September was Childhood Cancer Awareness Month (CCAM) & instead of writing a blog post I (along with many others) decided to “Glow Gold” & raise awareness by dedicating my Instagram page to highlighting specific details pertaining to some of the individual elements that Dylan & other children like him have had to endure since their diagnosis.
I did write a piece about Dylan for the very lovely Rachel Daley’s blog. During September Rachel (another oncology mum) rather magnificently managed to coordinate an awareness campaign that included 35 different childhood cancer stories written by other mothers about their children’s cancer diagnoses:
Having contributed my own story I went on to read each & every other story that she posted daily during the month. Each & every other story was harrowing; a trigger.
My daily posts on Instagram highlighted factually much of what I have written about here on my blog site, except here I write the facts with more emotion.
September very quickly became a month where I was reliving specific details over & over again. It became a reminder of life’s fragility; that life would never be the same again. It became an extra daily punch to the head; a continual mental struggle.
In short September became a trigger.
I was aware of the toll it was taking but I was determined to see it through…I mean there is no escaping CCAM when you have a child with cancer & as I have said so many times before I am ashamed of how little I knew before Dylan’s diagnosis. However, I remained determined to continue; awareness is so important to me.
The summer holidays had just ended, Dylan was due to start back at school & despite a couple of wobbles during the summer months I had just about managed to get my head into the right frame of mind to keep going.
We are now one week into October & since starting back at school at the beginning of September Dylan has only managed eight full days in school; he has had chemotherapy twice, five days of steroids twice (the first of which sent him completely over the edge), a lumbar puncture (on Ruari’s Birthday) & two separate viruses to contend with…September has been anything but kind.
Ruari’s birthday was in September, he turned 19 & was all set to leave home; my fledgling was all set to leave the nest. He was set to enter into the adult world of self discovery & I was just about set to let him go. The realisation that my first born had reached adulthood & was ready to venture out on his own crept up on me very slowly. I started to reflect upon the years we had traversed together side by side for so long. The time lapse is glorious; a tiny helpless 6lb 13oz baby slowly transformed into a 16 stone mass of virtual self-sufficient man right in front of my eyes. Overwhelmed with sheer pride & excitement for him & what was set to unfold I allowed my mind to accept that this was his next natural step. Nevertheless, that acceptance came with huge pangs; reliving that time lapse was a trigger.
Exactly half way through the month I received a phone call from Ruari’s aunt, she gave me some information that caused complete mental collapse.
I took myself to the beach & sat for hours trying to work out how on earth I was going to break the news to my beautiful son that his father had cancer.
Just writing it makes my head feel like it will explode, just writing it makes my heart beat way too fast & my hands shake relentlessly.
In that moment my heart broke all over again; I thought I had already seen my children suffer enough.That phone call was a trigger for pretty much everything; every single sense was violently assaulted.
Ruari was staying with his father when Dylan was diagnosed & the incredibly hard task of breaking that news to him fell to his father. The irony in both of Ruari’s parents having had the onerous job of telling him that two people he loves so dearly have cancer is a trigger.
There is no gentle way of passing on a cancer diagnosis to your child; there are only the words “…your brother has cancer” now followed just a year & a half later by the words “…your dad has cancer”.
Watching his reaction was beyond heartbreaking. His reaction was a trigger, it took me back to the phone call I had with him after he learnt about Dylan; it took me back to the beginning. It took me back to the piercing pain for both of my children, the push & the pull of the long corridor, the window where I stood on the ward whilst listening to Ruari sob uncontrollably down the phone unable to speak & all the while knowing that I needed to be by Dylan’s side. It took me back to the smell of the hospital, the stark & immediate panic, the sheer exhausting & overwhelming pit of strange unrecognisable traumatic agony. I was not just feeling this for me, I was feeling it for Ruari & now his father’s side of the family. I know how they feel & it hurts so much.
Nick took time off work to look after Dylan & I drove Ruari to his aunt’s house three hours away the day before his birthday. I had not seen his aunt for years, I met her teenage daughter…the last time I saw her she was a baby. I sat with my son at his aunt’s table drinking tea. I hovered above myself as I simultaneously tried to get my head around the last few days, the last few years & the last few decades. I have no idea what I said…it’s like I was not really there; all I kept thinking was your step-grandmother, your brother & now your father. It was a trigger…for everything.
I stayed with my sister for a couple of days, not really knowing what I should do with myself. My role here was one of facilitator & I felt utterly helpless.
On the afternoon of his birthday I met Ruari at the hospital where his dad was staying. He looked like a rabbit in headlights; cancer makes you feel so useless. He told me he felt helpless & so I sat him down outside on the kerb next the the ambulance station & we talked. We talked about facing fear in the face making us stronger; we talked about the painful irony of tragedy making us better people; we talked about how important it is to allow our emotions to exhale & we talked about the seemingly inevitable. Throughout, Ruari spoke candidly & he listened with rooted emotion; that is when I knew that he had gained more skills since his brother’s diagnosis than most will learn in a lifetime. Throughout, I was suppressing emotions & thoughts that were steadily bombarding my own mind. I’m still suppressing those thoughts & emotions because firstly I need to carry my boys & secondly there are too many to decipher.
That afternoon I collected Ruari’s other aunt from the train station & drove her to the hospital. Again I hovered outside of myself & watched myself drive the car whilst chatting about what had been, what is & what might be & all the while I was thinking about Ruari & his obvious state of shock & despair.
On arrival at the hospital I was greeted by Ruari & his grandmother & my heart ached. It ached for Ruari’s grandmother; her son, like mine has been diagnosed with cancer. Here we all were, estranged for years & then suddenly & woefully reunited by bloody cancer; it was yet another trigger.
Ruari has left home; he is staying with his father’s family. I have been having nightmares about Ruari ever since; I’m back to not sleeping & I cannot stop thinking about him or the unforgiving bullet that is cancer.
I have an appointment with the clinical psychologist this week. The only way I can describe how I am feeling is a sort of numbing out-of-body experience; I am here but I am not here.
That was September; I am exhausted, I am wired & I am running on empty.
September was the trigger that relentlessly fired yet another round of punishing bullets & yet again not one of us has been left unscathed.