Sometimes the most difficult battles require a peaceful, gentle focus.
A huge shoutout to my Mum and friends Nerida, Lina and Ian for letting me have this lately while I’ve been unwell. Sincere apologies to everyone I’ve unintentionally snubbed. Please know when I say I’m ‘average’ or ‘not the best’, I’m not just looking for an excuse to get out of life. It is quite often, quite serious.
There’s definitely a pattern to my immune system taking a dive. Sometimes it begins with a fever, other times my skin becomes insanely itchy and a horrible blotchy mess as the Graft Versus Host Disease rears its ugly head. I sleep a helluva lot and heavily (to the point where Mum routinely checks to see if I’m breathing). My body is in pain, struggling under the stress of just the basic functions. During a recent 4-5 day stint, I was reduced to sliding out of bed onto the floor and crawling to the bathroom (much to the delight of Lila and Phoenix – who thought it was playtime for puppies!), my bones just couldn’t stand my own body weight. I fevered, had the shakes, vomited violently, sucked on Hydralite ice blocks to try and get some fluid in….I tossed and turned, writhing around with a relentless pain as my head pounded so hard the pressure on my eyes had me believing it just may be possible that they could actually shoot out of my face!
It would’ve been a whole lot easier to just send me back to hospital. There’s been calls for the house doctor, the ambulance and a couple of readmissions. I want you to understand my reluctance to go.
I’ve lost count of the surgeries, procedures and treatment over three rounds of cancer and Bone Marrow Transplant. I’m only just starting to realise though the deepest scars have been caused by my extended period in isolation, while fighting for my life.
That tiny room, with my bed, a chair (for my limited visitor or me on a good day) and ohhh those beeping machines (helping to keep me alive). It was another world – where the window didn’t open, the temperature didn’t fluctuate and when not being fed ‘hospital food’ my GI tract was so fried I was being nourished through a tube (sometimes more appealing than what the kitchen was dishing up).
As I try to adjust to my new body and life ‘outside’, that experience is still haunting. After being ‘away’ for so long, I truly crave being in social situations (and have seriously enjoyed some special events like weddings, live music, meals out and art exhibitions – including Dior;-), but they test me on every level. This can not be compared to our war heroes, or those who suffer from other causes of Post Traumatic Stress Disorder – but I am terribly affected by colours, noises, smells and just general activity. Fending off panic attacks is not something I thought I’d be faced with, having dealt with the Big C!
Some of my bones have packed it in, others are following. The hip that’s been replaced is good. The other one, not so. With the help of my team and pain relief, I’m now walking unaided! Re-learning how to walk and drive are big things. It’s almost easy to forget I’ve had to retrain in the smallest things, such as writing. At times I am so clumsy with dropping everything I pick up I wonder how on earth I’m going to get on with life. Despite the toll, I know that with work, the weakness will make way for strength.
I have developed a reliance on heavy duty painkillers such as Morphine and Fentanyl just to keep on top of excruciating pain. The bone-crushing pain is constant and most intense at night. It drives me to tears. The best way to deal with it, is to not let it get out of hand, by keeping Panadol running underneath, a patch of Fentanyl providing dosage across the board and Ordine (liquid Morphine) or Fentanyl lozenges for breakthrough pain. Not exactly the way I want to live, but the alternative is even more debilitating than the space cadet impact of opioids. This situation though, leads to frequent questions and discussions about addiction to such drugs. A bit of a bind to say the least. I’m doing the best I can.
Emotionally, I’ve got a lot to work through – how I’ve dodged a bullet again, how it is I’m alive while others who had so much to live for have succumbed, the changes to my body, the incredible impact these illnesses and treatment have had on all areas of my life, how I needed (and luckily received) stem cells from an anonymous donor when my own sister was a match and had committed to donating, reflecting on how my usually supportive husband gave up on my fight and walked away – completely (might as well have left me for dead), and trying to settle into life with all my worldly possessions in storage while I’m staying at Mum’s. The beauty of that is we genuinely enjoy each other’s company, help each other out, our four-legged fur babies are well looked after and the general vibe is always pretty good. I still very much live with the ‘no negativity allowed’ sign on the door!
When I’m okay – I’m really okay! However this post-transplant life continues to throw curve balls. Whilst trying to save you the horrible detail, know that the challenges I face with getting this body to work well (or even remotely like it used to), is dependent on so many factors – including the nature of my anonymous donor bone marrow transplant, complications including GVHD and the raft of life-sustaining anti-rejection medication I take daily. Those drugs (which I have a love/hate relationship with!) have had an enormous impact on my life. Day-to-day can be tough. Ensuring I can get the meds in, tolerate food etc. is quite exhausting. So, when doses change, the adjustment can be fierce. When my immune system falters, it can be incredibly nerve-wracking.
Everyone knows how grateful I am to those gems in my care team – the Drs’ and nurses, but I just don’t want to see them too often! Staying out of hospital is the name of the game.
Quiet time can sometimes be the hardest.
Encore Performances 
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