So I mark my “burtaversary” (long story you can read about here) most years, in so far as it has been 3 years, and I’ve marked it every time. Sometimes it’s from the time I found the lump, sometimes it’s from the time I lost the lump. This year it’s actually from when I was told Burt (aka the lump) was cancerous.
I found out I had cancer via text and a phone call. People are sometimes shocked by this, they think it’s cruel and unusual of my Doctor but actually I think it’s more humane. Everyone knows that good news can just be told then and there, so asking to see me in person was a bit of a give away. Plus the way the news was delivered, it was not the worst thing that happened that day, so ya know, pick your battles. If the ‘how’ and not the ‘what’ is distressing you then count yourself lucky, I’m guessing you’ve not had cancer, our frame of reference is somewhat wider.
Before my own diagnosis I thought I was pretty cancer savvy, up on the lingo, the treatments, etc I didn’t really know ANYTHING and I wasn’t going to learn much on that first day, other than mammograms are surprisingly pinchy. Nothing really sinks in after the phrase “you have cancer”, you are all teflon and shock after that.
So unsurprisingly it took sometime for the “you can never not have had cancer” factor to really start to make sense, and boy do I remember being pissed off about it.
The YCNNHHC factor is not something you have to deal with at first, first it’s all about the removal, the meds, ‘the getting through’ but then slowly it begins to dawn on you. For me, my age and type of cancer meant that I would be on treatment for a LONG time, preventative measures.
The reason I’m writing all this now (and probably again) is that 2 weeks ago I came off Tamoxifen again (I had a brief stint without it last year, here), hormonally speaking things are messy at present. I had decided to come off them probably 6 months ago, after it became clear that the lower dose was not any easier to live with, but I stayed on it, I managed 2 years in the end, which is sort of the bare minimum.
My doctors wanted the extra year on the stuff because well, it’s effective and they didn’t want the cancer to come back. That’s how they talk, I don’t think they mean to, or maybe they do because they do not want the cancer to come back but it’s hard to hear about the cancer coming back.
My rebellious nature means 2 days ago I was sent to see my Oncologist to talk over options. Due to a mix up, we’d been waiting to speak to the Doctor for over an hour:
You have to wait in oncology, where you’ve heard most of the distressing news of your past cancer self. You have to wait surrounded by people who are sick, who are fighting the good fight. You smell the familiar smells, see some familiar faces. You have to get weighed and measured again, which is pretty much a weekly thing while on chemo, but you can’t for the life of you figure out it’s relevance now; unless it’s to remind you that no matter what you do you are still A STONE heavier than before cancer and that is somehow pretty humiliating.
In short you get sad and anxious in ways that are also familiar. I don’t mean to toot my own horn here but it takes a certain kind of badass to sit in that waiting room and still want to shed the protective layer that Tamoxifen affords you – badass-ness, recklessness or maybe hormone therapy is actually incredibly crappy.
Eventually you are speaking to your oncologist, who you’ve not seen in 2 years. He is kind and sort of giddy to see you, in a way that reminds you that you are his success, and that you are more than likely a highlight of his day. However, you are his success and you are wilfully going off treatment, so you feel you are a disappointment.
Like I said, he’s kind but he’s doing his job, he’s surrounded by cancer, he knows that secondaries are no joke, he’d want you on Tamoxifen for ten years. The term quality of life gets banded around quite a bit, other treatment options are mentioned, none are appealing, all involve keeping a level of unnatural medication in your system for years at a stretch, or having your ovaries removed and plunging yourself into actual menopause. None of which in your 30′s sound like what you want to be doing with yourself. It’s the opposite of sexy, I’m pretty sure if you were to look up this conversation, it would be in the dictorionary under ‘The opposite of sexy’. Though, perhaps it would read:
The opposite of sexy : 1a : The above conversation. 1b : Donald J Trump.
Nothing is decided but the choice you thought you’d made, sensitively, painstakingly, rationally isn’t so shiny anymore. You can’t feel as proud as you had, for taking what you think is a brave decision to live your life; to purposefully hold higher, quality over quantatity because in Oncology, it seems cancer will inevitably come back and you are playing russian roulette.
You can never not have had cancer, it’s the gift that keeps on giving, if by gift you mean thing that makes me feel incredibly sad and pretty tired.
So what now? Well, I want a year free of all medication, it used to be a lifetime, however long that was going to be but I was chastened by Oncology. Oncology would prefer this to be 3-6 months but I’m standing firm, I want to remember what it was like to feel entirely healthy, to give my system a full break not just a pause. I want to use the time to become strong and healthy in body and mind, away from the pills. And then I guess we will reassess.