After the cancellation of Eleanor’s MRI scan we had to wait another month for an appointment to become available. It is impossible for a child of Eleanor’s age to keep completely still for an extended period of time – she doesn’t even stay still when she’s asleep! – so a general anaesthetic is required which means a whole team of people are needed to make sure everything goes smoothly.
On the morning of the 22nd April we got up early to make sure Eleanor had plenty to eat and drink before she had to be nil by mouth in preparation for the general anaesthetic. We packed overnight bags just in case of any complications and made our way on the familiar journey to the Royal Marsden hospital in Sutton.
Eleanor had lots of fun playing in the playroom and we even had a visit from Doctor Dotty and Doctor Yoho from the Theodora Children’s charity. They sat and played with Eleanor and made her laugh for ages, it really helped to make the time go quickly.
During the long wait, we had a chat with the doctor, filled in some consent forms and also met the anaesthetist who would be looking after her while she was asleep. We were told that because she now had her portacath the anaesthetic could be administered through that, saving the stress of the ‘smelly mask’. It would be quick and much less traumatic than what we had experienced previously when Eleanor had been given a general anaesthetic.
The scan was due at around 3;30pm and as the time drew closer I was watching the clock like crazy almost wishing the time away yet wanting to stop it at the same time. When I have spoken to other parents about this they have all said they have the exact same feeling and have affectionately named it ‘scanxiety’. Like any test you are having or waiting on results for, the conflicting feelings are overwhelming. I was desperate to know the results and at the same time petrified that it could possibly not be the news we had been hoping for!
The time ticked by and I was getting more and more anxious. I watched as another child was carried in by a nurse to her Mum after her scan and was sure we would be called next. Just as I was about to say that to Tim, the doctor came into the room and closed the curtain behind her. She told us that the child in the bed opposite had become very poorly and needed to be sedated and transferred to another hospital, because of this, and due to them only having one paediatric anaesthetist on at the time, they needed the one that had been assigned to us and Eleanor’s scan would have to be cancelled.
My immediate reaction was anger at the waste of a whole day, and I snapped that it was utterly ridiculous that they only have one anaesthetist, then it hit me that we would have to wait AGAIN for another scan and that’s when the tears came. I understood why the scan was being cancelled, I understood that there was a really poorly child that needed urgent help and I knew that if that had been my daughter I would want all the stops pulled out to make her better, but it didn’t stop the overwhelming disappointment that engulfed me. I was so desperate to know if all the crap they had been pouring into her over the last 15 weeks was having an effect on the tumour or if it had acheived nothing at all.
Now we had to wait, again, and we had no idea how long for.
I could see Tim was torn between comforting me and going with the Doctor to discuss a possible date for a rescheduled scan, you have to grab these Doctors while you can! He scooted off with the Doctor giving me time to compose myself and feed Eleanor. Having gone 7 hours with nothing to eat at all she was pretty hungry by this point. Funnily enough she wasn’t phased one bit, like with every thing else that she faces, she smiled and said “it’s alright Mummy, we can just have the scan another day”. I love how kids can make you feel like an utter fool with one sentence!
I felt a bit downhearted over the next 24 hours. I cried a lot until we finally got the call the following afternoon to say that we only had to wait a week for another scan.
This whole journey really is one big rollercoaster of emotions!