No one here gets out alive.

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Except, sometimes they do.

It’s been an interesting week and a half.  I probably find myself in the best position medically in my battle with stage 4 bowel and liver cancer, since I was diagnosed in December last year.  My primary tumour in my bowel has been successfully removed, with clear margins and I no longer have any signs of cancer in that area.  My liver had 6 active tumours at diagnosis, and only two of these are currently showing any signs of activity.  And so, after two more cycles of chemotherapy, I will proceed to a two stage liver re-section procedure, which will hopefully remove all the remaining cancer from my liver, which will eventually, because it’s a clever little organ, grow back as good as new.  The liver re-section is a bit of a “game changer” in the fight against metastatic bowel cancer with liver spread, as it is done with what the surgeons call “curative intent”.  That doesn’t mean it cures everyone, not by a long shot, but it allows what every cancer patient, especially those at stage 4 need in their lives – hope.

I got the news that surgery will almost certainly proceed on the Tuesday just gone.  Today, just two days later, I was admitted at home as a palliative care patient, in order to access their services.  It was a strange place to find myself, but a chat to staff at the chemotherapy unit last week, about my current and future needs (counselling, advocacy, pain and symptom management being the most pressing) revealed that palliative care admission was my best way to get everything happening under one “banner” so to speak.

Last Monday, when this discussion took place didn’t find me in a very good place mentally.  The battle has been nine months long so far, and has involved a diagnosis of terminal cancer, a couple of major surgeries, a colostomy, 6 cycles of chemotherapy, 25 radiotherapy sessions, 7 blood clots, 1 naso-gastric tube, 1 MET call, 3 times where I was declared to be no more than 24 hours from death had medical treatment not commenced at that time, absolutely countless chemotherapy pills, pain medication, twice daily blood thinning injections, 2 bowel obstructions and the loss of something stupid like a metre of my intestines.  I was also being infused with the poison that I need to control my cancer, but which the time before left me grappling with the worst nausea I have ever experienced, and had me bed ridden for a week.  Yes, mentally, more than physically, I FELT like I was dying, and palliative care were not the words I wanted to hear.

However, it would seem that palliative care is about living, not dying, about having the best life you can, and how they can facilitate this, and yes, nowadays with so much advancement in cancer treatment it sometimes becomes almost a chronic disease with many years of stability – people sometimes do get out alive.

The nurse and psychologist who arrived at my home this morning were the loveliest of lovely people.  You would have to be someone special to work in palliative care I think, and these two women simply radiated this specialness.  They put me at ease straight away.

It’s a weird place to find yourself though.  My four daughters are home on school holidays, and between their noise and laughter, and an overexcited pug barking, the room was simply bursting with LIFE, and yet I sat opposite two women who on a daily basis facilitate a peaceful death for people.  And while I plan of course to be one of the people who beats the odds, I had to accept that the chance exists that one day they will do that for me.

I found the admission to be mostly a positive experience.  I didn’t cry at all, though I nearly did when the nurse took my hands, and looked into my eyes, (after listening to me rabbit on about how this was impacting on my family, and what i want done for them) and said “but what about you, what do YOU want?  This is about you!”

The thing is, I’m a mum, and a partner and a friend who used to be a listening ear for other people, and despite me being the one going through all this, I find it hard to put myself at the centre of the picture.  I still want to nurture, and protect, and shield the people around me who this hurts so much, and I try to keep the raw reality of the fear, pain, loss of identity, loss of innocence (the kind you have when you don’t know for sure you’ll live to be old, but you pretty much consider it a given) largely to myself.  I have been consumed by cancer, swallowed whole, lost in the process, fronting up like a robot, time and time again for this procedure, and that injection, and this scan, and that blood test, hooked up to the poison pump 3 weekly, and I am doing all of this against my will.  What do I want?  Well,  I want my life back.

Seeing as this is not going to happen, I have settled on having them help facilitate a peaceful lead up to the the next stage in the surgical process.  I have a couple of months which should in the grand scheme of things be pretty quiet, and I want them to peaceful.  So we have settled on several family therapies, art and music and counselling.  We agreed they will advocate for me at the hospital where I am having my liver surgeries, because the local hospital where I had my bowel surgery twice left me in an intolerable pain situation which started the erosion of my mental health, and has recently seen me start a course of antidepressants in a bid to come to terms with it, and again build some emotional resilience.  I am naturally afraid to go into two very close together surgical procedures that are about as major as you can get, but the memory of waking up from surgery last time with a failed epidural and absolutely no pain relief, and choking on a breathing tube has basically rendered me nearly unable to line up for it….but of course, line up for it I must.  The palliative care nurse has assured me that this situation simply won’t be allowed to happen again, and this in itself has made todays quite confronting admission worth it.

So, that is how today finds me.  Patient of a dedicated surgical team who are pulling out all the stops to keep me alive, and patient of a service whose main business is dealing in death.  It’s a strange place to be, but I plan to be one of the people who makes it out alive.

6 Comments on “No one here gets out alive.

  1. Julia, this is so sad! Glad to see you have somewhere to vent your spleen and I love your determination, but I believe a positive attitude can make such a difference. I think you are blessed to have a beautiful family, blessed to have these medicines available to you, blessed to be eligible for the surgery! This is also a time to look after yourself first: how much you do (or don’t do), when you need rest, what you eat. You can only help others when you have helped yourself.
    Hope you get all the support you need, being given a palliative care brochure would freak me out!

  2. Jules beautifully written. I am glad that you now have a team behind you that is just for you, advocating for you with your next surgery will hopefully make it a much better experience than your last one.

  3. Courageous, honest and intelligent. Some of the qualities I most love in my friends. The thing I can’t stand in them… Cancer!!! Keep writing and sharing your journey.

  4. Julia that is all so well written after experiencing the pallative team like you it was suggested to us many times but I had such a fear of using them because I felt it would all be out of our control but when we had to accept their help they were like our new best friends so caring kind and understanding. I am sure your positive outlook will help in your recovery and know that so many people are making this fight with you keep up your blogs love to you and your family Di Potter

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