I may as well come out and say it straight away; the trial isn’t happening. One of the side effects of the trial drug is retinal detachment and as I already have a tiny bit of damage to my right eye from where I had a tumour (no longer there, thank you very much radiotherapy) the monitors of the trial ruled me out.
I can’t deny how much of a huge blow this was – and still is – especially coming so soon after five unnecessary days in hospital. My mum was with me when I received the call and was dumbstruck when I told her; neither of us could quite believe my recent run of bad luck.
I had started to find hope in the prospect of the trial; what if this really kicked the disease into touch? I was looking forward to my hair growing back and the prospect of having proper eyebrows and lashes for the wedding, but most of all I wanted to give my body a break from chemo, from all of my cells taking a battering in the hope that the cancer would come off worse.
But it wasn’t to be. The people at the trial centre had informed Professor Hope of the news on the same day, a Friday, and I took some comfort in knowing that he would have time to think of a new plan over the weekend. Monday came round and Prof Hope did indeed have a plan; I’m now taking a new tablet form of chemo once every two weeks. I could tell he was annoyed for me that the trial wasn’t going ahead, but he reassured me that there are still options out there.
Recently it feels like with each knock the positivity and hope I try so hard to hold onto evaporates. I have started bringing up the prospect of me dying with Tom. It’s hard not to have these thoughts when I can feel lumps on my chest getting bigger and what started out as a small red mark on my chest has now grown to what looks like a large burn.
I have to look at that every single day, a cruel reminder of the cancer literally eating away at my body and on which no medicine as yet has been able to make a real impact. Tears prick my eyes as I type this, thinking about how much I love Tom and how unbelievably heartbreaking it would be to lose what we have. I can’t help but think how desperately unfair the whole situation is, but equally how incredibly lucky we are to have ever met at all.
I look at my baby nephew and wonder how many birthdays I will see him reach. Will he even get the chance to remember me or will I simply become the aunt that died of cancer? I think of my family getting on with life without me; a new dynamic where my brother becomes the youngest.
I know Tom’s not keen on hearing such thoughts but he allows me to discuss them with him. As a reader I’m sure you want ‘Positive Ellie’ back and believe me I’m still here, but I refuse to deny the thoughts and fears that at times crowd my mind.
On the other end of the scale I’m most certainly not without hope. Hope for a complete cure? Of course, stranger things have happened. I wouldn’t be going ahead with treatment unless I believed that there is a chance something will work. When you’re as full of love for a person as I am it seems unthinkable to give up on yourself.
The good news is that my hair has started to grow back on this new chemo and although I won’t allow myself to get carried away I know there is a possibility that I could have hair for the wedding. I was at home in North Yorkshire recently and saw that the snowdrops are out; daffodils won’t be long in following. I can’t help but be cheered up at the prospect of springtime and warmer weather. It seems an appropriate season to have your hair grow back and maybe it’s time for some more of that hope too. See? I told you the ‘Positive Ellie’ is still in there somewhere.