Saturday, 9 May 2015

Living in a Box

The following is written retrospectively and NOT in real time. I am currently three years in remission and intend to be so for the foreseeable future...

So instead of concentrating on my blog I have been concentrating on living. I've stopped giving myself a hard time about not writing so regularly because it's ok. No one is holding out for my cancer pearls of wisdom. No one is holding onto my every word as a way of coping, managing, getting through this utter cancer crap. However having watched a couple weekends ago the drama "The C Word" based on the amazing, talented, funny and inspirational Lisa Lynch who died far too young, it reminded me why I was writing the blog in the first place. First and foremost it was for me to get rid of all the shit in my head that  cancer had the audacity to leave behind when it decided to fuck with me in the first place. 

I was writing this as some cathartic process to make sense of my 'brush' (as was not going to give it a bigger status than it deserved - it's was just brushing no more!) with cancer and once that was done to get back to 'normal' and see my time in treatment as a blip in my life. However 'borrowing' from the lyrics Nick Drake's "Time Has Told Me" - my blog has not turned out to be a troubled cure for my troubled mind! And, if I am being absolutely honest, I fear there is no cure for my troubled mind. It's just now permanently troubled - troubled by my cancer experience and that's just the way it is. There is no eureka moment which will appear at the end of my blog when I will be made whole again because I will never be whole again - and that's not just because they loped off part of my tit and carved out lymph nodes from my armpit. Oh no! It's that the experience was so overwhelming that you never ever really get over it. It's too huge to park someone in the recesses of your mind, even if you think you have. Yes you may forgot the detail and the specifics, but the day you never forgot is the day your life changed forever. 

You may try to store this part of your life in a box somewhere in your head with the lid firmly shut, but its a box that keeps straining to open every time you have an ache or pain that wasn't there before or lingers too long, a cough you can't get rid of as well as every other little thing in-between that occurs  suddenly and unexplainably and just doesn't feel  right. It's the little tablet I have to pop into my mouth each morning because I don't want the cancer to come back, the tentative but necessary checking for lumps or bump in my breasts in the shower, my recoiling from a sensuous touch by my partner in fear of what he might find lurking there that I haven't, the lymphodema that surgery left in my arm, the numbness under my armpit where they removed my lymph nodes, the tingling and numbness in my toes that I still feel from the neuropathy caused by the strong chemo drugs along with all the other little incidental things that play on the mind.

So when I see a programme like "The C Word" and hear and feel Lisa's pain it reminds me of my own. It reminds me of why I started writing this blog, like her to make sense of what was happening to me at the time and to maintain some sort of control in what was a fucking uncontrollable situation that I did not ask for or want to be part of. To put my story onto paper then file away in a box, shut the lid and move on. But like Lisa and so many of us going through this it isn't what happens. It becomes part of the fabric of who we are and even though we may mask and hide it from the outside world its still just below the surface.

Although that time has passed and I didn't quite achieve what I set out to in the way Lisa did, I still feel compelled to write about it, even if it is spasmodically and when my heart and mind can cope with it. Her story resonated with me and so many others. However each cancer story is different and no outcome is ever the same regardless of the initial diagnosis. None of us know what our ending is going to be regardless of whether we have cancer or not. However I did have cancer and who knows it may not be my only 'brush' with it. So I think it is important to continue to write about it and forget about trying to forget about it. I know now that there will be no epiphany at the end. 

It's just very simple in that there is a story to tell which I think people might find interesting. It helps me to make sense of what happened to me, but doesn't help me forgot about it and will not result in it being the end of it just the end of telling this story and this story alone. I need to tell it, finish it and let it out of the box for good. And when I move on it's not from the cancer, but from this particular cancer story.

So even though there is no rush and it will be told at whatever speed it chooses to be told at, I do need to continue to do it. It's not about getting to the end destination in order to find my 'holy grail'. What's more important is what happens on the way there.

So will keep plodding on and when it's all done, hopefully I'll be able to live outside of that box I've created and stop trying to jump back in and close the lid. I'll be able to flatten the box and shove it in the recycling and then anything after the story has been told is just the way life is...

Friday, 20 February 2015

A spoonful of sugar helps the medicine go down...

The following is written retrospectively and NOT in real time. I am currently three years in remission and intend to be so for the foreseeable future...

True to the nurse's word 40 minutes later I am on my way out of the hospital clutching a bag of drugs with instructions on how and when they should be administered. A number of them are to stop me from feeling nauseous and are taken as a precautionary measure. I could choose not to take them, but then face the risk of being sick and right now as much as I think I don't want to be more medicated than I need to be I also don't want to be sicker than I have to. I need to believe I can get through this. I need to reassure everyone else around me that I can get through this too. I feel there's a lot riding on this and I'm not about to fall at the first hurdle. 

Also amongst the bag of med's is a number of pre-filled syringes which are used to stimulate the growth of healthy white blood cells in the bone marrow which are to be injected into my stomach over a period of days following each chemo session. It is so that I can continue to keep my immune system intact so that I can get through the next 16 weeks. They explain where and how it needs to be done should I wish to self administer or I could get a district nurse to come in on the days I need to do it if I would prefer. I am also given a sharps box to dispose of the syringes. Do you know as I walk out of the hospital ladened with drugs and drug paraphernalia I'm thinking who would have thought that there was all this behind the scenes stuff I had to be in charge of too. They didn't warn me about this at those first meetings. I'm feeling slightly duped and wondering if this is the cut price version of cancer treatment and this is why I have a supporting role. This is the woman who when on the pill would forgot to take it, would run out of Ventalin just when the asthma kicked in and who even after a lifetime of having hay fever still appeared shocked when the sneezing started each Spring. And now I was being asked to be part of an integral part of this programme that I never asked to be part of in the first place!!! Deep breaths! I must view this as the 'sugar' that will help the 'medicine' go down. "Channel your inner Mary Poppins!", I think to myself. I CAN do this, I tell myself - yet I am not so sure. 

My friend and I decide to go for lunch. We chose a quiet little spot in Hove. I am still waiting for the drugs to start kicking in, for there to be some wave of change to come over me, for me to feel the drugs coursing through my veins. But I feel nothing only anxiety brought on by this waiting game. I feel I am crap company as am finding it hard to make conversation. I can't really concentrate on anything as am obsessed with what's not happening. I thought it would kick in by now, but bar the back of my hand feeling sore where the cannula was there is nothing else. Suddenly I just want to go home and be alone because I can't bear to be in public when something does happen. I need to be in the confines of my own home safe and secure were I can shut the door and hide under my duvet. But I don't. I've honed the art of hiding how I'm really feeling since I was diagnosed. I've become practiced at looking calm and collected on the top half whilst the bottom half of me feels likes it continually treading water just to keep afloat. I have perfected the art of keeping it together for everyone else because I can't bear to hurt them or cause them concern if I go into a free fall panic, albeit that's exactly what I want to do right here, right now. 

Instead I order lunch, make small talk with my friend and joke with the waiter. I then excuse myself to go to the toilet. I can't get there fast enough. Yes I need to go, but in more ways than one.  Yes I need a wee, but I also need to go and run away, to have a little scream or a cry or something. I need to feel something because right now I feel numb. The smile I have had fixed on my face in public to comfort others since I had began to process my diagnosis is making my face ache and for a couple of minutes in the confines of this bathroom in this nondescript restaurant I want to drop the fa├žade and take the mask off. I look in the mirror. Not only do I not feel different, I don't look different either. Why? They've just pumped enough drugs into me that I should have a 'Ready-Brek type' radioactive glow around me yet nothing. As I sit on the toilet, comforted that at least I can still pee, I berate myself for not paying more attention in my biology classes and understanding the basic human biology and how the bloodstream works etcetera. But I didn't and I don't and I'm not going to get a Eureka moment any  time soon whilst sitting on the loo!!!

As I go to flush the toilet I look down and see that my pee is bright pink, the same colour as the liquid in the horse-sized syringe that was injected into me not even an hour or so again. I still feel nothing, but at least I know the drugs are moving through me. This moment in this small cubicle will be the last time I wonder why I feel nothing for as the days and weeks progress everything is about to change including me and how I feel forever...