During the middle of some of the most intense pain flares I’ve had, I seem to have found the eye of the storm. A place where I can stand and breathe where I can dream of being pain free. It takes some finding, and sometimes I question if I’m really in the middle of it or just so overwhelmed by the pain that my body just gives out. I suppose it could be either.
When it starts I can feel the buzzing in my feet begin to increase and then it starts to creep up my legs, slowly at first, as if teasing me “ooh, you know what’s coming but when? How badly?”. By the time it reaches my pelvis my whole lower half feels like it’s on fire. Then we wonder will it spread further? Will this become a full body flare or a will it stay in my lower half.
Once it hits my hands I know I’m done for and that’s when it happens, sometimes, I seem to find it. It’s pretty elusive but when I do find it, it’s peaceful. I often can’t stay in the eye of it for too long, but it helps.
By now Tom has been forced to call for a doctor. I have been defeated again. When they come they give me an injection of Midazolam (a high end highly addictive benzo) and slowly the most wonderful feeling of floating begins to take over and though I’m aware the pain is still going on beneath me I no longer care. It doesn’t take long before I’m blissfully asleep. Rest. At last.
This is the result of 7 rounds of chemotherapy followed by 25 sessions of radiotherapy. Post Chemotherapy and Radiotherapy Neuralgia. It has no predictable pattern and could come on at any time – especially if I’m under great amounts of stress. I am the third patient that my pain consultant has seen in two years with this problem. He said I am on the more severe end.
With all the research going into find a cure for cancer, we aren’t looking into what our treatments do to people’s bodies, reducing the side effects. In cases like mine, thought to be palliative, we aren’t worrying about what will happen the other side because it’s assumed that patients like me won’t live long enough for it to really matter. But with more of us surviving every day, it’s something that seems to be growing in importance.
Of course we want a cure all, a catch all. But right now, we don’t have it and finding ways to help treat the aftermath of chemo, or reducing the side effects doesn’t seem like such a crazy shout.
You see I battled through the treatment, I battled through the diagnosis and I somehow beat the odds and got a second chance to grab life for all it’s worth and to soak every possible moment of joy out of it possible, but I can’t. I’m stuck inside waiting for the next flare, the next call out.
I miss playing with my kids, properly playing down on the floor building ridiculous train track sets and playing with play doh, being the chef in a make believe cafe that can make whatever the customer orders with only a few ingredients. I hate that when my kids get close to me, to my legs I have to often ask them to get down, or stop leaning on me when oftentimes all they really want is a cuddle. I miss being a normal wife and not a constant source of worry to my husband. I miss being able to jump in the car and go out on my own, to walk around a shop and see everything, not just what’s at wheelchair height.
It’s the little things that matter the most, but the things we all take for granted the most. Being given a second chance and not being able to live the life I want is, as it turns out, just as terrifying and scary as being told you are going to lose your life way earlier than you ever imagined.