One year ago today I had my first round of chemo. Good god, I was so scared. Of all the chemo I got, the first was the worst. Barely a week from being diagnosed, my anxiety level was at an all time high. My chemo nurse opened up a private room for me because, "I just can't put you through that. Not when I know about the week you've just had". What she couldn't put me through was being in a room with 3 to 4 other cancer patients getting their chemo, in various states of hair loss, some of whom looked a lot closer to dead than alive. I don't remember that nurse's name, but I often think about what she did for me that day. Giving me a room to shed a few tears, wonder how the hell this all happened, and sit with my husband in private was a kindness I'll never forget.
I'm happy to report that I don't think about chemo every day. The Big C is never far from my mind, but the bad times don't haunt me. I can remember every single bad time with insane clarity, but I don't focus on them. So a year later I often get asked "What was the worst part?". Most people would guess either chemo or surgery. I would tell you, and I think my fellow survivors would agree, that the worst part is when you get diagnosed. The stress of the days before you know for sure.... The terror after you know and you are sure every single minute you aren't in treatment is killing you.... The flurry of tests and scans that get ordered.... It all convinces you that YOUR case is dire. Because in the midst of your world crashing, you see the doctors, the professional ones, and they are HUSTLING. Nothing makes you feel more nervous than doctors and nurses who look nervous for you. In the beginning, I believe every person diagnosed with cancer figures they are going to be one of the one's that's gone in a matter of days. We've all heard about that happening. And because getting cancer at all seems so terrible, you're sure it's going to be as terrible as it can be.
So when I hear of someone being diagnosed with breast cancer now, that's where my brain takes me. To that terrible beginning. But how can you explain to someone who's facing this terrible truth, the chemo and the surgeries, that things are about to get better?? And I also know that they don't want to hear that things are going to get better. What they want to hear, what I remember so desperately wanting to hear, is "You're not going to die". Your friends and family may tell you that, but no one in a white coat will. That's just not how they do things. But it's the white coats you want to hear it from. I tried to convince my medical oncologist to give me a ball-park figure. "Just throw some odds at me" I said, trying to trick him into thinking I that I was as cool as a cucumber and none of this was phasing me . He firmly crossed his arms and said, "Ashlyn, you're not going to play me and I won't be backed into a corner. We're going to wait and see". And thus began months and months of people talking to me in non-specifics, promising me nothing, but telling me I was doing great.
So when I began radiation 6 months later, I was good and pissed off to find my chart did indeed have plenty of specific information. Waiting for my radiation oncologist to show up one day, I took a peak at my chart and saw "Diagnosis: triple negative, locally advanced T4N2, invasive left breast carcinoma". The internet told me that was considered stage 4 despite that fact that the cancer hadn't spread to another distant part of my body. When I eventually spoke to him about it, he essentially shrugged it off with a "Oh don't worry about that. You're significantly down-graded now." Ok that was a brief bit of good news. But then he follows it up with a look over my file and "Uh yeah, I would have given you a 30% chance of making it when we met. Now, it's more like 75%". I know what he said was supposed to make me delighted about how far I'd come, but I WAS. SO. PISSED. OFF.
I felt so managed. What did they think I was going to do with that information? Die from the shock? Give up? It was MY effing diagnosis, MY effing cancer, and I SHOULD have been effing told. I bawled to my husband and mum. And when I went to my dad, I was sure that he'd be outraged on my behalf. Instead, in his calm and reassuring way, he gently pointed out that I was really and truly missing the point. The point was that I was still here having this argument at all. I don't know how the stress of that information could have affected me a year ago today. We still don't know a lot about cancer. But there's a boat load of knowledge about stress. And it's a killer. So I'm not pissed off about it anymore. My stage was but a number (and some letters).
In writing this I've realized that a year later what I'm still doing is trying to sort this all out. The active treatments are over, but it's not really over. I'm still off work and waiting for one final reconstructive surgery. I've developed a nasty bit of radiation fibrosis that requires massage therapy (not the lovely, relaxing kind) every week. And I'm tired. I'm tired all the time. Every bit of spare time I have, I'm hoping to have a nap. They tell me this is all par for the course. They tell me I'm doing great. A year ago today everything about my case was urgent. Now it seems like an afterthought. In under a year the pendulum has swung from Dire Peril to Go About Your Day/All's Well That End's Well. That is turning out to be a much harder adjustment than I had expected.
But as I blather on about it I'm forced to remember (again) that here I am blathering at all. 365 days ago I was afraid I was dying. Today I complained about my hair looking like Sonic the Hedgehog and whined about not having time for a nap. So I guess I'll shut up about it now.
The last thing I want to mention is that I was at a very timely event yesterday. I walked back into my place of work for the TELUS Day of Giving to volunteer with a great group of people to tie breast cancer ribbons for the Canadian Breast Cancer Foundation. I can promise you that one year ago I would never have thought I'd be in a cafeteria sharing heart-felt cancer stories and feeling the warm and fuzzies you can only get from a sense of community. Getting diagnosed was such an isolating experience. Yesterday I was reminded that it doesn't need to be. There's a massive sisterhood out there. If you or anyone you know has breast cancer, make a connection. When it all feels so out of control, it feels so good to just DO something. Even if that's just making a new friend and talking to someone who's been in your shoes. I learnt that lesson along the way, but I'd forgotten it too. It felt so good to be reminded.
So I'll leave you with that. For now, please consider no news as good news. By the time I have an update about my next surgery, hopefully I'll have sorted some more of this out. And please, as always, thank you all for your support. It mattered. Every post, every message, every call, meant so much to me.
Much love,
Ashlyn
