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...

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...

Tuesday, 28 October 2014

Is that all for little ol' me???

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

So the treatment begins (thank god for that, I hear you say, maybe the end is nigh...literally!). I return to the chemo suite where I had my induction. The room is half full with people either waiting to start treatment for the day or in the process of having it. The atmosphere is calm and quite peaceful, although this could seem to be the case because of the whirlwind of the reception area I've just come from!

This is NOT an accurate portrayal of any of my chemo nurses!

I scan the room looking at all the other patients assembled here. I'm wondering if I did the right thing by delaying starting. Maybe if I had started with the other inductees last week I might have a bit of camaraderie about the whole thing. Like we were all in this together instead of feeling like an outsider looking in.

A nurse comes up to me and asks me where I'd like to sit. My mind is whirling and I resist the urge to say "Anywhere else but here, love!". As I look around trying to find an empty seat (who'd have thought this was the place to be!) I decide on a spot on the other side of the room which seems less conjested. 
It is lovely and bright on that side of the room too and I can't quite understand why others have chosen to sit away from the light (but is something I do come to understand as treatment progresses, but again another tale for another post...) 

There are different types of chairs available. There are armchair types of chairs. There are reclining chairs with padded headrests. There are a couple of what look like massage tables. I decide that the armchair style looks good as not sure I can be trusted in a recliner type as it has a control pad and I am bound to end up pressing the wrong button at the wrong time (which is actually very perceptive of me because yes, you've guessed it, there is a future post about just such a situation...). I am intrigued by all these different types of seating. Who uses what and in what order? Have I chosen the wrong chair, will I regret my choice of chair, are all those sitting on the other side there for a reason? Are they all exchanging knowing glances with each other silently acknowledging to one another that I've made a terrible choice. While this ridiculous dialogue is taking place in my over active, over thinking and completely over the top mind the same nurse comes back with a clip board and thankfully breaks me from my crazy meanderings. 

She asks me to confirm my name and date of birth. She then asks me what I am there for which completely throws me off centre. I resist the urge to say a pedicure or to respond by saying, "Well if you don't know how the hell am I meant to." I then start thinking, "Is it a trick question or do I have a choice?" Oh god. I want my brain to just switch off. Suddenly I can't start this treatment quick enough if it will slow down my 'runaway-train-which-is about-to-crash-brain' and stop the persistent unanswered questions swirling around my head. I tentatively answer with more of a question, "For chemotherapy?". She smiles and I suppose ticks it off her list of questions. There is no explanation as to why she has asked me what seems to me to be a bleeding pointless question so I come to the conclusion that for legal purposes she needs to confirm that I am really not expecting a pedicure! 

She then passes me a questionnaire which consists of a series of questions about how I am currently feeling. Over the next 16 weeks I am asked the same set of question to see how I fare under the treatment. However at this point I speed through the questions. I'm feeling fucking fantastic I want to write so you've all made a monumental mistake because if I had this cancer thing you all insist I have surely I would feel it and all these questions would make more sense. However this isn't how this cancer thing works. It's not sitting on my left tit in a high-vis jacket with a beacon strapped to it's head. No it's nestled away causing havoc underneath the surface so that right now none of us can see it. My friend is chatting away trying to maintain an air of calmness like we are just hanging out. I'm trying to concentrate on what she's saying and mentally preparing myself, however my mind wanders off. I start thinking what a really beautiful sunny winters day it is. Too gorgeous to be here. However before my mind starts drifting off completely the nurse comes back with a trolley full of drugs. 

She takes one of my hands and looks at it intently, she tells me, to see how good my veins are as she needs to put a cannula into my hand. I am sure all of this was explained to me at the induction, but I can't remember a thing and as I allowed a week to pass I cannot even begin to raid my memory bank for any such information. I was so much in denial about all of this ever happening and that at the last moment the oncologists were going to run into the chemo suite clutching a piece of paper saying they'd got it wrong or they'd mixed up my results with someone else's!

However this isn't the case. It's now very real and there is no turning back. I've got to be a big girl and just get on with this now. The nurse suggests that I put my hand in some hot water as that helps to bring up the veins and makes the process of inserting the cannula much easier. I walk numbly to the sink and and do as I am told. It all feels very surreal. Little do I know how quickly I will adapt to these rituals and do them automatically without even questioning them or being nervous of them. They will become part of the process for getting better. However this first time feels overwhelming. I am trying not to cry and wishing I could hold on longer to this last minute before my life changes forever, but I can't. The chemo suite is getting busy and the nurse is leading me back to my seat. 

My veins are, according to her, looking good. "Thank god I injected into my groin when I was on heroin!". I actually have no idea why I said that. It was like some cancer induced Tourette's! It was an incredibly weak and probably highly inappropriate attempt to lighten the situation, but I couldn't help myself. If I didn't try to laugh I knew I would just break down. However she then starts to look really confused and picks up my notes so I quickly have to tell her I was joking. She smiles weakly probably wondering what sort of cretin she has before her. 

However she continues in her professional and efficient manner. She inserts the needle into the back of my hand which hurts more than I thought it would. I squeeze my friend's hand, so grateful she is there with me. I thankfully have never been needle phobic and thought it would just be like have an injection or having a blood sample taken, but it's not. It hurts and is uncomfortable for a good five minutes. However it does start to settle as my hand gets used to this invasion into its veins. She then rolls the drugs trolley nearer to her. She begins to explain what is going to take place (am saving the detail for my next post or I will never finish this one!) I'm trying again to take it all in, but it's not really working. I am transfixed by all the drugs on the trolley. I keep thinking how does she knows whose is whose. Also I am confused as she is injecting the drugs into me herself. I assumed I would be attached to a drip like you see in the movies. Why is she doing this? I obviously really missed all this at my induction or maybe they gave me something to read which I have failed to do, but I am more confused than ever (which is not that hard these days)...

I hear my disembodied voice start to ask the nurse questions, "Is it normal for you to be injecting me?", to which she replies yes and explains why. I then ask her about how she knows which drug is for who. She looks puzzled and I say that the syringes look huge and there are quite a few of them so I take it she has drugs for more than one patient and it must get confusing who is for who. She looks at me again rather puzzled, but reassures me that each trolley has all the drugs for one patient's chemo session. The drugs cannot be put onto the trolley until they are ready to be administered. I must look horrified as she quickly reassures me that the whole process might look daunting, but only takes about 30 to 40 minutes then I'm free to go and enjoy the rest of the day. I am still stuck on the fact that so many drugs are going to be pumped into my body. This from the person who has only had up, until this point, had to take an antihistamine for hay fever, the contraceptive pill and an asthma inhaler from time to time! That's as toxic as I've been - well on non-recreational drugs anyway!!!

I cannot get my head around the fact that all those drugs that look like they should be administered to an elephant or at least a large horse are actually just for little old me! What the fuck am I going to feel like with all that swishing around my body? And after 8 sessions I am going to be well and truly medicated! I am stunned into silence. I feel powerless and scared, but I have no choice. I don't want to die, but I also don't want to be made to be so ill that I can't function and there is no way I am going to breeze through this with that amount of stuff in me. I feel so stupid that I didn't do enough research on what was about to come. But it's too late now. I swallow back tears and close my eyes still clutching my friend's hand. The nurse asks if I'm ok and I nod my head keeping my eyes closed. I am exhausted from the rollercoaster of emotions that I have felt since my diagnosis, but I need to stop fighting and trust that everyone involved, my cancer entourage, know what they are doing and that all I have to go through is going to make me better in the long run and hoping, with everything crossed, cancer free. 

"I'm ready.", I say to the nurse and within seconds I begin to feel the liquid coursing through my veins. The next stage of my gap year is well and truly underway...

Monday, 22 September 2014

All quiet on the western front...

Well you may have noticed that it's been a bit quiet on the western front by my lack of postings. Will I could blame life getting in the way of everything, which indeed it does - not that I'm complaining having swerved what could have been my untimely demise! I could blame summer holidays where we retreated to north of the border with no internet connection (bliss) and concentrating on the needs of my wonderfully demanding family. I could also blame it on dealing with the emotional turmoil of moving my elderly mother into long term residential care and being wracked with guilt even though it was the right thing to do. Or I could blame it on just being plain lazy and not being arsed to write. Or lastly that I had a bit of 'writer's block'.

Well in all honestly it is a combination of all of these, but also and more importantly it's because I am now about to begin to relive a 'journey' (my elusive gap year!) that nearly three years on (can't quite believe where time has gone) I have pushed to the recesses of my mind. However even though it isn't in the forefront of my mind and is just below the surface it keeps cluttering up the way for new stuff to come in and effectively for me to move on. That's why I've been writing this blog. To shift the thoughts, feelings, fears, idiocies and worries away onto the page and out of my head. Even though I want to keep doing this I am procrastinating because I don't know how it's going to make me feel and what deeply buried emotions it might bring up. However I know I have to write it. One of the reasons I keep putting it off is because I feel the need to make it all factually correct so that those reading it who might be going through this will have all the right information. Because I can't remember things like the actual pharmaceutical names of each drug and what it was meant to do and in what dosage it was given (because I can't find my notes) I have feared my accounts would lack authenticity or credibility. 

However this blog is not a medical fact sheet, but an honest account of MY feelings whilst having treatment not anyone else's. It doesn't need to be factually correct and I can even give myself poetic license to exaggerate the facts especially to get cheap laughs - something that hasn't fared me too badly in real life! So I need to stop making excuses and blaming everything and just get back on that horse and start writing again. I think I have been quiet for long enough. 

But one thing that has really spurred me on is a commuter buddy who is a writer (and a proper one at that and not masquerading like me!). I was telling her about my difficulty in beginning to write again and that I was unsure how it was going to make me feel and that I wasn't sure it wouldn't take me to a dark place that I'd find hard to leave. She then said sometimes the best writing you can ever do comes from when you are at your lowest because it is the most honest. Don't wait to feel better as then it can feel contrived. 

I know she is right. It won't be all doom and gloom because it wasn't like that, but I'm now not so frightened of going back there as it's all part of making sense of what happened and me getting better. So normal service will resume very soon. You have been warned...

Friday, 20 June 2014

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...


Saturday, 12 April 2014

You don't wanna do it like that...

So before I launch into my treatment journey (and yes I hear you all saying please get bloody started!)  I just wanted to share this with you because personally I think it's really important when somebody gets a diagnosis like this that they are absolutely ready for the amount of 'advice' (and I use that word lightly) they will receive. It is also very timely as I am signed up with my lovely friend Swazi to do the 2014 Moonwalk (actually the Half Moon, but still physical activity involving 13.1 miles of walking at night with your top half clad in a bra only!) and on Swazi's blog Chocolate is not the Only Fruit one of her most recent posts about sponsoring us tackles the very same subject (as she's a much more prolific blogger compared to my pathetic one post a month you may have to look for it - though all her posts are worth having a read of so don't be shy!)

However I do want to begin this post by saying that I know that many of these people who give this type of 'advice' are not doing it out of maliciousness or in any attempt to hurt the person who they want to impart this 'advice' to. They honestly want to share what they know, believe or have been told because they want to help the person. Well I want to believe that this is their starting point.

However in my humble opinion what I actually think is that they are being a bit thoughtless and not always helpful to a person who is already confused, scared, unsure and completely and utterly lost as to what to do for the best. The person receiving this 'advice', without wanting to put too dramatic a slant on it, is frankly having to make decisions about staying alive. So when someone approaches you with something they've heard, read or been told worked for someone else it puts the person being given this sudden 'revelation' (because trust me that's exactly what this is if they haven't heard it before and haven't even considered and accepted or dismissed it into the bin of old wives tales, quackery or snake oil remedies) can be quite mind blowing. Literally. Even if you have dismissed it as a load of hokum that has no place in your treatment plan and never will do, logic goes out the window as you begin to doubt yourself and start questioning what you've decided to do. 

I feel qualified to say this because that is exactly how I felt. I live in a town which is a lovely combination of old school traditions and new school quirkiness. I love it and wouldn't and couldn't imagine living anywhere else. But it sometimes comes with a price to pay. Although I can accept and understand the alternative approaches brigade I also tire of the constant deluge of medical versus non-medical sermons with, I have to say, the non-medical alternative voice, at times feeling much louder and more sanctimonious. When having to make big decisions it can make for difficult and unsettling listening. 

I have always embraced and been a supporter of holistic approaches to health. So much so that hundreds of years ago I qualified in aromatherapy massage (and 'yes' to all you cynics there is such a qualification and 'no' I am not available to hire, nor for your dirty minded individuals do I do 'extras'!) That was all a very long time ago in another dimension. However my point being that I have had first-hand knowledge and have been exposed to a non medical practice that had incredible benefits in the healing process. But that was exactly it. It formed part of a bigger process. By me giving someone a massage with essential oils it wasn't going to cure them of cancer or Crohn's disease or HIV, but what it did do was support the healing process. Aromatherapy massage is a great relaxer, de-stresser, detoxifier, works wonders on the neurological system, is fantastic for aiding good circulation and gives the immune system a great boost. However it is not the cure to acute and life threatening illness and because of the toxicity of some natural products such as essential oils should not always be used whilst undergoing medical treatment. In short it made you feel nice, helped kick start your system which in turn impacted on your overall health. But again, a bit like cancer, the responses are all very individual and what might work for one person has no guarantee of working in the same way for another person. 

I cannot put into words the awful feeling that wells up in the pit of your stomach when you are wracked with indecision about whether the path you are taking is the right one. All you want to do is make the right decision that will enable you to fight this thing head on. What you don't want is the feeling of being judged for not doing something in another way when you have already had to make the most important decision of your life to date - the decision about having a life to make decisions about in the future!!!
Harry Enfield's '"You don't wanna do it like that" character
And another point I want to make so as not to upset my friends who have an interest, are actively involved or work in this alternative therapies field is that I am NOT talking about you. You are my friends and not at any time did my FRIENDS question my plan of action. If alternative approaches were discussed with my friends then it never came across as judgemental or sanctimonious and it was certainly never received in that way. This post is talking about those whom I maybe have a tenous acquaintance with, work colleagues and in many a case complete strangers. Those are the memories that resonate with me. 

Just to demonstrate what I mean I thought I would share some of these with you:

  • Lavender oil rubbed/sprinkled/submerge onto the affected area (never explained exactly how much was required and how frequently - suppose that wasn't too relevant)
  • Ice cold cabbage leaves (again no type particularly specified so can only assume that savoy, red, green or even napa would do it?)
  • Vitamin C IV treatment (a lot more out there about this, but still not sure...) instead of chemotherapy
  • Coconut oil (the wonder oil that just about cures everything, but doesn't help if you hate coconut!)
  • Wearing a bra at night or not wearing a bra at all (this one was clearly interchangeable because was given by the same person. Never did quite clarify why it needed to be complete cladding 24/7 or hanging free all day, every day. Maybe depends on type of breast cancer?)
  • Coffee enemas (again know this one has been around for a long time, but not sure it's for me. Seems like a perfectly good waste of a cup of coffee and really don't relish the idea of shoving it up my jacksy. Call me weird, but that's the 'coffee in a cup and not up my arse' kind of girl I am.)
Anyway I hope I have made my point without upsetting anyone who might hold these views dear to them. I am all for exploring complimentary approaches whilst having treatment (if no likely contraindications with conventional drugs, such as reiki which I really do recommend during the chemo stint of the treatment - again helped me but may not help others!) and particularly post treatment to help heal your body after the trauma and shock it's been through. Looking at your diet, nutrition, alcohol intake, levels of exercise and psychological support I am up for 101% (don't always abide by it, but try to and actually get it!) However when you've got some big decisions to make about the best way to get better you need to know that the decisions you are making are the best ones possible for you. If you believe in what the person is telling you and it makes sense to you that is great. Go for it. But when imparting this knowledge all I ask is please think of the recipient. 

We all know the arguments about the big pharmaceutical companies and their hold over us in this and many areas of medical treatment. However until I can see a big enough meaningful controlled sample of those undergoing these specific alternative treatments I think I, personally, will stick to the tried and tested evidence based treatments out there. They have worked for me and millions upon millions of people out there like me. They've enabled us to live long (or at least longer) healthy lives with our friends and families. Yes there is no doubt that we are scarred, battered and bruised - physically and emotionally - by the seemingly barbaric treatment we have had to go through, but we are still here. 

However if this cancer thing decides to rear it's ugly head again I may well be the first person heading to Starbucks for a caramel macchiato to go!

Thursday, 6 March 2014

Groundhog Day

I knew from fairly early on in my diagnosis that I wouldn't tell my mother that I had breast cancer, a decision that was agreed with by my nearest and dearest. My mother has vascular dementia and, as you will have gathered if you've read my profile on my blog, lives with us. With her inability to grasp what day it is, where she is, what she's doing today or indeed who any of us are from one minute, hour or day to the next it felt like a redundant and pointless exercise. 

At first I thought it would be cruel and upsetting for her to comprehend that her youngest child had an illness that could be fatal and by telling her and then her getting upset and then forgetting and then having to tell her again would just be fruitless and lead to a day to day emotional roller coaster. I felt it would be like Groundhog Day for me having to relive the scene over and over again like Bill Murray. 

I thought it would become increasingly difficult to hide it from her as my health deteriorated and my hairloss became more apparent. My mother had also been a state registered nurse so had, in her day, the medical knowledge to understand the enormity of the disease. She was also of the opinion, very strangely for a medical person, that once you started messing with certain things it would lead to the speeding up of the inevitable. I'm not sure where that logic came from considering I assumed the job of the medical profession was to ultimately aim to make you better and to do that you might have to go through some horrible, but unavoidable procedures especially if you wanted to live. But maybe her years of experience working on wards and at the midpoint of her career in geriatric care had shown her otherwise. Still that point of view resonated and kept coming back to me. Another reason for not wanting to share this news. 

For me however it was the saddest thing in the world. Although I put a brave face on it so as not to upset others, everyday of my illness was tinged with real sadness that the one person I wanted to share this with who over the years had looked after me unconditionally and without question, who had mopped my brow, held my hand and soothed me with comforting words and just been there to make it all feel better could no longer do that for me. She would have always been the first person I would go to in times of need. All I wanted to do was tell her what was happening and for her to hold me, stroke my hair and tell me that it would all get better like she use to. 

But that was a long long time ago and I am now that person to her. It is the way things are and of course I understand and accept it, but now that time has passed and my health is better (and my hair is growing back!) it is time to recognise the sadness, deal with it and move on. I need to remind myself I did it for her. She was one of the main reasons for me to fight and get through this because protecting her is now my job and what I do for her. 

So when I first said it was to avoid Groundhog Day it was really to preserve it. So everyday would continue to be like the last and that we could hold onto this time forever with my mother's dementia not progressing and all her memories of us fading and I, in turn, holding onto my life before cancer and not getting closer to the inevitable - whatever my 'inevitable' might be.

Tuesday, 18 February 2014

Hair Today Gone Tomorrow

My D day is looming and I have one last thing to do before I step onto the treatment treadmill which will, I have no doubt, change my life forever. That last thing is to go get a wig. It's not that this is an enshrined pre-requisite to having chemotherapy. From my own research and talking to people I know that many don't do the wig thing for a whole host of reasons and opt for a headscarf or hat or even go au naturel,  but I want to be ready for all eventualities. I also secretly harbour a desire to be incognito and to have a wig that is so unlike my natural hair that no one will recognise me and therefore throughout this gap year I can ostensibly be undercover. I know, I know. Most people would be angsting and agonising about the hairloss, but I see it as an opportunity to be someone else. I think Freud would have a field day with my fucked up psyche. But it's much simpler than that. I am a bit of a show off and a frustrated wannabe thespian so this allows me a chance to sink into a fantasy world where I could be anyone or go anywhere else other than here having to face my own immortality. I also quite like the idea of going blonde!

For this task I need to chose my shopping companion wisely as I cannot be trusted to do this momentous task on my own. I have very little sense of style (or indeed any style) and am sure in my panic I will buy something that resembles a merkin or leaves me looking either like Paul Daniels or at the other extreme Bet Lynch.

Anyway as my last post shows I am truly blessed with the most amazing friends all with their own wonderful qualities and strengths. I therefore need someone from amongst this group who will be brutally honest, is stylish and won't let me leave the shop looking like a very very poor excuse for a drag queen or a reject from a reality show with really bad hair extensions or WAG aspirations. I need a fashionista straight talker who won't bullshit me and there is only one person who keeps popping into my head. The lovely Anne-Marie whose sense of style is unique and always looks fabulous, and whose Liverpudlian 'no-nonsense-or-won't-suffer-fools-gladly' roots ensures that this will definitely
be a 'no bullshit zone'!

My only experience of buying wigs is at novelty or joke shops for parties or Halloween so therefore don't think it makes me a very good judge of what would be right. I have been very good at masquerading as Morticia Adams, Cher (circa Sonny and Cher) or Ronald McDonald, but I have no experience of buying wigs for aesthetic purposes and had no idea that a shop in Hove called Trendco, that has been supplying women with wigs for years, even existed. However it does and I make an appointment.

We arrive at a very unassuming building which looks more like an office block than a wig shop. Though I have no idea why I say that as I don't know what I imagine a wig shop to look like. Maybe like a hairdressers or a beauty salon. However I think it's initial unassuming appearance is such as not to make women feel self conscious about having to go to a place like this. It's always said that a woman's hair is her crowning glory so to be in a position whereby you are having to face up to losing it, admit you are already losing it or you've lost altogether must be such a difficult situation to find yourself in and to have to face. So in order to make these women feel less distressed they make it less obtrusive and obvious to others. Not a good analogy but it reminds me of how sex shops use to market themselves with no advertising and maybe just signage above the door informing that it was an "Adult" or "Private" shop with a clientele of very sad looking middle aged men in macs trying to get in and out of the shop without being seen clutching a brown paper bag filled with their illicit goods with descriptive, but not very imaginative titles such as "Big Jug Lovers". It feels quite quaint remembering the secretiveness of these shops in our out there world of social media, twerking and Snapchat and the like, where it's participants are keen to share the most intimate of details and images in a heartbeat. The shops now have names like Taboo, Sh! and Harmony... And nothing is hidden. It's all out there for everyone to see with nothing left to the imagination.

Maybe this revolution will one day extend to women's hairloss. But not today. Today hairloss and wigs are safely tucked behind a blank veneer allowing the company to provide a discreet and, I have to say, very professional and empathic service to its customers - helping them to face the changes ahead in relation to their personal appearance in a sensitive and supportive way. 

I have tried to approach this in a different way. One where I see hair as not important especially as I don't believe that the hair I already have is such a great crowning glory as to be mourned. I fear less about my hair falling out, more about being so ill and weak wracked with fatigue that I am incapable of doing things for myself or at least severely compromised in trying to. So I think my attitude is about approaching this purchase as a bit of fun. I may never ever take it out the box, but I'm going to enjoy the process of selecting it. I have also definitely chosen the right person to do this with as we certainly have a laugh at the ridiculous looks that emerge in the next hour. 

We are greeted by a woman with glorious hair. I so want to ask if it's all her's, but think better of it. She is very attentive and extremely helpful and knowledgable. She really knows her wigs. My initial thoughts are that I am not going to be hiding my hairloss so I am not trying to replicate my own hair (not that I would want to and pay for it!). If I was going for a long hair look I'd want bounce and body. I'm thinking Farrah Fawcett-Majors (or actually any Charlie's Angels a la 1970s or the 2000s version would suffice). However I am thinking this is a good opportunity to go short and gamine. However what no-one points out, which is the elephant in the room, is indeed the elephant in the room - me! Pixie haircuts and short sassy crops look great on slim, elfin girls and young women, even well groomed and maintained older women. But on someone carrying a bit more flesh than is probably necessary it doesn't have the same effect whatsoever. Every shorter cut wig just looks fucking hideous. I at least had hoped I would look like Halle Berry's older and slightly fatter sister. But the image looking back at me couldn't be further from that imagined truth. 

I just look and feel like a menopausal (though well coiffured) middle aged woman desperately trying to look younger. At worst I feel fat, dumpy and a little bit butch - a cross between Big Mo from Eastenders and Wee Jimmy Krankie. I am feeling anything but "fan-fucking-dabi-dozi"!

We all decide that maybe short isn't the way to go and we start to look at longer versions. Bizarrely and contrary to what I thought I appear to look better with hair that a WAG would fight me for. Lots of bouncy curls and incredibly girly, though somewhat on the fake side. However there was me thinking I would look like mutton dressed as lamb, but I'm looking like a smokin' rack of BBQ lamb. Not sure that's a good analogue but you get the drift. I looked pretty hot. However again these styles fall into the category of look low maintenance, but require high maintenance input which I knew I could not sustain and after a few wears the look would very quickly descend into a look more like that of Neil in The Young Ones or Lemmy. I needed length, but practical (as the bishop said to the actress...) God how boring, but true. It needed to be that low maintenance looking to low maintenance input ratio. However we are running out of options at the lower cost range. Anne Marie picks up on my sense of disillusionment. She spies a blonde wig which looks fun, just the right length and not as tousled and teased as the others I have tried. She urges me to try it on. We had joked about me trying on a blonde one and as I am here it would seem churlish not to. I put it on and the image staring back at me looks amazing. It's the right length and looks really natural. It has a nice bounce to it and is a bit sexy too without being too overt. I wouldn't feel self conscious or fake in it. It's does feel slightly retro circa 1950s but with a less styled look. However I think it's because it's blonde. I feel a little like an extra from Mad Men. 

As much as I want to be reckless and approach this wig purchasing with a two fingers up who-gives-a-fuck swagger I know that I may have to wear this wig often and as much as the fun of seeing people's reaction to my new found blondness I fear the novelty would wear thin very quickly. I need longevity so I enquire whether this style comes in another colour resembling my own. It does. It's the right price too and with the £60 deduction on the NHS for medical purposes it's a steal. With my wig called Carrie (very Sex and the City-esque) in its box in its plain carrier bag I leave this unassuming building ready to face the world and more importantly feeling better equipped to face the one side effect I know I will definitely experience. Chemo do you worse. I've got a 'Carrie' in a box which I'm not afraid to use along with a plethora of crazily coloured headscarfs that would give Camilla Batmanghelidjh a run for her money. Hair loss - I laugh in your face. Bring it on...