I’ve ever been to, so I pity the town that has water like that.

It was so bad that I went hunting through my backpack and found a very old packet (like years old!) of chewing gum (I hate chewing gum) and actually stuffed two pieces in my mouth to try and get rid of the taste. My friend Charmayne calls it the lemonade from hell… and I have to agree.

Then to add serious insult to injury, I had to have an IV put in as well…. it was really most unfair. The dye they put in via the IV makes you feel like you’ve wet your pants which is a delightful experience at any time, but the technician assured me that they never had anyone wet themselves for real before. Can I just say I prayed I wasn’t their first!

But the scan was over very quickly (ten minutes and done) and now begins the wait for the results which will come through in a couple of weeks. I’m expecting everything to be fine. My CA-125 was stable in the last test so I’m not going to allow myself to get into a tizzy over it again. I’m more worried about the blood test I had to check on my kidney function than worrying that the scan will show any more growths.

And may I suggest that if you ever have to drink Gastrografin you don’t have butter chicken for dinner the same day as you will be burping up Gastrografin and butter chicken all evening?

Yeah, chalk that up to one of life’s experiences.

Russian Roulette

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There is a fine line between comfort and safety.

I have been experiencing some physical symptoms that have had me worried for a few weeks. Things that if I hadn’t had the diagnosis of ovarian cancer would have been easy to overlook and dismiss as nothing very important. But with the official cancer stamp on my medical file I’ve been worried that the symptoms I’ve been experiencing have been indicative of something more serious. So I rang the hospital today. I wouldn’t have done so myself but after embarrassing myself in front of Marie-Helene last night I finally confessed to her what has been going on and she made me promise to call the hospital and tell my doctor what’s going on. So I did.

The nurse was wonderful and caring and had just the right amount of concern in her voice. No; I am not worrying about nothing, and no it doesn’t sound like a bladder infection, but at the same time she can’t make a diagnosis over the phone as there are so many other issues and physical things that need to be ruled out before jumping to any one conclusion. I was offered an emergency appointment next Tuesday – which I declined. I just don’t trust the doctor that it would have been with. I don’t trust that he would have taken my concerns seriously and if I have to have physically invasive investigations (and I know I will) I don’t like the idea of him doing them. I would rather wait for my own doctor on the 29th to discuss what’s going on and deal with him. He has taken me through each surgery I’ve had and has been my overseeing doctor through all the chemotherapy. I trust him with my life. Truthfully, you don’t really get a choice about trusting someone when you are in this situation. You get the doctor that is on duty that day and it’s hit or miss as to whether you bond with them, but you have to trust that they are making the right decisions for your health care. I’ve had to trust someone and my doctor has made it easy. If my symptoms get any worse I am to contact the hospital immediately and if things really digress I am to go to Emergency Department immediately.

So of course, now my paranoia is hitting rooftop levels.

And I’m second guessing myself completely. Should I have taken the appointment on Tuesday and sucked it up buttercup? But isn’t being comfortable with your doctor something equally important? In the big scheme of things, what’s a couple more weeks’ difference going to really make? Or are they, as the saying goes, going to be my famous last words? I absolutely hate cancer for this. For this constant fear that I try to ignore but fail at in equal measure. No choice I make is going to be the right one in the long term outlook of this life. I am forever going to be walking through life with the sentence of cancer hanging like a dead man over me. There is never going to be a time when I don’t think, however fleetingly, that maybe it’s the cancer. It’s hard to be upbeat and positive when the reality of knowing exactly what chemotherapy is like is a very tangible, experiential memory.

It’s like playing Russian roulette. Spin the cylinder with the solitary bullet, put the gun to your temple, pull the trigger. Click. Take the appointment, don’t take the appointment, wait for the right doctor or get the doctor you feel ill at ease with, think the symptoms are serious, ignore the symptoms, explain the symptoms away and dream about it at night and expect the worst. Click click click. I don’t know if I’ve made the right call. I don’t know if comfort is better than immediacy. I’m sick with fear and immobilised with terror. I don’t want to waste the time and I’m worried that I’m wasting time.

There are no easy answers.

What Would Super Girl Do?

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Oh. I just realised that with school holidays ending I have to start getting my shiz together to join the gym like I promised I would at the start of the summer holidays. Part of me is excited at the thought; I used to enjoy going to the gym. And part of me is like… pooh! I don’t wanna! Can’t I just be a lump on the couch?

But chatting with my friend Joanne has made me realise that chemotherapy wasn’t really that long ago; it was a scant few months back when I was crippled with side effects and fighting for my life. That as good as I feel now, there are still limitations as to what I can put my body through and I need to remember to ease into the whole gym experience; not go rushing in with no regard to what I have been through these last couple of years.

And I really don’t want to write this next sentence, but the truth is I have to remember that the cancer is still inside me; it’s asleep but it’s there. Not that going to the gym is going to wake it up or anything, but the reality is I am still a person with cancer. I need to remember that I am not all powerful and capable like I want to believe I am. I have to avoid the “I have survived chemotherapy, I can do anything!” mentality.  I cannot leap tall buildings in a single bound, I do not have superhuman strength, vision or speed and I do not have a stylised “S” tattooed on my shirt. Thinking about it, my morning breath could be considered superhuman I suppose.

Part of me really wants to go back to GoodLife gym as they have women only gyms and I feel more comfortable there, but the GoodLife gym closest to me is a mixed gym. Going to the women’s only gym would require me to take a bus ride, and the local council gym that is only a five minute walk away from my house is mixed, although it undoubtedly is a much cheaper option. It all comes down to how comfortable I feel.

A phone call later and it turns out that the GoodLife gym membership is about $30 a fortnight; expensive and yet not. If I ended going the five or six days a week like I used to it would be around $3 a visit… that isn’t so bad really. Am I not worth that kind of investment? If I would be more faithful in going to the gym because I felt more comfortable, wouldn’t that be the right way to go?

It seems like a big decision right now.

Do I allow money or personal comfort rule my world?

What would Super Girl do?

Fighting My Fears

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The weather has turned colder here, but the smell of autumn isn’t in the air, so I don’t have to hit the panic button just yet. I say colder, it’s like a cool summer day… I think that today we got to 21C which isn’t that low but feels low after the days of 40+C that we were going through not that long ago.

It’s hard to believe that we are going to be heading into the cold weather so soon. September is a great time weather wise here in Ottawa, but it goes by so fast and then suddenly we are into the frigid weather and the winter time blues hit. I missed most of last winter because I was so sick with chemotherapy, but I’m going to be healthier this year I trust.

Having said that, I do have to write down something that freaks me out and I need to remember it for the appointment at the end of next month rather than shoving it to the back of my mind and forgetting about it. And if I write it down here and tell you, chances are someone is going to remember and remind me of it before my appointment – right?

I was laid low today at lunch time with extreme lower belly pain – the same kind of pain I would get pre June operation.

Of course, with ovarian cancer being a chronic disease, I’m freaking out that something is going on down there and that the cancer is active again. I can’t help it; my brain has just flown there. It was the same kind of twisting pain that I used to feel. I’m trying to hide the panic I’m feeling from Bronwen; why the hell should she know or worry about anything when it might not be anything at all?

And it’s not going to be anything is it? It was just a rare fluke of pain… I just need to do #2 or fart or something. But I remember clear as day the Doctor asking me in the previous check-up if I had felt any abdominal pain. Shite shite shite.

Once the word cancer is spoken over you it’s hard to think or behave in the same way anymore. Everything is tinged with the alarm of it coming back. The word ‘chronic’ reverberates around my skull. And the truth of it is that life can’t ever go back to how it was, when there was freedom from anxiety.  I try to carry my faith into the face of fear, but most of the time I have to admit defeat. It’s the unspoken conversation. It’s the unseen truth. It’s there no matter how much I pray.

And I feel guilty at being so afraid, as if I am letting people down for having fears in the first place.  I get secretly angry when people tell me to give it to God and not worry. I want to yell at them that giving it to God isn’t as easy as they say. I want them to stop judging me for failing because I’m scared. It’s hard not to worry when you don’t have the ability to see what’s happening inside your own body. I didn’t even suspect I had cancer; it never crossed my mind until the Doctors spoke of it. Why would you think of cancer?

Now it’s all I can think of.

The Familiarity of the Day

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Its 5:54 am and I’ve been awake since before 3am. I really should be asleep. I hate nights like this one. I was so tired at 10pm when I crawled into bed I fell instantly asleep.

I woke up because the dogs wanted out and then boom… for neither love nor money could I get back to sleep. Ugh. Tossing and turning for hours. I even did my skin care routine at 4am because I had been so tired at 10pm I could barely get my teeth cleaned before I crashed.

And being tired means that later today I am going to be feeling like I’m hung over (tired, silly and incapable of making a smart decision) without any of the so called fun of getting physically drunk. Not that getting drunk is my thing. I think I’ve been drunk once, maybe twice in my life which isn’t a bad record at my age when you think about it.But truthfully, at this time of the morning, who wants to think about anything really?

My two boys have dug the blankets up on the chair so that it resembles a giant nest and are currently trying to get settled so they can sleep whilst still being in the same room as me. Never mind. I’ll fold the blankets up again later. I have nothing better to do with my time. Silly little munchkins.

The sun is up now… when I started writing these pages the world was still dark and the street lights glared and I had to have the lights on in the kitchen.

It’s so strange how the world keeps turning, even when you think everything has stopped and nothing is happening. I haven’t been able to sleep, so surely the rest of the world has hit the pause button with me and is still in a haze of being not quite right.

And yet it’s a comfort that the world goes on too. That things will still happen even if I’m not. That life goes on.

Although there were times when I first got diagnosed where I didn’t think the world had a right to keep on going forward. When I felt like I was stuck in a time loop where I kept hearing the doctor say ‘We found cancer” and yet people around me keep living their lives like nothing was going on.

The sun rose and the sun set and somehow I found my way through that time and now I can watch the dark of the night slip into the brilliance of the day and rejoice in the familiarity of it all.