Doubts, Control and Acceptance

posted in: Books, Cancer, Uncategorised | 36

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

Susan xxx

36 Responses

  1. Helena Tòra undir Varða
    | Reply

    You’re health is more important to focus on and family , the book can wait

    • Celeste Garcia
      | Reply

      Take care of yourself. The book will happen on it’s own time and that will be fine. Enjoy a small bit of beauty in each day as Fall is turning to Winter. May you be warm, cozy, and in the company of all you love — 2 legged and 4 legged. Thank you Susan for just being you and who you are. Your life has touched mine and that is a gift I am ever glad and full of gratitude for. Love, hugs, and tail wags,

  2. Bronagh Miskelly
    | Reply

    I suspect we’d all like to have the book you want to deliver – probably why there was so much support for the project – so we will all benefit from you being well enough to finish things the way you want.
    In the mean time it is good that you are putting what energy you have into what is right for you at the moment.
    Take care

  3. Beverly Hetherington
    | Reply

    Of course the book can wait, there is only one thing you need to think about at this point and that is yourself and getting yourself well again. And anticipation of what we have to come will only make its arrival all the more treasured. Lots and lots of love and best wishes to you and your family xx

  4. Peg
    | Reply

    Please take good care of yourself! That is number one! I am patient! You come first!
    I volunteer at The Smith Center for Healing and the arts in Washington DC. The Smith Center has programs for anyone with cancer. I co-facilitate a knitting group as a member of Project Knitwell. We find that knitting helps clients to gain control -over their knitting! Check out Stitchlinks- Betsen Corkhill writes about the therapeutic benefits of knitting.
    All the best,

  5. Dave Bennett
    | Reply

    I wish you the best in your continuing travails. I completely understand about the “chemo fog”. Same kind of thing happens to some people with anesthesia; happened to me. It is quite scary and I kept wondering if I’d get my mind back! It took ~4 months for me, though my wife says it still hasn’t returned.

    I invested your book because I believed in your vision. As someone struck down in middle age and left 100% disabled, I understand that unplanned or even unsuspected things will come up in life. You need to take your time, take care of yourself, and not worry about me or anyone else who backed your book. I am sure that everyone is 100% behind you.

  6. Mary Kaiser
    | Reply

    All the best, Susan. Take good care of your self, and take your time.

  7. Olwen Palmer
    | Reply

    Susan, we are all there with you on this horrible journey and the book will be worth the wait and a testament to you x

  8. Alix Pearson
    | Reply

    Susan, I so want you to emerge from your dreadful treatment and surgery and build up the strength to both complete, and most importantly, to celebrate this book. Please don’t feel pressured to release it without a blinking good shout out about it. We crowd founders originally invested in the project and the book. It’s gone way past that now. We are invested in YOU and I want this book to be a true joy for you and your family.

  9. Lieke
    | Reply

    Please don’t apologise – I’m sure everybody’s admiring you for your incredible stamina, I for one am.
    I liked the first sneak peek of the book today in the newsletter! The book is going to be great, and I’m glad you’re giving yourself time to rest and heal and work on the book whenever you feel up to it.

  10. Suna
    | Reply

    I’m glad to hear you’re focusing on getting well and not pressuring yourself. I’ve not gone through chemo, but I’ve suffered from a disease/syndrom that imposed severe limits to the use my hands and arms for quite some time, and I know how hard it is to accept such imposed limitations, but I found that accepting them made all the difference, and made it easier to focus on getting better. All the best!

  11. Janet Daniels
    | Reply

    No apologies are necessary, Susan. Perhaps, a part of your book is this detour and your documentation of it. Not that it needs to be included in the print version, but it is one of the unseen resources in the bibliography.

  12. Kath, Scotland
    | Reply

    LOve you! and your work 🙂 You take the time you need – you are knitting your own story into this project and that makes it even more precious xxx

  13. Maureen
    | Reply

    Id like to change your last paragraph to…..all that matters is YOU and your health.That will then result in a book to be proud of. Please allow yourself to take time for you.I shall enjoy your book whenever it’s finished.Dont give yourself the pressure of an end date ,allow yourself the mental space to heal.x

  14. Susanne Hansen
    | Reply

    Of course I’m looking forward to recieve book – but your health is much more important. The book comes when it comes ( perhaps a Danisk expression, I don’t know )
    All the best and love to you from Denmark!

  15. Lynsey
    | Reply

    You’re too special
    Very special to all of us!! Take as long as you need too, Susan!!
    Everything you do is brilliant, the book will be too, you’re very talented!!
    You just concentrate on getting better!!
    All the very best & you’ll be fine!!
    Love from Lynsey – fair isle knitting class at Purlesque Liverpool some years back xxx

  16. Rene
    | Reply

    No probs! We don’t care how long we have to wait for the book. Your healing is of paramount importance and nothing else matters. Nothing! I know you have put a lot of work into this book but don’t let stuff to do with the completion of your project hinder you in anyway whatsoever. Just focus on getting better-that’s all any of us want.

  17. Hilde Vos
    | Reply

    Hey, of course we’d all love to have the book, but naturally we understand and we can wait. When you take your time to become well enough to finish it according to your standards, we will be all the more grateful in the end Take care!

  18. Melissa
    | Reply

    Your health is far more important. Please focus on yourself and your recovery. My mum has had breast cancer recently, although she didn’t have chemo – “only” surgery and radiotherapy. I’ve seen what it has taken out of her, so I can’t begin to imagine how you are feeling. I love your knitting patterns and your yarn. I believe in this book and I am happy to wait until the time is right. Just do what you can and give yourself permission to rest. Nothing else matters. Sending you love x

  19. Elke
    | Reply

    I think you went a big step forward by accepting that there a phases in your life when you simply haven´t got 100 per cent control over it. Maybe TRUST is another good word: trust in those around you to take over some of the thinking for a while and trust in yourself that with good time and looking after yourself you will eventually be back in control. Work on your project when you really feel like doing it and do something else that does you good when you don´t feel like it. It will show in the end result. And it will help in your recovery. It absolutely doesn´t matter how long it will take to get the book finished.
    All the best!!!

  20. Vero Pepperrell
    | Reply

    Echoing what others have said, focus on your health first – we’ll be knitting away, awaiting the book’s arrival, but happy to see you better first.

    Many of us will have supported crowd-funded, Kickstarter-style projects before where the creators lose interest in their own project, fail to carry it through because they planned poorly, etc. In your case, we all know that you absolutely are putting your heart into it, but that no amount of planning could prepare you for this.

    Our patience and love for you is boundless because we know how much you want to see this project through. 🙂

    Take care,

  21. Jennifer Bruce
    | Reply

    Us knitters will be delighted with the book whenever it comes. Your health is so much more important than our knitting. Perhaps you can try knitting something simple it may help you relax, it could be mindless knitting a scarf for the homeless (we are doing that here at my YMCA in the USA), or a beanie for a baby!
    Just stay strong give your self up to rest and relaxation that will heal your mind and body. My husband totally retreated through his chemotherapy which was hard for me but this is the only way he could handle it, like you he had very adverse reactions to the chemo. We can wait for years for the book, those mittens you posted tell us it is worth waiting any amount of time, do not worry. Thinking of you

  22. Julie Evans
    | Reply

    Susan we all so want you to get better AND then produce a magnificent book. Even though I only know you through your work and chats at woolly events I and many others just want to wish you the very best. I want you to enjoy the book when it comes out to join in the celebrations. It will be a very special book not just because of all your research but because of what you will have overcome to get there and we all want to celebrate that landmark with you.
    For every negative comment you have endured there are thousands of us wished you the very best. Get better then we’ll have a great big fair isle party!

  23. Sue Wheel
    | Reply

    Just let yourself recover, we are happy to wait for the book, we know it will be marvellous. Those mittens are gorgeous and well worth waiting for.
    Help yourself the book will follow

  24. Anna
    | Reply

    Hope you feel better soon!

  25. Janet Anthony
    | Reply

    Just give yourself the time and space to heal. The book will be there waiting for you, when YOU are ready. We just want you to get better. When the book does arrive it will be all the better for the anticipation, but you are what matters at the moment. We all know how much you want the book to happen, but it is far more important to us that you get better first.
    Thinking of you

  26. Jane
    | Reply

    Dear Susan, you have shared so much with all of us. I learned how to do stranded knitting from a video you posted, and I’ve made beautiful sweaters from vintage patterns that I never would have been able to figure out without the multi-sized versions you shared in your Stitch in Time books. You are a gift to the knitting community, and I think we are all just hopeful that you will be feeling better soon. The book is absolutely secondary. Sending you all good wishes & healing energy from the United States.

  27. tracey
    | Reply

    Oh, Sweet. There is only one thing that matters – and that is you getting better. Not the book. We all supported your initial idea but we totally support you and hope that you will be well.

  28. Jennifer Smith
    | Reply

    It’s so very hard Susan to accept that whilst undergoing your treatment you can’t do all you want to my mum whilst having chemotherapy found it so frustrating and for us it is so hard to see her push herself too hard. For us we found that getting mum to listen to her body and do what she could when she could instead of pressuring herself helped us through that time and you do get through it and out the other side although I know it’s hard to see that at the moment. The book will happen when the time is right what is important is that you look after yourself through this xx

  29. Kimberley Saint
    | Reply

    Thanks for the blog post.
    Susan, cancer has not temporarily beaten you. You have simply shifted your focus to the most important thing, your health. And to maintain your health you do have lots of appointments and treatments, that sound utterly rotten, right now. I know your focus will shift again, as your treatments near their end. But please do take your time and be kind to yourself. We, your followers/admirers/fans/colleagues/friends/buyers, will still be here. I very much look forward to seeing the project finished, as I know you will do it, and I look forward to seeing you out promoting it with a radiant smile and a red lip x

  30. Danielle
    | Reply

    On so many levels and in so many ways, you are an inspiration to us all. Your remarkable work and its underpinning ethos deservedly earn you a vast following of admirers. Your amazing courage, determination and openness confirm how very special you are and why it’s a great privilege and pleasure to be involved in any way in your projects. Like many, many others, I send my heartfelt wishes for your safe journey through the next phase of treatment and my hope that you will take to heart the messages conveying the truth that your recovery and well-being are all that matter. Love and best wishes x

  31. Maryanne
    | Reply

    It may be of little comfort to you right now, but your posts have been as informative, enjoyable, and inspiring as ever. Your writing is so learned that it makes you a joy to read.

    Everything but healing and being good to yourself can wait.

  32. Kathy
    | Reply

    “Life is what happens when you had other plans!” someone said & it’s true. I was diagnosed & treated for triple negative breast cancer in 2004-05 (chemo, radiation, several surgeries) & I vividly remember the experience you are describing. Be good to yourself, put your recovery first above all other concerns & know that you will be healthy & strong again in the future. You have my best wishes for a full recovery! Kathy :o)

  33. Amanda
    | Reply

    There are so many wishing you well above, that there is really nothing left for me to add. Other than if you need it to convince you that you are doing the right thing, here is another vote for you putting your health before the book!

    Look after yourself, get well soon, and I’m another who is really looking forward to the book, whenever it might be finished.

  34. Anna Watson
    | Reply

    My dear lady your health and life are far more important than any book but when it does come out it will be a celebration of your recovery and your enormous talent. Take great care of yourself. with love Anna

  35. Helen S
    | Reply

    I was just looking for news of the book and came across this blog post. I’m sorry to hear that you’re not well and I’d like to add my voice to those wishing you better health and reassuring you that you should put your health and comfort and your own priorities first and not feel pressured by your readers. I look forward to reading anything you write, when you’re ready to publish it.

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