Saturation point

First of all, a bit on the “Look Good, Feel Better” workshop that I attended at the hospital where I have my chemotherapy last week.  The program is available for all women going through chemotherapy, and I highly recommend it.  Cancer brings with it a lot of affronts to your self-esteem and image.  There are the extra lines that worry and fear etch into your face.  Dry skin, changes associated with menopause, which most (including myself) go into prematurely due to cancer treatment.  And of course, most people lose their hair, and this can be the biggest obstacle of all.  In my cancer support group, we often refer to cancer as “the gift that keeps on giving”, with a huge dose of sarcasm, as really, sometimes it seems endless, what it can take from your life.

At “Look Good, Feel Better”, they understand this, and over the course of a morning, they try to give you a little of it back.   You are gifted a lot of skincare and make up and volunteers from the beauty industry then spend an hour showing you how to care for your skin, and apply make up, especially during cancer treatment.  It included things like drawing on your eyebrows in a natural looking way, and although I have not lost my eyebrows, I could see what it meant to the women who had, to see their “normal” face to start to appear again, before their eyes.

Here I am after my make up session:

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The second hour, after a lovely morning tea, was devoted to the fitting, and trying on of wigs.  Two lovely ladies came from the “wig library”, with a multitude of wigs for the participants to try on.  Out of the 16 women there, I was the only one that had not lost my hair (it is rare to lose your hair during first line chemotherapy for bowel cancer), and I thought I would be at a bit of a loose end, but I had such a lovely time interacting and chatting to the other women who were trying on the wigs.  To be quite honest it was deeply moving, to see these women, their eyes shining when they looked in the mirror.  To look a little more like “them”, and to help them dream of what all of us with cancer want…a dream that there will be a life again at the end of this, and we will find ourselves, the person we used to be at the other end of it.  Very different, very changed, maybe better for what we have been through, but…..still us.  Because when you have cancer you get totally lost in it.

Reality bit the next day when I was admitted to The Alfred Hospital in Melbourne, for the first stage of my liver resection procedure.  This was a relatively minor procedure, known as a “portal vein embolisation”, which aims to block the blood supply to the “worst” half of the liver, and makes the “better” half grow, so the surgeon has more liver to work with when he completes the procedure in early December, at which time he will remove all of the right lobe of my liver, and also take one tumour from the left.

Don’t get me wrong, I was GLAD to be going in for this procedure.  The pretty much guarantees that the liver resection will go ahead, and this is  something that we have spent nearly 11 months working towards, in fact, the surgery will take place on pretty much the first anniversary of my diagnosis.  Last December I was a person with no hope, and only a small amount of time, and in all honesty, this December was not one I was sure of seeing.  Now, the end of this year could find me in remission, and with some hope to cling to.  It’s a good thing, a very good thing.  To have another Christmas, to turn my face to the sun, to swim with my girls, to learn again to face life with courage, and dream of a future that is not so finite.

This admission taught me though, that I am very near the limits of what I can tolerate mentally on this journey.  If everything goes “well”, I can just about manage, but anything outside my comfort zone sends me right over the edge.  I hyperventilated nearly all the way there in the car.  Walking into the hospital itself was a struggle, the sights, the sounds, and particularly problematic for me nowadays – the smells.  Antiseptic, hospital food, bleach….I just feel physically ill straight away.  Then I was shut in a claustrophobic room with a nurse who was doing my admission, and I had to ask her to open the door, as I was verging on a panic attack.  So, you can imagine how I felt when they sent me to the ward where I would spend an overnight, with this view.

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My roommates for the night were to be three really elderly and obviously very ill men.  If the view wasn’t enough, I just didn’t think this was appropriate, and had something of a meltdown, insisting that I could not stay there.  And for all the world,  I don’t believe I could have.  It’s bad enough that you have to spend a night away from your family and everything that gives you comfort, but to do it in a terrifying, dungeon like room, which looks like it was formally an asylum (complete with chicken wire outside the windows, to prevent escape or jumping I should imagine).  I looked wide eyed, back and forward from the nurse to my husband, and insisted about 20 times that I was NOT staying there.  It was a relief when they came and got me for surgery, and I only hoped that I could stay there as long as possible and avoid being bought back to this hell.

In theatre I was prepared for sedation and told that I might be awake for some of the procedure, as it was only twilight sedation.  Unfortunately, as my liver veins were quite complicated to block (and at one stage they thought they had done it, but when they checked there was still some blood flowing to the right side, so they had to go in again), and the procedure took just under 3 hours, I ended up being awake for quite a bit of the end of the procedure, and I think the local anaesthetic had pretty much worn off, as I could feel things going through my liver veins, like, literally feel it.  It was unpleasant to say the least.  This is the reality of what this life is really like, this picture taken not even a full 24 hours after my “Look Good, Feel Better” photo:

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I can put on my make up and put on my smile, and show the world my game face, and I can enjoy life as best I can.  But the reality is, if I want to keep enjoying it, I have to keep facing these invasive procedures, and the pain and fear and sheer loneliness that comes with them.  Thankfully, much pity was taken on my mental state, and my intention to check myself out of the hospital without staying overnight, and I was wheeled back to a female ward where I could see this:

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Here comes the sun?  I can only hope so.

4 Comments on “Saturation point

  1. Oh Jules, it’s hard enough going through what you’re going through without the stress of being in a room full of strange men. No offence to the blokes but you’re already so exposed and vulnerable…a bit of privacy goes a long way. I had played musical rooms during my stints in oncology and for half of those I was sharing with older men which made me feel incredibly uncomfortable and stressed. Huge hugs Lovely. xxx

  2. Being fully aware and able to express your limits–PRICELESS. KUDOS TO YOU. And many more amazing strengths sent to you from afar. Praying for smooth sailing for all times around the little hiccups that are unavoidable. Love to you all!! Amazing writing. Love love love

  3. Caught your story on sixty minutes, you are a champion.
    My prayer list works wonders, you are on it
    Regards Msrgaret Morgan

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