Posted 4 months ago Less than a minute to read
Scanxiety is the anxiety, worry and fear that accompanies the waiting before and after a scan. Cancer survivor Bruce Feiler described it as “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.” Rory had an MRI scan of his brain and spine on Wednesday. He has a CT scan of his head, neck and chest tomorrow. To fear is micro-metastatic cells shed from the original tumor. These clinically undetectable cells may remain present after treatment to eradicate the primary tumor. They are distributed by blood circulation and found in the bone marrow. I refuse to even contemplate the results of Rory’s scans. We will deal with them when they arrive.
Rory’s head had to be bandaged for the MRI to hold the magnets from his cochlear implants in place. Rory received Medel cochlear implants so he could continue to have an MRI but there is still a risk the magnets could move. The magnets cause a large area of shadowing on the imaging so we can’t see into large areas of Rory’s brain. This shadowing is preventing us from confirming or refuting whether Rory has Superficial Siderosis (SS). SS or iron deposition in the brain and spinal cord was proposed as a potential cause of his hearing loss and difficulty standing and walking. Unfortunately we didn’t get all the images we needed as the bandaging became sore on Rory’s head and we had to pull him out. He also wriggled a bit due to the length of time in the machine. Dr Neil the Neurologist has reviewed the images. There is no evidence of SS but optimal imaging was again not possible. We have now exhausted every avenue available to us which is frustrating. We will likely never know if Rory has SS and it is a contributor.
Rory had his annual dental check-up and I was shocked to hear he needs three fillings. These are caused by; radiotherapy which damages teeth and dries the mouth, difficulty cleaning due to poor fine motor skills and reconstruction of his jaw. I am uncomfortable about Rory having any dental procedure done in a non-hospital setting as he is only three months post- treatment. As Rory is 18 we now have to pay the cost and I was shocked. Rory has been referred to the hospital dental service and I am hoping the work will be done there but the waiting list is long. In the interim the dentist recommended an electric toothbrush and high fluoride toothpaste. Rory had an Orthotics appointment to get an ankle brace for his left ankle to provide stability and support following his fall. He is building up his walking time with the walker. The walker has developed castor shake in the front wheels so the Radius Care Shop have provided a replacement without being asked. Rory has enjoyed his usual days hanging out with Rob and Natasha and completing work outs with Dane.
My mother is back at home. She insisted on being discharged early from hospital after her hip replacement, even though she has limited mobility and is still in pain. She is the worst patient ever, refusing to take it easy and let others do things for her. My dad, brother Guy and I doing our best to ensure she takes the time to heal and does not injure herself. It is frustrating.
It has been a week of celebrations in our family. It was my birthday, Grannie Gardiner’s birthday and Sean and I’s anniversary, 22 years! On my birthday Sean, Colt and I walked the Maketawa Loop Track on Taranaki Mounga during stormy weather. We were rewarded by vivid green forest with water pouring through it and soft fluffy snow on the summit track above the Maketawa Hut. We had a snowball fight and made snow angels. Thank you to everyone who sent me birthday wishes, cards and presents. On Wednesday it was Grannie Gardiner’s birthday and we sang her Happy Birthday over breakfast and she opened her present. Last year Sean and I forgot our anniversary as it was the first day of Rory’s chemotherapy for osteosarcoma. This year the Child Cancer Foundation provided us with a wonderful opportunity to celebrate. Sam and Caitlyn looked after Rory and Colt for the night. Sean and I stayed at a hotel in New Plymouth and had dinner. This was followed by an evening walk and a soak at the Taranaki Thermal Spa. After breakfast on Saturday we walked the Lake Mangamahoe Circuit track and were thrilled to record endangered Toutouwai NI Robin there for the first time. They have likely made their way down from Taranaki Mounga. It was a lovely escape in our own backyard.