And the positive experiences I’ve had so far have empowered me, so much so that I’ve now decided to go vegan. I’ve accepted that because of the cancer and how far it’s progressed, I’m at a point where I fear food. I am literally afraid of food. Sugar, starch, processed, wheat - you name it, I fear it. I don't know which anti-cancer diet to trust, or if they're all nonsense. Nothing is certain, no one knows for sure if sugar, starch, wheat, meat or dairy is harmful, but it’s quite well known that vegetables in abundance is good for you. And I believe that the fear I feel at the possibility that the sugar or starch I eat is feeding the cancer in itself is dangerous for me. I’ve always wanted to go vegan, ever since I decided to not eat meat and fish (I was thirteen, so that makes it… 23 years ago?!) but I just never knew what I would eat instead, I imagined myself nibbling on a carrot or maybe treating myself to salad leaves.
I thought I loved yogurt and cheese too much to give it up. But then again, I used to think I loved snus to much to give it up, and then I quit and have never looked back. I used to think I needed my glass of wine after work, but now I put the kettle on and am just as happy. These experiences have empowered me to try new things that I believe may help me (or at least reduce the harm for me) in my effort to live as long as possible and as well as possible.
However I still focus way too much on work. I think about work when I’m not working, and I still answer my work emails at night. The last few months I’ve been so very stressed about work, as I managed to make the classic mistake of accepting a larger workload than I could actually do well, and that’s really affected me strongly. I don’t handle stress very well with my post-chemo brain, which means I need to get really good at not getting stressed. I haven’t been very good at that. I love my job, and I care what happens, but I need to improve myself here before I can be of help to anyone else. When I was on sick leave, all I wanted was to get back to work. Now that I’m working again, I realise it’s not as easy as that. It’s not just working, it’s working with a purpose, mindfulness at work, if you will.
Also, in the back of my head is this notion that I should do something great, for the good of others, and I’m really not doing that. Like, sell all my belongings and work with children in Syria or something. But I’m not, am I? Instead, I trudge along, see my therapist, my physiotherapist, the nurses. I take my medicines, I pray and hope for the best and I try to be thankful for every bloody day that I get. And then when some dull ache in my back won’t go away for days, I break down from the worry and agony of not knowing, of always waiting.
If in a week or whenever the results come in, I once again get the all-clear verdict, no sign of growth, how can I take that gift and spend those three months better? How can I make sure, that in the end, those months mattered? Im starting to get that these are questions I need to find a way to answer, if I want my life to have meaning and purpose.
Tomorrow is the easy bit. All I have to do is get a shot up my arm and lie in a machine. Next comes the hard part - waiting for news. And that’s the really fucked up bit - when you have advanced cancer, on some level you always do that - just wait for news and do your best to not completely lose your marbles while waiting.
I’m meeting a woman at Olmed, an orthopaedic service company working with hospitals, to improve life for people with handicaps. I’m there for a consultation about maybe getting a corset, to help with the pain from the metastasis in the skeleton.
The woman I’m meeting: So you’re here to be fitted for a soft corset. It says here you’ve had breast cancer.
Me: Have. I have breast cancer.
She: Then you’ve just recently been operated?
Me: No, I’m terminal.
She: What does that mean?
Me: It means there’s no point in surgery. It means the cancer has spread, it has created metastasis, amongst other places in the skeleton, which is why I’m here to discuss if a corset could help me.
She looks at me as if I just told her I come from another planet. This goes on for quite a while longer than what’s comfortable.
She (finally): I don’t understand. Are you scheduled for surgery? It says here that you’ve had breast cancer. I don’t understand.
Me (possibly a bit more agitated than normally): HAVE. I HAVE breast cancer. I will have breast cancer for the rest of my life. Terminal means I will die from it. There’s no cure and surgery won’t help. Now do you understand?
She (quite disbelieving, challenging me): So you’re going to die? From breast cancer? And when will you be doing that? Well… It doesn’t say that here. It only says breast cancer. (looking quite annoyed at this interruption in her day). Shall we get you fitted then?
We don’t talk much more after that. She gets me fitted for a corset, half tosses me a brochure, as if she’s afraid to touch me, or look me in the eyes. As if she could catch it if she gets too close.
What I want to say, but obviously I don’t, is this: I hate you for making me spell it out. For making me say the words. I know the deal, but I try not to think about it. Until people like you force me, and then it’s there in my mind, the truth is etched in and won’t let me pretend. I hate you for being ignorant and healthy and I hate you for the fact that I am not. Learn fucking words. Understand what terminal means.
And the sad truth is - even nurses and doctors, people who work in healthcare, when informed I have breast cancer assume I've had surgery, assume I'll be ok. They assume that I'm not terminal. Because we have such great medicines, and mammograms and early detection and what have you, and it’s only like 2% of all breast cancer patients who are as young as me and find out so late. But I am one of those 2%. And every time you force me to spell it out it hurts, and I walk around for days with the wound opened again, the grief fresh and sharp. Wounded, exposed, fearful, sad.
Today it's one year since my cancer journey began.