Tuesday, 8 October 2013

Working 9 to 5 NOT my way to make a living

9 to 5 The Movie
 As I am inducted into my 'new job' it is time to say goodbye to my old job. It's a hard one for me. As much as my love affair with my work was starting to wane even before my diagnosis, I had been so seeped into my world of offender management that I couldn't imagine a working life anywhere else or doing anything else. Even though ironically I knew it really wasn't good for my health mentally or otherwise I struggled with making the decision to leave. However money was now on the table in the form of voluntary redundancy and as I had been there for a considerable time it was certainly worth taking. So as you will know if you have followed me on my rocky road with cancer I had already decided to take the money and run before I knew that I wasn't actually going to be doing much on the running front in the foreseeable future.

However the decision had made me feel empowered and excited. Even though I had no idea what I would do, I knew that whatever I ended up doing could only make me feel better. It felt absurd to think this considering how much I had invested into this path both emotionally and financially with a degree and a masters in criminal justice policy, but it had run its course. Since my son had been born my life had changed unrecognisably and these changes impacted daily on my life. As much as I was committed to my work and my contribution to reducing reoffending I knew that the drive and desire to make a change and be recognised for that was beginning to diminish. This had been accelerated by the way I was treated on my return from maternity leave (as is the case for many women). If anything I worked harder to prove I could be a super worker, super mother, super partner, super daughter - just an all round goddamn super woman. However even though I was being recognised for my contributions it ultimately wasn't enough. A new coalition government had come into being and in civil service speak 'the direction of travel' had well and truly changed. All the rehabilitative achievements that had been made could be legitimately stymied under the auspices of austerity. So the proverbial throwing 'the baby out with the bath water' began. We were about to embark upon a 'rehabilitation revolution' with the concept of 'payment by results' replacing upfront investment which meant that all the amazing work that had been undertaken by small but dedicated providers would be lost and steamrollered over by larger organisations (seemingly regardless of any level of expertise in the subject) who could afford to do this and tender for bigger more far-reaching projects. I couldn't reconcile myself with this approach and though I struggled on for a few more years I ultimately knew it was only a matter of time. 

So I make my decision and I am successful. Not sure there was any fight to talk me out of my decision. I was part of the old guard with my hippy dippy lefty ideas of rehabilitation whose approach did not chime with new type of agile flexible civil servant that central government were keen to cultivate. I was too stuck in my ways, too wedded to my area of specialism (even though that's what attracted them to me in the first place). I needed to be happy to work not only on offender management, but be able to apply the same said skills to any other policy area from dangerous dogs to noise abatement. No that's not why I joined this outfit in the first instance. It was to work with offenders only. I just wasn't a 'civil' enough civil servant, but I guessed that was no bad thing in the end. 

But things have now changed. That confident and empowered person is now facing an even bigger challenge than not having a job. The challenge now is to stay alive and everything about the job with all its trials and tribulations pale into insignificance. I no longer care if there is a system of 'payment by results' or 'payment in magic beans'. I no longer feel the need to forge another path away from the 'rehabilitation revolution'. Frankly I couldn't give a shit if the 'rehabilitation revolution' was more of a WI tea party than a Boston tea party. Nothing matters against the backdrop of cancer. I just needed to free up all the space that was cluttered up with this irrelevant crap. I needed to use that space to concentrate my mind on the road ahead. Basically I didn't want to die. I wasn't ready to die (if you ever really are ready for death). There was too many many things I wanted to do, to experience and to live for - my family being the most important. Therefore things had to give in order for me to beat the cancer and the job was the easiest one to go. As an old boss loved to say in his irritating 'I'm one of you' tones he loved to put on when everyone else thought him nothing like us and basically a complete tosser - "It's a no-brainer!"  God I still shudder when I hear that phrase all these years on.

So it has been agreed that I can't leave sooner than the agreed leave date of March 31st. However my two line managers (yes I said 2 - I will leave you to decide whether it's because I generate so much work that I need 2 or I am so unmanageable that 1 isn't enough!) have both agreed that I can 'work' from home which really means if I want to I can, but no-one expects too much. So for all my moaning about work in the end things came good. I was effectively being paid throughout my chemotherapy which in itself was a huge relief. I still wonder how people get through this without having any financial safety net. I also, now out the other side of treatment, wonder how people keep working through it. But that's a subject for another post. So I am grateful to my ex-employers for making this easier for me and providing me with the space and time with no pressure to get through it. 

I arrive outside my offices near Victoria. I haven't been back into this building since the day before my appointment for my test results. It feels so strange. I left this building just under a month ago hoping against all odds that I would have been breezing back in the next day with good news and that it had all be a lot of fuss about nothing. But that wasn't the case and now I had to go in and face all those people who albeit had been kind and well wishing in their messages to me would still see me through a different lens. I would now be the one they pitied, thanked god they weren't or indeed were unable to make eye contact or pretend everything was ok and not talk about it. I didn't want to be that person. I didn't need nor want their or anyone else's pity. I just wanted to be acknowledged and then left alone to get on with clearing my desk and leaving this old world behind. I'm really not trying to appear unkind or ungrateful. I remember how awkward I felt when two of my dear friends (and work colleagues) came back to work after their respective bouts with cancer (sorry not a great term) about what to say or how to treat a person. There are no rules and even if there where you'd bound to get it wrong because we are all individuals who deal with things in different ways. Cancer makes that no different. If anything, like the disease itself, no two cancers are ever the same. Even if they have the same name they can respond differently to treatment. This is no different. I feel a bit sorry for my colleagues because in a way it's so much easier for me being the one with cancer than it is for them having to respond to it (again a subject for another post). In a way the recently diagnosed cancer 'patient' (sorry another crap term) is being a bit hard to please or at least I was. I didn't want pity or over the top sympathy, but I also didn't want it not to be acknowledged and be the 'elephant in the room' that everyone skirts around, but nobody mentions. So my colleagues were effectively doomed if they did or doomed if they didn't. Still I never confessed there being any logic to it. I have never been a logical person and a bit of cancer certainly wasn't going to change that!

The ride in the lift to the fourth floor on that day was one of the most sad and anxiety-ridden journeys I have had to take because I knew that this was it. Goodbye to the old familiar comfortable yet infuriarating life to a new uncertain, terrifying and unknown life. This wasn't how it was meant to end. I was meant to be going out in a blaze of glory, wisecracking my way to the pub to my leaving-do with an envious entourage in tow wishing they had the balls to have done this too. It was, however, clearly not going to be this way (not sure it would have been the other way either, but do I get blogging license, you know like poetic licence?). The reality is that I am scuttling in and out and trying to be as wallpaper-like as I can possibly be which me being me is quite frankly ridiculous and nigh on impossible. Still that is my aim. In and out in a pincer-like fashion. Very SAS. So low key that I would hardly be noticed and people would question if I had even been there. Well that's the approach I am taking in my deluded mind.

So I swipe my card to get in, but of course I haven't been here for awhile so some security thing has kicked in. Someone I vaguely know let's me in and as I am holding my pass it gets stuck in the door as it closes pulling me backwards. I am going one way but the rest of me is being pulled back to door. In trying to untangle myself I drop my handbag and all the contents spill onto the floor. Somebody comes through the door and my pass springs free sending me hurtling forwards. I then scramble around gathering up the contents of my bag. I can't quite believe how un-SAS this has turned out and I have yet to say good morning to anyone! I hurriedly pick up snotty tissues, multi-coloured tampons packets in various sizes (a girl needs to be prepared for any emergency - sorry probably too much information) along with a lot of other useless debris that makes up the contents of my bag. I get to my feet and try not to make eye contact with anyone. Thankfully I don't work with these people on this side of the office. Thank god I choose the other door to come in and make my village idiot entrance. 

As I walk into the office and spy my colleagues I know that it is going to be alright. The queen of melodrama that I am has built this into something more than it every would have been. I seem to forget that I work in an organisation where banter and ridicule is the order of the day and just because I go and get  cancer isn't going to change that. Within an hour it feels like I haven't been away and the wisecracks mixed with the genuine empathy of my colleagues make the next two days so much more easier than I could have imagined. I think what I needed to remember is though the world is changing ever so quickly for me its not the case for everyone else. And that's the way that I want it to stay. I never want any of them to feel the way I did now and facing what I had to face. 

Don't get me wrong there were some difficult and uncomfortable encounters, but those were with people who I don't really know, but again are trying to be helpful and in their embarrassment feel the need to say something however inappropriate or ridiculous it may sound. I know because I have done it myself and am sure will continue to do it in the future. The difficulty is having to manage other people's emotions and responses to this news (again a subject for another post as just too complex to discuss here) especially when for the person experiencing it you have managed all the negative and difficult emotions over and over again whilst breaking the news to different people at different times that in the end you are completely drained and become quite numb and unemotional to it. Cancer becomes just a word.

So I did it. I got through the two days pretty unscathed. I had a quieter send off than I had hoped but that was okay. It was with people who really wanted to be with me and me with them. I said my goodbyes and was back into the unknown world ahead of me. The comfort of the world of 9 to 5 was now behind me and for all the years I was desperate to leave I am now feeling even more alone and lost than ever. I don't have the comfort of knowing what's ahead and standing at Victoria station waiting for my train I am nostalgic for my previous life, the life before cancer with its 9 to 5 routine. But in the words of Dolly Parton, "what a way to make a living" and maybe in time I would see that cancer saved me from that way of making a living. But right now I shed some tears, as quietly and as unassumingly as I can on a packed train, to my lost life, career disappointments and unmet ambitions and scurry as quickly as I can back to my new comfort zone - home. 

Monday, 7 October 2013

Try before you buy

So after the embarrassing trauma of having to locate and swab my perineum I return very sheepishly to my induction - all eyes upon me. A nurse with the longest and thickest dreadlocks I have ever seen in the medical profession (actually I believe the only dreadlocks I have ever seen in the medical profession) begins our induction. She introduces herself and gives a five minute potted talk on what we can expect from the chemotherapy process. She concludes her chat with stressing to us all the importance of being able to identify neutropenic sepsis which can occur during chemotherapy as the patient's immunity system is weakened. However she can't stress enough that we must be aware of any changes that could be the first sign of neutropenic sepsis as left untreated it could be fatal.

She then talks us through some of the side effects of treatment - nausea, mouth sores, flu like symptoms, tiredness, fatigue, constipation... And the list goes on and on. She's not only really not selling this to me she's also confusing me somewhat. Not that that's unusual or a difficult thing to do to me at the best of times but I am now fixated on knowing if I have netropenic sepsis. I thought I got it (well not actually got it as that would have been very misfortunate as I hadn't even ystarted!) but understood what signs I was looking for. However the more she talked the more symptoms and side effects started to merge together and I found my anxiety levels rising and my ability to maintain calm slowly ebbing away. 

She then left us to watch a DVD about neutropenic sepsis. I was optimistic that it would enlighten me somewhat and help dissipate the anxiety but my optimism was quite quickly dashed. After five minutes I wanted to scream at the screen, "How the fuck do I distinguish side-effects from chemo from this fucking potentially fatal thing you keep banging on about. Can someone please put me out of my misery???!!!" I hang back from vocalising because nobody else seems that perturbed. They stare ahead looking blankly at the TV screen seeming to hardly blink. Just absorbing it all in like sponges. And yet I can't. My desire to know more - to get this right (whatever I imagine 'right' to be in such circumstances) is overwhelming and yet I can't even discern a flicker of concern from my fellow inductees. They just take it all in without question. I suddenly feel like I am in a herd or probably more appropriately a flock as all I can think about is the phrase 'lambs to slaughter' - a phrase that keeps springing to mind time and time again throughout treatment.

However I now know it's not because they didn't care or possess the same anxieties as me. Far from it. I am sure they all cared and were as anxious as me, but another lesson I have learned from the world of cancer is how we all deal with things differently and react differently. I am sure they were just as scared deep down but felt, as I did, this overwhelming sense of inevitability. Also unlike me all of them were going straight into their first chemotherapy session after this induction. I, on the other hand, was undergoing what I have come to refer to as my 'Try before you buy' session. I had a week before I was starting proper, but these guys were having to process all this information then dive in head first into the unknown - real hardcore. So really what was the point of stressing. It's not like we were being offered any alternatives. It was this or...well not this. I don't want to be an alarmist and appear overly dramatic and say death, but I suppose that was the only other alternative so the likelihood of a bit of neutropenic sepsis or the inevitable shitty side effects must seem like a small price to pay for being given the opportunity to live! I sometimes think I should have started then too. Maybe I would have forged strong friendships with these people. I often wondered what happen to the only male amongst the group who had throat cancer. He was so upbeat and just wanting to get started so things could go back to normal. His treatment regime sounded so harsh. Mornings of chemo and afternoons of radiotherapy every day for an intensive period of time. At that time I couldn't really take the enormity of it all in, but it seemed a lot for one person over a one day period. Nearly two years on I am fully aware of what it must have involved and hope that it was successful and positive and that indeed life has gone back to as normal as it can after everything this disease throws at you. 

Being none the wiser as to how I would distinguish between whether it was side effects or neutropenic sepsis and getting withering looks for the nurse with my constant inane questions I felt it was time to go. She had given us all a DVD to take home and watch at our leisure. I started giggling at the thought of watching this whilst listening to the CD of my diagnosis - god the NHS know how to cheer a person up! I believe the DVD is tucked away with that CD gathering dust somewhere never to be re-visited I hope. 

I stand up to leave and say goodbye, wishing everyone good luck. For the first time my fellow inductees are looking animated. One of them asks me where I am going and I say that I wasn't that impressed with my 'try before you buy' session so have decided not to go through with it. I see a look of astonishment and puzzlement on a number of faces. I quickly remember that as much as I may think it amusing these people are not here to be amused with my flippant nonsense, but about to embark upon a life changing experience. I quickly backtrack and explain that they were just fitting me in, but my treatment is scheduled to start next week. There is an audible collective sigh of relief though the man with throat cancer says to me, "I was just thinking good on you, what a brave girl..." 

As I leave I think about that word. Brave. They're the brave ones going straight into this. I have a week to process what I've been told and mentally prepare myself whereas they are putting their hands into warm water trying to make the veins rise to the surface to make it easier to insert a cannula. They are the one being pumped by syringe or intravenously over a period of hours with drugs that will feel like nothing else in this world and even though I don't know all this right now in the weeks and months to come I think how wonderfully brave they were like foot soldiers going over the trenches into the First World War into the unknown, but determined to do it. 

I however am not feeling that brave today. That will be me next week and I will try to be the bestest bravest soldier ever, but right now I am going to be a little more cautious and a bit less brave and spend the next week preparing myself and contemplating what's ahead of me. 

My friend snaps me out of my revery. "Do you think you could extend this try before you buy to the pub? We can see if we can get a few glasses of wine on the house. What do you think?", says my friend. Unlike the last hour I have no problem understanding this and the only anxiety I have is how far away the nearest pub is. 

No further persuasion is needed as we head to the pub to try our luck.