Waiting for results, making up story lines and Christmas nostalgia

December 3rd 2015

I was teary on the day of my scan, to which I went alone. Happy to be alone. It is almost impossible not to mask your real feelings when you are with someone you love. These moments are very private and I need to be able to simply feel what I feel and express it in private. As last time, the scan involves lying in one place for am hour while the radioactive material and glucose circulates around your body. You are not even allowed to read as the motion of reading allegedly can result in activity showing up in the brain on the scan. I could, I thought, listen and had downloaded a story on my phone in preparation, only to be told that this time I was not even allowed to listen to anything. I was not very happy with this new rule so pushed back. Why could I not listen to anything? The first answer I received was something about brain activity. So I pointed out that I could hear the buzz of the loud air conditioner and if I wasn't listening to a story I would either be listening to the air conditioner as well as thinking deeply about stuff that would, I imagined, create far more brain activity. So she went away to ask her colleagues only to return with news that there had been mixed advice and it as OK I could listen to something. So I lay there for an hour in a windowless, dark room with a camera trained on me (presumably in case I fell off the bed or had a fit) listening to an audio book. It was strangely calming. The scan followed. For this I lie with my arms above my head, very still, as I am moved slowly up and down inside a giant polo shaped machine. This too was quite a calm affair. 

You can’t help though but look through the glass partition between you and the medical staff sitting watching screens of grey shots of your insides. They look from afar rather like photos of strange planetary activity. I am sure I have seen films or seen photos on the internet where the cancer shows up as green lights, spots where the radioactive material disguised in a glucose mixture is identified and gobbled up by cancer. I am not sure they really show up like this on the screen as you are actually being scanned. Perhaps. I did try a little peak to see if I could see any green lights on the screens I could see from my side of the pane of glass. But no luck - just strange grey planets and constellations of stars. I still do not know if the people who take the pictures are qualified to, at the very least, tell if someone they are scanning is full of cancer. Or do they just take the pictures and send it to someone with the skills to interpret them? In this case, as I have a baseline scan, I do know that one of the steps is for the scan to be sent to a consultant who will then compare them with the last one. 

My appointment came through yesterday, for the results. My heart jumped when I got it. The appointment is on 15th December, which is 2 weeks away. It is dangerous trying to read the tea leaves, but I think if I had been called in for an appointment very soon after the scan I would feel more nervous. I have to assume he has looked at the scan report and at the very least has not seen anything that requires immediate action. Alternatively it could be that things are very busy before xmas and this is the first appointment slot I could get. Whatever the reason - I have 2 weeks. I am not bothered by the 2 weeks, I am not really very keen to know the results I want to trust that my body will tell me if something suspicious is going on. And at the moment I feel generally pretty well. 

My life feels rather like a story. A gripping tale, a page turner. I am impatient to speed read, skip some pages and find out what happens in the end. Who doesn’t? The last time I felt this so acutely was one New Year when I was about 20. A group of us were sitting around a fire in a cottage in deepest rural Wales pondering life and the universe and someone asked what we would like to be doing this time in 10 years. The responses were really rather simple and similar. Apart from ‘end world poverty’ or ‘have made my first million’ type answers most wanted to be in a happy relationship. I remember clearly that I said I wanted to be married and would have 3 children by then. I closed my eyes and saw a picture of me with a little family around me, I could see bodies but no faces. I often think of that New Year as by 30 I had in fact met the love of my life and I did have 3 children (only just). Those early years of adulthood are strange, you live for now but work for the future knowing you are laying down the foundations that will set you up for the next part of your life and your career. Playing with relationships. Learning about yourself and navigating the world as an independent person for the first time. Wonderingwhere you will be and if your hopes will become real. It is no too late for anything. 

Have you ever come across those story books where children can choose what happens next and thereby affect the course of the story, and of course the ending. My story feels similar in that at any moment the story line could lurch in a totally different direction. An appointment to receive the results of a scan is one of those concrete moments which might move the direction of the story away from the path I would choose if I was that child deciding what I would like to happen next.  

But I can influence what happens day by day and my ambitions at that level are easier to achieve. A coping strategy is to simply not consider in any depth the different paths I could take. Spending time considering these paths takes up energy and makes the here and now less settled. So best to be avoided.

I have been enjoying the nostalgia of Xmas, the lights and smells. I have felt sad about some of the smells however. The smell of mulled wine and hot chocolate with cream. These are not on my list of allowed drinks - too sugary and too dairy. I have been more extravagant than normal in buying decorations for the house. Partly because every year I curtail my spending on anything other than essentials, which means this year I am applying the ‘sea view’ rules. My Aunt, after she was diagnosed with ovarian cancer and considered terminal, went with her husband for a few short holidays during which they initiated the ‘sea view’ rule when selecting rooms to stay, but this extended to other decisions. She bought herself a lovely new coat just months before she died. Why not? I am being slightly contradictory however, as my intention is to be around for the long term and extravagance can only be sustained for so long. So mine is tempered extravagance. I have just bought some new baubles for the tree. Baubles are items that in my view become family heirlooms. Every child has a memory of hanging their favourite bauble or decoration on the tree, whether they be beautiful old glass creations or cloth monstrosities made at primary school and extracted year on year when the xmas decoration box comes out. 

When I met Rupert at just 23 I had never ever spent a christmas away from home. On our first Xmas together (we were engaged by then), he came home to my Mum and Dads to celebrate with them, my siblings and cousins. We spent our second Xmas with them also, this time taking Ella who was five months by then. By our third Xmas together I was pregnant with Tom, and feeling bit ropey. Rupert, who was from a far smaller family, was relishing the idea of a quiet Xmas alone. All I did was mope at the silence and lack of chaos and when my family called to during Xmas lunch, to wish me happy Xmas I simply burst into tears. I could hear the noise and jovial laughs and screeches in the background and was slowly passed around the table to talk to the broader family. Since then we have grown our own family, and usually alternated Xmas - but now the children have a voice and they love the chaos of a Christmas at my parents andwith their cousins. Rupert is now fully initiated and we spend slightly more Xmas’s there. As his parents are now not with us there is less reason to stay at home.  

With Rupert away in America at the moment, and Ella in London, the boys and I took responsibility for the tree. We decorated it yesterday with the usual arguments about what decoration goes where. Basically anything considered too gaudy or garish gets banished to the back of the tree, the side that looks out of the window onto the street, and the pretty baubles hang front ways so that we can enjoy them. There is a particular glittery plastic snowman which Ned kept shifting to the front when he thought no one was looking - it is now down one of the sides in a compromise position. 

I found a moment to look through my 1985 diary - I am 14. The diary itself is still very tiny with little space to write anything in any particular depth. It communicates the life of a young teenager. Lots of swearing creeping in and frequent miserable ‘I am so depressed’ type entries followed unexpectedly by a sudden rush of love for life.  In that year we moved to an army base in Germany, just as my friends were building social lives (that included meeting boys - remember I was at an all girls covent) and planning and going to parties. Who is having what party and who is going to it is a dominant theme. A few names of boys are introduced. In those days you were lucky to get a moment on the payphone at school, and if you did you were even luckier if the person you wanted to speak to at the other end could be found or was free to talk. So we relied much on letters. Some of my entries start ‘I got 4 letters today!’. The power of the letter. An affirmation that someone is thinking of you and you are important to someone. I am not sure if life for teenagers today is better or worse - with social media there are constant and frequent opportunities for affirmations, so gaps without any communications for any extended period are almost unknown. In 1985 you could go for weeks with only a letter from your Mum. In that year there is anticipation around Valentines Day, might I get a card or two? The answer was no. No card, except of course my loyal Mum who of course sent me one. But that in those days counted only in as much as I at least received an envelope when post was handed out. 

Moving to Germany felt to my 14 year old self like social suicide. I knew no one. My mother signed my older sister and I up to a tennis course during the summer break. I was mortified to find that I was in the 13 and 14 year old age group (i considered myself far more mature and the idea of mixing with immature 13 year olds was almost too much). My older sister who was 15 at this time, joined the far cooler 15 to 16 age group and was soon invited to join some of them to some evening social event, to my consternation. We we just one school year apart. It did not take long for me to warm to the place and to meet people. In the end I had a great 2-3 years there and it was a wonderful safe place to grow up during those teenage years. 

It was in 1985 that I had the operation to remove the lump (which turned out to be a cyst) in my left breast. Could this have been the very start of the foundation of where I am today? It was in the identical position to the lump they removed 5 years ago. In my diary I clearly am more interested in the excruciating embarrassment of having to go into hospital for something to do with my relatively newly growing breasts than the physical discomfort, which I remember well as I left with a huge bandage covering my top half for a while. I had to walk with my hands in front of my chest to protect myself from the crowds at school as children pushed and shoved down narrow corridors at change of lessons or meal times. 

I have just received a call from my oncologists secretary asking if they could bring my appointment forward to tomorrow. Even seeing her name on my phone makes me go cold. She says it is because she had booked me the 15th when she saw my results were in as it is busy before Xmas and had told my oncologist who then said he wanted to see me sooner as he did not like leaving people for that long after a scan. I pressed a little wanting to know if there was any urgency in this. She could only say that it really was that he does not like to keep people waiting. I suppose either way it is not good to have too big a gap psychologically. I could be staying awake at night in a fear. Instead I am rather enjoying my not knowing as I feel so well, I hope this is a strong enough indicator of how I am. But there is that little worm. My appointment is later in the day tomorrow and I will have bloods taken in the morning. Gulp. I will distract myself with work, chores, xmas and audiobooks.