What would you do, if this was your last?

What if you knew that certain moments and special occasions would be your last?

Life is so precious, yet so fickle. Some people get prior warning that they’re living their last moments, some people do not. What if you had prior warning? Would you change anything?

Would you change your perspective on life? Your priorities? Your attitude? Think about it. What if this would be your last Christmas, your last birthday, your last family holiday? What if you knew you would never be able to complete all you wanted in life?

It’s a really shitty and traumatic thing to have to constantly think about, isn’t it? Unfortunately, it’s something that plays on many people’s minds on a daily basis.

Will I ever see another Christmas!

Will I ever write a date with 2019 on the end?

Will I forever be 36?

Will I get to celebrate another family member’s birthday?

The “Will I??” list seriously goes on.

I’m not writing this to get “thoughts and prayers” nor receive comments like “stay strong” and “keep fighting”. What I truly want from you all is to live your lives to the best of your ability.

Sweating the small stuff? Let it go.

Stuck in a dead-end job that’s making you miserable, sick and affecting your quality of life? Leave.

In a relationship or friendship that’s making you unhappy, trapped and unfulfilled? Leave.

Feeling as though your life isn’t quite going down the right path, or that you’re struggling with something? Don’t be ashamed to seek help.

Go on that holiday you’ve been dreaming of!

Treasure each day and each moment as a gift, because that’s what it is. Our days, moments and lives are a gift, treat them that way because you never know when they will be taken away from you.

So what should you say to a loved one with cancer?

When I wrote my “please stop telling me to keep fighting” piece, I didn’t believe that it would be worthy enough to be republished by a news outlet, nor did I believe that it would resonate with so many people. It was such a raw and honest piece that generated quite a lot of discussion.

I have been inundated with comments, emails and private messages, all from people who have opened up about their own personal story, and how thankful they are that I spoke up.

I have also received gratitude from people who do not have cancer, but who have a loved one currently going through it, and my piece opened their eyes to the world of what their loved one is going through.

I have also been told, for the first time in a long time, how well I write, and how well I was able to articulate my message. In a previous job of mine, I had a boss who constantly criticised every single thing that I wrote. I had to write meeting minutes, agendas, letters and also write social media content. Every single piece of writing that I completed, it was picked at, and constantly knocked back by my boss, with no feedback or advice given. I am not a journalist by any means, and I have had no formal training in writing, but this role only required very basic writing skills. The criticism continued every single day, for five years, and I soon began to believe it. I started to agree that I was a terrible writer and I eventually lost faith in my ability.

Since I’ve been so unwell, and so incredibly bored, I decided to start writing again, and it has somewhat become therapeutic for me. Questions arose from my last post, asking me “What DO I say then? If people don’t want to hear keep fighting??”.

The answer is really quite simple. You can say “I’m sorry, I don’t know what to say”, because half the time, we don’t know what to say either. Or think back to BEFORE your loved one was diagnosed, what did you talk to them about then? Did you discuss how your days at work were? Did you fill each other in on what you did over the weekend? Did you like talking about what is current in the news? What movies you’ve seen or what TV shows you’ve been watching?

These are normal everyday conversations, this is what you should be saying. We don’t want sympathy, or to see your sad eyes, we want as much normality as possible. We want normal conversation, because after all, we are still that same person you know and love.

In my situation, I did also notice that friends would put their words more into actions. I was incredibly blessed to experience many thoughtful gestures so I compiled a list of things that I know helped ME (obviously keep in mind that what may appeal to one, may not appeal to another. Just draw on your knowledge of your loved one and the ideas will come to you).

• Magazines. The trashy gossip type ones that were quick an easy to read. A friend organised  a subscription so that I had a new magazine to look forward to each week.
• Adult colouring in books (not adult as in R-rated adult haha) – the really nice ones that seem to be everywhere at the moment. They’re specifically designed for adults and not for kids. Also some coloured pencils. I found that colouring in was the only sort of meditation that actually worked for me and genuinely kept my mind off things.
• Text messages or facebook messages. I personally didn’t like phone calls, or any surprise visits at the hospital. I don’t quite understand why people would rock up to a hospital for an unannounced and unplanned visit, but please don’t do it. There’s a constant flow of doctors, surgeons, nurses, physio etc that are in and out of the room at all times, that alone can be exhausting. By sending a text, I could reply at a more convenient time, either after a nap or once my pain was under control.
• When I went through radiotherapy, I was given products like sorbolene cream to help ease my radiation burns. Sugar free lollies because my mouth tasted like metal. Peppermint tea for nausea, Biotene for dry mouth, a heated blanket and cotton socks because I had chemo during winter. I also loved nice toiletries for my hospital stays, think body butter from the Body Shop.
• Home baked treats were always a hit with me, especially because I always lose a lot of weight post-surgery and during treatment.

• If you’re in the position to do so, let them log into your Foxtel Go/Netflix/Stan account, because daytime TV sucks!
• If you have children, get them to draw/paint/scribble a picture to give to your loved one. No gesture is ever too small. Or go one step further and record a cute video message from them on your phone and send it. A friend of mine did this for me recently and it gave me a renewed strength.

We already know that this is hard on you too, but the best thing that you can do is to continue being you. Don’t overthink your words, don’t get awkward, just continue being a friend, the best way you know how.

Amelia

Three years ago, shortly after my first bowel cancer diagnosis, I met Amelia in an online support group. She too had just been diagnosed with Bowel Cancer and we were the same age. We instantly clicked. We shared our stories and our experiences. She was the biggest support to me because she genuinely knew everything that I was going through, because she was going through the exact same thing at the exact same time. We were both always in and out of hospital, at the same time, texting one another from our hospital beds. When we both couldn’t sleep, we’d keep each other company with texts that’d go right into the early hours of the morning. We went through chemo together & we had surgeries at the same time. But we didn’t just talk about cancer, we talked about guys, our friends and family, where we wanted to travel to, and we even planned a girls trip when we both had recovered. Amelia lived in Sydney and I in Adelaide. She was going to come here and I was going to go there, we had some great plans ahead of us.

In the year that we were chatting, I told her many things that I hadn’t told anyone else, purely because I knew she could completely relate. And she told me things she hadn’t told others either. I will never forget receiving some of her home made short bread biscuits in the mail because we had both lost sooooo much weight and this was her effort to help bulk me up. Even in her darkest days, she would still think of others.

Sadly, on 19 May 2015, Amelia passed and it broke my heart. Even though we had never met in person, our constant texts and Facebook messages over the course of the year made me feel like we’d known each other a lifetime. You don’t go through the exact same cancer as someone at the exact same time & share the things that we did & not form an incredibly special bond.

Still not feeling 100% myself, I flew to Sydney on my own to attend her funeral, where, despite never meeting me (and not even being sure if Amelia had ever spoken of me) her family and friends welcomed me with open arms. I have since been to Sydney several more times to see everyone, and their willingness to have me in their lives is nothing short of amazing! I even had my ‘hope’ tattoo done in Bondi on Amelia’s birthday with her beautiful friend Courtney holding my hand. Amelia’s Mum was one of the very first people to see it.

It has been incredibly hard without her, especially this second time around. I have experienced the very real feeling of “survivors guilt” and I live with that every single day. But I do have comfort knowing that I have one very amazing guardian angel forever watching over me. I also have Amelia’s Mum and her friends in my life now and I feel forever grateful for them. Their love, support and generosity has been nothing short of amazing!

How my life changed

I was diagnosed with Crohn’s Disease when I was 15 years old. I always knew that my risk of getting Bowel Cancer was high, but didn’t think I would have to worry about it until I got much older. I always considered it to be an “old mans cancer” and had a bit of a “it won’t happen to me” attitude.

How wrong was I.

In 2013 I moved houses twice in the space of three months. I had a falling out with my house mate of four years, who was also my best friend, and it completely shattered me. I bought my very first home, which should have been an exciting time for me, but it was bittersweet. I felt forced out of my living environment and lost my best friend, but I now had my own little home to call my own, only 5 minutes from the beach – my favourite place in Adelaide!

I had also taken on a temporary new role at work. So when my Crohn’s started flaring up, I put it down to the stress and emotions of moving house, buying a home, starting a new job and losing a dear friend.

However, when my Crohn’s medication and a stint in hospital on IV cortisone didn’t help alleviate my symptoms, I started to think something more sinister was going on.

My biggest issue was bloating. My friend was 6 months pregnant at the time and had sent me a photo of her baby bump. My tummy looked exactly the same, except I definitely wasn’t pregnant! I tried everything to help ease the bloating, but nothing worked. It was so uncomfortable and the pain associated with it was only getting worse. Even drinking water was causing issues! I stopped eating and drinking and became very fatigued and malnourished. I was still working full-time and it would take me 2 hours to get myself up and ready for work in the morning, I would struggle through the day and then fall into a heap when I got home. I had no life, I was using all my energy to work and then used the evenings and the weekends to rest and recover and then do it all over again.

It got to the point where I’d had enough and begged for a colonoscopy. I woke from that procedure and the look on my gastroenterologist’s eyes told me what I had feared – it was looking like cancer, but he needed to send the biopsy off for testing first.

I was sent straight to hospital and was put into a shared ward with three older men. I have always been a big believer in hope – because without hope, we have nothing. I held onto the hope that maybe, just maybe, it was benign. Maybe it was scar tissue from previous surgeries related to Crohn’s Disease. It was going to be fine.

It was getting late and we hadn’t received any results from the biopsy so I told my parents to go home. They would have probably been in the carpark when my gastroenterologist came to my room, I thought about calling them to come back upstairs to the ward, but still thought everything would be fine. Then my specialist confirmed it was cancer. I was on my own when he told me, and I broke down. I have never been so upset and so shocked in my whole life. I still didn’t call my parents back, I decided to let them have one more sleep before I turned their world upside down.

The days following my diagnosis are a blur. I ended up having surgery a couple days later and was discharged a few days before Christmas. Between the Christmas and New Year period, I deteriorated badly. I ended up needing emergency surgery on New Years Eve and rang in the new year in intensive care. It was a pretty accurate beginning of how the year 2014 would pan out for me. But we shall save that for a separate post.