Dermot and I were called in, and we sat down, nervous and excited, ready to hear the good news. And we did. We heard that the chemo had melted away the ductal cancer in my breast. If you remember, way back at the beginning, my initial biopsy showed both ductal and lobular cancers, which come from the breast milk ducts and lobules respectively. Great!
And then things suddenly got a whole lot worse.
Did she really just say that?
My surgeon started saying that there was some residual disease left. This wasn’t surprising, as chemo often doesn’t work as well on lobular cancer. But I misheard her, and thought she was speaking in millimetres instead of centimetres. All of a sudden, everything stopped. I asked her to repeat what she had just said. My wonderful surgeon, and close friend, had to tell me that the residual lobular cancer was twice the size of the initial cancer seen on the MRI, meaning that it never showed up on any of my MRI scans. To quote Blackadder, the phrase going through my mind sounded like ‘Clucking Bell’. And then I heard that both my sentinel node, (the first lymph node the breast cancer drains to), and the node next to it, had cancer deposits in them.
Tears started welling up, and I clung to Dermot’s hand for dear life as the reality of what I had heard started to sink in. The chemotherapy had treated the ductal cancer, but hadn’t touched the lobular cancer. And the cancer had spread. And it was truly occult – it wasn’t seen on either the mammogram, the ultrasound scan or the MRI. I would need more treatment. My beautiful triathlon analogy was now well and truly buggered. There were a million questions floating around in my head but I couldn’t make sense of them. All I wanted to do was to get out of the room as fast as I could, and howl at the unfairness of it all.
Breathe…. Just breathe
We did just that. We went out to the same place we had been almost 5 months ago to the day, and cried and hugged and cried again. Then we had to pull ourselves together and get through the day. Dermot rang one of his colleagues who said he would sort out someone to cover Dermot’s clinic that afternoon, so he could take me home. God knows how Dermot managed to hold it together to drive.
Then we both had the difficult job of telling our families, two days before Christmas.
Are you sitting comfortably?
I’d been here before. I felt so sorry for my mum when she heard me say, for the second time, “Go and get Dad, and sit down”. No-one was expecting the news this time. At least I’d been able to pre-warn them back in July. Doing it so close to Christmas was horrible. I went into auto-pilot, and Mum later told me I sounded like I was talking about a patient, and not myself. I’m not surprised – the news hadn’t sunk in. It wasn’t real. It couldn’t be real.
How on earth was I going to get through the next few days? We had plans to spend Christmas and New Year with our families, and I hoped that the distraction of being surrounded by people and dogs would help. It did mean that I wouldn’t have any ‘alone time’ to come to terms with what the future held. I’d just have to put the mask back on and get through as best I could. I didn’t want to put a dampener on everyone else’s Christmas, and Dermot’s sister Shelagh was wonderful. I warned her that I might wobble, especially when surrounded by all the children, and she promised to take me out for a walk if I showed signs of crying.
Remember the cancer has gone
I tell my patients who hear the same news as I had, that they need to remember that the cancer has gone. Any further surgical or radiotherapy treatment is to ‘mop up’ remaining cells, and the chemotherapy and / or hormonal therapy will treat the whole of their body. I knew that my pre-surgery CT scan didn’t show any evidence of distant disease, but I found it very, very hard to accept that the cancer had gone. Was I being irrational? How could I not accept what I routinely tell my patients? There was still the chance that there were cancer cells in the remaining lymph nodes in my armpit. Would they grow whilst I wait for my next treatment?
I’ll admit to spending a few sleepless nights googling every surgical and oncological resource I could find, looking up the latest trials and evidence, and looking up my 5- and 10-year survival, based on what I knew at the time, on computer modelling programs that we routinely use in our MDTs. This was NOT healthy, but I had a morbid curiosity that I had to satisfy. I have a lot of knowledge and knew where to look and how to guide my searches, but there are some very scary things out there, which must terrify unwitting patients and families who stumble upon them.
Carry on carrying on
I have amazed myself at the inner strength I’ve somehow found to get through the last 5 months of chemotherapy and surgery, and to be honest, at this moment in time, I have no idea where I will find another helping to get through the next phase of treatment. I know I WILL get through it, and I have the love and support of so many people, (on top of my husband, family and friends), many of whom I’ve never met. I am grateful that I don’t have metastatic disease like, unlike so many of my Twitter friends, who continue to amaze me with their courage and passion for life. I hope that I can continue helping people, both patients and health care professionals, as I carry on blogging about my experiences. Let’s see what 2016 has in store for us.