The week following the scan is when the scanxiety really kicks in. Over the past two and a half years we have usually not been able to wait for a whole week to see Eleanor’s oncologist for results so we ask a nurse to call us with the basic results from the radiologists report. Since our journey began each scan has given us a stable result but since treatment stopped there have been some changes. This time we chose to wait until we could see Eleanor’s oncologist so he had been given some time to look over the scans and hopefully give us a more detailed explanation of the results….

The last scan showed a small amount of growth so I wasn’t expecting good news. It made the week drag and every minute felt like an hour. Tim and I talked a lot about the chances of Eleanor being put back on chemotherapy and we really thought we had prepared ourselves for the worst news possible.

Oh how wrong we were.

Usually our consultations with Eleanor’s oncologist are around 30 minutes, they consist of a physical examination, basic neurological tests and some questions about how she is doing all with Eleanor in the room with us and rarely a nurse present. This time as we were entering the room, a nurse came with us and said to Eleanor “Fernando will have a little check of you Eleanor, and then we are going to go to the play room and leave Mummy and Daddy to chat”

OK. Deep breath, I’ve got this. The tumour has grown. She needs to go back on chemotherapy. We always knew this day would come. Eleanor can do this. We can do this.  We have done it before. This time it will be easier.

We sat down and watched as the tests were carried out and then Eleanor was ushered out of the room. My heart was racing, I could hear the blood pumping in my ears, I felt hot and my mouth was dry, but I was OK, I had prepared myself for this, hadn’t I?


I heard words, I heard the words my brain wanted me to hear. “Good news. Stable. No growth….”

Then “but”

The word BUT, that common transitional word negates or cancels everything that goes before it. It is generally accepted as a signal that the really important part of the sentence is coming up.

More words, “nodule, small, another, lesion, frontal horn…”

It has spread. We are now dealing with more than one monster.

I asked if there was a possibility it could be anything else, maybe a cyst, but he didn’t need to even answer me, the look on his face said it all. Looking back it is visible in the previous scan but was overlooked as it was just so small at that point.

It was decided that due to the size of the new tumour they would again wait until the next scan before deciding on treatment. Holding off on chemotherapy for as long as possible is the aim. Chemotherapy brings a whole host of it’s own problems so unless they see a real need to jump in and treat they will assess at each scan. Finding the balance is the hardest part. Treat before it is needed, not get the required result and cause unnecessary toxicity, or treat too late and the tumour can cause more damage. Due to the location of the new tumour there is a chance that there could be further lesions in her spine that have spread through the cerebrospinal fluid pathways, with that in mind her next scan will be of her whole central nervous system rather than just her brain. The last scan of her CNS was over a year ago.

I can’t even think about that possibility right now, my mind won’t let me go there.