thursday was horrific. actually, totally horrific. i had my oncologist appointment. i actually really liked my oncologist. he seems really lovely, really honest and straight shooting, and that’s what you need. but oncology is frightening, especially with my cancer terror. it is real, and solid, and he asked me questions about what chemo i want to start on, and explained how the whole process worked, and what we needed it to achieve. i was frightened. i still am.
he also told me the results of the PET scan. the scan itself was fascinating – lead lined room, napping filled with radioactive isotopes, and being slowly taken through a tube, hunting for more rogue cancer cells. unfortunately, they found some – several spots in my lungs. lung cancer is one of my great terrors. i started having what would have been the start of an anxiety attack when he said ‘spots in your lungs’ and yelping, ‘i have lung cancer’. he gently explained that i do not, in fact have lung cancer. i have bowel cancer secondaries in my lungs. i know this is different. it is hard to make it feel different. it makes my prognosis different.
but he explained also, it doesn’t change the treatment, and it’s not the concern. the bowel is not the concern. the liver is. my liver, unless the tumours shrink, will kill me. there is no if or but about it. one tumour is pushing on the left artery, and the right artery has been consumed with the cancer. if that tumour doesn’t shrink to an operable size, the secondaries there will kill me. this is grave, and one of the hardest things to hear. he couldn’t promise me a timeline. he couldn’t tell me if i would live two years. it all depends on chemo. and they can’t tell you that anyway. he also admitted that, for insurance purposes, i am terminally ill. my treatment, as they currently plan it, is not curative. they don’t see my cancer being cured, but being managed – palliative cancer. this is yet to sink in. it sort of has? but it also hasn’t.
however, on friday, after the thursday appointment, we drove to sydney for my Liver Surgeon second opinion. i have never had such a positive response to a doctor in my life. i felt complete trust in him – faith, and hope, and like we had a direction. he showed me the scans, and i didn’t want to cry. he smiled at me, and told me he had done bigger, and harder liver surgeries. he said he could show me CT scans of people who lived like i wouldn’t believe! and he said that, although it is high risk, major surgery, he can do it. he wants to get them to shrink – but he’s got a lot of hope. and he gave me that hope. in the waiting room, i cried a bit. i usually do now. i try to hide it, and i try and look down so people can’t notice that i am shaking, but i am used to nothing but fear, and terror, and one piece of worse news after another. from ‘these are fine!’, to ‘you have secondary cancer in your lung, and you might be dead in two years’, they have been some of the worst moments in my life. and after this appointment, i was smiling, and laughing and thanking him so deeply for seeing me. he’d already consulted my oncologist, and it turned out the first liver surgeon i saw had actually handed the case over to new liver surgeon, as he was more experienced.
through the next week, i am focussing on holding onto that hope. the sense that after the horror of realising that dying was a real, tangible possibility – mentally sharing out my most precious objects between my loved ones – has shifted to thinking that i might get through this to live at least a bit longer. to see at least a few more things. to be alive. but i know now, and accept now, that this is more serious than i’d probably been clearly stating. this is, one day, likely to kill me. that day might be in the next few years, or ten years, or 20. it is unlikely to be a short time, and unlikely to be a long time. but this isn’t good. at all. we are all dying – it’s not just me – but i know how i am dying in a real tangible way, and i know what my body is doing to itself. this is heartbreaking and liberating.
sydney, by the way, was lovely. a beautiful roast with Alex’s aunt, meeting an adorable puppy, an incredible Japanese meal, and some time in a house that i love. i felt surrounded by family, and safe.
one request though: i need people to do a few things for me. please do not tell me details about loved ones dying of cancer. if you are close to someone who may have passed, i don’t mind details about their treatment, or how you felt. but i’m not ready to hear about their deaths. i appreciate other people who have had cancer and not passed away telling me their own story, and though i might not reply, it really helps me. dying of cancer is, right now, a real possibility for me. i am 30 years old, i have stage four cancer – three organs affected, and i am very very scared that i will not live to see 31, or 32. 40 is exciting for me. i hear about someone planning something for next year, and i have a question mark about my head. my future may be gone. i cannot, right now, hear about people you know and love who died, in terms of details of their death; what killed them; how it progressed – unless i ask. it makes me feel sick to the stomach. it makes me have anxiety attacks. i am sure, one day, i will be able to stand before it, and understand that this happens, and it may happen to me, and i will breathe, and i will be frightened and aware. i am nowhere near that point.
the other request i have, which i have made before – please, please, please: do NOT tell me about ‘alternative cures’ for cancer. you need to understand how vulnerable i am, and people in my position are. imagine it – you are facing dying. right here, right now. and someone shows you an ANSWER! they tell you that everything that you are being told by people who have dedicated their lives to helping people heal – some of the most amazing, gentle, kind people i’ve met in the last few weeks – is a lie. that it’s BIG PHARMA. that hemp oil or vit. c or not eating sugar, or whatever, is a cure, and you are being a sheeple, by being treatment compliant to scientific studies. i read something today that said chemo was not a cure. you know what my oncologist told me? it’s NOT a cure. you need to remove the cancer. that’s how you ‘cure’ it – and i’m not even sure if the term ‘cure’ is one they use much in terms of cancer – i’m still so new to this. chemo helps you remove cancer. there are some suggestions that some of these techniques can help – a rare form of childhood brain tumour seems to respond well to hemp oil as an adjunct treatment – and it’s an amazing treatment for pain, nausea, low appetite, and a rare form of childhood epilepsy. vit c. can help SOME cancers, according to some studies. it doesn’t cure them. and it sure as fuck doesn’t help metastatic bowel cancer – it makes it grow faster from what i’ve read on actual science websites discussing how this works. and so on. it is really, really hard to see it though – YOUR CHEMO WILL KILL YOU – when right now, i need to sit back, and listen to my doctors. because they, and not random people on the internet, will be helping me. and i need to trust them. i need to go where they take me, and i need them to tell me what is happening to me, and my body.
i got offered a booklet the other day. it was called ‘when your cancer won’t go away’. it’s what they give to people with advanced cancer that is unlikely to ever be cured. i listen to scientific evidence, and people who have studied the anatomy of disease. these sites, these ideas, are written for people without that scientific literacy. i don’t have that scientific literacy, and i rely on people around me who do – a wonderful kind person who is acting as a support for me in the darkness: my partner: and a dear friend who is a science educator – to help me understand the biology, and the emotions, and the process, and the profession, and where me, and my body fits into all this. when i see these sites i always have a few moments of a fake hope that i can avoid the THING that’s going into my neck on thursday to take the chemotherapy into my circulatory system easier, with a tube through a major vein (a portacath) – that i can avoid a bag of chemo that will be lugged around for several days – that i don’t have to have these endless scans, the endless tests, the endless needles, the endless discussions of ‘how far i want to go with treatment’, the hovering question of if they can even do enough to my liver to prevent it from failing…. and it’s a lie. and i ask alex, gently, if that makes any sense in terms of human biology, and she sighs and tells me no. there’s no evidence to support that. we need to see how the chemo reacts before we think about anything else. (she has to repeat this to me, very very often. i could not do this without her).
i understand people are well meaning. and i love recommendations for say, books that give you hope through mindfulness say, things that make you calm, offers of prayers, and offers of rides. suggestions about alternative ways to cure my cancer are one of the most harmful things, along with dark terrifying stories of how people died in front of you. i know no one means to frighten me, or upset me, and i hope i’ve not been offensive here. i’ll be deleting any comments relating to these things which are posted on my blog – just because i’m not comfortable responding.