On Friday Dylan had his fourth MRI scan. It was of the entirety of his head & spine. He has been struggling on & off with back pain for the best part of a year. Initially the consultants thought it was due to his steroids (dexamethasone – which does cause him pain) but as time went on & his pain got worse even when he was not on steroids they agreed that the problem needed more investigation.
Eventually an X-ray of his back revealed that he has an L5 pars defect with grade 1 anterior spondylolisthesis. It sounds complicated but basically means that a small part of a lower bone in his spine is fractured/missing & the bone above is impacting on it. It is not uncommon & the consultant said that it may not have been picked up for years but his chemotherapy, steroids & vitamin D deficiency have exacerbated the problem.
This particular MRI scan was to confirm this diagnosis & to rule out avascular necrosis which is an altogether different situation.
Avascular necrosis is the death of bone tissue due to a lack of blood supply, it can lead to tiny breaks in the bone & the bone’s eventual collapse. It is often caused by chemotherapy & steroid use, both of which Dylan has in high doses & will continue to do so for the foreseeable future.
Scanxiety is not a bona fide medical term but it is most certainly a word that most oncology patients & carers would identify with.
Dylan had his first MRI scan on the morning of 20.12.16 & if you’ve read my post “Facts & Stats” you will know his full diagnosis & the extent of the results we received a few days later. Prior to this MRI scan he had a CT scan & X-rays.
In summary these scans revealed that Dylan has b-cell lymphoblastic lymphoma: cancer. Hence I have been pushed onto the scanxiety psychological battleground.
One American psychiatrist (Dr R. Hillard) said that “scanxiety can induce responses akin to post-traumatic stress disorder (PTSD)”; a scan is basically viewed as a traumatic event.
In the days & weeks leading up to Dylan’s subsequent MRI scans & X-rays I could feel myself shaking & becoming more anxious, I slept worse than normal, I struggled to think straight or remember anything & I felt emotionally & physically exhausted. The thought process that I continually tried to push away was torturous. As time draws closer you try not to convince yourself that the scan will reveal yet more sorrow which feels almost impossible as a scan is what brought you to your knees in the first place. In fact, I believe the psychology is that after the initial scan which reveals the cancer the vast majority will always believe that any subsequent scans will expose something bad.
Nick & I are both able to go in the MRI suite with Dylan. I had never seen an MRI scanner before December 2016 & was completely overwhelmed by its size; perhaps more so because Dylan looked so small lying on the bed. The room is cold & white, we are all given earplugs because the noises the scanner makes can only be described as some sort of sonic warfare. His first MRI scan lasted two hours & the most recent an hour & a half, prior to which he had to have an injection of contrast dye to show up his blood vessels more clearly.
Dylan is placed on the scan bed & his head is basically strapped into a large plastic brace, he has soft sponges put around any space within the brace to prevent him from moving & then the top part of the brace is placed over his face; he looks a bit like an astronaut. There is a series of mirrors on the part of the brace above his face & he wears padded headphones which means that he can watch & listen to a film of his choice which is projected onto the back wall. He is not a fan of these scans at all but knows & accepts that he has no choice; from the age of five or six the doctors believe the children are old enough not to be anaesthetised prior to a scan…a notion I still find peculiar especially given the length of Dylan’s scans. He was so distressed the first time that I promised him that I would hold his feet for the whole thing. For two hours I did not let go, I moved backwards & forwards as the scan bed moved & I just had to watch as he drifted in & out of sleep. I could occasionally see panic on his face but then he would catch my eye & I would squeeze his feet & give him a smile & a wink…he always winks back. After about an hour in the most recent scan he started to mouth “I just want to go home mum”; it is so heartbreaking.
Whilst the scan is in progress & I am half standing half leaning whilst holding onto Dylan’s feet, there is no conversation…it is not possible & even if it were it would not seem right.
In the cold clinical stark white room whilst standing next to an enormous noisy machine that has engulfed my son, my mind starts to wander.
It all starts flooding back. I stand (lean) shaking my head in utter disbelief at this shocking situation. I try to think about what I might cook for dinner or whether Ruari has got out of bed yet; I try to think about anything other than the vast amount of tumours that his first scan revealed; how we are here; how we nearly lost him; why he has got cancer & what if what if what if…
Since his diagnosis Dylan has only had eight scans in total. I say only eight because there are children who have many many more; one of whom is very close to my heart.
I don’t know when we will get the results; it is yet another waiting game.
Scanxiety makes you feel physically sick, it makes you physically shake, makes you feel like you are being punched continuously in the stomach with a few blows to the head just for good measure. No matter how bloody mindful or how realistic you think you are being, scanxiety basically eliminates all human reasoning & shoves you into a fast revolving door from which you can never really escape.
There is no reset button.
With each scan the anxiety gets worse, the waiting before & the waiting after.
Scanxiety is a condition only recognised within certain parameters & it is mentally debilitating.