Down, but not staying down

I always intended to write honestly. So here I am.

I am now half way through chemo and there has been surprisingly a full week of nausea this time. There are mouth ulcers. They come and go. Chemo really is an accumulation of detriment on the body and mind. The immune system, the digestive system, the emotional system. I have had thoughts about not being able to go the distance with this treatment. The dread of three more rounds and the unknown of a new drug Taxotere for the next cycle. Then some new days brings a more positive attitude and I get on with it.

I have lost interest in food. Lost interest in handling it, purchasing it and preparing it which makes the task of running a household interesting. I could be served cardboard or raw oats for the rest of the year and I don’t think it would phase me. Part of me wants to go to the finest restaurants and conquer this disinterest. But it might be a waste of time at the moment.

The “Depression Procession” is rapidly marching my way. Some days I feel like I’m at a blues festival in New Orleans trapped in the crowd, trying to get away from the sombre marching band that is approaching. But no matter where I turn, the music just keeps getting louder and louder. And it’s out of tune.

Something has changed in me. I can’t quite put my finger on it. Four months has passed since my life took a turn in a different direction. When I face people now and interact with them in everyday conversation there are tears welling behind my eyes but thankfully they don’t spill out.

I am sleeping longer. There are moments when I am less interested in being with my family. Yet when I am given solitude I just feel isolated. I am having loads of thoughts about this disease and about the changes in me since Christmas. There are some irrational doubts about whether I will ever get over it. It’s very easy to be swept away with the tide of chemo induced nausea. Let the negative thoughts creep in. I have found myself thinking thoughts such as … I’m such a burden, sometimes it would be easier for my family if I wasn’t here. I’m not working. I’m not productive. I’m getting left behind in life. Irrational thoughts I know. This must be the cancer experience. Four months in and the wheels have stopped moving. The survival mode of running with it has switched off and you are just left to get on with it. With reality or this ‘new normal’.

At a prep info school night I started to cry. Bam! Out of nowhere! Waves of emotion flood in like a tsunami when you least are expecting it. It occurred to me that it is possible I might not see my boys finish their primary schooling. See their sports days or see them come home exhausted from camps. I had to look at my partner and stop this train of thought. And when the prep teachers where delivering their Powerpoint Presentation of the school to new parents, I wasn’t listening to their words, I was looking at their breasts. Wondering it those breasts would always be healthy for them. The triggers are surprising.

I am lamenting all the things I have lost this year. Yet I am conscious of all the things I have gained. It’s just the mind has been wandering towards the deficits a little more often this week.

I have been thinking about these oceans of distance that have emerged with friends that were once part of my everyday life, friends I used to have weekly contact with. People I have not even received a text message from since I was diagnosed. Funny how this disease scares people so much. It is hard on everyone, friends, family, workmates. Staying away is the worst thing anyone can do to someone diagnosed with cancer. I read about this alot and I understand it now.

I’ve got a bucket load to talk about with the hospital psychologist. Four months of stuff in fact. The appointment can’t come soon enough!

All of this is part of a process. The mental perspective is taking a beating. I am acutely aware of this. I will continue to move my body through walking and running when I can and talk to people and even let myself cry when the context is right. Just not at prep info nights.

I will bounce up again. I always do. It might be tomorrow or it might be in the springtime. But bounce I will.

No I am not!

No I am not!


12 Comments on “Down, but not staying down”

  1. helensamia says:

    As you say some depression is rolling in.. I am so glad you have an appointment with the psychologist.. This is a part of cancer that people do not always expect but it is good that you recognise it so you can get some help.. Part of my work is as a Cancer counsellor and I see the relief people get from just being able to talk about their experience.. People often hide what they are truly feeling to protect those around them.. Remember too that crying is the bodies way of healing .. Take care .. Helen xx

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  2. NotDownOrOut says:

    Please hang in there. You are so worthwhile as a person. I think many out here have experienced some of these fears and concerns at some time. Imagining all of them converging in a month or several months is daunting. No wonder you are feeling those tears welling up. But your blog–which is only one facet of you–tells me you could never be more burden than blessing. And your family must love you to pieces. Hang on for the bounce. You are making a difference with your life. Damn cancer.

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  3. Steve says:

    A tough job, putting your ups and your downs out there for all to see Lisa. You write so well.
    You might have to sit down and watch a Rocky movie. Seeing Stallone get the crap beat out of him, and yet he still wins through in the end. I think it is the music that lifts him and us to victory.
    What is your victory music Lisa?
    I’m looking forward to the day you run to the top of those steps and punch the air, screaming victory.

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  4. I totally recognise where you are. It’s like an endless white hall that you have to haul yourself down alone, full of pain and boredom and uselessness. At the time it seems it will go on for ever. At the time it seems you sometimes can’t stand another moment of it. BUT YOU CAN. You just have to let yourself fail to be brilliant for a while… be nothing… just exist, and try to cope.

    It sucks. But it’s the only path to healing for some of us. Hang in there. It will end, and yes, you will bounce.

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  5. Val Jackman says:

    I am feeling for you … and understanding all your fears and depressive thoughts. You are an inspiration … you are doing a wonderfu job … it is so hard when you have to keep up for your family when you dont feel like it. … I love your blogs and hope they give you something to look forward to writing every week… you have a gift with words. I know what it is like to have everything taste like cardboard … you will get over that… Just know that there are heaps of people, like me, who dont even know you, but feel like we do, who are praying for you and wanting to help in anyway we can. If that is just by writing a little note now and then, that’s good. I am sure you have got heaps of friends and family willling to hekp with the kids … let them… esp in getting meals for them at this time when you dont feel up to it. Good luck and lots of love and light. You are very brave and a lovely lady who will beat this … dont feel bad about the tears and fears … thats only natural. Take care! xo

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  6. Clint S says:

    Keep strong Lisa. I am sure there are many people out there on your side to beat this, I know I am. Keep the positive attitude and faith you have and remember although people may distance themselves, it is not because they don’t, they are as scared as you are.

    People react differently to adversity and order to not face it head. I find that if you fix the issues you have control of and not worry about things beyond your control the stress is less overwhelming and it will not all build up and hit you during an inopportune time. Keep fighting with everything you have no matter how hard it feels at the time.

    Good luck my dear and know if you ever need anything don’t be afraid to ask. You’ll be surprised by people for different reasons both good and bad but always focus on the good.

    Take care
    Clint

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  7. Nina V says:

    Hey Lisa,

    Sounds like you have hit a wall now, but you are actually over the hump, over half way. Just remember, all things pass and you will come through it. As usual, beautifully written and also brutally honest which adds to to the value of your story.

    Like

  8. Karen Roberston says:

    In the midst of winter, I finally found that there was in me an invincible summer. I am sitting here blowing you some sunshine Lise. X

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  9. Lisa, this is beautifully written and I am sorry that this is the experience you are having right now. I also see that you have hope despite the loneliness and pain. That will get you through. I am so glad you are seeing a psychologist and I hope that he/she is helpful. XOXOXO.

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  10. stemimi says:

    I would lie on the couch in the middle of all the family activity. I was resting/sleeping but not alone. My chemo induced cocoon allowed me to tune out the noise but the dog could cuddle, my grandson would play around me, and my husband would give me rubs and kisses. I think I gave you the info about the “magic mouthwash” to ease the ulcers?

    My nausea was like my morning sickness: if it didn’t look, smell, or taste good and I ate it anyways… forget-about-it!!! I found two things I could eat that kept me hydrated, which is really crucial for you right now. Watermelon and frozen cherries. And watermelon in the wintertime here in Florida was over $11 for a small seedless one from Argentina, I think. I could eat one a day. It wasn’t that it tasted all that great but it didn’t make me nauseous and, again, kept me hydrated. So keep looking and indulge! You won’t be forming any bad habits now that you cannot resist later!

    Hang in there Lisey. This is liminal time for you now. You may not see the light at the end of the tunnel yet, but it is there and shining brightly. Call in the reinforcements to fill in for you, shop, cook, whatever you need. I cried a lot when I was alone, to just release the pain and get it out of me. Then I could face the world with a slightly cracked smile and a wan sense of humor.

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  11. Steph says:

    Chemo sucks. I know exactly how you feel. There were many times I wanted to give up too, right up until the very end. It helps to feel angry and miserable sometimes, I think. You have every right to feel like you do. I was just saying to my husband tonight that I’m already starting to forget how I felt during chemo, even though I felt at my lowest only less than two months ago. It is a rough go, but before you know it it will be in the past and you’ll be like, wow, I can’t believe I actually did that, I’m amazing! Hope you’re feeling better soon. And if you’re having bad problems with nausea, it isn’t a common side effect with taxotere so you should be done with that crappy part!

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  12. Kelly says:

    You are doing this so you do see your boys finish school and beyond. I wish you positive energy in these hard times and want you to know that you are in my thoughts often. Lots of love your way Lisa xo

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