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...

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...

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 façade 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...

Storm in a chemo cup

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

I cannot quite believe that I have written 22 posts and am only just beginning to share the actual treatment process with you ("We can!" I hear you cry, "Get a bloody move on!"). Talk about procrastination. However there is method in my madness. The idea being that by the time I have finished this tome they will have found a cure for cancer and we all get to have that "even in the face of adversity" happy ending we all love and my blog ends on a Richard Curtis feel-good factor flourish where Hugh Grant with all his fumbles, awkwardness and humbleness still gets the amazing, quirky, beautiful girl against all the odds! And keeping with the Richard Curtis theme what could we call the film version of my blog? "8 Chemos and a Lumpectomy" or "Cancer, Actually".  But there I go digressing yet again...

So the journey begins. First on my list of able helpers is one of my oldest (in duration of time known NOT age) friends, Jo. When I sent my round robin email and text request for designated drivers she was the first to respond. Actually I think she even offered before I asked. She was also keen that having experienced this with another of her friends first hand that she would like to come with me to the first one. I gratefully accepted. 

And how glad I am to have her with me. We have been through lots together over the years. Our families were friends before I was even born so she is like family to me and like family we've had our ups and downs. We've shared pivotal moments which are firmly locked in my memory bank, but also had times punctuated by fall outs, misunderstandings and downright belligerence! However those were in our younger more impetuous days and because of that shared history right now right here I wouldn't want to be with anyone else. 

We come into the chemotherapy suite reception and are greeted by a highly excitable receptionist who is agitated about one thing or another. I use the word 'greeted' lightly as it was more of a look of complete shock and disbelief that someone might be coming into a chemo suite reception intending to have some chemotherapy (maybe even pretending they needed it...) Bizarre that! And the reason I say that is I'm asked whether I'm in the right place, whether I'm sure on the date and a number of other what can only be classed as 'trick questions' - all of this happening when I can see my name clearly on the list. What has flumuxed her is that I am quite early. Jo is a stickler for punctuatilty and it could be said that I struggle with the concept at times so she has factored in a lot of 'wriggle' time for us to proverbially 'wriggle' and not as I would probably do left to my own devices which would be to turn up in a hot sweaty mass of apology and confusion. However our 'wriggle' time is interpreted by our erstwhile receptionist as less 'wriggle' more fucking up the carefully orchestrated list in front of her and it doesn't make her wriggle but actually squirm! 

Now I know it can't be an easy job having to work in a stressful environment with very sick people demanding attention, cavalier doctors in a wave of white coats sweeping through the ward throwing out edicts to overworked, harassed and undervalued nursing staff. However that scenario cannot be further from the truth in what is actually an oasis of calm. It's my fevered imagination running off again having glimpsed at one too many episodes of Casualty or Holby City. It really isn't like that at all and in all my time attending the hospital I never once saw a glimpse of any shenanigans between the aforementioned doctors and nurses of a less medical more than friends nature! But who knows what was going on in the private chemotherapy suite above! The only person causing waves within this still oasis was our whirlwind of a receptionist.

However over the next 16 weeks of coming here every two weeks I got use to her and actually found her dramas and angst highly entertaining. I think actually it was all a ruse to take us chemotherapy patients' minds off of what lay ahead. If that was the case she excelled and was NHS money most definitely well spent! 

But on this first occasion it is quite disconcerting and a little alarming. However once she has located me on her list and this particular drama has been abated we wait patiently for my name to be called. As waiting rooms go it is actually a really nice one - bright and airy. It also has a really nice selection of hot drinks for which you make a small donation towards the cost. You can even help yourself to the different varieties of ice pops in the small freezer which has proven to be vital to many during this particular cycle of chemo. But I'll come back to that later...

As the waiting room begins to fill up I am soon very quickly surrounded by people at differing stages of treatment and in most cases accompanied by someone. Some are bright, chatty and very funny. Others are more withdrawn, quiet and reserved. Some look really good and it's difficult to know who is the patient and who is the friend or family member. Some people look like the way I imagined and had seen cancer patients look in films or TV - pale, withdrawn and quite clearly unwell. But again in this world of cancer there is no one consistent picture or image. People deal with this differently and each person has their own tolerance levels and in turn will fare differently with their treatment plan. People come and go and suddenly I hear my name being called. 

Up until this point I had tried to keep calm and not think about what lay beyond those swing doors. However when my name is called the reality of what is about to happen kicks in and I am suddenly really scared. I know I have to do this, but I am frightened of not knowing what is going to happen to me and how I'm going to feel and if it will even work. All those old feelings of anger, resentment and fear that I suppressed since after those first few weeks following diagnosis are crystal clear and bubbling up to the surface again. This fucking disease. My mind is reeling. 

My friend picks up on my anxiety and squeezes my hand tightly as we get up. I want to slow time down to capture and keep this moment before everything changes forever. I want someone to rush in and say there's been a mistake and they've got the wrong person and my naughty left tit isn't so naughty after all and was just winding us all up. But no-one is coming to save me from what's behind those doors. "It's just you and the chemo, kid", I think to myself (and no I'm not referring to a super hero or a cowboy, though right at that moment I wish I was). I take a deep breath, steel myself and   push open the double doors. 

As I walk through the door I am overwhelmed by all the emotions that I have been feeling up until the point and suddenly I feel like I have turned into Charles Bronson in Death Wish or Clint Eastwood in Dirty Harry or better still Arnie Schwarzenegger in The Terminator (all the original ones of course!). Fuck you cancer. I'm coming to get you. 

Hasta la vista baby...