Re-homed over on my Temple Spa blog [read…]
I keep telling myself that I have done writing about cancer and that I have nothing left to say on the subject but, I continue to prove myself wrong. Frustrated by the recent #ChallengeAccepted, black and white selfie campaign and inspired by a stupendous piece I read this morning from fellow polka dot aficionado Rebecca Wilkinson (go read it and share the living daylights out of it), I have taken the decision to run the gauntlet with this one, too. One last time. Probably.
Enough is enough.
Before I was diagnosed with cancer in January 2015, I was already living with the debilitating effects of Fibromyalgia, Irritable Bowel Syndrome, Esophageal Spasms, Anxiety and Depression (if you don’t know what these so-called ‘hidden illnesses’ can do to a body and a mind – go and look them up). Finding out that I also had a massive tumour hiding in and around my spine was akin to laying the proverbial straw to break my back.
This past weekend, my band (Braver than Fiction) played a show at The Ship Inn, in Sheffield. Local photographer, Phil Tyas just released a set of photographs he took at that gig. This is one that I was initially going to reject because I did not think it was flattering – then I checked myself.
In this photograph, I am bolstered by the morphine that allows me to stand without wincing yet I am simultaneously exhausted from the effort. I am near-blinded by the sweat that is pouring into my eyes because, if you look closely, in contrast to my superfluous, post-chemotherapy facial hair growth, I have virtually no eyebrows and, you can clearly see that sweat soaking determinedly through my hair (what there is of my former crowning glory, as it slowly grows back). This is not because I just rocked out (although in my own stilted way I did), this is a constant state of being for me due to the lingering effect of my invasive cancer treatments, including intensive chemotherapy and radiotherapy. I cannot wear make up to “make me feel pretty” (as I am so often urged to do) because it slides off in seconds, like my already-melting eyebrows, the vestiges of which you can just about see in the photograph. I cannot wear wigs “to give me confidence” because they are too uncomfortable – I would just overheat until I passed out. I gained weight until I was double my usual size but I cannot exercise to the level I need to in order to shift it (diabetes is just round the corner, for sure). Fashionable clothes? Thank goodness I was never a slave to trend or I would be excommunicated from the Church of Couture, for certain! Look closer and you can even see the residue on my neck from the fibers of the dozens of black bar napkins I was mopping myself with and the arid landscape of skin texture that came with my treatments, ageing me by more than a decade in less than a year.
But, in this photograph, I am clearly happy in the moment; enjoying my once in a blue moon chance to forget that my life has been prematurely shortened and the quality of that same life is unquestionably diminished.
I also forgot my song lyrics twice during this set. That sort of thing happens all the time in daily life, too; my memory and concentration have been ruined by cancer and the associated treatments for it. I struggle to open the packages my medication comes in because of the pain in my hands and my deteriorating co-ordination.
Standing hurts. Sitting hurts. Walking hurts. Lying down hurts. I manage to sing in my band roughly once a month, usually for no more than thirty minutes but my physiotherapist, health advisor and haematology consultant all agreed to encourage me to carry on singing because that itself is an excellent workout; plus, they all know how much I love performing so psychologically and physically, it is good for me.
It took eighteen months for me to be able to do that.
I did not earn any money from this performance. I was transported to the venue by my wonderfully supportive band mates and brought home by an equally caring neighbour. All the same, I was completely drained and several days on I can hardly move for the resulting pain I am experiencing.
Nevertheless, the DWP (my former employer, ironically enough) have just removed my Personal Independence Payment (PIP) after an assessment by a woman who is probably not a cancer specialist and who has never met me before, knows nothing about me nor how my conditions impact my routine but observed that I could make a journey to the appointment unaided (I took a bunch of painkillers, then I took a taxi) and that (while sitting) I was able to raise my arms and lift my legs off the floor. Therefore, I apparently don’t need any extra help, nor the funds to provide it.
For fucks’ sake. I can’t even wipe my own arse properly.
Am I complaining? You bet your own arse I am! I am weary of being considered ‘brave’ – I may be a badass but, I am broken.
It is approaching the first of the month and the bills I need to pay to cover essentials (like my rent) will not be honoured.
Well done to ATOS Healthcare and another statistic leveled by them. I will just sit quietly and browse through the black and white selfies of friends and family on social media, although I rarely see them in the flesh, whilst I wait for the bailiffs whom I expect will be dispatched like winged monkeys way before my appeal is even considered.
I will selfie that.