I never thought that I would so casually say, ‘as long as its not cancer, I can manage’ or ‘it is better than the alternative – dying’. However, this has become my reality. It has become my mantra this week.
As those that follow the Dear Melanoma Facebook Page would know, I have had a bit of a rough trot emotionally. However, this last week I have had some scans and tests that fall outside my normal scheduled trial scans. Enter stress, fear, worry and absolute panic mode.
The last month I have been Ms Twitchy McTwitch. I randomly developed a twitch that is the epitome of annoying. Most (lets be honest, pretty much everyone) that I mentioned it to felt the need to share their story of how they often have twitches and it is due to stress or fatigue. I am very well aware that this may be the case as it is not the first twitch that I have had in my almost 24 years, but what sets my special twitch apart is the fact that I have CANCER – CANCER IN MY BRAIN. For me, it is not quite so easy to dismiss it as just fatigue or stress, but instead I fear that this may be an indicator that something is happening in that brain of mine or potentially could be a sign that the cancer has spread to my spinal chord.
A month ago I decided that I probably should email my oncologist about my pretty hilarious twitch. After discussing with my doctor, we did not think that it was caused by the melanoma as I had not long had scans of my brain and my brain was looking beautiful (for a cancer patient). However, the reality of being on a clinical trial - a drug that has not been used for long periods of time in patients - is that we don’t know the full extent of side effects. This little twitch could indeed be a side effect that is not often seen in patients or not documented (mum thinks it is pretty cool that I may have discovered a new side effect… lets not get ahead of ourselves, Tamsy!). With this in mind, we needed to explore the reason for this twitch and most importantly rule out melanoma, so we booked an EEG, bloods and would wait for my trial scans that were scheduled less than 3 weeks later.
EEG time!! (I am normally not one to edit photos, but TRUST ME it was so necessary to have this in black and white!
At the beginning of last week I went into twitching overdrive, so once again I sent an email to my doctor with the whole ‘BTW my twitches are going a bit crazy, should I be concerned?’, while I was secretly panicking on the inside. Half an hour later I had my nurse on the phone scheduling an appointment with my oncologist the next day, booking ‘emergent’ (alarm bells went off at this word’) MRI scans of my spine and brain and an EEG. (Side note: how amazing are my doctor and nurse, no time spent mucking around with them!).
On Thursday, after 2 hours spent in the MRI machine and an hour having my EEG test, I hit my emotional limit. I was freaking out. I was confident that it wouldn’t be cancer, and as I said earlier ‘as long as its not cancer, I can manage’, but I couldn’t believe my life had come to this.
My perspective on life has changed.
Many people would consider this as a great thing – you learn to embrace life and not sweat the little things, but I don’t want to live a life where I only allow myself to experience hurt, fear, anger, and stress when it comes to my melanoma and dying. I deserve to feel all the emotions that have come with a week of the unknown.
The scans and doctors appointments brought many emotions that I had been trying to quash for the past month to the forefront of my mind. I started to go back to the feelings I had when I wrote the blog post ‘I don’t want to die’. Was this because someone, not that much older than me, that I had met and shared my experience with was in palliative care and now has passed away? Did this make me think about what my experience with death is going to be? Am I going to be in pain? If the cancer has indeed spread to my spinal chord, how will this impact my quality of life? Am I going to be able to stay at home with my family? It made me angry that I will not have the option that Brittany Maynard (who I have written about here) to end her life under the Dignity in Death laws.
Rest time with Ralph always makes sick me feel better!
This is my life now. Although this twitch was not likely to change my prognosis, my mind jumped to death. I found out the hard way, that a simple twitch can cause everything to come to the surface. There isn’t a day that goes by that I am not sad or don’t think about the fact that I have been dealt pretty shit cards, but on a whole I manage to keep on plodding along and put that (sometimes forced) smile on my face.
So, where am I at with this twitch? To the best of our knowledge, it is not the cancer spreading– woohoo! But, my EEG did show up some mild little problem that we aren’t sure exactly what it is. So I am off to the neurologist tomorrow morning. We are thinking it is a side effect of the pembrolizumab (keytruda), but not a big enough problem to warrant coming off trial – afterall, a twitch is much better than dying!
Tomorrow I will hopefully fix the twitch, but I will also be making an appointment with the Cancer Council psychologists to help deal with some of these emotions. Sometimes I think this is more of an emotional journey than a physical one!
AND anyone that feels the need to tell me that you are only dealt the cards you are strong enough to handle – I call BULLSHIT!
