Monday, 19 November 2012

My very own Entourage

There have been points on this 'gap year' that have been particularly unbearable. The first was the one when I found the lump and was waiting in the doctor's surgery. The second was the time between the first breast clinic appointment and the second one for the procedures to take place and the third was waiting for the results - the last one being the hardest, although deep down I already knew what the answer was.

As you may have noticed I have approached most of this of my own. It may seem strange but until I knew the full effect of the situation I didn't want to be an alarmist and involve lots of people - not even my nearest and dearest. My partner knew of course and my lovely friend who took me to the first appointment, but I just couldn't reveal it any further until I knew what I was actually revealing. I couldn't even tell one of my dearest friends as she was grieving the sudden loss of her father and I just felt I couldn't add to her worries. She needed all her strength to get through her grief and that of her family and didn't need me adding to it.

My partner was the one bearing the brunt of this and I was not dealing with it as well as I had hoped. The nature of his work meant that he wasn't able to come to appointments with me but frankly even if he could there was something, at this stage, that stopped me wanting him from being there. There is no rational explanation but I just felt that before I could share this further with anyone I had to have the full details of what I was up against.  I think deep down I wanted to protect everyone from this especially my family.

However with the next hurdle looming I was starting to feel very alone and out of control. Because of work commitments away from home my partner could not come with me on the day of the test results. He wanted to rearrange things but I just couldn't bear getting bad news with him there and then feeling the need as I always do to have to look after someone. I just needed to hear whatever it was they had to say, process it and then let everyone know. I am not scared of sharing and talking as all of you who know me know but for once I needed to control this as it was probably going to be the only thing I could control in this new world that was undoubtedly ahead of me.

The friend I was trying to spare the news from sensed something wasn't right. I hadn't been in touch as I would normally be especially in the circumstances because I was scared I would let something slip and let her know what was up and just couldn't to do that to her. However I couldn't keep avoiding talking to her and eventually my partner convinced me I needed to talk to someone else and have someone with me at the appointment. I knew I had to tell her.

When she spoke she immediately asked me what was wrong. I tried to hide it from her. I was fine - just been busy with work and life. She wasn't buying it. She had known me way to long and had been through far too much together to pull the wool over her eyes. Eventually I broke and the words came out in a torrent mixed with tears and I am sure by the time I had finished blubbing globs of snot too! As I knew she would be she was amazing and in her grounded way assured me that she would be there with me at that appointment and throughout whenever I needed her. I suddenly felt like a great weight had lifted. I didn't have to face this on my own anymore. I had someone who could share it with me and keep me focused. Someone more pragmatic and way more sensible than me that could keep me going off the dramatic deep end which I am inclined to do. 

So here we are at the clinic waiting for me to be called up for my appointment. Half an hour passes after the appointment time. My friend is chatting away to me trying to keep me distracted. At first I am up for this approach but as time passes I become more anxious and agitated. Although I continue to chatting away I am starting to become less engaged in the conversation and am fixated on the time. Everytime someone comes out to call for the next person I am like a meercat on my hind legs - alert and watching. Eventually a woman calls my name. She comes over to introduce herself and tells me she is a breast care nurse. I numbly smile and follow her as she leads me and my friend to a room. I am now starting to feel really nervous and this whole procedure feels very surreal. I am not taking in anything that is being said. A man walks in and I assume the breast care nurse told me this was going to happen but I can't remember. He is followed into the room by a young woman. I need to snap back into the present. I need to concentrate on what is happening but I am also desperately trying to hang onto the last vestige of hope that this will all be okay and that this is what he is about to say...

"Do you mind if our student doctor sits in on this?" My heart sinks. I know what is to follow. I wouldn't have a breast care nurse or a student sit in on this meeting if it was to tell me that the lump was benign and I can go home. A student would not know be looking at this man poking at my chest to show her a benign lump. Of course not you silly arse. You know what is going to happen and you know why you are now here in this room.

What I don't really remember are the words that followed. All I know is that the conversation was put onto a CD for me to listen to at my leisure. Maybe as background music for a dinner party. Forget Norah Jones, Zero 7 or a bit of Jamie Cullum. Its the breast cancer diagnosis CD which you need to have subtly playing in the background whilst you serve your Nigella/Hugh Fernley W/Jamie/Masterchef or Come Dine With Me homage. It is so on trend. However I don't want to be 'on trend'. I want to be as passe as you can get. So passe that I am not really here but in another time of my life, another decade would do. A moment in time which I would have angsted over at the time but in hindsight was fuck all compared to this moment I am in right here, right now. 

I try to follow what is being said. I have people looking concerned at me. People I don't know speaking in soft slow tones so that I understand and take in everything that they are saying and probably to ensure that its all being caught clearly onto the CD. But I don't hear a word after being told by the kind looking man that I have breast cancer. I don't know what type it is, how big it is or how bad it is. I hear nothing. He is speaking to me and I can see his lips moving but he might as well be speaking in Swahili or Cantonese. I feel myself nodding and I look down at my hands and I am digging my nails into the palm of my hands. I need to feel something as right now I just feel completely numb and the only word I keep hearing ringing in my ears and swirling around in the cavities of my mind is 'cancer'. 

I will not at this stage bore you with the detail. Oh god I can hear you thinking this means that she will bore us at some stage. Well yes I think I have to but only because as its a blog about the Big C I ought to provide some factual detail about it. But right now at that point in time although being provided with as much detail as probably was humanely possible I do not recall any of it. My friend is listening intently and taking it all in I am sure or should I say I hope...

I am starting to rationalise this in my head and trying to allow the logical side (oh there is one honestly) of my brain to take hold in order to get a grip and pull me back into the here and now so I can process what I need to do once I leave this room. I am thinking about the woman I meet when I came for my mammogram who had had breast cancer and looked amazing and told me that after surgery and then radiotherapy she was fine. It had all started in May and it was now November and she looked great and said she was feeling more energised than she ever had before the cancer. I started to think that this was going to be okay. My breast cancer would be the same and I would have it cut out and be back to work and returning to life as I knew it but with even more vigour. I was starting to listen to what was being said to me. I remember hearing the statement that it would be a 'lumpectomy rather than a mastectomy" and think I may have even asked a question or two in a vain attempt to show that I was in control and my silence up until this point was because I was taking it all in and processing all this information in order to make informed salient points and ask pertinent questions to fill gaps or clarify. Oh how so very far from the truth could this be. 

As I felt the turmoil lessen and a sense of calm prevail another C word was thrown in the mix to send me heading off on another rollercoaster of emotions. No it wasn't THAT word but I think I would have preferred it if it had been. "We would like to give you a course of chemotherapy prior to surgery and then follow that up with radiotherapy and then Tamoxifen."  My friend sensed the effect the words were having on me and grabbed hold of my hand. I remember that simple gesture meaning so much at that point. That dark frightening time when I realised that I wasn't going to have cancer like the woman I meet in the waiting room two weeks ago. Little was I to know how different every single cancer is and how each cancer even if it bears the same name is so very very different to each person experiencing it. But in this place, in this room with my lovely friend holding my hand the true enormity of it all hit me like a 10 tonne truck coming at full speed and meeting a speedy express train coming the other way and finding little ol' me right in the middle.

I am now holding her hand far too tightly but I can't stop and she is so lovely that she just lets me do it sensing my need to have someone to connect with as I am suddenly don't want to be alone with this but know deep down that from now on I very much am and am completely and utterly overwhelmed by what that means. No one can do this for me or help me do the treatment. Just me. Nobody will ever know how this diagnosis will make me feel from now on and for the rest of my life. No-one but me.

The doctor leaves the room with the student and I am left with my friend and the breast care nurse. I want to scream, I want to shout out, I want this  not to be happening but nothing comes out. I am numb and the time that passes feels like an eternity. Suddenly I need to get out of this room, escape from this building which is the architect of my now miserable and depressed state of mind - away from these people who have been the messengers of this bad news. 

But as I leave I know that this place will be a fixture of my life from now on and even though I came in alone and I feel alone right now that I now have an entourage - my very own entourage - my surgeon, my oncologist, radiotherapists, chemo nurses and breast care nurse. I am now part of "Team Soraya" and for once in my life I better be on the winning team. 

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