An unwanted update

Illustration and styling by my favourite nurse!

Illustration and styling by my favourite nurse!

It’s World Cancer Day today and how fitting is it that I am in hospital dealing with this wretched disease… at least, trying to deal with it.

I was going to get on the bandwagon and put my own version of Beyoncé’s pregnancy announcement, but I have chickened out and you only get the boring/disgusting photo – my pregnancy photo - beautiful oversized and fluid filled abdomen, with my amazing ever-growing bruise, topped off with a colostomy bag to catch the fluid that dribbles out. This is home to my babies. My tumours.

As you know, I came into hospital last Friday night because I wasn’t able to manage my pain from home. In the last few months my lesions have grown dramatically. One in particular that sits at the top of my abdomen in an area called the porto hepitis. It is pushing on some pretty crucial structures and causing a truckload of pain.

When admitted, we discovered that I had a build-up of fluid on my abdomen – I looked like I was at the end stages of pregnancy. After a botched attempt, they managed to drain 2 litres of fluid on Monday and have had another 2 litres drained today. They will continue to drain 2 litres daily as long as they are able to something out. Unfortunately this may be forever.

For the first time in three years, cancer has impacted my physical appearance and this scares me. I finally look like someone that is sick. I don’t want to walk around looking like a beach ball. Let alone feel the pain that comes with feeling like your skin could just explode and cause a tsunami. I am a 25 year old woman that cares about my appearance and I just break down at the sight of myself.

Once I am out of this place, I am going shopping for new clothes! Clothes to hide this belly of mine.

Going home, is another matter in itself that I won’t go into much detail. My doctors have been fighting so hard to get me home, but unfortunately my pain management plan at the moment requires daily care from nurses and we haven’t been able to organise that in home. Once again… long story.

Now to the difficult part of this post. Last night I sat down with my oncologist and mum and we spoke about where we are at. It breaks my heart to tell you that if things continue the way they are I may only have months – 6 months is optimistic. I am continuing on treatment (nivo and ipi, as well as just had some radiation) and hopefully will remain well enough for this and hope that it may buy some time.

End of life discussions are back.

My concerns for Serge and how he will handle things financially when I am not here have returned.

The urgency to start preparing what I want to leave Serge, my family, and especially my nieces and nephews is well and truly here.

Life is scary.

I apologise that this post is quite short and blunt, but I have been crying so much and did not have the energy to put that into my writing.

I thank you for all your love and support that you have given me already and know you will continue to.

Many of you have asked how you can help – for the first time there are things that would be helpful, so feel free to private message me. One thing I would really like help with is to find some beautiful memory boxes that I can purchase for my loved one. I would really like something wooden that can be engraved.