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Prepare…

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?

WRONG.

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.

 

Scanxiety – the longest wait…

 

I think my last post about the anxiety surrounding scans and the subsequent results was over two years ago now, I can be completely honest with you here and say that it really doesn’t get any easier. The days running up to the scan itself and the week or so following are usually a bit of a blur, it’s hard to concentrate on anything and my brain flits between the best and worst case scenario constantly.

Eleanor’s scans have, up until this most recent one, always gone quite smoothly – she gets very upset just before the anaesthetic and often goes off to sleep in tears which makes it so hard to leave her, this time however she slipped off to sleep really calmly in the middle of talking about how she was going to dream about Harry Potter, it was when she woke up that the calmness was shattered. We were called to the recovery room by the anaesthetist as Eleanor’s heart rate wasn’t picking up as they’d have expected. She was awake and kind of alert but her heart rate had bottomed out at around 4o bpm –  much much lower than it should have been. An oxygen mask was held over her nose and mouth and everyone was staring at the machine measuring her heart rate. It was a really scary half an hour before her heart rate began to normalise and the staff stopped looking concerned. I kept looking at Tim wondering if he was as worried as I was but perhaps hiding it slightly better, at one point I was close to stealing the oxygen mask myself! We now have the added worry of this  being a regular occurrence but there really isn’t anything we can do to prevent it while she is still having to be given an anaesthetic.

 

 

Our next focus needs to be preparing Eleanor for awake MRI’s. In the long run it is so much easier if they don’t have to put her to sleep to scan her.  It is something we have to sell to her though as she seems reluctant to want to try!

Here are the pro’s and con’s of an awake MRI…

Pro’s

  • No anaesthetic and in turn hopefully no heart rate problems. There are a number of problems that can arise from simple anaesthesia so avoiding as much as possible is always a better option
  • No fasting – instead of going sometimes up to 10 hours with no food, she would be able to eat as normal
  • Scans can be undertaken at any time, no need to book a team of people to oversee the anaesthetic side of things
  • Tim or I are able to go with her, although we are not able to be in the same room we can talk to her the entire time
  • She can listen to her Harry Potter audio books!
  • An MRI scan doesn’t hurt!

 

Con’s

  • As contrast is required to highlight the tumours they would still need to cannulate, to inject the contrast
  • Lying completely still for 45 minutes – I know few adults who could manage this. It is so imperative that she does not move or the images will be blurry which would make the tumour impossible to measure accurately.
  • The MRI scanner is noisy and for someone with a visual impairment, I would imagine pretty scary

 

It is something to work on, we should hopefully be able to pay the scanner room a visit at some point prior to her next scan to allow Eleanor to lie in the machine and get a feel for the surroundings, although we won’t be able to have the machine turned on just feeling the machine and having it explained to her may help her understand and in turn make it less scary.

 

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 have chosen to wait until we can see Eleanor’s oncologist so he has has some time to look over the scans and hopefully give us a more detailed explanation of the results.

Fingers crossed it is news we have all hoped for.