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...