Its been a long time since I last managed to compose a post for my blog and in essence that’s actually what this post is all about. It isn’t going to be a post about lots of nasty side effects of chemotherapy but because of its impact on The Vintage Shetland Project it does have to be about one that I have experienced, and that is chemo-brain (or chemo fog). Exactly why people experience chemo brain and why it affects people differently is not really known but a high percentage of people undergoing chemotherapy unfortunately suffer from it. This is how it is described on the Macmillan website:
Chemo brain refers to changes in memory, concentration and the ability to think clearly. Your doctor may call these problems cancer-related cognitive changes (CRCC). At the moment we don’t know exactly what causes these problems, or how many people are affected by them.
The symptoms of chemo brain were first linked to chemotherapy. But the term chemo brain can be misleading. Changes in memory and concentration can affect people with cancer who haven’t had chemotherapy.
Symptoms are mild or subtle. But they can be frustrating and affect everyday life. They include:
- difficulty concentrating
- trouble remembering things
- extreme tiredness
- a feeling of mental ‘fogginess’.
A slightly extreme, but nonetheless accurate, example of how it has affected me, occurred watching TV a few nights ago. Apparently fully awake I watched a show with my family. A little while after it had ended a conversation sprung up about it. I had no recollection of the programme being on whatsoever. I had watched it, but absorbed none of it, to the point I did not even believe them that we had watched it – but we had. Words however, are proving to be my biggest failing. Time and again I cannot find the words. Even if I manage to find them in my head, by the time I try to say them or write them down I’ve lost them again and they absolutely will not come back. There are days when I can’t remember my husband’s name! This blog post was going to be called something completely different but now I can’t remember what it was I was going to call it. Once this starts happening more and more frequently the DOUBTS about your abilities start to creep and and I’m sure you can imagine how I began to distrust myself when trying to finish off things for The Vintage Shetland Project – in particular the essays. I not only want this book to be perfect, I need it to be perfect. I would hate to find myself a few months down the line, recovering from treatment and surgery, feeling stronger, but being disappointed in what I had produced.
And this leads me to CONTROL. Almost every moment you are going through cancer treatment you feel as though your life has been taken out of your control. The barrage of appointments, treatments, interventions, illnesses, side effects etc take over your life. I therefore found myself desperately trying to find something that I could retain control of. This was The Vintage Shetland Project. When I last sent out a newsletter I was endeavouring to follow a day by day plan to get me to the point where the book files would be sent to the printers on November 14th – significantly the same day as my last chemo – I was obviously trying to put cancer in its place with that one!
I wouldn’t admit to anyone, particularly myself, that the demands I was making were unreasonable but I so, so needed to retain some control over something in my life, to not let myself or others down, and to convince myself that I was still capable of working during treatment. As the days of the plan passed by and I struggled to achieve the targets I had set, I refused to acknowledge that I couldn’t meet the deadline or be happy with what work I was producing. The pressure I put upon myself no doubt impacted on my ability to recover from chemo as I pushed myself to work instead of focussing on recovery.
And then I began to re-read the messages so, so many of you had sent me, by email, in responses to my blog posts, on ravelry or on other social media and it dawned on me that there really seemed to be only one person applying the pressure and that was me. I had to ACCEPT that on the subject of work, cancer had ‘temporarily’ beaten me. I had to stop pushing, stop being cross at myself, stop making myself more tired and accept that my body and my brain needed a rest. The battle against cancer is a psychological aswell as a physical one and my fight to carry on with the book has been a huge part of that so stopping work on the book until I recover has been something I have not been able to accept. However I do need to acknowledge and do something about my approach and so I won’t suspend working on the book altogether, but during the final couple of months of treatment where I will undergo a double masectomy followed by radiotherapy I will only be working on the book when I feel up it and am able to do so. Then when I’m out the other side early next year, I will finish things off and get the files to the printer. This way I still feel in control but without the pressure of a set date. I’m convinced this way the book will be even better, I will be happy with the end result – as will you, the reader, and I will have the opportunity to recover properly. I’m going to try and keep writing on the blog – even if my grammar and spelling aren’t quite up to scratch – its good for me to try and keep writing. I’ll also continue with my little posts on instagram which are also great for practising with the written word and will send newsletters when possible to start telling you more about the book.
I hope you will not be too disappointed at another wait. I had no idea when I started on this horrendous journey, what cancer treatment would do to me, so I can only apologise once again for the date changes and uncertainty, but what matters in the end is a book to be proud of, and me back in good health and able to enjoy the fruits of my labours.
But for now