Scared Shitless

I am scared shitless. 

I haven’t been blogging much lately. One part of this is that I am crazy busy, but the other part is being too scared to put pen to paper (or fingers to keys). There is something about writing, and further, publishing it on the blog and making it public to the thousands of people that read each blog post, that makes things real. It makes my fears real.

On the 22 September, I wrote a blog post ‘Good News and Bad News’ which marked the beginning of a stressful 3 months of scans. I have kept you somewhat updated on the Dear Melanoma Facebook page and Instagram page (dear_melanoma), but I have not kept you in the loop like I normally would.

The truth is, I have started to not respond to my treatment, Keytruda. We are seeing gradual growth in the few lesions that are active. The good news is that it is growing incredibly slow. I am over 20 months into the clinical trial now, and unfortunately this is the time where most people begin to not respond… and for once, I seem to be following the ‘norm’.

Next Friday I have my next lot of scans. My oncologist is expecting that this will be my last lot of scans on trial and I will be removed from the trial due to overall growth in my lesions (There is a complicated method to measuring growth that I won’t bore you with). My fingers and toes are crossed and hope that my lesions behave this scan and they are stable, because I won’t be due for another scan until the end of the clinical trial in February… We will be free for 3 months! 3 months of no ‘official’ monitoring! No risks!

This might sound a little odd. Shouldn’t I want to stop a treatment that has started to not work? Well, when you have so little options for future treatments, you want to hold onto a treatment for as long as possible, even if it is letting the cancer grow slowly. If I could, I would stay on this treatment until the cancer was getting out of control. It is all about giving me the longest time possible. I am very lucky that I have a doctor that can explain how the different treatments all work together to extend my life.

So, I am scared shitless of what these scans will mean for me…

I am scared of starting a treatment, whether it is now or in a few months time, that didn’t work the first time (Dabrafenib and Trametinib).

I am scared of a treatment that is much more harsh on the body than the piece of cake that Keytruda was.

I am scared of being sick and losing even a small amount of my quality of life.

I am scared of being pizza face (acne is one of the joys of this treatment).

I am scared about not going to the hospital on a regular basis and potentially losing an amazing network of support that comes with having treatment at hospital (this is obviously complete rubbish on my behalf, all the support I need will still be there, I will just need to be more proactive in seeking the support).

I am scared of administering treatment myself (Dabrafenib and Trametinib are both tablets), what happens if I don’t take them correctly?

The one thing I am not scared about (yet) is dying. Maybe I have just accepted my terminal prognosis. The last time I was faced with a treatment not working, my cancer was out of control. I only had 3 months to live. It is definitely different this time, I only have a small number of active lesions, they aren’t in areas of the body that are overly crucial (such an odd thing to say!), and they are growing at an incredibly slow pace.

I still feel like I have years left in me.

This feeling might change when it is time to swap treatment, but I am going to hold onto this for now.

My biggest fear is that my options are running out. There is nothing on the horizon for me. There are no clinical trials that I am eligible for now or in the near future. God, I hang onto every ounce of hope that I can prolong the options that I do have and will be here for when something does become available.

It has been a shit week since receiving my scan date and it will be a shit week leading up to the scan, but, like always, I will keep on plodding along, sipping tea and wearing amazing sparkly slippers!