Tag: palliative care

An update for you all. So I am sitting in our lounge room looking at the most magnificent Christmas tree which is as tall as the ceiling and smells of the sweetest pine and it is bliss. I lie back in my new recliner to make adjustments for my very distended and hard tummy. I look out at a beautiful garden and know that my family will visit soon as they have been since I entered my new phase of home based care. I am in a very peaceful place and space and whilst I go through periods of pain and discomfort, we are learning how to manage those things with priority. 

I have left Alan, Karen and all those names I gave my cancer behind. I have left cancer behind. I am no longer in a treatment/intervention pattern and this feels extremely relieving for me. I am living my most precious life right here with my people. I know that on the downside, I can’t include all of my people in that experience with me. So many of you have reached out and want to visit and talk with me but I need to hold space for my own emotions. It’s a lot. 

I also want to enjoy time with Magro where he is not my carer. I need quite a bit of help with personal care and mobility but our experience of what marriage offers shouldn’t only be limited to the most fabulous of weddings followed by a slow and steady progression to him wiping my arse. 

But I want you to know that from my perspective, you and I have no unfinished business between us. If you read this blog, if you have supported me in friendship over the years, if you have shown care or empathy to my friends and family, then we have love between us. Whilst it is a true honour to read about the impact I’ve had on your lives, it makes me proud of the person I am. You have had an impact on me too. I believe the authentic connections between people, alive or dead, never truly end. We carry each other through our lives and beyond. 

I have been processing that I am dying for a long time and some of you are just getting your heads around it now. Please know that I am not scared. I feel at peace with the process, very well looked after by the team and my family and in a space that makes me feel loved. It’s also my favourite time of year. Full disclosure: I never started writing Christmas cards and sending them and this is a decision I have never regretted – it’s a trap and a never-ending cycle of guilt and demand!  But bless those of you who do it. My friend Bev must write more than 300.

Remember how I described our wedding day as perfect? It was. In every way. But in the week leading up to the event I was starting to worry about how I was going to last. I’d begun to notice some new symptoms that had me troubled and my normal level of fatigue seemed to have worsened. However, on the day itself, I woke with excitement and seemingly boundless energy that kept me going all day and into the night. I couldn’t believe it. I mean, the steroids helped, let’s be honest. But love got me there.

Unfortunately, the day after the wedding, Alan kicked back. HARD. Nausea, a very public and projectile vomit at our recovery event, tears of exhaustion, fatigue, a distended and sore belly, dark brown urine despite trying my best to hydrate…it was all happening.

A few days on and I wasn’t feeling better. A quick google of what to expect during liver failure had me ticking all kind of boxes and I slowly walked towards Magro to let him know that I thought my cancer was spreading. I was getting sicker. 

First thing the next morning I called Dr Duenna, my oncologist, and she asked me to present immediately to emergency. Scans, bloods and a few other tests confirmed what we had both been thinking. Alan had finally broken loose of his compound. My cancer had begun to spread throughout my abdomen. It was in the fluid that was building around my organs and most likely on the surfaces of the organs themselves.

And then came the very difficult conversation. 

Chemotherapy and other possible treatments would do nothing to improve my situation and could only add to my discomfort, even leading to toxicity. Future interventions would be aimed at supporting me to live with as much quality of life as possible. We officially entered the palliative care phase of my illness.

Now, look. I know palliative care has a bad rep. A lot of you are thinking I’m two minutes away from dying in a hospice bed. And you’d be forgiven for thinking that because for a long time, that’s exactly what palliative care seemed to be. So many people weren’t admitted until the last minute when it was all a sliding shitshow of death and dying.

But I have been researching and exploring this outcome for a long time now and what I have learned is that palliative care is quite different these days. It is about supporting people with many different types of life-limiting conditions to live as well as possible in the time they have left. Through symptom control and pain relief, patients can go about their lives for much longer than was once possible. This is partly due to early intervention and home-based care.

But it’s also me saying no. No more chemo. No more trauma. No more relentless cycling through the process of dread and recovery. It’s my time now to live and relax and enjoy my new married life, precious time with family and close friends and time for me to process my life and its legacy. 

Cancer is not a fight. It’s not a fucking journey. It’s an awful experience with which one has no choice but to reckon. And I don’t want to reckon with cancer anymore. I want to play, to love, to live. I don’t know how much time I have left, but I will live it the best I can. With help from people who know what they are doing. I trust the new team. And I trust myself that I have got this next bit…as messy as it will get and as scared as I may become. My body, brain and heart are doing what they need to like they always have. Just keep living.