Out of this whole experience with cancer so far, I have to say that the most excruciating part is the WAITING. Not knowing what’s going on, waiting for findings, waiting to know about next steps, waiting to get in for follow-up appointments with specialists, waiting for calls back, waiting and hoping that there’s nothing else wrong. It feels like being sucked into a black hole of nothingness where you’re essentially “on hold” and it’s impossible to plan anything.
It starts with waiting for results of the biopsy. You get the cancer news and then it’s waiting to find out when surgery is going to be and what the next steps might be. Then it’s waiting to find out the results of the pathology from the surgery. Did they get all of it?
My understanding going into the first surgery was that if they can get the tumours out with a “margin” around them that shows they are contained – then you’re in good shape. That was the only outcome I had envisioned and prayed for.
The news that hit me hardest wasn’t actually the initial cancer diagnosis, but rather the soul-crushing announcement post-surgery that “Unfortunately, your cancer is more aggressive than we thought it was.” Just take that in. You go into a scary little meeting room for the follow-up appointment where your fate will be decided, answer all of the questions from the surgical resident that comes in first – and then your surgeon comes in while you hold your breath and ask, “Well – can we cut to the chase? what’s the scoop? Did you get all of it?” And after everything you’ve already gone through, all the prayers and good wishes everybody sent, the stiff upper lip and brave face you put on, the positive attitude – suddenly the illusion you’ve built in your mind that everything is fine shatters in front of you into a million pieces.
Pardon? What does this mean? How bad is it? What am I supposed to do now?
Apparently my cancer had spread beyond just the tumours they had identified and removed. I had secretly been hoping that the single surgery would take care of it, that they take out the tumours and BOOM – be done. But sadly, no.
I would need to undergo a 2nd surgery to remove the rest of my thyroid and then most likely radioactive iodine treatment to “zap” the rest of the cancer. OK. While not the news I wanted, I figured I can deal with that – as long as there is a plan. More waiting.
I survived the 2nd surgery [SS1] with a great deal of distress, unfortunately – but I made it. My family once again came through to support me through what was an exceptionally difficult time which was nothing like the first surgery – and frankly, the trauma from that experience and the aftermath was worse than the physical aspect of healing from another surgery. That was one of the most challenging things I’ve ever been through, and I’m now back in limbo waiting again.
The pathology from the 2nd surgery had shown that the cancer had spread and was on the right thyroid lobe as well (which they hadn’t caught in the ultrasound), so it’s a good thing they took out the right side too. From what I understand, the surgical part of all of this is now done.
I’ve been told that my care will now shift to a radiation oncology team at VGH. It’s been two weeks and I haven’t heard a peep. Nada. Nothing. Not even a “Welcome. We’re on the case and will let you know what’s up.” Is that too much to ask for? Maybe my expectations are too high, but I would have thought that the BC Cancer Agency would be one of the most attentive & compassionate institutions to deal with where every last detail is attended to, but maybe I’ve just seen too many movies.
My endocrinologist who sent in the referral has called to ask and make sure they’ve received the referral – but apparently my case is still being “triaged”. So I sit and wait. I am not under the illusion that “no news is good news” as that burned me the first time, but it’s also true that nothing new has actually happened, so there’s no point in “catastrophizing” about the future or speculating about next steps when I just have no information.
I’m a girl who does well when there’s a plan. If I know what’s going on, I can figure out what to do and go after it and get on with it. But sitting in limbo is hard. It’s bullshit and I hate it. I’ve been looking for healthy distractions to occupy my mind and time while I watch other people making plans. It’s absolutely maddening. It continues to be a deliberate mental exercise to curb the sadness and bitterness I feel for being in this situation and I’m afraid to look too far ahead as that may all crumble in front of me again. It’s hard to get excited about things to look forward to, so my focus literally just needs to remain on “one day at a time.’