My life after Lymphoma is a work in progress. Like unfinished projects and half forgotten ideas, waiting for motivation or inspiration and in need of a fresh approach.
Life after Lymphoma really is bloody hard… but it beats the shit out of the alternative, right?
Yup. And for each of us that survives there are countless others lost along the way. It IS important to remember how f*cking lucky we are ☘☘☘ but it’s also cool to admit that life after Lymphoma is anything but straightforward.
Life After Lymphoma
For me, life after Lymphoma is not the calm after the storm. It isn’t as simple as picking up the threads and cracking on where I left off. Life after Lymphoma may well be exactly as I left it, but I am very much not.
Life after Lymphoma is a complicated old business. It was gathering my component parts, assessing the damage and jamming the pieces together again as quickly, but not necessarily accurately, as possible. It is an acceptance of new limitations and unlearning things previously taken for granted.
Life after Lymphoma has been perceiving every ache, pain, lump and bump with the utmost trepidation. It is an emotional circus, balancing euphoric excitement at planning for an unexpected future, with the relentless, damaging whispers of survivor guilt.
Life after Lymphoma is a trip. It’s sweet and hard-won and unpredictable and exciting and terrifying. It is unknowable.
I went into my first remission in June 2012, six months after a diagnosis of stage 4B Non Hodgkins Lymphoma. I was one of the lucky few who manage to bounce back relatively easily after treatment. Sure, I had the energy of a supercentenarian and an immune system barely in the black, but the transition could have been much worse. Maybe I was too complacent, but in my head, the Lymphoma was consigned to the past. I had all kinds of shit to be cracking on with. It didn’t occur to me that Lymphoma might have other ideas.
I came out of remission six months later when the Lymphoma re-invaded, mob handed and hell bent on mass destruction. Within a few short weeks I was in a wheelchair, with a complete loss of independence and 10% survival odds. How to rock my regrowth and shifting the steroid weight suddenly plummeted to the bottom of my worry list.
Stem Cell Transplant
It was only after the Stem Cell Transplant in September 2013 that we were able to fully assess and process the fallout from life’s latest barrage of bitch slaps.
Read more about the diagnosis and treatment HERE.
First came the mobility. Tumours growing inside my spine had knackered various nerves and processes integral to walking. This meant the legs that had supported me unfailingly (give or take the odd boozy mishap) since 1979, were now somewhat compromised. In fact, my whole left side had proven itself fit for light duties only, and seemed to be pushing for early retirement. Would this improve with time and determination? There was no way of knowing, but in all honesty I was so f*cking relieved to still have my head above ground that I didn’t stress massively.
Then came the menopause. Fifteen to eighteen years early. No need to dwell, but suffice to say, it’s waaay worse than just contemplating the end of your baby making days.
Next arrived a brand new catalogue of concerns. The hidden obstacles; equally as debilitating but minus the outward symptoms. Nothing that could be zapped with radiation or shrunk into oblivion with cytotoxic chemicals – The Head Stuff.
A simmering soup of anxiety, memory loss, flashbacks, catastrophising and much irrational flapping about the children. Henny-Penny has my respect, it is supremely stressful waiting for your own personal sky to fall in. For the first time in my life I encountered something I couldn’t talk about. This was a foreign concept to a chatty-arse like me and therefore even more unsettling.
So I dealt with it in time honoured tradition. I threw a birthday party, got pissed with my mates and re-launched into the party lifestyle. It helped that 2015 was a warm summer and we spent long hours in the garden entertaining while I worked on the mural.
OK, I’ll be honest, I may well have done a bit of a Solange in my efforts to ‘drink it away,’ but as we all know, booze is not the answer to life’s problems (although it does impart a certain rosy hue) and a year later nothing had changed except the size of my jeans.
Post Traumatic Stress Disorder
It took me two and a half years to ask for help. And it wasn’t until I did ask for help that I realised exactly how much I had needed it. That was in 2016 when I was diagnosed with Post Traumatic Stress Disorder (PTSD) and shit finally started to fall into place.
It is now the beginning of 2017. I’d love to tell you that everything is back to normal, but that would be a big old fib.
I am still in a process of adjustment. I now take anti anxiety meds, which definitely make the world a little less worrisome but are yet to shush my anxious mind. I’ve also been referred for some talking therapy.
To quote a dear buddy of mine, incidentally, another Lymphoma survivor: ‘The engine is as sound as it’ll ever be but there are some dings in the bodywork, and its alright to ask for help bashing them out!’
The New Normal
I still drink more units per week than the government reckons I should. But no longer do I feel the need to challenge the Lymphoma to return by being a 24-7 wreck head.
My mobility is still slightly screwed. A significant part of Lady Sketch is conducted from within a nest of cushions, after my latest display of pedestrial ineptitude. A highly inelegant fall on the school run has bollocksed my knee and confirmed any vague notions my youngest may have had about which of his parents is the ‘coolest’… but that’s pretty low grade stuff compared to where I’ve been.
Yup, the trip down this particular creek has been somewhat shitty, but the recent past will be what informs my future, not what defines it. Me and my tribe have chosen to live in the ‘new normal,’ where we all muddle along and nobody really sweats the small stuff anymore.
Life after Lymphoma really is my ultimate work in progress. Much like the half finished canvases and pages of sketched ideas littering my studio, it often feels like one step forward and two steps back. But guess what? I’m completely cool with that.