The Sewing Guide to Cancer (and other long term illnesses) – a book review

I’ve been trying to figure out what to say about this book for a while. It hits close to home for several reasons and I decided that the best path forward was for me to write from the heart. So here it is.

Take it from the top

I’ve known Heather for 6 or so years through quilt world but like many relationships in this small industry, there is often some spill over between personal and professional. Heather and I have shared things about our personal lives with one another, have annual hellos at Quilt Market (when I make there!) and we casually stay in touch. Truthfully, I’ve always long admired Heather. She is smart, talented and kind – everything you want in a quilting friend – so it’s an honor for me to review her book.

I heard about the book when…

I learned that Heather and Samarra* had written this book about a month ago. I texted Heather about something unrelated and we began chatting about this incredible accomplishment. The book came out quietly over the summer and I immediately knew I needed a copy. I knew this book was special.

And it is.

Heather shares how this book began

Heather is a cancer survivor and years ago she and Suzanne Woods** had the idea to write a book about projects you can make for anyone going through cancer treatment or managing a long term illness.

The Sewing Guide to Cancer (and other chronic illnesses) is honest and raw and vulnerable. It stems from pain but brings such beauty to the world. The first eleven pages are real, including ever important information of how to help someone with cancer or other chronic illnesses. It’s hard to read and at the same time empowering if you or someone close to you is navigating an awful disease.

The projects in the remaining 148 pages of the book are well curated, simple and useful – an eye mask, cubbies to hold medications, quilts and so much more.

Each project has a full page illustration that Samarra lovingly created as well as a thoughtful statement from the designer, general notes about easy changes to make and tips, like microwave time for a heating pad and reinforcing corners.

Yardage and notion requirements are clear. Size charts are included and the book has tissue paper patterns in the back! Yes, please.

The designers of each project graciously donated their time and talents to this book and all proceeds from the book are being donated to Camp Kesem. Camp Kesem is a camp that helps children coping with a parent’s cancer diagnosis. You can read more about Camp Kesem here.

The truth about cancer and other long term illnesses

Cancer is hard. It is effing hard. It is grueling. It is cruel. It can crush you.

If you’ve navigated a cancer diagnosis for yourself or with anyone else you know how hard it is. I helped my mother-in-law through a cancer diagnosis and recovery so I know. The shock of the diagnosis. Tears. The doctors. More doctors. Opinions. Second opinions. Third opinions. Tears. Scans. Blood work. Surgery. Tears. More surgery. More tears. Port installation. Chemo. Radiation. More blood work. Tears. And follow ups. All the follow up appointments. Even years after treatment ends. It’s a long term illness that requires managing. If you’re lucky, that’s all you’ll need.

I vividly remember how hard the diagnosis and treatment were on my family and me. It’s exhausting and overwhelming. There were days I was away from my husband and kids. I learned a lot – about her, about myself, about cancer. Fight or flight kicks in. It’s real. It’s what keeps you going, even if you are exhausted.

What I wish is that I’d had this book 6 years ago when the cancer journey began for our family. Truthfully, I don’t know if I would have made anything because the overwhelm of caregiving and raising my young family was real but having it on my shelf would’ve been comforting.

But I have it now.

And if I need a project in it to help someone, I have it.

And that is comforting.

Why now matters

Shortly after my MIL completed her treatment I was diagnosed with Lupus. For those of you unfamiliar with it, Lupus is a rare autoimmune disease that attacks healthy tissues and organs. It’s chronic. It’s lifelong. It has no cure, only treatments are available to slow the progression.

Because I carry it well doesn’t mean it is not heavy.

Lupus is hard. Something always hurts. Something is always going haywire in your body. You’re always tired. I don’t nap because I’m lazy. I nap because I won’t make it through the day if I don’t.

Think you’ve reached stasis? Think again. Always adjusting medications. So many appointments. Labs. Follow up. More tests. Crossing fingers that the bad lab results were a hiccup on one particular day and not something getting worse, or some new problem.

Perhaps that’s why this book spoke so strongly to me? All the projects in here are useful to my health journey, too. I’m part of a club that I don’t want to be in. So badly I don’t want to be in this club.

It is personal

Cancer and other chronic health issues are personal. Everyone handles and manages illnesses differently. As Heather said, some friends stay, others leave. Some treatments work, others don’t. Some days are good. Others kick you in the butt. You learn a lot about yourself but you learn even more about others.

Apropos of that, two things caused me to lose my breath while reading this book.

The caregiver and what not to say.

The caregiver(s)

Being a caregiver is hard. When I read this paragraph I broke down in tears honoring the journey I’d been on with my MIL and recognizing the journey my husband and kids are on with me daily. It’s incredibly hard work to take care of others.

It’s also an honor. It’s an honor to be trusted with that task. Not everyone can do it. I’m grateful to my husband and my kids who remind me that Lupus doesn’t define me – it’s just a part of who I am – just like cancer patients. I’m grateful that my family remains by my side and are my biggest cheerleaders. I’ve had some pretty significant lows on this journey and they are steadfast in their support.

Caregivers can come in different ways, too. My sister (oh, my darling, adored sister!) and some close friends (IYKYI) always step up as caregivers, too. They’ve offered incredible support as I’ve navigated this journey. There for a hug. There to listen or give me advice. There for whatever I need. Sometimes just to hurl four letter words into the universe. There’s comfort in that, as well.

I would be in a very different place without every single one of those people and I’m lucky to have them in my life.

What not to say

Yeah.

Sometimes people don’t know what to say and they say the wrong things. I like to believe it’s from a place of concern but don’t say any of this**:

I’ve had people say some of the most egregious things about my diagnosis, including some of the statements above. Truly astounding. If you don’t know someone well simply say “I’m sorry you are going through this” and if you want to help then add “Please let me know what I can do to support you”.

That’s it. That’s all we need to hear.

Closing thoughts

There were tears writing this post. Perhaps it was cathartic? A way to get some things off my chest under the guise of an excellent book?

Either way, tread lightly and lovingly. Be kind to one another. You never really know the journey someone is on unless they invite you.

And if someone tells you they have cancer or some other awful illness, don’t be a dick.

*Samarra lost her fight to cancer shortly after this book was published.

**Suzanne began Lucky Spool Media, the publisher of this book. Suzanne lost her battle to cancer in 2020.

*** Listen, ask me how I’m doing but in a “Hey, how’s your Tuesday” kinda way not a you feel sorry for me kinda way. Unless you KNOW what’s going on with me. Then ask because those caregivers can ask. The rest of you…not so much. Cancer patients and people with chronic illnesses don’t want to be continually reminded of that they are sick.