I had just been diagnosed with breast cancer in my 30’s when I read an article in the Herald which mentioned that breast cancer was the "sexy" cancer to get. I was furious and ranted for days about this. If anything didn’t make me feel sexy, it was dealing with the fall out of cancer treatment. My scarred breast with surgery and radiotherapy was painful and forever changed, my confidence and wellbeing at rock bottom, my anxiety levels high, I was in a state of exhaustion and hyper-reactivity. He ( and yes it was a he) went on to say that because breast cancer attracted attention, a whole month of awareness to itself, research funding it was kinda cool to have breast cancer. He seemed to believe there was a pink hue that coloured it all away. I wrote several letters to the paper ( those were the green ink days, no twitter then to express disgust) but tore them up. None were ever sent. My release was a tear soaked pillow- and not for the first time.
I’ve been reminded of this recently as I’ve adapted to another loss of wellbeing. This time a bony growth on my spine with the impact of chronic pain and loss of mobility. Definitely not a sexy condition to get. My only nod to frivolity is a fancy walking stick. It’s not really up there with walking round the streets over night in a decorated bra, is it?
And the contrast doesn’t end there. Because breast cancer isn’t in anyway a cool or sexy condition to get but what it does have, at least at the primary stage of diagnosis, is a clear diagnosis and treatment pathway and a well established network of support. In my recent breast cancer diagnosis I was diagnosed promptly, treated promptly, referred to specialist nurse and linked to a Maggies centre and Macmillan project as well for support. That not only has the impact of really helping with different issues and enabling the learning of new skills but you also feel valued; like your wellbeing matters to others.
A diagnosis of a neurological condition has been so different. And I know from work I’m doing for the Neurological programme at the ALLIANCE, that is common to many other diagnosis across the spectrum of neurological illnesses. The neurosurgeon was kind and skilled in his diagnosis but also brutally honest in his assessment of my future, with or without risky surgery. It traumatised me and my husband. Our information support was google and it was less than helpful as this is a rare condition apparently. My GP was as shocked as we were but did suggest OT and community physio when I asked about it. Then I turned to friends and family, many of whom are very knowledgeable on medical issues and so I built up a greater sense of what was possible. I asked to be referred for physio and the appointment took 20 weeks to arrive. Meantime I paid for several physio appointments which were of limited value. I paid too, for a second opinion which confirmed the first one but at least that settled my mind. No nurse specialist exists to support you through diagnosis, no clear plan is available, no easy access to physio that’s appropriate, no signposting to charities that can help. At times I feel lost in a maze not knowing how to escape.
As with a diagnosis of breast cancer I don’t know my future, and that kind of uncertainty is after all familiar to me so I’m relatively resilient; having learned over many years to stay in the here and now as much as I can. But the kind of trauma these types of diagnosis has frequently results in a type of PTSD ( post traumatic stress disorder) and I feel for those people who don’t have my experience and resources to help. The cushion that a clear pathway of care provides, including referral to support and rehabilitation type services reduces stress, improves skills and knowledge and helps you respond best to treatments. And what’s more you feel like you matter.
It’s a strange serendipity that has led me to be working just now on the Neurological programme at the ALLIANCE but what I have learned through my own experience I will be putting to good use while I’m supporting that vulnerable community. Because we all matter and there is so much that can be done to improve things. So in 2018 you find me managing my pain better, pacing myself ( and trying wrist crutches soon), with my sleeves rolled up hoping to make things better for others too.....and of course I'm planning fun times along the way.
Wishing you all the best for 2018.
