Tag: family

I was seven metres from our main bathroom. I had overdosed on laxatives trying to counter the large amount of analgesic medication I am currently taking. My fellow lounge dwellers watched in horror as I tried to clench my way to the toilet. Two metres from the bowl it was clear this was not going to end well. I have no butt fat or muscle left to clench. It was like the scene from Bridesmaids where she sinks into the middle of the intersection in the largest wedding dress, in tears, knowing the biggest meringue now has a chocolate filling.

I landed on the toilet in a spiral of shame and my clothing completely pasted to me on all sides. My husband offered help (bless him). He would do anything. But it was my mum who I ended up calling on. And she fixed me up and hugged me like I was still her baby.

I tell this story not for a laugh although I think it might make a few of you laugh. But because I have been dreading this day since my diagnosis and have since learned how many of you have shit yourselves in the funniest places, awkward moments and most public of events. And I would love the brave of you to share your story in the comments. It would be the perfect Christmas gift. 

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.

Have you ever had a perfect day? The kind of day you might have actually been apprehensive about and then it arrives and everything just happens in this beautiful, magical way and you feel like you are gliding seamlessly from one incredible moment to the next? Yeah, me neither. Until last Friday. 

Our wedding day was perfect. In every way. Mostly due to the incredible efforts and organisation of friends and family but also because it was so much more than catering, a venue, the band, and the outfits. We woke up in a love bubble that day and were carried through the day surrounded by the most beautiful collection of loving humans we are privileged to call family and friends. Everywhere we turned that day were faces smiling back at us with nothing but joy and happiness on their faces. Our love was reflected.

The big blue sky of Australia is something I never really appreciated until I had travelled and lived overseas. That first step back on Australian soil and glancing towards the sky has an immediate heart and mind opening effect on me. Its broad expanse seems to fill me up. On our wedding day, the sky was enormous. A beautiful, cerulean canvas on which a hundred memories would be painted across its backdrop. I walked down the aisle towards a scene and a man so beautiful I had to turn around and start again. 

Magro and I used our day as a way to express love for each other and those we love in every possible way. That was our intention. We wanted everyone to experience our love, and for their own loves to be considered, remembered and treasured. We wanted a party that would bring all of our people together. We wanted movement, irreverence, laughter, tears, honesty, inclusivity and really sore feet at the end of it all. 

There was always an urgency about this wedding because I have cancer and our time together is limited. It is silly to pretend otherwise and it’s worth mentioning because everyone who came along understood the brief. Every guest played their part in our vision. By the end of the weekend, new friendships had been formed, great conversations had been had and most importantly, connection was everywhere…my new found meaning in life. 

Laughter and joy through tears is really one of a human’s most beautiful expressions of emotion. We filled bins with the amount of tissues used and the laughter was the loudest sound on the day. Our most joyful day. Just so bloody JOYFUL.

 

Dear Parents,

I was going to share these thoughts at our wedding next week but they need more space and a wider audience.

We have been a blended family since before the term was invented. Mum and Dad, you were divorced in the seventies and everyone can look back on that decision and appreciate it was absolutely the right call. It’s kind of weird to imagine you two together as a couple. But then I often think about some of the people I hooked up with when I was younger and the thought of still being with them now is pretty funny. In fact, I have an ex (no prizes for guessing which one) to whom I’d gladly wield a tomahawk if forced into a mutual social setting.

Continue reading “Dear Parents” →

I overheard some do-gooder on the television the other night describing her cancer journey (yes, she used that word…maybe that’s what got my attention and my back up) as a ‘joy’. She sees her work in advocacy and health promotion as giving meaning to her cancer and therefore awarding her a joyful life. And on this I’d like to call BULLSHIT!! What a load of crap. As if. This cancery life is many things and sometimes joy gets involved but I’m yet to see a Cancer Council pamphlet with the title “Welcome to your joyful cancer life!” on the cover.

But I will say this…again. There are some perks. I don’t want to use them all up in one post so I’ll focus on the one I’ve been most recently pondering.

Medically unquestioned access to sedatives.

But really this…

When people know someone has Stage 4 Cancer they know it’s serious and the first thing that comes into their minds is a question about how long that person has left to live. (Stage 4 actually means that your cancer is aggressive and has metastasised to other organs which is serious but with effective treatment, the person can live for some time.) But the question is a natural one and one I have wondered about myself. No, I have never asked Dr Duenna for a prognosis…that’s my practical self leading the charge there. I don’t see how it would help me to know, because I suspect she can’t actually know, and I think she would probably tell me that too but instead might give me a range of months and years and that would change things for me in a way I don’t think would be productive.

Nevertheless, we all know I’m pretty sick. In a healthy looking way.

So this, I suspect, has lead some of you…no…many of you, to reach out to me and tell me about me. Never in my life, has my life been so affirmed. I have been told precious things I never knew about myself that you have held inside yourselves for sometimes years and years. I have been told how loved I am so many times I can be nothing but sure that it is true and widely felt. Some of you have written it in cards. Some of you have written it in the comments below. In hand written notes. In messages. On Instagram. And some of you have bravely faced me and told me directly in your own, instantly thought and beautifully articulated ways, what it is that I mean to you.

Disclaimer: Not one of you have ever suggested I am perfect in every way. Obviously an oversight on ALL of your behalves.

But here, I think, is the take away. Whilst this has been the absolute far and away BEST thing about having cancer, you shouldn’t need to have a terminal illness to hear and read this stuff about yourself. So here’s the challenge folks…

Say it now.

I never used to do it either!!

But you can tell friends and family exactly what they mean to you right now. Even while they are leaving cupboard doors open. Even when they haven’t finished vacuuming properly. Even if they keep talking incessantly and don’t seem to really care for the ideas of others. Even if they argue with you about stupid stuff and put being right above being kind. Because I did, and still do, ALL of these things. And even with all of my annoying habits and traits, people still love me. I know because they have told me.

But let’s be honest. It’s just a bit awkward if there’s no pending mortality issue. Or maybe we just don’t think to do it enough. Or maybe we are a bit selective about who we affirm. I’m trying myself to be better at taking the plunge. Here are some tips:

  1. When writing gift cards, take the opportunity to thank that person for just one quality they have that you admire and that adds to your life. For example, “Happy Birthday, Ian! Thanks for always taking the bins out and picking up the dog shit. I hate both of these jobs and I know you do too and I appreciate you for doing them. You do so many things quietly for others. So many.”
  2. Scroll through your phone, find a friend or a family member, and send them a quick message to say one or two things you love about them. “Hi Cousin Jen. A bit random, but I just wanted to know that when we catch up I always feel like you bring something great to the table. I feel lifted when we see each other. You have great energy.” OR “Jodie, you have the best taste (and museum worthy collection!) in shoes and I always think of you when I’m buying them. But more importantly, your style and sense of colour has always inspired me.”
  3. When you like someone’s post on Insta stories, take two minutes to DM (Boomer translation: direct message) them as to what it was you liked about it. “Linda, you and Nigel seem to have figured out how to enjoy everything about travel and the outback whilst still really loving each other. It’s all over your faces.)
  4. Maybe send an email. “Dear Mish, if food is your love language, I will never be hungry. Your cooking nurtures people and brings them together and I wish everyone could taste what you cook. It is one of my true pleasures.”
  5. Find any way, any way, you can to let someone know they are loved and appreciated. Like this, “Sue, in the afternoons when I feel at my sickest and I wrap myself up in your beautiful hand made quilts, I feel all the love from your hands and your heart in every square of fabric. And it surrounds me with healing energy.”
  6. Or just tell them to their face, “Mum, when you put your arm around me and sat with me and told me you understood why I was scared, it was perfect and the best mum you could have been for me in that moment.” OR “Dad, I love you. We are good, you and I. We are really good.”

I’m not telling you to get off your phones. I’m telling you to get on your phones. Message someone or tell someone or email someone immediately. Because you have no idea about the impact it will have. For them. For you. For us all.

Say it now.