I’m a musician; I’m a writer
I’ve been a lover and I’ve been a fighter
I’m a mother; I’m a cipher
I’m a wannabe cancer survivor
I’m as mad as the wind at night
My name means dark; my name means light
None of these things will ever define me
Yet they have shaped and re-aligned me
I’m a story-teller; I’m a changeling
I am me and that’s the strange thing
I’m an artist, a dreamer, a drifter, a slave
To the pressures that squeeze me until I’m concave
Like a mirror that flexes away from the light and
Only observes what is written at night.
I speak the language of whomever is nearest
My chameleon tongue chides the hearts that are dearest and
Closest to me yet, I cannot feel love.
It’s the stranger who weeps by my grave, my dove
It’s the stranger who weeps by my grave.
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.
In January 2015 Mel Lampro was both diagnosed with cancer and made redundant from her day job within 24 hours. By January 2016 Mel was in remission and returning to the stage with her band, Braver than Fiction.
1st July 2016
In January 2015, I was diagnosed with Stage 4, non-Hodgkin lymphoma, then immediately informed that my future was altogether bleak and diminished; a colossal tumour was occupying my sacrum, expanding rapidly and threatening to encroach upon my vital organs. For good measure, this uninvited malignance had also entwined itself not only around but additionally inside of my spine, probing an inquisitive tendril directly into my precious bone marrow. This particular cancer was clearly making itself at home and I was urged to call my family, “sooner rather than later…”
There was no manner I could conceive of by which to calmly and edifyingly share this stark truth with my three children until I fully understood the implications myself. It took me about a week to realise that I was never going to comprehend the enormity of this particular nuisance but it was not a week wasted in contemplation. The medical staff engaged in my care had already made it brutally clear that no matter how hopeless my circumstances appeared, they were not going to give up and, in truth, neither was I; therefore, my resolve strengthened by this shared optimism, I called my children.
My wonderful children; if ever there was a time for me to know that I did a good job as a parent, it was just then. I had not always got things right, there were times when I was probably a nightmare and times when they certainly were but they handled the upsetting news with composed, diplomatic dignity and a matter-of-fact “screw you, cancer” approach that invigorated my breaking heart and made me prouder of them than I have ever been. That was also the moment when I earnestly accepted that my dear children were fully-fledged, functioning adults and relinquished my mistakenly-perceived governance over their lives because, they were evidently doing absolutely fine on their own and had been, for some time.
There are a lot of things that you are not told, when you are diagnosed with cancer; not because the messengers are unwilling but because they are unable. Cancer is a constantly-surprising beast of mythological proportions; it speaks in riddles and, if you cut off its head, chances are that ten will grow in its place.
Cancer is personal. You can relate to other people who have the disease and there is a certain relief in such silent solidarity as you sit amongst your peers in a pristine chemotherapy suite, conjoined to the bleeping sentinels that monitor the attempts to treat poison with poison but at the same time, your cancer is yours alone – you own it. It becomes a dysfunctional, unhealthy symbiotic love affair where it is challenging to grasp exactly where the cancer ends and you begin.
I felt alien, parasitized and amplified; I had become unable to walk without the extensions that were my crutches as, not only had my right leg become irritatingly unreliable but I had broken my ankle in two places after falling, due to my ungainliness. I was permanently exhausted from the effort involved in moving just a few feet, never mind the omnipresent fatigue from chemotherapy and radiotherapy. I would fall asleep suddenly, unexpectedly and friends became experts at swiping listing cups of coffee from my narcoleptic grasp. My fingernails and toenails turned an aubergine, purplish-black and one toe nail actually gave up and fell right off. The skin across my lower back was red raw from the ravages of daily radiotherapy sessions, the skin on my arms and hands was permanently punctured and bruised from hypodermic needles and cannulae whilst all that I owned, including all that skin, smelled assiduously of hospitals; no matter how fiercely I scrubbed away at it, the evidence remained – like blood on Bluebeard’s key.
Everything I put to my lips tasted of salt, except coffee, ice-cream and sherbet lemons; neither of the latter treats did anything to help decelerate the revolt of my burgeoning bulk. Infuriatingly, not content with growing “George” my tumour-baby, my overzealous body reasoned that there should be even more of me besides. Thus, the anticipated, emaciated poster child for cancer I imagined never materialized. Instead, I loaded on the pounds until I reached a terrifying seventeen stone and at a diminutive five feet three inches, this was doubly-dangerous.
This combination of titanic weight gain, hair loss and diminished mobility had taken a serious toll on my confidence. There I was, then; reclusive, obese, virtually inert and bald all over my entire body – except that stubborn area on my upper lip which remained in defiance, flying the fuzzy flag for my Mediterranean heritage.
As swiftly as I lost all of my hair, the overwhelming auras of despair and depression found me. I hated myself and treated myself appallingly, in the wake of my disgust and chagrin. I thought my lowest point had come when I had no choice but to disrobe from the waist down before lying exposed on a couch in front of several strangers while I underwent radiotherapy; my sense of humiliation was excruciating and, I cried on the first day. Yet, far worse was to come – my absolute nadir was when I found myself unable to attend my eldest son’s wedding and then, tears were not enough.
I would imagine a lot of people reading this would express their shock and vehemently enforce that those proverbial wild horses could not have stopped them attending such an event, no matter how indisposed they might be. I get that and in another place and time, I would have been similarly disparaging; nevertheless, my outlook has been forced to change.
“You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.” Harper Lee. To Kill a Mockingbird.
Compassion and empathy can be learned; surviving, although fundamentally innate, occasionally requires sacrifice and the occasional leap of faith into a horrifying unknown.
People would say to me: “You’re so brave!” I would feel uncomfortable and embarrassed because I am not brave; it really is all smoke and mirrors. I volunteer for light duties one day a week at a local cancer charity shop; the five hours I spend there depletes me and whilst I probably look fine at the time, I wake up late the next morning, shattered and aching. Nevertheless, it feels amazing to be involved with something real and purposeful. Being able to return to my role as vocalist with my band has likewise been a major lift to my languishing self-assurance. Somehow, the persistent drone of the minutiae that deafens me in daily life distorts and fades when I am singing. It has said by many that that performance transcends reality but trust me, standing up for thirty minutes is no simple fairy tale for this entertainer.
“Every step you take it will feel as if you were treading upon sharp knives.” Hans Christian Andersen. The Little Mermaid.
How I have not yet fallen over and/or off the stage is a marvel to me – I expect it will happen, one of these days, but if and when it does I shall just have to style it out. I style a lot of things out, nowadays; unpredictable tumbles, uncontrollable flatulence, urgent incontinence, random vomiting, acute breathlessness and that damned, unrelenting sweating. I dare not sit on a vinyl seat for fear of leaving an involuntary, damp calling card and I recoil when anyone tries to hug me to save their anticipated disgust at my wet dog clamminess.
Today though, I am experiencing my first post-chemotherapy cold; just a common sniffle that has edged its way down to my chest and caused a wretched cough but I am at home, managing quite well with lemon and ginger tea sweetened with a dollop of honey. This was an entirely different scenario whilst my immune system had imploded during treatments and a similar infection sent me to the hospital for a week. If this were a fictional account, I would probably write myself delicately wan, reclined on a cloud of fresh, white linen in some Austen-esque malaise; in reality, I was so out of it that I could not adequately control my own bladder or bowels. Already weakened from the unrelenting pressure of “George”, as soon as the illness took hold, what remained of my pelvic floor took to the hills. Since this whole cancer episode started, I have peed myself more times than I am comfortable with but, waking up to the realization the faecal incontinence fairy has visited overnight is about as the most discomfiting experience that could exist.
However, that was then and this is now. Today is also an anniversary; it has been precisely one year since I was told I was in remission. I hadn’t even realised; my Facebook ‘memories’ prompted me with a timely update which is just as well since chemotherapy and radiotherapy have left my brain so addled that my concentration and recall are shot to pieces. I cannot remember what day it is, most of the time and I am so close to forgetting song lyrics that the ignominious reality of having a written prompt on stage is looming dangerously close. Better that than a bucket though, eh?
So no, I am not brave; I hate the way cancer has changed me and yes, I do contemplate my mortality far more often than I probably should. I am certainly not going to sugar coat any of this; having cancer sucks.
What I definitely am going to remain though is human – the strongest urge I have ever known, aside from the protection I feel towards my children (even though I have accepted that they are grown) is the urge to live, to carry on, to survive.
I am a badass.
Mel Lampro Mother, musician, stubborn cancer survivor.