I’m not writing in my Journal everyday now; I have either nothing to write about because all I’ve done is sleep, or because I just feel too bloody knackered to pick up a pen and write. I must make the effort and keep it up, as writing down the events of what I am going through is becoming more of a therapy to me than anything else.
Here I can talk about anything, not just about the chemo and its crappy side effects, but I can talk about my deepest inner thoughts and emotions. My journal doesn’t ridicule me; it doesn’t judge me, tell me what to do or laugh at me when I come out with silly little things that may sound stupid to others. It just stays quiet and listens.
The problem I have right now is where to start. The last time I wrote was about my sixth chemo . Well how I have I been since then?
Well!! The answer to that is; CRAP!
So why have I said ‘CRAP and the biggy is; how do I put it into words of how I am, and have been feeling?
Well here goes. Therapy time, bare with me as things may become a bit haywire as I try to get out ALL what is on my mind.
Everything is going wrong. When I started this journey, I was strong, positive and confident that I could do it, and without all the side effects that they told me I would experience. Yes I have gotten away with the majority of them, but the ones that I have, are taking their toll on me more and more, leaving me right down bloody miserable. I have to keep going and keep fighting to get rid of this disease, but I’m finding it harder now, and that is down to not being able to be me anymore, the old Karen wouldn’t ever be too tired to do things. The old Karen wouldn’t lounge around on a sofa all day, drifting in and out of sleep only to go to bed and repeat the day’s process all through the night. How can you be so tired but also suffer from insomnia, it beats me.
The tiredness has taken over me to the point that I am sleeping most of the time. This chemo has hit me hard compared to the last one’s, “Phewww, I ain’t even got the energy to lift my drink up anymore”. To move my little finger hurts, to move one of my toes hurts, to lift my head up, well it doesn’t hurt it just feels like it going fall off and go rolling across the floor as there seems to be no strength in my neck.
What I could do with is some good recipes for energy foods, to give me that boost, but the problem is that I can’t be arsed to cook anything anyway, so there’s no point in searching for any recipes. Maureen told me that broccoli and blue cheese soup is rich in protein and can boost energy levels, ‘Sorry’, but it’s no good telling me, just bloody make it. Why on earth I couldn’t bring myself round to asking her to make me some is beyond me, but surely when you talk about how bloody knackered you are, they should instinctively know that you’re too frickin knackered to start cooking.
I have lazed around on the sofa, drifting in and out of sleep, or drifting off into my own little world of thoughts of what my life was like before this cancer, how much energy I had, how much I loved my hair, how much I loved my life. Sometimes I drift off into a virtual world of cancer squatters, very dark, ugly and vicious. The imaginary wall I have been building, has somehow finished up with me trying to pluck the friggin squatters out with a pair of imaginary tweezers.. How stupid and idiotic does that sound? No wonder am bloody knackered, there is still a tumour size of 36mm so there is hell of a lot of squatters squashed up in there, that wriggle and wriggle about making me drop them as soon as catch them.
I don’t feel like me anymore; this cancer or should I say the chemo, has eaten away at the person I am bit by bit to the point that I don’t recognise myself. I am not the same person as I was before the diagnosis; I wouldn’t be human if I was. Facing a life threatening disease is bound to change anyone. I look in the mirror and see a stranger, and not just because I am bald.
My eyes have the biggest dark circles around them now, they appear sunken and when I look into my eyes? They look empty. I stare at my reflection, trying to find me in there, I know I’m still there somewhere, but I can’t find me. All I see is sadness, which makes me feel sadder than I already feel. I am beginning to wonder if I will ever be me again.
My mouth doesn’t look like mine now either, as my lips have become thinner. This is either because my pob looking cheeks have gotten way out of control, or a knock on effect of my gums receding? Did I mention that? I’m not sure and can’t remember if I did or not. I’m not too sure when it started, but my front lower teeth became very sensitive and my gum started to recede, revealing root of a tooth. I mentioned it to my oncologist, but he has advised NOT to go to the dentist until after the chemo is done, and has given me some mouth wash and antibacterial mouth drops to swish around my mouth several times a day. I have always looked after my teeth, never had a filling or anything, and now the chemo is spoiling all that and I’m scared I’m going to lose my teeth. I know I shouldn’t worry about things such as my teeth, and should be saying ‘aw well, Think yourself lucky girl, your alive’, but I don’t feel like saying such crap. Yes I am alive, but I still feel that I wouldn’t be where I am right now if it wasn’t for that pig ignorant, cocky stupid cow of a doctor.
I was once a very confidence person, but I suppose that is something that was bound to go out the window, after going from someone who had long shiny blonde hair with a petite toned figure to someone who looks more like an inflated beach ball.
Another part of me is my personality; I have read so many times that this is one part of you that cancer cannot take away. But I am beginning to think differently. Where has all the laughter gone, my stupid moments that used to have people in stitches. I am not saying that I am, or was the comedian of the year, far from it; don’t forget I was blonde and therefore had many many blonde moments, of saying something really dump and stupid, but could laugh at myself as much, or if not more than everyone else.
Lee is keeping me going, he is trying his hardest to keep making me laugh , but this task is getting harder and harder for him to do. Where would I be without him? Now that question is something that I don’t even dare to imagine. Realistically I don’t really need to imagine cos I already know. I would have given up and given in to the cancer and its treatments, only to travel down the deep road of depression that is impossible to get out of, or maybe I am already travelling down that path. I can’t let myself go down there. I don’t think I am. I think it’s just a buildup of the tiredness, the lack of taste, the sore mouth, the aching that my body is now experiencing, the hot flushes and the lack of proper sleep. All these side effects are bound to have an effect and right now that effect is; I have had enough. I want off the rollercoaster. I want my old life back.
There is the humiliation of not being able talk properly too, getting my words mixed up, not remembering words or using the wrong friggin words. Well it isn’t good is it when you stumble around trying to think of the name of your own mother. Then there is the case of needing anger management, as I am becoming very short tempered and snappy, this is down to frustration more than anything, because if someone asks me something, I then have to use my brain when you’re so bloody knackered this can be bloody frustrating, and I finish up snapping back at the person with the answer, and usually this person is Lee. Poor Lee, he takes the brunt of it all and if anyone is being brave in this cancer journey I will have to say it his him. No man should have to endure being snapped at just because he asks you if you would like him to run a bath for you or make you a drink.
The other day Lee asked me if I wanted a cuppa, he was patient and waited for me to answer in my own time. “I’ll make it” I said as I got up off the sofa “Are you sure” he asked. “I’m not bloody useless” I snapped at him as I barged passed, leaving him bewildered to what he had done wrong. I stormed into the kitchen holding back tears and slammed around putting the kettle on, spooning coffee into the mugs, my fingers felt weird, they were tingling and feeling quite numb, then I dropped the spoon and thousands of coffee granules spilled across the kitchen work top and onto the floor. That was it; I dropped to the floor curling up into a ball, crying uncontrollably. Lee was straight to my side with his arms around me, comforting me on the kitchen floor for what seemed like the longest time. The only thing that came out of my mouth repeatedly was “I’m so sorry”. Why had I snapped, he hadn’t even said I was useless, he was just offering to make me a drink, but yet I had snapped, and then made myself feel even worse because I had realised what I had done. This sort of behavior is not normal, but Lee takes it in his stride and repeatedly tells me it’s not my fault and that it’s all down to the treatment. I know the chemo has changed my appearance, my concentration and moods, so realistically I should then become the old me once the drugs are done with. Right?
It’s not just Lee that I’m snapping at. It’s Luke too. He’s only 8 years old and yet I am snapping at him for silly things. He’s a kid for God sake, not a young adult. Leaving crumbs on worktops, trailing in dirt and leaving toys out are what kids do, but yet I snap at him to clear up after himself. This is not me; I’ve always been so placid. I’ve turned into the wicked witch of the west and don’t know how to control it. I don’t know how to control me and it scares me that I will get worse.
So far, the only person who is getting off lightly is Max, and I think this is because I think he feels worse than I do, still afraid of shadows and so small, I have become very protective of him, even Lee has noticed this and has shouted more than I care to remember “Will you put him down, He’s a dog for Gods Sake’. I don’t though, I let him sit there contently on my knee, and he makes me feel better, especially when it’s just him and me.
To make matters worse is the thought of the chemo is now making me feel sick. Not the actual chemo itself, just the thought of the awful stuff. Each passing day when I think of how long it is until my next dose, my stomach churns, I swear that I can smell it and even taste it. I feel so sick to the point that my mouth waters with that nasty taste of acid followed by my whole body going hot and cold, this sends me all dizzy where I feel I’m going to pass out. I cannot believe that two weeks has gone by already and tomorrow I am back at the oncologist for my blood work ready for my next dose on Monday. I am dreading it, dreading the smell, the long wait to get started and the long process of it invading my veins and body, not to mention the way it makes me feel with all the steroids that I have to take with it.
I know crying into my journal isn’t the answer, but I do know that talking is. I am talking to Lee, but I am finding it hard to get the right words out, which is making me feel more frustrated and so all that comes out is tears. I can cry here and gabble on to my heart’s content and maybe by getting it out, I will be able to pick myself back up. I hope so.
I have said before that my family and Lee say that I hide how I truly feel. I have told Lee that he can pick up my journal anytime he likes to read what I say in here. Not that he would find it very interesting, just me gabbling on about silly stuff and stuff that he already knows because I have told him anyway. My mum on the other hand doesn’t believe a word I say half the time. Lately she has questioned my answer of ‘I’m fine’ with “Now How are you really”. Which obviously I have told her “Really I am fine”. Hey it’s not my fault that she seems to ring when I’m feeling good, or Fine as I like to say, but if I am tired I have told her, I have told her about my aches, about my mouth and gums. Sometimes I wish she would ring on one of my down times, maybe it would do me good to have a real good cry about it to someone else as it’s mainly when Lee is at work and I’m on my own that I have these times. I was close to ringing her the other day, but after holding the phone for a good half our thinking what to say. The moment had gone and I was fine again.
Spending long hours on my own is a problem; it gives me way too much time to think about things, way too much time dwelling on the situation and way too much time thinking of the ‘What if’s’. It’s my inner thoughts that are dangerous. Dwelling and visualising scenarios rather than focusing on the positives and looking forward. So what do I Dwell on, that is obvious. I’m still dwelling on the fact that ‘Dr X’ called me paranoid. I keep saying to myself; "If only", If Only I had pushed more for her to listen to me. If Only, I had gone back to my GP the day after, or the day after that. If Only, I hadn't left it so long. If Only, I had been stronger and not taken that shit and attitude from her. There are a lot of "If Only's" but I can't go back and change things. Lee tells me not to dwell on things and not to worry. He tells me that I am strong and can do this. He tells me I will be done soon and will be able to start putting our lives back together. Yes; I said ‘our lives’. This cancer isn’t just affecting me; it’s affecting everyone else around me, my family and most of all Lee. Lee is the one that has watched me change by each passing day, getting more tired and weaker from the chemo and yet, he still smiles and makes jokes as always. I have noticed that he too goes off into his own little world. What is he thinking? But yet, not once has he talked to me about how he is feeling. I know the changes in me are getting to him, I’ve already said he’s calling me ignorant for not answering him straight away when he talks to me or asks a question. It’s bound to get to him.
I know I should be thankful that the cancer was at last picked up, and I’m having the treatment to get rid of it. But the main factor here is that this cancer has taken away me. Taken away the way I look, the way I feel and the way I react with people. If I don’t recognise me, then how the hell can anyone else. How is Lee putting up with me?
I have lost count this last 2 weeks at the amount of times I have cried and the words ‘I can’t do this anymore’ have come out of my mouth, but yet I know I have to carry on. I have to be more patient, learn to accept help more and maybe try and count to ten if something bugs me so I don’t go snapping everyone’s heads off anymore. I have to get back to the more positive person that I have been. But how do I do that, when it is happening so fast that I don’t have time to think about what I am doing or about to do, will I bounce back to what and who I used to be after the treatment is all done, or will I still be a person that even I don’t recognise anymore?
May be its about coming to terms with how I look and how the treatment is making me feel? But I thought I had already done that. I embraced my hair falling out as a good sign, I accepted that I was gaining weight and I have accepted that I will have a very long operation that will leave me disfigured. I embraced all these things because I know deep down that they will at the end of the day save my life.
The main thing that I need to hold on to right now is that I only have another 2 more chemo treatments to do and with them being only 2 wks apart, means this part of my treatment will be over soon, even if this tiredness continues to get worst then so be it. I have come this far and a little thing called tiredness will not get in my way of being cancer free.
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“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.”. . Lance Armstrong |
