It is hard to believe that tomorrow I have my PET scan. It has really snuck up on me this time. It was just over 3 months ago I was sent to have a PET scan because it looked like Debrafenib and Trametinib did not work, and it most definitely did not work. I was once again faced with the reality of terminal cancer and concerned that I was running out of options. It was not a good time physically and emotionally.
Here I am 3 months on in a totally different frame of mind.
I feel really confident going into tomorrow’s scan, no ‘scanxiety’ in sight. Being this confident may be dangerous, but for now, I am going to embrace it. Since starting back on Keytruda (I have had 3 doses) and having radiation on the lesions close to my pancreas, my bloods have returned to normal and I have no pain from that specific lesion. I am definitely not expecting that metastasis have disappeared, but I am hoping that things are almost back to where they were before I came off Keytruda in December.
I always have people commenting about my ability to stay positive and keep going. I thought I would write a little bit about how I manage this.
First of all, I definitely have bad days that are spent crying, but they are few and far between these days. What people often forget is that I have had over two years to adjust to the word terminal. I am able to speak about my experience without getting emotional. However, I do know the importance of having a good old cry and I have specific people that I know I can go to for this. There are friends that I go to for a distraction and friends I go to for a cry – both highly important!
How do I stay positive? Positivity means different things to different people. I have been told that a positive attitude will cure my cancer – this is definitely not the positivity I speak of. That is rubbish and insulting to anyone that has passed away from cancer. My positivity comes from staying realistic. I do not gain strength in hoping for a cure; instead gain it from hoping for time. This doesn’t make setbacks any less upsetting, but I know that expecting a scan that is clear and not receiving it would be far more painful and detrimental to my emotional health.
However, more than anything, I remain largely positive because I keep busy… sometimes too busy. When I don’t feel like I have a purpose that is when I slump into a state of depression.
Over Christmas, when I was in pain and unwell from radiation, I sat on my bum and did nothing. I most definitely did need that time to rest, but it took a lot out of me emotionally.
I had put my plans for this year on hold. I stopped my one-day of work at the gift shop for over a month. I didn’t do any work on preparing the launch of Love, Emma. And, I didn’t make any new plans for 2016 in fear that I would be too sick or I wouldn’t be here. That is no way to live.
It didn’t take me long to snap out of this rut.
A month or so ago I called Leonie from Mirra and told her that I wanted to plan another event. The idea of making ‘Through the Looking Glass’ an annual event had been on mind since the day after the first event over a year ago! It was such a good night! However, I never wanted to commit to something so far in advance, but I knew that I needed a fun project that would excite me and give me some purpose again.
‘Through the Looking Glass’ is not only a fun night that I can share with my friends, family and the Dear Melanoma community, but it is my way of having an element of ‘control’ of my future.
I can’t control how long I will respond to Keytruda. I can’t control what, if any, clinical trials I will be eligible for when I do stop responding. What I do have control over is my ability to assist in making more clinical trials available.
Although the funds I raise may be a drop (more like a splash after last years efforts) in the ocean, I am doing something to help ensure that I have more options… and that others have more options.
This is why I choose to support Melanoma Institute Australia.
Through the Looking Glass will be an amazing night of food, alcohol, entertainment, dancing and lots of fundraising. However, on a more personal level, it will give me the purpose I need to stay positive and keep going.
Through the Looking Glass
7pm, Saturday 14th May 2016
Mira Private Dining and Event, Fortitude Valley BRISBANE
$150 (includes a night of canapés and alcohol)
Dress to impress (cocktail to formal)
Book at Brisbane Tickets
