Monday, 19 November 2012

In the beginning...

It had always been my intention to write this blog in 'real time'. As things happened during this gap year of a journey it was my intention to chronicle every experience and nuance of the situation in order for it to be preserved in time and at the time. For it to provide the author and the reader or readers (well a girl can hope...) with a true account of what happened as it happened as I suppose blogs are meant to. However it became very apparent that in normal times I would have struggled to keep this up so there wasn't really a hope in hell that it was going to happened when I was drugged up to the eyeballs and undoubtedly not going to be well. 

I googled many cancer blogs and marvelled at people's ability to keep it going even when they really were not very well at all. Not only could I not have done that I was really aware that I wouldn't have been able to capture what I was truly feeling because the drugs changed my perception of everything happening to me and around me. I can only now, months after treatment has ended and with some semblance of normality returning, feel I can express what has happened to me over the last 9 months. It is nearly a year to the day that I found my lump and at the end of November it will be one year since I went for my tests. December 14th is the day I was given the news about my diagnosis. 

Only a year on do I feel able to do this. That I am at last in the right place to tell my story in the right words at the right time. 

Who am I doing this for? I am not sure. I think first and foremost for myself, then my family, then my friends and for those who have been through this, but in no particular order. I also hope that this might be useful to those starting to going through this. Those who are where I was a year ago. Scared, alone and frightened of what might be ahead and googling for some answers, some support, some helpful words and so importantly honesty.

What a difference a year makes. I am no longer as scared or frightened anymore though I am still alone with my innermost feelings about this but I think that's okay and natural. Its hard to explain even to those closest to you how you are feeling if they haven't experienced a diagnosis as life threatening as cancer. But having experienced my worse fear I am prepared and ready for whatever the future now holds and I really am  no longer scared of it. I have to live for today and all the days ahead that I hope I have. I owe it to my family to get on with my life and move forward.

That is why writing this blog now is the right time. It is now cathartic and allows me to get beyond my cancer and begin to live again.

In the beginning things were so different and I truly believed that I would leave my cancer behind after treatment, but I now know it is what makes me who I now am and who I am going to be from now on. So although in the beginning I thought I would be nearing the end of this blog by now, I am only just truly beginning.

'X' marks the spot

One of my appointments is a procedure to have a titanium marker inserted into the site of the tumour. This is to ensure that after 16 weeks of chemotherapy when it comes to surgery they are able to locate where the tumour was - as the hope is that chemotherapy will do its job and eradicate the tumour or at least begin to shrink it.  They need to be clear as to exactly where it is so that if after chemotherapy the tumour has gone that the operation ensures that the tumour site and clear margins are removed so that I am cancer-free.

So the day before my son’s 4th birthday and his annual birthday pre- hogmaney bash we do every year for all of the kids at nursery and our friends and their children, I go to the clinic. I don’t know what to expect. I have been told that it is a routine procedure and that it will be painless and I can drive. I arrive at the clinic and am quickly ushered into my appointment. It’s the day before New Year’s Eve and I am sure they want to be here as little as I do though that doesn’t stop me feeling sorry for myself.

The next day I have to cater for about 30 four year olds and their parents. Our son’s birthday has become a popular fixture on the social calendar as it falls on New Year’s Eve and for many of us parents’ it’s the only hogmaney celebrations we will get to over the next few years whilst our little ones are so young. My partner and I have always tried to make it as fun for the adults as much as for the children with mulled wine, nibbles and cava to round off the three hours (which by then is definitely needed!) The kids run wild having lots of fun playing with toys or the games we lay on. I really do believe the parents love it as much as the kids which makes me more determined than ever to make it as great as ever and not for it or me to be clouded by the C word. By this stage I have only told a few people so I can get away with hiding things and carrying on with as much normality as possible.

I lay on the bed and my breast is numbed with some local anaesthetic. The lovely nurse offers me her hand to squeeze in case of pain when the needle goes in. She tries to distract me by engaging me in some general chit chat which I am grateful for as a gesture of kindness, but also feel obliged to partake in when really I just want to be anywhere but here. If she would just stop talking I could imagine this wasn’t happening and that I was where I should be – getting things ready for my little boy’s big day.

The doctor is kind and very efficient and the procedure itself as they said takes no time at all. I am bandaged up and sent on my way. I return home feeling not only the numbness in my tit but also in my mind. I need to retain this numbness in order to get through tomorrow and the days to come. My mind wants to scream, “Why is this happening to me?”, but I have to keep it in because I can’t lose it for the sake of my family and my own sanity. Certainly not now the day before my son’s birthday when I have to make a parcel the parcel or parcels big enough provide a present for each child and and bake a chocolate brownie birthday cake big enough to feed 30 children and their accompanying parents!!!

Now with an ‘X’ truly marking the spot my own swashbuckling adventure with cancer is about to start. But not today. Cancer will have to wait until next year I tell myself (or at least the day after tomorrow) then it will unfortunately, I’m sure, have my full attention. Today however returns to being about the most important thing happening this year – preparations for my little boy’s 4th birthday and this cake won’t bake itself…

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. 

Monday, 12 November 2012

Madam - can I interest you in a spot of...medical probing???

I am now officially the property of the NHS. Appointments come thick and fast. Each day letters with the NHS logo come through the letterbox. I am invited to different clinics and hospitals to undergo a myriad of procedures all of which will help form the full picture of my illness. As of this moment there’s a lump in my breast and some blockages in my lymph nodes but they need more information – more stuff and I need to have different things done to me in order for them to get the stuff they need so that I can get better.

At this stage however it is all so overwhelming. For somebody who has never engaged with the NHS in any way, bar having a baby, this is all new unchartered territory which I have explored only with my mother at close quarters but even then for a woman of 83 she’s done pretty well at steering well away from the inner workings of the NHS – just dabbling on the outer edges with regular appointments to see the doctor to confirm she’s still demented and to get her toe nails cuts all of which I take her to. God what a glamorous life I lead. Who’d have thought it all those partying, intoxicated, crazy days and nights would end like this… the selfish, feckless girl who just (allegedly) cared about herself and her own pleasures would be the one making sure that her mother’s little bit of memory and her dignity (as well as her toenails) were being kept intact. Would wonders never cease! Still those are musings for another post…

So suddenly I am on the mailing list for the NHS and each day the postie pops the letters through the door and I go, with dread and a heavy heart, to see what is in store for my frightened body and fairly feeble mind. I start to yearn for the days of junk mail. Surely someone, somewhere wants to sell me an awning, double glazing or solar panels. I silently plead for someone to need my spare clothing for charity, my money for a hungry child somewhere in Africa or indeed to buy up all my unwanted gold.  I tentatively turn the envelopes over hoping that I will need to immediately dispatch a postal order (do those still exist?) or cheque (can we still use these?) or make three easy payments towards a commerative coin or plate or a limited edition print of animals in hilarious or cute poses. But no it’s an appointment letter telling me what procedure is required to be undertaken, what will happen, what I need to do to make it happen and where and when it will happen. Oh cruel god of post and its junk mail disciple. WHY HAVE YOU FORSAKEN  ME IN MY HOUR OF NEED?

How many appointments can or should one person have to undergo for something they didn’t even know they had a week ago and suddenly is being dealt with in such speed that my head is spinning and I am starting to fear that things are worse than I’ve been lead to believe.

I still can’t get over the fact that I feel absolutely fine. Really well and although tired from my attempts at trying to have it all and do it all - relatively healthy. So why are they just not cutting this thing out of my tit and letting me go on my way? Why all the drama and build up? Why has everything become about medical procedures and probing? What are they looking for? I suddenly feel so ignorant to the world of cancer. For someone who thinks they are pretty well informed I feel overwhelming ignorant. Even though two of my good friends have been through this, that I lost a good friend to cancer and my grandmother died of cancer I find myself at 43 years of age knowing absolutely nothing about this and feeling very much like a lamb to slaughter. I want to speak to my friends who have been through this but it feels ghoulish and tasteless - making them pick at the scabs which I am sure have well and truly covered their wounds just to make it better for me.

I am scared to inform myself via the wonderful world wide web as I think it may tell me things I really don’t want to know and that things are indeed worse than I think. I need to get to a place of understanding that I am comfortable about and so that I can start to see these medical processes as just steps that need to be taken to getting me better. If I can see them as building blocks to recovery then maybe I won’t fear the arrival of the postman. Maybe I will be less fearful of the procedures ahead of me such as “MRI” or “CT Scan”. Maybe it will stop this inane need to have an onslaught of junk mail just to make me feel normal again…