Sunday, 22 December 2013

We want to be together...

I'm not sure if any of you reading this will have had the pleasure of visiting the Brighton Marina, but for me it has never quite lived up to its promise. Being a Brightonian born and bred I remember when it wasn't there and all the excitement about it when it was being built and then the disappointment that it was not all it was hyped up to be. Over the years it has tried to reinvent itself with businesses coming and going and where it seemed to be at one point outlet city it's now transformed itself into restaurant-chain heaven with the added benefit of free parking and the myriad possibilities of finding 2 for 1 offers and using your Groupon and Wowcher deal. It's moved on from just offering Harvester pub food and the opportunity to purchase a yacht or cruiser as one does after lunch. It now boasts a superstore, bowling alley and multi-plex cinema. It's a veritable world of opportunities if indeed you like those sort of opportunities. But even if you love those opportunities they are rarely to be open and available to you at stupid o'clock in the morning!

So we aimlessly wander around trying to find somewhere to get a decent cup of coffee. What we end up with is a lukewarm cup of cheap and nasty tea and some dry inedible piece of toast (yes I too wonder how a simple 'dish' of toast could be made to be inedible but trust me it was!) and we need to make it last for nearly two hours. Not sure how we do it, but we are old masters at the art of conversation and time rushes by and we are soon making our way back to the spa. 

This time we are greeted like old friends and in fairness to them there is no hint of animosity towards the mad harridan who so spectacularly lost the plot earlier. The are professionalism personified. We are ushered to a waiting area to complete the personal information questionnaire. We are given an array of oils to smell in order to choose which one we would prefer as the base oil for the massage. We are then asked what sort of massage pressure we'd like. I am really warming up to this lovely place and the awful start to this day spa adventure has completely disappeared into the ether of time. We are both mulling over how forthcoming we want to be about our respective health problems as we don't want any other obstacles to get in our way of the elusive massage. I don't think they picked up on the cancer rant I had so we both decide that less is more. Our questionnaires are taken and a moment later the manager returns asking which one of us is pregnant. We both look at each other bemused by this revelation - each one waiting for the other to come clean. My friend mockingly asks is there something I want to tell her and I look overly horrified as if I have been caught out. I laugh it off in what feels like a completely over the top unconvincing way. It is quickly established that I have ticked the wrong box and in what feels incredibly lame we try a few attempts to laugh it off with cracks about chance being a fine thing, that it would be more like the immaculate conception and "letting the cat out of the bag", but our hosts are giggling and looking bemused by our strange double act. The wierd awkwardness is thankfully interjected by the manager telling us that the masseurs are ready for us and we are ushered down the sumptuous hallway to our respective massage havens. 

Well that's what I am thinking is about to happen, but it appears the spa has other thoughts for us. We are both ushered into a large beautifully and tastefully decorated room with lilting music and wonderful herbal aromas. I expect this is the anteroom and we will be taken to our respective rooms. But no that doesn't appear to be the case at all. I think my prostrations about needing to "be together" have been taken quite literally and we are indeed going to experience our massages side by side and most definitely together in what I can only imagine is their 'couples' room as there is no hint of us being separated. I ask one of the masseurs if we are going to another room after this and they look at each other and smile and shake their heads in unison. We are told that we can undress and get under the towels on our respective massage beds. For modesty purposes we are both given a pair of highly attractive paper pants. They leave the room giggling between themselves. 

"Oh my god honey." I say with my hands in my head. "I am so so sorry. All my bloody going on about wanting to be together they've taken it literally. I think they think we're a couple!" We both start to laugh. "Are you okay with us being in the same room?" I think my friend is so concerned that this massage is never going to happen that she's beyond caring just as long as it does actually happen. We've both been up for hours by this point and endured the very un-heady delights of the Marina so we're going to have this massage in whatever way they want to give it to us. We undress and put on our crispy crunchy paper pants.

Our masseurs return and begin our respective massages. My masseur is the older of the two and the firm technique I have requested is most certainly delivered. I think it is probably the best massage I have ever experienced and all the morning's angst has completely disappeared within five minutes of this amazing experience. It begins with an exfoliating massage which at first feels strange as it feels like an all over body oatmeal face mask with lots of grainy bits being rubbed and pummelled into my skin but god is it good. And so thorough...well actually a bit more thorough than I or my friend expected as at the same time we both let out a high pitched squeal as (in my case though I later find out in my friend's case too) the massage and exfoliating process extends to quite a concentrated breast massage! Now as this is my first experience of a Thai massage you seasoned massage-lovers or travellers may tell me this is par for the course, but as a Thai massage virgin it wasn't what I was expecting and considering I have become overly conscious of touching the lump I am not ready for this and keep squirming every time her fingers trace over the area. What seems like ages but is probably no more than a couple of minutes the breast massage ends. I am wondering if everyone gets this treatment or is just for 'couples'. Of course my imagination is now into overdrive and I am wondering if my friend has just been given the same treatment. 

The masseurs explain that we can now shower in the adjoining shower room to wash off the exfoliating debris. I suggest my friend goes first and as she goes towards the shower one of the masseurs says, "You can go into together if you want." I don't have my glasses on so I can't make out any facial expressions, but I am sure I can hear them giggling as I say, "No that's fine thank you." They leave the room chatting and laughing and I in my paranoid state think it's about us. My friend comes out of the shower and mumbles something about the paper pants, but I don't quite hear it as am still mortified that we could be the source of such amusement. 

The water is just the right temperature and pressure and my skins feels soft and supple. I am feeling quite glowing, radiant and even a bit goddess-like when I look down and see my plastic pants are filling up with water and my already not so small bottom looks positively gargantuan like those terrible 19th century pictures of Hottentot women with their extended buttocks!!!

Oh god I need to get out of here to save my poor friend from this terrible sight that I am sure she can't help but make out through the frosted glass door. You certainly couldn't miss it that's for sure...

By the look on my face she can see that I am as disturbed as she was about the water filling pants and she gingerly asks whether the massage went places that I wasn't expecting and I say that it did and I was nervous that this might happen again, but we both agreed it would just add to the opinion they already had of us as being completely odd if we said anything. We both agreed that it was all probably very innocent and innocuous and it was just my mad 'togetherness' comments that made it feel wierd and that it was most probably the most normal thing in the world when having a Thai massage. 

The masseurs return and begin the second part of the massage. I am transported into massage heaven and am relaxed again and completely in the moment. There is no more 'breast action' and the only unusual thing is when my masseur jumps on the table to really get pummelling, but it is all so fantastic that I don't care where or how she does it just as long as she keeps doing it. 

The massage is all over too quickly and we are soon back into the hustle and bustle of Brighton and quaffing glasses of wine over a gorgeous tapas lunch with all our detoxing clearly behind us as we attempt to increase our toxicity levels. We laugh at what's just occurred and the confusion around us being a couple. However we conclude that maybe we have got it wrong and just because we were close to Brighton's gay community (or is the trendier term 'quarter' as Brighton very unmathematically seems to have a lot of quarters these days!)  Kemp Town or as us locals have affectionately called it for years Camp Town. Whatever it is it's made for a funny story and something to keep me chuckling in the grim days ahead. I wanted to create memories for what could be the dark times to come and I'd certainly done that. 

We part company radiant and glowing now from too much afternoon drinking and as I make my way back home I see a text from the Spa thanking us for our custom and giving us an early bird Valentine special for loving couples. Obviously we did a good show of togetherness even though I'd hidden my pregnancy from my lover and we were too shy to get into the shower together to scrub each other down dressed only in our bellowing watery pants. However for a massage like that well sometimes a girl's gotta do what a girl's gotta do...

Wednesday, 27 November 2013

Don't you know who I am? (answers on a postcard please!)

So I've left my job with all its trials and tribulations to face one of the most challenging chapters of my life. However I still have a few days left to do some nice things before I begin chemotherapy. It really feels like life is about to change unrecognisably for me and I want to have nice memories I can quickly access when I'm not feeling so great whilst in the thick of it all.

I have some spa vouchers given to me by my colleagues at work when I moved from one civil service department to another and had never gotten round to using. My partner's father had also given me some money to ' something nice'. I thought if I added these together it would enable me to take someone with me to share the 'nice' experience I was determined to have. So I ask one of my lovely friends who very quickly takes up the offer and now I find myself looking for a spa that will take the vouchers. We are limited but eventually I find one that is in the Brighton Marina. Bit of an arse end of nowhere to get to on public transport, but if we sort out the timing well enough we can be in and out then off to enjoy a lovely leisurely lunch afterwards back in the bosom of the city centre with a few glasses of wine thrown in to get us all 'toxined' up again. 

I book us in for a Thai massage which works with the amount of money that I have and sounds quite lovely and hands-on according to the 'menu' on the website. None of that light sweeping touch effleurage stuff for me. I want to be pummelled and prodded and chopped. Basically 'man-handled' in a nice 'massagey' way. I am asked whether for an extra £20 each we would like to use the hydra therapy pool beforehand. It again sounds delightful and I sign us up to the whole works. I then get a phone call from a friend and before the conversation ends I tell her my plans which she thinks are great. However she is just concerned about the hydrotherapy pool and is worried that I might be opening up myself to potential infection threats prior to starting such aggressive treatment. At first I think she is being overly cautious. But although I am crapping myself about starting this treatment and so wish I wasn't I have already worked out the treatment plan and how long it's going to take and I don't want anything to delay the end date. I call the spa back and cancel the hydrotherapy pool. 

So the day arrives and we find ourselves off to the spa. I'm not quite sure what to expect as although the photos on the website looked gorgeous we all know that's no guarantee. However on this occasion it really was an amazing oasis of calm. Just what we both needed. Subtle atmospheric lightning, wonderfully evocative smells and fantastic sumptuous decor. I give our names to the receptionist. She looks confused and says there is no booking. She goes through her bookings sheet but our names do not appear. My feelings of calm and tranquility are starting to seep away and are quickly becoming replaced with anxiety and hysteria. I find my voice becoming high pitched and emotional. I haven't come to this beautiful oasis on two types of public transport to the pain-in-the-arse-to-get-to Marina. My 'Violet Beauregarde' of Charlie and the Chocolate Factory fame is riding to the surface. But it's not an ompah-lumpah I want and want NOW. It's my massage. I WANT IT AND I WANT IT NOW!!! I am short of saying to them the most ridiculous thing ever which is 'do you know how I am?' because quite clearly there is really no reason why on this earth they should know me. I don't even know who I am these days so why should I expect anyone else to know. Maybe subconsciously I'm looking for the answer, but trust me I wasn't being that philosophical and existentialist that day. I was just being a grumpy, hormonal mardy mare. Anyway it is quite clear from their booking sheet they haven't a fucking clue who I am!

I have decided that I will not be treated like this and in a hysterical torrent tell them that in no uncertain terms. Much of what I say is lost to them as English is not their first language, but they regardless of this are trying to placate me, but I am so caught up in my own melodrama that I start to descend into those murky depths that I vowed that I would never descend to - using my cancer for sympathy. I know not pretty or clever and am not proud, but all I could see was my imagined tranquil pre-treatment  odyssey turning into a nightmare which in turn (in my illogical reasoning) did not bode well for the treatment ahead. If booking a simple massage was beyond me how the fuck would I cope with nine months of intensive treatment for which I needed to keep on top of in order to get through it. 

Thankfully I choose to do this massage experience with a wonderful friend who admirably becomes the voice of reason possessing the skills of a expert negotiator navigating her way between two waring nations to establish foundations for peace talks in order to resolve this crisis. Firstly they have no appointments until 11am (it's now 10.00) but they will only be able to do one of us at that time and the next one at 12.30. "What the fuck..." I hear the words coming out of my mouth like a woman possessed. She quickly continues the negotiations at a pace hoping to cut me off before I start again.  But not before I chip in that "we want to be together" or else it's prolonging our time in arse-end-of-nowhere territory. She takes this on board and tries to find a time when they can accommodate us but she getting nowhere fast. I can't bear this anymore. I know very dramatic, but all I wanted was a relaxing massage to alleviate some of this stress that's been building up over the last few weeks (sorry who am I kidding - I mean the last few months/years/decades not that one session would be enough to untie those knots that I have lovingly and painstakingly nurtured which crisscross my back and shoulders!) Still what is happening here is certainly not what I wanted or expected. I should be being pummelled, chopped and remoulded back into something quite lovely. All floppy, flexible, agile and supple. But I am not anywhere near that. I am still in this husk of a body that is aching, miserable, tense and diseased. 

As I start to speak I see the receptionist usher someone over to deal with me as quite clearly she's had enough of my hysteronics. He is the manager and he explains that it appears I cancelled the booking. I explain as calmly as I can that I didn't. All I did was cancel our hydrotherapy pool session prior to the massages. I explain that I had booked appointments so that we could have the massages simultaneously as we had plans for the rest of the day. I keep my cool even surprising myself. However when he starts to say they can do one of us now and the other in two hours time I just lose the plot. I hear my voice raising and I am sure I see out of the corner of my eye the receptionist run for cover! "What do you not understand? WE WANT TO BE TOGETHER. How much clearer can I be? And if you can't do that then let's just forget." I can see my friend is mortified by that suggestion as she really wants this massage. She cranks up the negotiating skills into overdrive and ascertains that they can "do us together" in two hours time. Eureka! We have a break through. We are ushered out with reassurances that we will be have our request for togetherness fulfilled. Now the real challenge is to find what to do to fill two hours in the arse-end-of-nowhere...

Wednesday, 13 November 2013

Off piste

If you have followed my blog then you will know that it has been a series of posts about my experiences of being diagnosed with breast cancer and treatment. I have tried to post as regularly as I can being a mum to a 5 year old, a step mum to an 11 year old, a carer to my 85 year old mother who lives with us and has dementia as well as working three days a week. As you can imagine with all of that going on the period between posts can be sporadic. I aim for at least one a month but am conscious that doesn't always happen because life has a habit of getting in the way. I am also very aware that my story is a long one as it covers a year long period where lots happened which, at times, leads me to wonder if I might be beset by old age before I ever get to the end of it!

Following some constructive feedback from a seasoned blogger friend I have decided to aim for more output in a punchier style which may see me producing more posts than I had ever envisaged, but will hopefully keep the story going at a pace and in turn keep you, dear reader, interested and wanting more (well a girl can dream...) But do note the use of the word 'aim'. It is indeed my aim and those who know me well will know that's a very tall order as I am never short of words or the desire to use them or indeed possess the ability to know when to stop using them. However for my own selfish purposes I need to deposit all the 'stuff' that has accumulated in my head over the last two years somewhere else ie into my blog, in order to, I suppose, move on and get on with embracing this period of remission and my new life ahead. 

Anyway the title of this post not only refers to this update about future output, but also about going 'off piste' about the subject matter of my blog. So with this in mind I wanted to take this opportunity to add to the debate about the lack of diversity at the recent Mumsnet BlogFest. Both and have most eloquently captured my thoughts and feelings so I won't rehash the very pithy points they both have made. 

What I wanted to do was to encourage people to read their respective posts and spread the word about collectively wanting to make a difference and effect change. There is no apportioning of blame onto the organisers of that event and similar types of events. However those of us who have recognised this and have shared these thoughts between ourselves are keen to work with these organisations to break down barriers to engaging with a more diverse community of bloggers which would be a better and truer reflection of the wider society.  I hope I am right in saying that those women of colour who have expressed a view do not see themselves as the appointed spokespeople on this debate. We just have a point of view and want to express that point of view. Others may feel differently or indeed have no opinion at all. But that's ok because as we have established women bloggers come in a variety of guises. It's just an observation as women of colour that BlogFest seemed to have attracted very few people like ourselves which was also reflected in the choice of panel members as well as the contributors to the breakout sessions. 

Anyway am in jeopardy of breaking my new 'less is more' cardinal rule so will end with just saying it would be great to firstly see if there are (and I am sure there are) more than just the handful of non-white women bloggers who went to BlogFest out there, secondly to identify the barriers to engagement, thirdly finding ways to engage them in this debate and fourthly harness their energies and considerable talents in order to, in the words of Mahatma Gandhi, "Be the change you wish to see in the world". 

Right I'm off to get back 'on piste' and will return to what I unfortunately know best about which is my (mis)adventures with cancer in my crazy three generational household. Watch this space for the new improved 'Big C in 3G ' coming soon to a computer screen near you...

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. 

Thursday, 29 August 2013

Your knee bones connected to your - thigh bone, your perineum is connected to your...???

I am now in possession of my chemotherapy treatment schedule which consists of eight sessions in total with a two week gap between them. After the stress of trying to get any dates at all this year I am now holding a piece of paper that maps out the next sixteen weeks or four months of my life. It doesn't really matter which way I chose to say it its still adds up to a quarter of the year ahead and this is just the first part of the whole treatment process. It is, however, the part I am most scared of and frightened to begin. However by having these dates I keep reminding myself that I can begin to fight this disease head on.

Before chemotherapy begins I have to have an induction. The word 'induction' always conjures up to me visions of starting a new job and you are being 'induced' into the ways of the company you are working for. The terminology feels strange and out of place, but as this all starts to take shape and become very real it's actually not that odd at all. I've left my job and actually fighting this cancer and concentrating on getting better has taken it's place and become my new job. Therefore I need to be 'induced' into the ways of this new company - the cancer centre - and all its different departments -chemotherapy, surgery, radiotherapy. Starting firstly with the chemotherapy suite where I will effectively begin my 'probation' and if I do well there will move onto the next stage. However if I am basically a bit rubbish and don't show any aptitude or initiative in this new role my 'probation' may need to be extended - something I am very keen to avoid. I have proven myself in the past to be a quick learner and adaptable to new environments so why should this be any different to my other jobs? I suppose the big difference is there is much more at stake here but I am always up for a challenge and this is going to be one hell of one. I need to be shit hot in this post because I want to move on up this particular career ladder as quickly and as well as I possibly can and show what I'm made of.

I can't start as quickly as my oncologist would like me to but I have been booked into my induction a few weeks prior to my chemotherapy starting. My lovely friend who came with me to get my results insists on coming with me to my induction. She doesn't want me to face this alone and knows me well enough to know that I will have a hundred and one questions for which I will forget all the answers they will have given me. I will need to have someone to turn to for affirmation or at least reassurance and she wants to and is the best person for this. She's my voice of reason and doesn't put up with my melodramatic bullshit or tendency for the melancholy when up against it. She says it like it is and I need that right now. 

I have asked if I could have chemo on the Tuesday of each cycle. This is because I am at home with my son on Mondays and he is at nursery on the other days. It's also far enough from the weekend so as not to impact too much upon it. This is all worked out with logic and a real sense of planning which for those of you who know me know are not my strongest traits. I am sure when I spring into your mind it's not alongside the adjectives 'logical' and 'methodical'. Yet here I am masquerading as both these things, but how quickly this is dispelled. In fairness to myself the logic wasn't flawed. It was the lack of knowledge and experience of the situation that was. It would make absolute sense to plan it in order to cause as little disruption as possible, but of course not knowing what lay ahead of me it was foolhardy to think in these terms. Anyway as always I am running ahead of myself. All will be revealed later, but at this stage, right here, right now, I am off to my induction which falls on a Tuesday as will all my subsequent treatment dates (on a bi weekly basis). 

The traffic on the way to the centre is so busy due to a number of roadworks all going on simultaneously in that annoying way they do and what should be a ten minute ride from my friend's house to the hospital has taken nearly half an hour already. My friend calls them to explain we are on our way and although they are very understanding and I gather that others have called with the same problem, my anxiety levels are still rising  We eventually arrive at the hospital to encounter another delay - one which I will soon get use to and become more ofay with as the months progress - the queue for the subsidised cancer centre car park. Spaces are like gold dust and patients and their drivers will queue patiently to be let in for this £1 parking space in the middle of Brighton where on-street parking is limited and costly and the hospital NCP parking a complete rip-off. So I experience my first car park queue. As daunting as it looks when you arrive it does actually move fairly quickly. We all know the score so we try to get in and out after treatment as quickly as possible to free up those premium spaces for the next 'customer'. Some are a bit cheeky (myself included) and maybe slip in a swift coffee or lunch after treatment, but personally for what you're going through the odd pleasures are truly well deserved and depending on how you react to treatment few and far between. 

This is the first time I have ever seen or been to the Sussex Cancer Centre. I wonder how I have never noticed it before. The signage is clear and there is nothing obstructing it but yet in all the years I have visited the hospital for appointments for myself, my mother, visiting friends or relatives I have never ever seen this building. What I really think it is that I have quite obviously seen this building before. It's on the road that leads up to A&E which I have visited infrequently over the years. My god mother and her husband lived in sheltered accommodation right opposite the entrance so I would have walked past it when I visited them yet I cannot remember ever seeing it. Suddenly it's there. Big as life and twice as daunting. There's no mystery to what goes on inside there. It's writ large over the front entrance. But I know the real reason why it's never registered. It's because it's the building nobody wants or chooses to go in. There is nothing inside those doors that would tempt me in. There isn't anything sparkly or shiny to get my attention. No buy one get one free, no half price sale or even a good old fashioned full price have to have it allure. That's why I haven't noticed it because it has had nothing to do with me. I'm not in their demographic. I am not their typical customer. There 'niche' appeal was not to my taste. Its a building you choose not to acknowledge because it means nothing personally to you. You may know people, been close to people who have had cancer. But its abstract because its still not you and anyway what's the odds it ever will happen to you. About the same as winning the lottery? Well fuck aren't I the lucky one. Actually the odds are a lot higher but until you're there you don't know that and you believe it's something that happens to other people. Well I certainly did. 

But it isn't happening to someone else. I am standing here outside of this building and its happening to me. Suddenly all I can see is this building and what it has to offer is more important, more sought after, more coveted than anything shiny and sparkly with cut price tags attached. Even though I am scared shitless I know this building stores all the goodies this girl needs to keep on going in this world and that is more important than any retail therapy could provide right now.  

It feels like the longest walk to the reception of the chemotherapy suite but once there I wish it had been longer. Not because of how bad it was when I arrived. Far from it. It was welcoming and actually peaceful and calm considering what those waiting were going through. The atmosphere was quite light and upbeat. It was better than any hospital or doctor's waiting room I had ever had to wait in. No. I just wanted to string out this bit for a while longer. To suspend the inevitable and what was to follow. To walk through the doors of the chemotherapy suite to what would be my new 'place of work' for the next four months. 

My name was called along with a number of other people - my fellow inductees. There are about six or us and we are all accompanied by someone. It's mostly women, but there is one man who I sit next to. They are also appear to be older than me. They all have different forms of cancer as we find out. The one thing we all have in common and is etched across our faces is that we are all anxious and undoubtedly scared. Even if we think we are composed we would all be really crap at poker!

While waiting to be seen I take a look around the room. It isn't what I expected at all. I imagined it to be a lot more clinical and more like a hospital ward, but it isn't. There are no beds just very comfy looking reclining chairs. The room is a light pastel kind of blue which though not my cup of tea is quite calming and relaxing and there are some interesting prints on the walls too. It's still quite early so there are only a couple of other people here bar us inductees and a couple are hooked up to IV drips. If it wasn't for those drips and trays of drugs we could be all waiting for a manicure or a pedicure as really doesn't have that clinical feel about which is a credit to those who work there. The ability to make a place that is clearly very clinical not feel so sterile and clinical is, in my eyes, phenomenal. 

 A nurse sits down with me to go through the respective paperwork asking a number of questions. She also needs me to have a number of tests to ensure that I am physically able to endure the chemotherapy such as an ECG to make sure my ticker can stand up to the strain of the treatment and another test were I have to take a swab from the inside of my mouth, my nostril and my perineum to see if I have MRSA screening test which ascertain whether I am a MRSA carrier. The first two parts are easy enough. She then gives me a test tube and she asks me to 'brush' the perineum with the swab and put it straight into the test tube. I smile and she guides me towards the toilet. I am hesitant and feeling quite stupid as I am wracking my brain to unearth some deeply buried information from old biology lessons which might shed some light onto where exactly my perineum is. If I'm being guided to somewhere private it's got to be in my privates region but where oh where is it. I haven't said a word. I am just smiling inanely as I shut the toilet door and lock it. She must have seen the confusion on my face as I close the door as she says something about the nobbly ridge between... but I don't hear the rest as she says it quite quickly and I'm not really paying attention and the bathroom door has just shut and I don't want to open it up to ask her as feel I should know where it is. Fuck why didn't I bring my phone then I could have googled it or at least phoned a friend. I can't believe that I never paid attention in school as quite clearly it's something ever body knows and why hasn't it registered in my psyche over the last 42 years of my life. Quite clearly I have had absolutely no use for it in that time. What seems like an age passes but probably is only a couple of seconds whilst I hunt for my perineum or something that looks like a perineum that I could brush a swab against. I try and try to hold onto those last words as if they are a clue to where the treasure is buried and my 'perineum' is the gold. But the only nobbly ridge thing that springs into mind is my clitoris. But it can't be. When did it change name and why didn't I know? Maybe it's its full Latin title is something like clitoris perineumus. What again seems like another age passes and there is a tap on the door and the voice of the nurse asking, "Are you alright in there?" I am mortified but can't keep up this charade any longer. I imagine everyone waiting for the induction to begin whilst I have swabbed my entire body in the hope that I've come anywhere close to my perineum. I sheepishly unlock the door and before I can even say a word the nurse says, "it's the area between your vagina and anus". I need no further guidance and as quickly as possible shut the door and do what I need to do. 

There are a few inquisitive looks from my fellow inductees as I return but I try not to make eye contact with anyone. Soon after the induction begins. I had planned to regale with what happens, but will tell you more in my next post as frankly just reliving the search for my perineum has well and truly exhausted me and undoubtedly provided you with more information than you really needed or wanted to know. And before you all get smug I'd like to know how many of you knew where the perineum is because it certainly wasn't a fact on the tip of my tongue. No you fool, I hear you shout, it's not on the tip of your tongue its between your...but I've already shut the door again. I think it's best left right where it is. Out of sight and most definitely out of mind...

Tuesday, 30 July 2013

Water, water everywhere, nor not a drop to drink...

In my last post I talked about tests - in the plural - and went into great detail about the MRI I had. However without turning my last post into War and Peace I felt I should save the story about my CT scan for another post.  

So before I begin let me reassure you that this test is a walk in the park compared to the MRI scan. For a start its shorter in duration and not so enclosed so much less claustrophobic. A computerised tomography scan or a CT scan provides detailed images of structures inside the body such as internal organs, blood vessels, bones and tumours. This provides a much clearer picture than any standard X-ray of what's going on inside the body and is normally requested prior to treatment such as radiotherapy and biopsies both of which I have ahead of me. It also, like the MRI, provides my team with more detailed information from which to tailor my treatment. Again I have no idea of this at the time, but have become a very quick learner on my 'gap' year. 

The letter requesting my attendance at the hospital, again like the MRI scan, sets out what to expect, but in this case my experiences bear out that it was bang on the money. However after the MRI anything would have seemed easier and far less scary. The only problem I could envisage on the horizon was the fact you had to drink a large quantity of water within the two hours prior to the procedure. This helps to keep you hydrated but also fills the bladder and stomach so they can show up more clearly on the scan. Since having a baby the ability to keep large quantities of liquid in my bladder is nigh on  impossible and don't even ask me to find my pelvic floor and concentrate on keeping it 'zipped' up like they tell you to do in Pilates because quite frankly I wasn't that sure where my pelvic floor was before childbirth and I have even less of an idea now. 

So the tall order is to stop myself from having a wee before the scan takes place especially when the hospital is half an hour's drive from home, traffic dependent, and the ease of finding a parking space and then getting to where the scan is to be done are ahead. Still I am hardened now to this world of tests. Anything after an MRIs is mere child's play. Drink my own body weight in water and not pee for hours is nothing compared to the radiologist's version of MRI waterboarding. 

Thankfully no traffic to hold me up and the distraction of singing along to radio 2 means I arrive at the hospital full bladder still intact. However on checking in with reception I am informed there is a delay. Patients are being sent to another site in order to reduce the waiting time. Now my full bladder has got me here without mishap or accident, but this could be very testing indeed. I am transported back to an excruciatingly embarrassing situation when as a 12 year old I was standing in a shop waiting to pay. It was pouring with rain outside and I desperately needed to wee. My mum was parked on double yellow lines waiting for me and I couldn't leave the shop without the much needed purchase (what it was I have obliterated from my mind over the years with the shame of what was to follow). The old dear in front was dithering doing that thing that Bill Bryson writes about so eloquently in Notes From A Small Island, in that she is  taken by surprise that this transaction of purchasing something would end up with money needing to be exchanged. Well we are in just such a situation and my bladder can't hold on much longer and pelvic floors mean nothing to my 12 year old mind. After what seems like an eternity she finds her purse and after shuffling through it she hands over the money. I am feeling confident that I will get out of here without any problems. But as the shop assistant begins to serve me the till roll runs out. As she fumbles about looking for a new one I can't hold on any longer and waves of embarrassment and complete mortification overcome me as I feel the wee trickling down my leg. I am trying so hard to maintain it at a trickling flow but its hard and I am rooted to the spot. I can't and mustn't let go of what I now know to be my pelvic floors, but it's so tough. All I can think is thank god it's been torrentially raining as hopefully she'll think the damp spot on the floor is because I was dripping wet when I came in and not the start of shameful wee. Once the purchase is complete I run out of that shop as fast as I can and as I run faster I can't hold back anymore.  

Well that's exactly how I feel now. I need this to happen here and now not at another place in walking distance down the road because I can tell you know it will turn into a walk of shame! As if reading my mind I am told that if I have drunk the water as instructed then they can see me here. I let them know that I have most definitely drunk the water. I am then ushered to a cubicle to get changed into a hospital gown which distracts me for a while longer. I am then directed to a small waiting room full of people all dressed in the same said gowns all holding plastic cups from which they are respectively sipping all looking quite disgusted after each mouthful and all looking decidedly grumpier than the next. 

As I walk in I smile and say hello. Pleasantries are exchanged in as normal a way as they can be when you're all desperate for a pee and the gowns you are wearing leave very little to the imagination. You become very close quite quickly and as for dignity. Well you might as well check that in at the desk after your first appointment because you won't see that again until you've finished with all of this treatment world and when you get it back again you're not that fussed one way or another. 

The talk very quickly turns to the delays in being seen. One woman says she should have been seen at 2.30 and another says she was scheduled for 2.45. Another man moans that he was booked in for 3.00 and as its nearly 3.30 he's going to have to pay another hour for parking. They all keep sipping from their respective plastic cups grimacing after each mouthful. They all continue to moan to each other when one of the group ask me when my appointment was for. I tell them my appointment is for 3.30. They all laugh saying I should be so lucky to get seen before 5. I am now starting to think that maybe the MRI wasn't so bad after all. If I am to be sat here waiting in a room full of perpetual moaners who are taking pleasure in the fact I will have to wait with a bursting bladder, I would rather be listening to Adele crooning about cracks in the pavement whilst wondering if I am displaying any unwanted sight of my very own 'crack' whilst sprawled face down on the MRI scanner. That would be preferable to another hour or so listening to this moaning. 

I am trying to zone them out like I tried with the noise of the MRI, when one of them says that I'll probably be here even longer as I need to drink the water. Well that provides further cause for celebration at my expense. They begin to laugh and one of them says that not only is it a pint of water that needs to be drunk but that the water is warm and tastes weird. That's why they keep grimacing and are taking only sips. That's why they are all waiting because they haven't drunk the water as instructed very clearly in their appointment letter. I feel a moment of triumph passing over me and as the words come out of my mouth I am the most smug and self centred than I have ever been since getting my diagnosis. I tell them that I have drunk the water as requested on my appointment letter. The room falls silent. Everyone is staring at me with utter contempt and disbelief. You can hear a pin drop as the cacophony of moaning has been silenced by this one statement. 

And just at the point with perfect timing I am called through to my appointment. I get up and as I leave the room I hear an eruption of voices all complaining bitterly that they have all be waiting for ages and why as one of them pipes up why was I being fast tracked? The last thing I hear is that I had drunk the water as requested whereas none of them had appeared to bother reading the letter. As the door closes I hear absolute outrage from the waiting room and all I can hope is that I can find another way out that doesn't involve me having to encounter this angry mob again and I find myself wistfully wishing I was back in the kind and forgiving world of the MRI where even though the process is tougher the company much kinder and collegiate. 

When I am done I am ushered out another door back towards the cubicle and locker where my clothes are. I think I spy one of the angry mob but the need to pee has overtaken any fear of these people. If one of them tried to get anywhere near me now I wouldn't be responsible for my actions and I'd be liable to blow - and I can't be too sure from what end first! 

Sunday, 28 July 2013

And we're off...or are we?

I return early into the new year to see my oncologist. He is welcoming and kind - enquiring about my Christmas and New Year. He has a gentle and reassuring manner about him and makes me feel that I am in good hands. I would be happy to string this polite chit-chat out for as long as possible putting off the inevitable. Knowing that this conversation is going to move away from frivolous niceties onto something much more concrete, stark and real. Even though I have had over three weeks now to get my head around what has happened I am still finding it hard to face up to the enormity of what is ahead. 

The conversation, as expected, turns quickly to matters more pressing. However his gentle and reassuring manner is replaced by a more agitated state as he realises that I have not been contacted by the chemotherapy unit yet. He had thought by the time we next met that I would have been given my schedule for treatment and be ready to start. His change in demeanour throws me and I now descending quietly and very internally into a state of anxiety and panic. I try really hard not to show it but I am feeling really quite disturbed. 

Up until this point it felt quite matter of fact - the information was provided to me in a very calm manner with lots of long pauses for reflection and slow tones to ensure I was taking in all the information being given to me.

However I am seeing a different response - one where all of what I had encountered shifts to agitation and annoyance - the opposite to everything he has been so far. I really don't like it. I need him to keep calm so that I keep calm. He is looking through papers and clicking his mouse bringing up different pages on his computer screen. I crane my neck in the hope that whatever he is doing brings some answers and restores the status quo I have come to know and find solace in. 

Up until this point, unlike other cancer patients who I have encountered on my 'gap year', it never occurred to me that my cancer would or could move or could increase in size. On  hindsight that sounds so ridiculous but its true. I mean of course I understood that cancer can spread. I'm not the village idiot, but in relation to my own immediate situation I didn't feel alarmed by that prospect. I know that people are keen to have surgery as soon as possible. I had heard of women going privately in order to get the cancer removed as immediately as they possibly could. Maybe I didn't have that sense of urgency because I was being offered neo adjuvant chemotherapy which meant that I would have chemotherapy first before surgery. In my naivety I assumed that part of their reasoning was because the cancer had been caught early, was minor and wasn't aggressively rampaging through my body. A year on I have no idea why I thought that and where the source of that information came from. My psyche I suppose. The only place where I could control what was happening. There were so many gaps in my knowledge that I would turn snippets of (mis)information into 'fact'. This was all I had left to hold on to. So as this stage with this being the case why the need for concern and why was this drama unfolding in front of me? 

I am suddenly gripped by my first reality check in all this. I wasn't ready for it but it was the first of many that I would have during treatment. What if his agitation is because things are not as straightforward as I believed and that it could spread and could be doing just that as I sat here looking at him looking through my notes and making phone calls and clicking on screens? I can't shake that feeling whilst I stare on at him helplessly.

He eventually turns back to me and says that he can't get through to the unit but we need to get treatment started as soon as possible as it has been delayed long enough because of the holidays. He needs to see his next patient but is concerned that I am leaving his room without knowing when I will be seen at the chemotherapy unit. I think he has sensed my anxiety and is trying to regain his calm demeanour in order to reassure me. For some bizarre reason I offer to call the unit myself and see if I can book the appointment as I don't want to delay matters. He isn't all that happy about me doing it but feels it might be the quickest way to get things moving so asks me to inform reception once I have done that with the date. 

I think I thought it would be like getting an appointment at the hairdressers. I mean they can't always see you when you'd like to see them but you can generally get an appointment fairly near to the one you originally wanted. Let me take my previous statement back about not being the village idiot, because quite clearly I am. I really am such a fool as I have no idea what I am letting myself in for. If I thought I was stressed and anxious when leaving his office that morning it would be nothing compared to how I was going to feel once I had made that call. 

I speak to a very harassed and harangued receptionist for whom my request for a start date for my treatment might as well be me asking her for the solution to world famine. Actually I think she would have preferred if I had asked her that. She probably could have sorted it out by the following Thursday. But a date to start treatment. Well that's the $64,000 question. She saying there all booked up until the end of January so I am probably looking at first to second week of February. We are in the first week of January and my oncologist was having a minor nervous breakdown that I hadn't started the treatment already and she's offering me something in a month or so time!
 Is she mad? Does she understand the enormity of this? I start to explain that my oncologist is concerned that I haven't started yet and as far as he's concerned I should have started already. Before I can even finish she starts a monologue about how THEY have no idea what pressure SHE is under to book all the appointments in and it's easy for THEM to tell HER what SHE should be doing when THEY aren't having to do HER job. By the end of the monologue or rant or whatever it is I find myself apologising and accepting her date for the beginning of February. However she does add in a kindly voice that she will try and get me onto an induction session sooner so as not to delay things even further. My head is swimming and I have the most pounding headache all of which is compounded by this new discovery of some sort of induction process that I have to go through. I don't want to be inducted or induced into this world of cancer. I just want to slip into it briefly and then slip out again as quickly as I came in. I just want to get started and get this all over and done with as quickly as possible. I am feeling sick and for the first time really scared that this is going to drag out and become my life from now on. It's not the blip I had hoped it would be. I really had no control over where this 'gap year' was going to take me and for how long. 

I put the phone down and start to cry. Having tried so hard not to cry in an attempt to keep strong so as not to alarm everyone and most importantly myself I am now feeling completely overwhelmed and very alarmed. Now I've started crying I can't stop. I'm like a really exaggerated version of Gwyneth Paltrow at the Oscars. If there was an Olympic event for crying I would be a definite odds on favourite. And it's not just a sobbing type of crying. I am trying out all the ranges of crying known to man. From the juddering of the shoulders but with only a whimper to full on professional wailer at a funeral. I surprise myself at the depth and reach of my range but I just can't stop. I feel completely overwhelmed and as the sobs begin to subside I feel another emotion coming to the fore. 

A begin to get angry. Not just a bit annoyed or slightly cheesed off but full on raging anger. Why is this happening to me? What did I do to bring this on myself? I start unpicking my life apart looking for an answer to this shitty situation I find myself in. I then start tumbling into the murky depths of divine retribution and karma recounting all the bad things I'd done to find myself at this place. However if this is the case then I'm riddled with this disease and this 'lump in tit' situation is just the tip of the iceberg. 

I need to stop this bloody self pitying and get a grip. Whatever the situation and whatever the reason I am here, I need to get on with getting as far away from here as possible and sitting here feeling sorry for myself is not going help me do that. 

I cannot bear this powerlessness and this paralysis which is taking over my life. I pick up the phone and call the clinic. I am put through to my breast care nurse and as soon as I start to explain what has happened the tears start again. Thankfully I stick to one style within my newly founded armoury of crying and the breast care nurse begins to reassure me. She tells me not to worry and to leave it with her and she will get it sorted. I put the phone down feeling completely drained and exhausted. I can't quite believe what's just happened and why I had to go through this. 

A couple of hours later after I have calmed down sufficiently enough to make myself a medicinal (well for my mental health at least!) gin and tonic I get a very calm upbeat call from the breast care nurse to say its all sorted. Though its still probably not as quickly as I think my oncologist would like at least it's this month and true to her word the receptionist has squeezed me into an induction session a week before it starts. Although I am relieved I have a date the enormity of it all yet again starts to kick in. I thank the breast care nurse for her help and gulp the G&T down in a couple of mouthfuls. I can't believe that in a few weeks time I am going to be on this conveyor belt of treatment and post this nothing will ever be the same again. However I have two weeks grace to hold on to normality and my pre-lump life and I am going to make sure I do exactly what I want to do when I want to and it's going to include some really nice things for me. So cancer we are so nearly under starter's orders but you are going to have to wait for just a little bit longer before you turn my life upside down, as I still have things I need to do...

Tuesday, 2 July 2013

Testing, testing 1-2-3

So I am yet again getting ahead of myself and leaving out important detail that I need to share in order for you all to get the true experience of my 'gap year'. 

I mentioned in a previous post that I was inundated with appointment letters asking me to come in to discuss treatment or undergo tests in order to ensure I would be having the right type of treatment and, as I would learn later, to determine if the cancer had spread beyond the breast. However my complete naivety about this whole process and what exactly an MRI and a CT scan were used for, didn't ring any alarm bells for me. I just thought that I had to have them because it helped the experts to pin down what the cancer looked liked. I know you're thinking surely she must know, but I can honestly say hand on heart - or is that hand on tit- it never ever occurred to me that the cancer could be anywhere else than where I had found it. So bar the fact of my nervousness of not knowing what the process for the respective tests entailed, it was probably good that I hadn't fully grasped what these tests could tell me. 

So the appointments came. Firstly for an MRI. Now I had heard of the MRI procedure and I think I had even seen one being done on TV, but I didn't really know what they we're used for and what they showed. Again until I was diagnosed with cancer I always thought I was really well informed about things in life, but it appears it was all rather superficial. A fine example of smoke and mirrors because once you start digging down further it was apparent I had absolutely no clue about the intricacies or finer detail at all which on hindsight I find quite alarming considering the enormity of what lie ahead. 

The appointment was scheduled for a Thursday afternoon. It happened to be on the same day as a dinner date in London with friends that my partner and I had arranged months ago. I was determined that things would go on as normal and this wretched cancer and the tests that went with it would not wreck havoc with my social life too. Also never the one to miss out on a good meal I certainly wasn't going to let a little old scan get in the way of some good scoff and fun company!!!

With the appointment letter came some information about the procedure and what to expect. They try to make it sound like its very normal and not anything to be scared of. However the reassurances that this is a routine procedure and should not cause any discomfort makes me feel they are holding back. Even though mention is made of some possible things that could occur its presented in such a way as to be so unlikely to happen and if it did then you were one unlucky lady. Well the fact that I am having to undergo the procedure itself means Lady Luck hasn't been that forthcoming. So although I try to be low-key about it all as I wait to be called in I have a sinking feeling. 

They are running late. I am getting anxious as I have to get to London for that dinner date and the clock is ticking. After 15 minutes I am told that they are running 45 minutes behind but will do all they can do to try and make up time. I explain that I don't mean to be pushy but I am going out this evening and am now running late. Suddenly I see a get out clause. If it's a problem could we reschedule I say. They don't fall for it and to make me feel even more shallow for asking, they explain that the delay is due to a woman who is currently undergoing treatment and is having such awful side effects they need to see if any benefits have been gained by the treatment and if so whether this outweighs her side effects. She is feeling quite fragile so things are taking a bit longer. She wanted me to know and to apologise for delaying me. This suddenly puts it all into perspective. I am not here for a pedicure or a waxing treatment. I am here for a medical procedure for which life hangs in the balance. We are dealing with cancer and these guys do this on a day to day basis and need to work in conjunction with my team of experts. It's not a 'let's reschedule' situation. It's a here and now situation. They are not here to work around my social schedule. They are here to make sure that the process, which relies on accurate and up to date information, is feed this. I feel incredibly humbled and when I see the woman coming back into the waiting room I feel ashamed as for all her problems with the treatment she apologises for keeping me waiting in person and tries to reassure me that she's just an "awkward bugger" (her words not mine), and I shouldn't be phased by what is a straightforward and necessary procedure. She smiles at the staff saying that they are fantastic and make it all so less worrying. 

And she is right. The staff are lovely, very friendly, chatty and reassuring. They continue to apologise for the delay for which I assure them is really no problem at all. They say they will order me a taxi to get me to the station as soon as they know I will be near to finishing so that I can hot foot it up to my dinner date. They really are so kind. 

They talk me through what's going to happen all of which goes in one ear and out the other as what little concentration span I have left is diverted as they start to put a cannula into the back of my hand. Little did I know at this stage how this would become such a regular part of my life which I would come to dread but also feel reassured by. One of many oxymorons I have found din the world of cancer. 

I am told that the cannula will feed a blue dye into my body which is a contrasting dye to enhance the MRI scan images. There are a number of common reasons why this is given but in mine it is to look for cancer in other parts of my body as well as my breasts. Therefore a number of scans will be taken prior to the contrast dye injection and then a number after. I am told that I will be warned just before they do it. They say that in some cases you feel a cold rush through your blood stream followed by the feeling that you might have wet yourself. But it is just that - a feeling - so not to worry. 

The part of the machine which I go into looks bigger in diameter than I thought it would. It looks less claustrophobia-inducing than I imagined. I am starting to feel less anxious. The cannula insertion was ok and it doesn't feel uncomfortable or sore. The radiographers tell me that although the procedure is about 45 minutes in total it's split into two parts. Within those parts they will be taking a number of images that will last varying lengths and they will tell me when they will start and finish. One of the radiologists said that the first part when I am lying facing upwards is the shortest part and the part that one may be inclined to feel more claustrophobic during. Whereas the second part when you are face downwards is longer and less likely to cause any feelings of claustrophobia. Well I am feeling positively upbeat now though there is a fine line between euphoria and mania and I am definitely straddling both camps. 

Lastly they warn me that the machine is quite noisy so they put headphones on you in order to drown out the noise on which I have a choice of listening to either "cheesy pop or cheesy classic". What a choice! As I am about to make a decision on which might be the lesser of two evils I am offered a third option. One of the radiologists says, "I think we might have a bit of Adele if you fancy that?"  We'll at that point I knew of Adele but only really one song. Poor Adele she may have sold billions and be loved by millions, but I can now only equate her with MRIs and cancer which I know is highly unfair. But that's rule number one - never watch, listen or read anything that you could vaguely like in the future or indeed normally love in better times when you are having treatment or anything related to that treatment because you will never look at it in the same way again. It becomes associated with it. I read some great books but I could never re-read them. I watched some fun movies but couldn't re-watch them (thankfully a lot of rom-coms and lightweight stuff you wouldn't want to or need to see again) and some music I listened to which will always be forever associated with this moment in time and unfortunately Adele is one of those. 

As her dulcet tones started the machine was cranked up and the sound is something I can't even put into words now as its something quite unique. When trying to explain to friends what it is was like I couldn't even conjure up adjectives to describe it. All I could say was that MRIs should be used as a form of torture and that Jack Bauer in 24 was missing a trick. Forget waterboarding. Just put somebody into one of these machine and put some headphones on them in some vain attempt to drown out the sound with another sound that is bearly audible but annoyingly just out of reach or in reach (whatever way you wish to look at it). Mix that with the instructions to stay perfectly still or it will have to start all over again along with long enough bouts of no communication which is highly unnerving for someone who never stops talking at the best of times. On top of this you are in the most uncomfortable position ever with blue dye being pumped into your vains sending you into hot and cold spasms which in turn makes you are absolutely convinced you have pissed yourself and there my friend is your 21st century form of torture. 

Dramatic? Yes probably. Widely inaccurate? Well maybe a little but it wasn't pleasant. It wasn't dignified and it wasn't something I wanted to experience again. It was as they said only 45 minutes of my life, but it was 45 minutes too long. I think I should have prepared myself better with a bit of research and some coping mechanisms up my sleeve instead of playing it down. During the whole process I keep saying to myself that old adage "what doesn't kill you makes you stronger", but I couldn't honestly believe that. I had just undergone a procedure that was looking to see if there was something in there that could kill me. So the saying didn't quite work. I came out of that clinic feeling undoubtedly weaker and very dizzy. When the taxi driver dropped me at the station I literally stumbled onto the platform and nearly tumbled into the path of the train if it wasn't for the fact that someone helped break that fall. Not intentionally I am sure as I think in breaking my fall he must have nearly broken something himself, but he was very gallant and an absolute gentleman about it all. 

I got onto the train and read the piece of paper they gave me providing helpful and informative information following an MRI - signs to look out for and things to do to help minimise the effects. I read them all and probably had a number of them, but the only advice I saw and heeded was to keep hydrated. With perfect timing the buffet trolley made its way down the carriage and I heard myself ordering two gin and tonics. Well they said to keep hydrated and I had a least an hour's train journey. So what's a girl to do! Let's put it this way - I made sure I did as I was told and kept well and truly hydrated for the whole evening...