WHEN PEOPLE ASKED me what it was like to be diagnosed with cancer at 13, I would usually give them my standard, go-to answer: I’d tell them it was tough but since I was so young I wasn’t fully aware of any significant consequences and that it was worse for my parents.
And, for a long time I believed that was how I really felt but I also knew I answered in this way in order to minimise the look of sadness or – worst of all – pity in people’s eyes.
However, delving back into the minefield of emotion and angst held within a teenage girl’s diary I can now see how difficult that time truly was.
As a young teenager I had been plagued by ongoing back pain. After a year of doctor visits, acupuncture and everything in between, I received my diagnosis. Spinal astrocytoma, a rare tumour wrapped around my spinal cord.
Three major surgeries, radiotherapy and months in hospital followed. This also marked the beginning of a fractured education, as I missed out on a big part of secondary school. But, hardest of all was that the part of me that was fit, healthy and constantly active was snatched away and replaced with one fragile, broken and wrought with pain.
These challenges would be difficult to deal with at any age, but a body going through both
puberty and cancer simultaneously is greatly at odds with the natural order of things.
However, I do believe that mentally I became stronger with each obstacle. This was made
possible through the constant, loving and steadfast support of my family and friends who
remained strong around me. I am eternally grateful for this.
Neither my parents nor I remember being told I was in remission. This is telling, because they were turbulent years. We felt tossed from the safe nest of paediatric services, when we had to frantically find our wings to navigate our way in adult services.
It was only the beginning of a long, arduous journey that is now going on 21 years.
Unfortunately, my health issues didn’t disappear when my tumour ceased to exist. However, it often felt as though the support which you elicit with a cancer ‘label’ did.
We are extremely lucky to have an 80% survival rate for childhood and adolescent cancers in Ireland. However, as these are usually treated with rigorous, painful and aggressive means, it is often not without lasting consequences.
The late effects caused by cancer treatments have now been widely recognised within the medical community.
Post-cancer, I have needed eight spinal fusions. I have spent months in hospital including over two months in the National Rehabilitation Hospital (NRH).
Damage caused to the cord has resulted in a weakness in my left leg and a number of other neurological deficits, but the most debilitating symptom has been chronic pain. I have tried to combat this pain with surgery, nerve blocks, facet joint blocks, ketamine infusions and copious amounts of opiates.
Yet still I do not remember what it feels like to be without pain.
I believe it is glaringly obvious that those that have fought cancer as a child or adolescent
are in great need of continued, lasting support.
It is for that reason I was delighted to act as a patient advocate for the National Cancer Control Programme (NCCP) steering group on survivorship.
The focus groups conducted during the assessment allowed survivors to voice their concerns, which aside from any physical problems, overwhelmingly highlighted the multiple psycho-social ones they face.
Unfortunately, I believe it is these problems that are the ‘dirty little secret’ of survivorship.
The issues raised by survivors were wide-ranging. They included the often challenging journey of returning to education or the workforce. Fertility and the struggle to accept that there is now a new ‘normal’ also arose, as well as finances and the difficulty in getting a mortgage.
However, perhaps the most challenging of all are the scars that people can’t see.
It is my experience that many survivors do not have the time or capacity to sift through the myriad of emotions they feel while they are in survival mode. It is when things calm down, often post-cancer, that the gravity of their experience sinks in, and for many this can lead to anxiety, depression and fear.
It is essential that we now deliver a service where the issues associated with late effects can be addressed, and survivors are provided with a supportive, understanding environment which will help them not to simply survive, but to thrive. The Needs Assessment report launched by the NCCP is hopefully a step in the right direction.
‘Living With and Beyond Cancer in Ireland’ the National Cancer Survivorship Needs
Assessment is available to view on the HSE website here. The Needs Assessment outlines the key challenges involved and actions to be undertaken to better address the needs of cancer patients and their families.
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