So Many Books, So Little Time

I have always been bookish; a seemingly insatiable desire to read along with an eclectic curiosity has led to what I have always considered to be a healthy attraction to book acquisition. I like to read books, to own books and to be amongst books; libraries and book stores always entice me. I have always got a small pile of unread new books at the ready and have bookshelves overflowing with books that I would like to revisit.  As a way of remembering what I have read I like to make handwritten notes that I can refer back to.  I think this is almost ingrained as habit for me: I made loads of notes when I was studying and later, my work as an academic meant that I needed to make notes with regard to either my research or my teaching.  Therefore, the making of notes from books that I read for personal interest and pleasure is an extension of this.

However, just recently I hit a bump in the road, the bump being my diagnosis of incurable cancer. All of a sudden it all seemed so pointless.  Firstly, chemotherapy made it difficult to concentrate long enough to even finish one page, so for the first few days after treatment I opted for the TV box set.  Too weak to do much else but become square eyed and practically comatose.  I had not previously realised the energy required for what appeared to be the simple task of reading. The books at my bedside seemed an insurmountably high and redundant pile reminding me of my new status as a cancer patient. Secondly, writing my notes up (which had always been an enjoyable aspect) began to seem a futile endeavour – they are only for my benefit and will be thrown away when I die – which might not be a long time off!  So, is it not an utter waste of time?  Thirdly, I have become aware of the limitless amount of books that I want to read and the limited time that I have.  Should I start buying my books one at a time rather than in multiples of three or four?  Should I start emptying my bookshelves as I’m unlikely to be able to revisit them all again?  Should I throw all my notes away? Should I give up on reading altogether?  Honestly, what is the point of my reading with the uncertainty of illness and death hanging over me like Damocles’ sword?

This is why a cancer diagnosis is so life shattering. It’s not just the big things that you have to deal with such as the trajectory of the disease on your body and the risks of the treatment, it’s handling the small, rather mundane things that fill a life that were always previously taken for granted but which now take on greater significance.  Why was it possible for me to read unquestionably just for the sheer pleasure of it before I was diagnosed with cancer?  Why did I never previously question the purpose of it?  Why does it need to have a purpose now just because I have incurable cancer?

Well, I think I may have come some way in settling my dilemmas and I’m pleased to note that it does not involve getting rid of any of my books or stopping my note taking. Instead it has demanded that I understand myself a little better and recognise the values that I hold.  Historically, it was the Renaissance when, as Lisa Jardine states; “the printed book revolutionised the transmission of knowledge and permanently changed the attitudes of thinking Europe.  Print brought with it many of the features of a book-based culture which in our everyday lives we now take entirely for granted”.  I was born embedded into this culture and its influence is clearly visible in my lifestyle.  For me, a quality life would have to include the opportunity to read about subjects that interest me.  I had never realised how important this activity was for me.  Equally, as Jardine points out, during the Renaissance the book became treasured both as an art object and as treasured text.  They were “curiously intertwined”.  Therefore, wanting to see my bookshelves and the rows of book spines that furnish them has a deep aesthetic value for me. I now realise that my reading habits do not need a purpose because, quite simply it is a lifestyle choice that I make, even if that life may be coming to its end.  It’s what I do.  And it might just be the perfect response to the circumstances that I find myself in. Jules Renard, the French writer quoted by Julian Barnes in his book ‘Nothing to be frightened of’ said; “It is when faced with death that we turn our most bookish”.

So, why not continue to buy books in multiples of three or four? Why not swap for the box set after I’ve had chemotherapy? As for the making of notes, I shall continue with this activity too and consider it my ‘hobby’.  Realising that I may not have much of a future the activity becomes in a way more significant as a hobby.  I have found the point of it after all.  The point is – enjoyment.  Selecting books, holding them, owning them and reading them along with making notes are all for me part of a creative pursuit that’s pleasurable, intrinsically rewarding and allows a sense of accomplishment.  With or without cancer.

Going for a CT scan after three months of chemotherapy

I’m feeling very anxious.  Tomorrow I have an appointment at the hospital to undergo a CT scan to establish if my tumours  have reduced.  I have been on Rituximab and Bendamustine for three of six cycles but it has not been plain sailing.  I have had severe allergic reactions to the Rituximab (a cancer drug known as a monoclonal antibody) which halted the first cycle and caused problems for the second.  It was only the last one, two weeks ago, that was delivered fully, according to plan.  Thanks to much tweaking of the pre-meds and additional steroids. So will this be enough to show progress?  If no reduction observed, will I have to be put on a more aggressive chemotherapy? So far I have been fortunate with the side effects; the sickness is controlled by drugs, I haven’t lost my appetite and although my hair has stopped growing and is thinning I have not lost it.  I look dreadful with sunken eyes and cheeks(I’m not sure why) but this can be forgotten if I avoid looking in the mirror as much as possible.

The best outcome of the scan will be that there has been a significant enough reduction in the tumours in order to continue with the chemo programme. The worst outcome is that there has been little or no reduction and the treatment  will have to be altered.  I dread what this might entail.

I think I have found the uncertainty of everything to do with cancer one of the most challenging psychological aspects.  There is no certainty with my diagnosis or prognosis.  There are over sixty classifications of Non Hodgkin Lymphoma.  It can be either slow growing and incurable or fast growing and aggressive but curable for some.  I have slow growing but this is never certain because they can become fast growing at any point in the future.   So I live with the uncertainty of the behaviour of the cancer, the uncertainty of treatment  (I hadn’t realised how hit and miss this was) and the uncertainty of how long I will live.  And should things get bad I have no idea how I might die or how long it might take.

So, although the CT scan itself is not an onerous procedure, its outcome has huge significance.  A significance that disrupts my sleep and troubles my cowardly responses to treatment.