It’s been 11 days since the phone call, the one where I found out I probably have another cancer on top of the one I already have. And although it feels like the longest 11 days of my life, it also feels like time has stood still. Things have happened, life has ticked on by, but I haven’t moved forward at all. Right at the beginning of this cancer crap (it’s not a journey, it’s a crapfest) someone said to me “there will be good days and there will be bad days”, but the ups and downs are far more frequent.
I can go from having moments, minutes, sometimes up to 15 or 20, of almost forgetting - of getting lost in a film, or a game, or a daft escapade with the kids, where I don’t think about cancer at all. But sooner or later, usually sooner, a word or a gesture or a comment will bring it back. Our expectations of everything are based around not dying any time soon. Our appreciation of art, literature, beauty, joy are all based around our life experiences to date. What resonates and touches us are those things that speak to the experiences and values that have shaped our lives. Once you have cancer, all of that changes.
It’s like having children. Well, cancer isn’t like having children, obviously. I mean, there is pain and a lot of crying, blood, goo, complete strangers putting their hands and fingers in places you really don’t want them to, ultrasounds, fear, tests, medical monitoring, multiple visits to hospitals, flowers, gifts, weird cravings, banned foods and new bulky things to put in your underwear. So some similarities I suppose, but I meant the life changing moment stuff.
Once you have a child, everything in your life changes. Your focus shifts. Everything is about the child, and your place in the universe shifts irrevocably. Cancer is like that. It’s all you can talk about, it commands your every move. It keeps you up in the night, pacing the floors, and every murmur, every noise, every faintly new thing has you panic-googling, expecting disaster. And without realising it, you find yourself with new friends, hanging out at places with other parents, people like you, seeking out companionship with those who understand all the complexities of this new thing that has come to live with you.
Your old friends send you love and get in touch and you love to hear from them. You chat and hang out, but they don’t have kids and although they’re interested, they talk about other stuff too, but you find you’re less interested in chat about work, social issues, politics, all the things you used to be passionate about, and you know you’re probably boring their pants off, banging on and on about your new specialist subject, but you just can’t stop yourself. You also make new friends through the cancer equivalent of NCT classes - the online cancer groups - and you know that the connections and friends you make now will last you a lifetime.
I’m not sure where I’m going with this analogy really, other than to try to explain how life changes, instantly, once you hear the words that you have cancer. There is no going back to how things were. And me? Well it looks like I’m expecting again. So soon after the first one? Haha, yes, it wasn’t planned. You’ll have your hands full! Ha, yes, won’t I just. Etc.
I’m filling my days with something and nothing. There is usually an appointment for something or other, blood tests, line flushing, injections, wigs, or phone calls to make or receive, so don’t ever think that cancer clears your schedule.
Since my chemo was suspended my gynae team have gone into stealth mode. They’ll tell me nothing, not even to hint at which of my two biopsies was the iffy one. I had a difficult phone call with the gynae nurse where I asked a number of direct questions and she deflected every one of them. Apparently gynae is ‘very complicated’, much more so than breast cancer (which is pretty fucking complicated, believe me) so basically I’m to get back in my box, stop asking difficult questions that she is unable to answer (through a combination of not being allowed to and not being able to, my assessment was 70:30) and wait my turn. None of those are character traits that I possess or aspire to.
I have a whole other blog, book, campaign inside me about ownership of cancer, which I will formulate at some point soon, about the way the system leaves the patient as a CCed recipient of information on their medical condition, rather than the living breathing heart of it, but that’s for another angrier day.
So even though I’m glaring at Team Gynae from under my suspicious raised right eyebrow, my Team Breast has been awesome. I have been switched over to the lead oncologist because I’m now ‘complex’. Anyone who knows me could have told them this a long time ago, but I’m glad they’ve caught up. Head Honco (sorry, no excuses) called me and explained the revised plan. Chemo is being paused in case the ‘gynae issues’ turn out to require a ‘surgical solution’. Che