Will the real reality please stand up

Last Friday I had one of the strangest days in my cancer career.

Being a palliative care patient, and the patient of a very determined surgeon who wants to give one one last chance at surviving, at the same time…well, it can be very strange indeed.  Like the trippiest trip down the rabbit hole, with no hope of any pill, of any colour to restore order.

The morning saw me emailing the co-ordinator of my diploma to see if I would be able to return to full time study this year, despite having to miss a month or so of classes if surgery goes ahead.  She replied back that she’d be happy to come to my home and discuss it and when suited me?  I gave it some thought and emailed her back to let her know that it might be pertinent to wait until after Thursday, when I would know if I might live long enough to complete it.  She replied that that seemed sensible.  It must have felt like a very odd message for her to send, but to her credit, she played along, without any accompanying hysteria.  Then the hospice nurse popped in for her weekly visit, and we had a bit of a chat about end of life care.  Strange days indeed.  MOST peculiar mama.

I have had times when I have been very diminished by my treatment.  Chemo, operations, pain, breathtaking fatigue.  But I’ve always been able to bounce back, grab hold of the days in between, and really make them count.  I’ve spent a huge amount of last 13 months feeling like garbage, but I have always known why, always been recovering from this hook up to the poison pump, that invasion of the scalpal, known that it will PASS, and there will be another set of golden days.  If not now, soon.

When I had the first procedure to prepare my liver for surgery, the one that failed, it hurt like hell in the aftermath, but my pain barrier is decent, and my determination to return to what is now my version of a normal life, is high, and I bounced back in no time.  I went into that appointment with the liver surgeon four weeks later, on what was supposed to be two days before my surgery with an epic smile on my dial considering what was supposed to be ahead of me, and told him I felt great.  I didn’t feel so great after he told me that it hadn’t worked, and we really needed to try something if we wanted him to perform this surgery without killing me in the process, but that was ok, there was still something that could be tried, and the fat lady hadn’t raised her voice.

The next week I was in for a procedure to block the arterial blood supply from the really “bad” side of my liver.  I didn’t feel all that stressed going into it, despite the first procedure on my liver being very painful in it’s execution.  The liver surgeon had told me that this one would be a lot “easier” than the first one ,and it wasn’t until the interventional radiologist who was about to perform the procedure told me that it would be “agonising” afterwards, that I realised the liver surgeon meant the process would be easier, not the aftermath.

When I woke up in recovery, I thought briefly that I was ok.  It was only brief.  Within half an hour I was wondering who that annoying person was howling and moaning, and barely had time to realise it was myself before the big time pain team had come and hooked me up to a morphine pca.  The doctor returned to my beside and explained that as soon as the blood supply is stopped to a large part of the liver, it starts to die immediately, and it knows it shouldn’t be and it fights like fucking HELL.  A necrotising organ, he told me, would be one of the most painful things that could be endured.  Well, he wasn’t fucking kidding, and I spent the next few days in a haze of pain relief so strong that I drifted in and out of conciousness.

Upon my return home, the pain started to ease, and I waited for that feeling of my energy returning….for those golden days, the ones I could snatch between all the bad things, to fill up the good things bank.  And I waited.  And, sadly, I’m still waiting.  Because this time, it hasn’t really happened.

This time, there has been a lot of fear in the not knowing.   A lot of fear in the not bouncing back, and not being quite sure whether I will be able to again.  We did manage a lovely holiday for 10 days in our funbus, but I battled some pretty (ok, very) strong pain, and bone aching fatigue like I have never experienced before.  I was frustrated with my inability to sometimes be able to walk even a few steps without stopping to gather the strength to go on, but I tried to be realistic about  the fact that they just knocked off a whole heap of my liver, I mean, murdered it, and it’s a pretty vital organ.  Since coming home last week, I have tried to return to a normal routine at home, cooking, cleaning, caring for my girls on school holidays, but my success has been limited.  Some days I have glimpsed the golden in the hours, but others, for the first time in 13 months, I have lost all belief that I can win this battle.  And mentally, I know that this is a very dangerous place for me to be, as it is so very hard to fight from this place.

I have scans on Tuesday to see if my liver has grown this time (if the pain was anything to go by, the right hand side of that fucker is dead as a doorpost, which SHOULD have caused the other side to grow, to compensate), and Thursday I see the surgeon to find out whether he can operate.  I’ve got no idea what the outcome will be, but hopefully it will be one that will help me believe that I can crawl out of the abyss again, and take up the fight.  I’ve got so much to live for, and I want it so bad, but I am just so tired.  So very, very tired.


Because every blog post should have a photo, here is one taken tonight with my beautiful friend, Kez.   Always happy with my girl at my side, we had some drinks and laughs, and for a few hours, I felt like me again.  But I need more than a few hours……so much more.

4 Comments on “Will the real reality please stand up

  1. Hi Jules, Keep the faith. Keep a picture of something(s) lovely in your mind.
    Thinking of you, and telling your cancer to piss off.
    Virtual and invisible Jedi hug on it’s way to you.

  2. The image of an exhausted, recovering you struggling for a few steps, then stopping to gather the strength to go on, is a very powerful one, and very moving. You didn’t go a few steps and decide that that was enough – although that would be totally justified – you gathered strength and moved forward. And you’re smiling, at least sometimes – there’s proof!

  3. Wishing for you that many more golden moments, hours and years are yours to sare with the ones you love. How beautifully written Julia

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