Monday, 19 December 2016

Me, Myself, I...

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

So I need to confess...

I've really been neglecting my blog big time as any of you who have followed me will very much know. It's not out of laziness, or writer's block or that I don't actually wish to write it anymore. It's just that life is moving on and I'm getting further away from that person who first started writing this. It's not that I'm at all thinking "I'm alright Jack, stop bleating on about cancer!"  That couldn't be further from the truth. Of course there is an element of wanting to live life and not spend too much time on reflecting on those darker, scarier days. However I never, ever, ever forget that where I am right now is really just a moment in time and I still don't know, as do any of us, what time we have left. I am never complacent about my current good health because I have lost so many close friends and family to this unforgiving, uncaring and indiscriminate disease that I never take my current cancer-free situation for granted. I am permanently in remission until I'm not! That's the way it is. I no longer begrudge it. I just accept it as my life and get on with it. But in getting on with life I've neglected my writing.

My writing of this blog was so incredibly cathartic for ME. It allowed ME to just pour all MY emotions into one readily accepting receptacle. I could just churn out MY thoughts in a very self indulgent way, selfishly focusing on ME and what happened to ME, how I dealt with it and what it did to ME. The situations I encountered and the people I met, blah, blah, blah, blah, blah, blah...So as you can see, by highlighting certain words there was a lot of 'ME', 'MY' and  'I' going on. Actually Joan Armatrading wrote a fabulous song (and album) entitled, "Me, Myself, I". However my sentiments are certainly not the same as Ms Armatrading. And as for what Freud would have made of my "Ego and Id"! I think he'd have had a field day!!!!!

So in the midst of the "Me-fest" (tickets available through Ticketmaster!) life started to change and I was reminded that it really could not continue to be about me. There were others who, as Derren Brown might say to a hapless hypnotherapy victim, needed me "Back in the Room".

So my elongated silence is because I have been concentrating on those who have needed me, who have lived through the cancer with me for way too long and needed a big dose of attention and love - my dear, dear family. Unfortunately on the way one of my 'tribe', my gorgeous mother, passed away. Although in the latter years of her life she had dementia and was, in fairness, unaware of my battle with cancer, she was still very much part of the world that had endured the full on aftermath of diagnosis. It was only right in her last few years that I put 'me' on hold to look after her as she had always looked after me in life.

A year and half has passed by and even though missing her madly every day, the pain of grief is subsiding and I am now left with so many happy and joyous memories that I am eternally grateful and honoured that this amazing woman was my Mum and made me into the woman that I am today. I hope I'm doing her proud.

So life is taking another turn. I quit a job I love as I refused to let the stress of commuting via Southern Rail (don't think I need to say anymore) take over my life and impact on my precious family especially my little boy. I hadn't gotten through my cancer battle to be spending inordinate amount of hours waiting around on cold station platforms for trains that never came or if they did were so rammed you couldn't get on. It was a very poignant and difficult decision to make as it was the first job I took after recovering from treatment. I felt so lucky to have an amazing manager and fantastic colleagues and the work was so interesting. I don't think I have ever said or remotely thought this about any other job, but I just loved going to work which is quite something to say. I honestly thought it would be the one I would stay in until I decided, on my terms, that I would leave. However that was taken out of my hands. 

Ever the optimist I try to think that maybe it was for a good reason in the end. I have thankfully found an interesting job nearer to home (20 minutes on the bus, as am now traumatised by train travel for life or even in the summer an hours bike ride, though who am I kidding!). I am starting to remind myself of the things that I loved to do before work, responsibilities, ill health, money worries, anxiety, stress (the list is endless...) got in the way. So I've started to explore other things beyond work and my family that give me my identity back. So I'm hosting a weekly radio show on a local internet station, I'm singing and playing ukelele and jamming with proper musicians and am about to embark upon running some local music club nights in the New Year. I'm going to be around more for my family, take my little boy to school which he's delighted about and still get to do a job I enjoy along with those extra curriculum bits and bobs that keep me happy. So in the end all is good.

But lastly it means I can get back to writing my blog. Finishing off this story which needs to be finished and really moving on properly with life. Because right here, right now there is definitely life after cancer or a cancer diagnosis and even though time, at times, can be tricky and challenging (because nothing is ever the same after the 'C' word!) there's also no reason why it can't be uplifting, joyous and fun too. I never thought it ever would be again, but slowly and surely its getting there. I'll try and keep the momentum up from now on I promise...

Friday, 15 January 2016

What you waiting for?

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

Sorry for yet again another long hiatus, but this time I've had a really, really good reason which I won't go into right now, but will share at some point on this journey. Life changing, but also life affirming. Still cancer-free so no alarm bells there, but it was big enough to distract me for a long enough time and was truly worthy of my distraction!

So now the after effects have passed it's back to telling the tales of my cancer adventure and when we last met I had just had my first chemotherapy session. I'd survived it and arrived home with bags of pills and potions to help me get through the side effects of the next few weeks until my next session. I am given daily explicit instructions of what I need to do. I have tablets to help with nausea,
injections to keep my red blood cells up, oral mouthwash to stop potential mouth ulcers and horse sized tablets to help combat diarrhoea or is it constipation? Whatever it is for it could double for a suppository so if I can't stop the flow by taking it orally I could always shove it up my arse!

The nurse gave me a sheet explaining the where's and why-fors of the drug regime and my lovely friend who had accompanied me explained it to me, but the next morning in the cold light of day it's as if none of that explanation took place or if indeed it did it was interpreted to me in the form of a mime or even more possibly they were speaking in Swahili because as I look at the list and the packets of drugs I can't get my head around what I take first, in what quantity and what potential side effect it's meant to help with. I had decided that I didn't want to wait around for hours on end for the district nurse to give me my injections and that I was more than able to do this myself. It wasn't like I was having to find a vein. It was subcutaneous so just had to stab and push the syringe down. How hard could that be? All these years I'd been desperate to get rid of this spare tyre around my midriff, but now I know why I had hung on to it so resolutely for so long. For just this reason so I could have enough fat to shove a needle into without causing me too much pain. My very own pin cushion tummy! Well done me!!!!!

I'm still waiting for something to happen. I keep expecting some surge or rush through my bloodstream to take place, but it still isn't happening. I know it will, but as much as I'm dreading this happening I need it to so I know what's ahead of me. I take the tablets in the order I think I have to. I know that the injections into the tummy don't start until day 3 so one less thing to worry about right now. As the day progresses I start to feel something changing inside me particularly in my head, but it's very slow. No rush, no sudden change just a slow descent into a kind of grogginess and discombobulation which feels a bit like being tipsy, but without the funny, warm feeling you get. It's skipping the nice stages that you undergo when you're getting drunk and goes straight towards the, 'wahoo, I'm feeling a bit fucked and there's no turning back so bring it on stage'. And there really is no turning back and unlike being pissed I have no idea when or if the feeling will go away or is this just the start of how I'm going to feel for the next 16 weeks? 

I just wish I could fast forward all of this. I have no idea what is going to happen bar what the leaflets, consultants, internet, other people tell you. Its been like trying to prise blood from a stone getting any heads up from my friends who have been through this. At this stage I don't know why and can't quite fathom out why they wouldn't be more forthcoming. Even if I am trying to be the big brave I am, inside I am fucking bricking it, bricking it bigger than I have ever bricked anything and that includes childbirth and I really was crapping myself about that one!!! I never thought of myself as a control freak, but control freaky is now set to 11 on the dial that only goes up to 10 (my Nigel Tufnel, Spinal Tap moment!). I NEED TO KNOW WHAT IS GOING TO HAPPEN!!!!! But it doesn't matter what I need to know because the drugs know what they have to do and right now they are making me wait. Teasing me with the weirdness, with the waves of strangeness, with the sudden rushes of oddness then nothing. Little do I know that there is no BIG MOMENT, no BIG THING, no SUDDEN TURNING POINT.


Quite simply there is no definitive feeling or moment, because the drugs bring on reactions differently in different people. I suppose your tolerance levels kick in and depending on the individual it will effect you in more or less of a way. However at this stage I don't know this and have no idea that this is how it works. I just expect there is a standard response and most people will respond in that way. I know, I know. What a stupid assumption, but you know what? Cancer didn't even figure in my life until now and as I mentioned in a previous post I just assumed cancer, was cancer, was cancer. Obviously they occurred in different parts of your body, but if you had it, you had it and that was that and it was all treated in the same way with varying degrees of success. 

It never occurred to me that it would be so nuanced, so tailored, so specific and that the outcome could vary so much. And that's because I didn't want to or have to understand it. It was something that happened to other people, but it wouldn't happen to me. That's not being selfish or dismissive or not caring about the people it did happen to. It was just that I didn't have to understand it any further than the usual responses that occur when you hear someone has been diagnosed with a potentially life threatening illness. The appropriate responses you make because you want to show you care and have some degree of empathy. However it really is not much deeper because it hasn't impacted on you. You've not been the patient, the carer, the family member whose had to live through this first hand. You've watched from the sidelines and from time to time cheered them on. And that's ok. That's where I hope most people get to stay. On those sidelines. No reason to be part of this unwanted and quite frankly unseemly freakshow that has me sitting in a kitchen waiting and waiting for something, any fucking thing to happen so I can have my eureka moment.

But as I sit here waiting and waiting I realise that this is the eureka moment. That this is it. And for the foreseeable future this really is just it. Maybe more, maybe less, maybe bearable and at other times more unbearable, but it really is just this. Nobody can prepare me because they don't know what will happen to me and how this cocktail of drugs will make me feel. The experts don't really know if this particular cocktail will help me. They can only predict that it will based on how it's helped other people like me with this type of cancer. But they are not me and I am not them so nothing is a given. Nobody knows how their cancer will respond or react. What will or won't happen?  So all I can do is just wait. Wait for the drugs to take their course. Wait for how my body responds. Wait to see how I feel as the weeks progress. Wait to see if in the end all of this has been worth it. There is nothing more I can do but wait. So wait is what I do - though what I'm waiting for who the hell knows...