Getting sick is a lot like riding a train into a dark tunnel. Its dark and a bit (or maybe a lot) miserable when you first ride into it, but in the distance is a light. That light is what you are targeting, it is what represents coming out the other end, getting better.
When you are palliative, there is no light in the tunnel. You go into the tunnel, become enveloped by darkness, but don’t have anywhere to go, no light so to speak. Each day is a progressive deterioration on the day previous, there is no hope that I’m going to get better. The focus is instead keeping me as comfortable as possible.
Its a bit of major mind shift, because every other time I have been sick, there has been a light. Sometimes dim… but still a light.
Since I last posted I managed to get discharged from hospital into hospice care, with the goal to move from there to home in the longer term, which after two weeks, I also managed to achieve.
One the outstanding issues that was preventing me from moving to hospice in my last post was my ongoing biliary sepsis. With unclamping the PTC tube and antibiotics I have managed to recover from that.
The focus in the hospice was getting myself into a manageable space where pain etc could be managed from home, which I now too have achieved. With so much water having passed under the bridge, I apologise for the lateness of this blog post. I now find myself at home spending my last days with my family, which has been great after close to 7 weeks in hospital and hospice care. I now have my family around me all the time, so they aren’t ‘scheduled’ visits, and it is much nicer to be in a familiar environment.
As alluded to at the beginning of the post, being palliative is quite the change in outlook and mindset. What it essentially boils down to is that I am now waiting to die.
I don’t necessarily want to delay that for as long as possible, I’m not sure what I want to be honest. I’m helpless at the moment. Death will come to me as quick or as slow it decides on it’s own terms.
I know I’m not eating enough to sustain life and that will catch up with me eventually…
I know i’m keeping up with my fluids…
I know that my body is disappearing in front of my eyes, slowing deteriorating bit by bit each day…
I know that death creeps around the corner waiting to pounce.
I know that all of this is beyond my making. Maybe death will pounce next week, maybe in 5 weeks time. He/she will choose their own time.
In the mean time I will enjoy what family time I have, I will catch up and see friends old and recent. I will enjoy what time I have left for whatever blessed time it is that I have it for.
For those following this journey, short or long, I don’t know how much of it there will be left. I will try to update when I can, but the reality of it is that as I deteriorate, it will be harder to do so. I am already on a lot of drugs that dull the mind, it can make writing harder, and make concentration harder still. I want you all to know that I am not unhappy, but content. I am taking each day as it comes, absorbing what it has to bring me and trying to make the most of while I can. This is not to say there aren’t hard days. Hannah and I have had our fair share of shedding tears as our reality comes to home to bite, but that is normal. Who wouldn’t cry when death is just around the corner, but, on the whole we are both at peace, preparing ourselves for what the next chapter will bring.
I am not afraid of death, maybe partly anxious about it’s mechanism, but I have a faith that reassures me however it happens, I will be going to a better place, one where death and suffering will left behind and the resurrection of Christ will become the most apparent it has ever been to me.
Until next time….
In what seems to be a long time since my last post, a lot of water has passed under a very small bridge. I came home on leave with the PTC drain in and went back to hospital so that I could have the stent inserted under a general anaesthetic. This procedure happened the day after I was readmitted and it turned out to be the most painful day of my life. What should have been a 45-60 minute procedure ended up being 3.5 hours long. When I woke up from the general anaesthetic I was in agony. I was in so much pain, I don’t even know how to describe it. The post anaesthetic care team did their best to give me analgesia sufficient to control my pain and they were unable to do this. Over the course of a day, I had 3 x 10mL boluses of Ketamine as well as going through > 2500mcg of Fentanyl. It was established that I needed an epidural but they also needed to establish that there was no other cause for this new pain so it was decided that I would have a CT scan to rule out complications. Fortunately there were no new or concerning features on CT. So I returned to the post-operative care unit and an epidural was placed. My experiences of ketamine boluses were also terrible; its auditory and sensory hallucinatory effects made me feel really trippy and I would not wish that sensation on anyone. Tuesday officially went down as the most painful day of my life. The following two days not much changed with my regimen for pain relief and a trial stop of the epidural occurred on Friday. Unfortunately that too was unsuccessful.
On Friday, Hannah and I, together with the palliative care and oncology teams, had some long and hard conversations around when would be appropriate to stop aggressively pursuing quantity of life. We agreed that whilst I would still happily be treated for small things, we were not going to pursue treatment that would forsake quality of life. My oncologist was of the opinion it was unrealistic to go back on chemotherapy as it was evident the cancer had stopped responding before the period of non-treatment and my overall fitness and health had deteriorated so rapidly over such a short period of time. Based on this we came to the decision that I am now for palliative care only. From now on, our decisions will be based on things that influence my quality rather than quantity of life. How short or long that is is anyone’s guess. My priority is to get home if I possibly can as that is where I want to be.
Going on in the background of all of this has been ongoing fevers that we have yet to identify a source for but whose guilt most likely lies in biliary sepsis. In order for me to get home, the first hurdle is to treat this successfully.
We always knew it would come to this at some stage, but perhaps not so soon. For some reason it always seemed to be a few months down the track. For whatever reason I have managed to outlive anyone’s predictions for the past five years. But now the chickens seem to have come home to roost.
I intend to keep blogging through this process as I document the journey to death and I hope and pray that it gives Elise something to read so that she can get a glimpse of who her father was.
Until next time…