All posts by CancerMama

I am a mother to an amazing Cancer Kid Griffin who fought and beat Rhabdomyosarcoma, an aggressive type of muscle cancer. I write a blog to document our adventures as well as to help other families like ours!

Hospital Tips for Parents with Sick Children

Welcome to the wonderful world of Children’s Hospitals filled with sick children. Please wash your hands.

Here are some tips to survive this so-called fun Hospital life:

The basics

If something is in the room, it should serve at least 2 if not 3 functions. There is very limited space for storage in a small hospital room, even worse if you are in a shared room. So everything there must have a purpose, the more, the merrier! For example, we would bring 3 or 4 quilts (kid sized) that wonderful crafty ladies would donate to the hospital. We LOVED these quilts! Not only do they brighten up the room but they kept my kid warm! They could also be rolled up and used to prop up a sore leg, or head or whatever, They could also be thrown over the top of the crib (or just one side) to stop light from coming into the crib during nap time. They also could stop drafts of cold air if the A/C was up too high. They were also good for cushions when my son barfed on his car seat and I had to take the cover off and we still had to drive home! The possibilities were endless with these quilts! They are super durable (easy to wash, multiple times a week) And they still adorn Griffin’s bed today at home! :)

We did the same thing with pillowcases! We were given these wonderful bright pillowcases from a local quilting shop. At first I didn’t know what to do with them…well…they became my MUST HAVE item in the hospital room. From toy bag, to barf bag, to spill cloths to blankie in a pinch. (think sleeping bag in the stroller!) These were WONDERFUL! Plus, it brought a little bit of home. A familiar bright orange and lime green fish pillowcase always made him smile!

Then there are the little things like books! If you pack all different sizes of books, they do not pack well together, but if you stick to a certain size, like 8″x11″ for example, they will pack nicely and always look neat and tidy. Also a larger book like that can be used as a snack tray in the bed, or a table for guests to eat on their knees! Need to write a note? Hey! Now its a desk! And think board books (or something durable like that) Something you can disinfect or clean puke off of!

Same with people. This is not a social club, there are SICK CHILDREN trying to get better. If you are not here to help, get out. Visit in the lounge! I know this sounds harsh but in shared room, visitors get in the way, spread germs and annoy neighbours! Young children have odd nap times, older children can get embarrassed, no matter the reason, so hang out somewhere else!!!

Colour (yes, I’m Canadian, we spell it with a U, lol)

Our Children’s hospital rooms were very…blank. I couldn’t stand the white and the beige, it made me feel sick just thinking about it! So we brought several things to brighten the room, but also had to serve at least 2 other purposes to be allowed in the room (limited space) See above, multi uses for quilts, and pillowcases. But things like crafts serve as an activity and a distraction, but can also be hung off of an IV pole or stuck on the door to brighten someone’s day! Think like a child, add colour and life to the hospital room. It can’t hurt!!!

Journal

Please keep a journal or notepad in your child’s room. Quite often, I would be out (going pee or foraging for food) and a specialist would come in looking for me. My husband would struggle over the name. Ummmm, it was Doctor…uh…it could have started with an H? A journal means you can keep track of who comes in, new information for other family members, if meds were given on time, what doses and properly (you would be surprised how badly this went wrong for us! Please ask the nurse what is going in the IV and how much!) Also you can track how your child is progressing. The doctors would ask if his eye is more swollen than it was on Thursday…uh…I can’t even remember what it looked like yesterday! Keeping a journal of symptoms, when things happen (when was your child brought into the ER? When did that surgery happen? Who was the surgeon?) etc. It will help you in the end! TRUST ME!

Food

Good food in a hospital is like water in the desert. Its worth gold, its expensive and its hard to find!!! Bring your own. Most hospitals have a place for you to store food. Use it. Bring veggies. They are the most expensive and usually in the worst shape (wilted and old or covered in chemicals…yuck) I thought at one point I would get scurvy from lack of fruits and veg! Bring as much “survival” food as possible, like granola bars, trail mix, rice cakes, soups in a cup, juice boxes, crackers etc. Munchies that are good on the stomach too. Chemo makes the belly upset (as does stress) so we as a family needed non-spicy, belly friendly snacks a lot.

Ask

Yes, you are an amazing Mum but everyone needs help sometimes. Asking for help is not a sign of weakness, it is a sign of SMARTS! Ask your Clinic nurse for tips and tricks, ask your social worker for additional funding programs

Friendship on our Level

A friend told me something powerful today.

That if I wasn’t here, she wouldn’t still be here.

Let that sink in for a moment…

That if I wasn’t here, she wouldn’t still be here.

That if I wasn’t here, she wouldn’t still be here.

It took me aback for a minute. I took it like, if I wasn’t here, neither would she be, as in like…life. It could go so many ways, suicide? Running away? Wither up and dying from my lack of horrid jokes and hummus desk snacks?

She said it seriously, with tears in her eyes. I was speechless for a moment. That is quite a powerful message to hand someone…without an explanation. But that significant message was oh-so precious. It must be handled carefully, like a delicate orchid and treasured for the meaning behind it. It is not something you can laugh off or pish posh.

If you weren’t here, I wouldn’t be here. Think about it.

Looking back on it now, I believe she was speaking of work, like she would have quit her job by now. But either way, it is quite the statement.

She values our friendship so much that my simply being here, alters her life, her path, her choices. That my dear folks, is friendship at its most deepest and cherished level. We are not simply co-workers that sit beside each other and fill our days with idle chitchat. I care about her life, I feel like I know her daughters and mother on a deeper level than I actually do. I feel her pain and I share her shining moments. We get a kick out of word play and grammar puns, she is my go-to gal for English questions, like, “do you ‘bare’ with me or ‘bear’ with me? Either way sounds not too fun!” She cares about others, to the point that she puts herself out. She will stay late after her shift to finish your conversation and she slips you a homemade concoction of essential oils when you have the sniffles. She is older than me by a generation I would say. One of her daughters is my age and yet, I don’t feel “mothered” or that generational gap that I feel with other older people…she is just…her. Beautiful in both mind and spirit. She often gives me pause. She will say something or forward me something to read and I have to actually think about it before I respond. She understands life differently than most. She understands life on a different level than most. She gets what is hidden in-between the lines and words and interprets them for me. She stops and looks at sunsets and frost patterns on  windows. She sees the beauty that most of us just walk by without notice. She literally stops to smell the roses. She’s like a Buddhist monk hidden in a little lady’s body who wears 2 coats in the winter for quite logical reasons.

Cancer has taken so much from her and although we have cancer in common, both being caregivers and supporters, our journeys have taken very different paths. Our roads with grief, guilt, stress and eventually healing has been rocky and bumpy and filled with potholes. But we share it together, over cold leftover toast and a cuppa tea.

She has seen some dark places but she has also lived in the light. She married her very best friend only for him to be taken away by cancer at a young age. You can tell his presence is missed daily and also deeply. She lights up when she tells stories about him. There is a twinkle in her eye that is rarely there…it is great to see. And yet, the pain is evident. She sometimes reminds me a granite boulder. Strong and powerful, hard to break and why would you want too, as the colour and texture is breathtaking. And yet, there is a crack. A single, small, chip in her granite. The water gets in, year after year, the fall of winter and the rise of summer brings this crack to the surface, getting bigger, more significant and stands out. It is absolutely heartbreaking to see a chip in a perfect piece of granite and not be able to do anything about it. No amount of duct tape, hugs, tea or alcohol (my go-to fixer uppers) will fix this crack. It will always be there. That is what cancer does. Cracks a perfect life, splits a happy marriage and family, chips a woman until she is on her knees baring the weight of all these broken pieces on her back. This is not weight that anyone else can carry. I hope with time and support and love, she will be able to stand tall again. Some days are worse than others, for both of us. But I think, together, we got this…

We may differ in so many ways, her husband died, my son survived. She struggles with loss and loneliness, I struggle with clinginess and neediness, I love pretzels , she threatens my life if I mention them and she is Scottish where I am English! It is amazing we can even sit together! And yet, as shitty as cancer is, I feel like this friendship is something amazing that came out of it.

And on some levels, if she were no longer here, a very big, granite sized piece of me would be gone too…

And please remember, no matter how alone you are feeling, you are never, ever, ever alone. Please reach out…

XOX

Find your Cancer Hobby

Find Your Cancer Hobby!

Rainbow Blanket

For pretty much my entire childhood my Grandmother would try to teach me how to knit. I remember spending hours upon hours in her basement, frustrated to be kept indoors while the boys were outside playing. I thought knitting sucked and hated it. Fast forward 20 (cough..cough…or so?) years and my 22 month old son was diagnosed with Rhabdomyosarcoma. My world was flipped upside down…as I stumbled through life, trying desperately to grab anything that felt “normal” I tried knitting again in the hospital as my son slept off the chemo. My skills with two needles is severely lacking, I had trouble keeping the proper tension as my life would shift from high to low in a heartbeat. My grandmother now suffers from dementia and I never learned how to cast off so the never ending scarf is approx. 12 feet long. It is as shapely as a curvy lady with a magnificent hourglass figure. Not very desired in the fibre arts, but it’s my chemo scarf and it’s hideous but I wouldn’t change it for the world. My stress was taken out on those stitches. The hours ticked by as my needles clicked together. That sound still reminds me of my grandmother.

Fast forward two years, my son is cancer free and recovering wonderfully! And I, as a Cancer Mama was not. I suffered from depression, PTSD and survivors guilt. I was trying very hard at keeping afloat but having serious trouble with sleep and “thinking” about things. I would lie awake at night haunted by what I had seen, the other cancer kids we had lost and how I could possibly be happy when other kids are suffering.

One day I woke up and thought to myself, I’m wasting my time, if I’m going to be awake, I might as well be DOING something! I ordered myself a set of cheap crochet hooks and some (horrid) yarn on line determined to teach myself how to crochet. I figured I could stay up all night crocheting chemo hats for the kids at the clinic. At least my suffering would be of use!!!

That one little decision changed my world!

My Survivor Griffin dropping off the hats my crochet group made! Spreading the love!
Cutest little baby hat ever!

Now, a year later, I am a full blown crochet addict! And proud of it! I have started a crochet group in my hometown as people from all walks of life gather to gab and learn. My stress is pretty much nonexistent now as I know my hook and yarn will be there for me. If I’m feeling anxious at the doctor’s office? I whip out the good ol’ yarn bag. People young and old ask me what I’m doing, what I’m making, I make friends wherever I go! It opens up the line of communication and brings awareness to childhood cancer as I tell them I’m making chemo hats for the kids.

 

 

 

Road Trip Crochet!

Stressed out by scanxiety while travelling to your hospital? Crochet a granny square style blanket to keep a chemo patient warm in those chemo chairs! My husband calls it road trip crochet! (Not while you are driving of course! Yikes!)

 

 

Crochet seems to me anyway, easier than knitting and I am able to give someone something that I made with my own hands and with love. When I hand over a blanket, I know it took me hours and hours to make. I hope they love it as much as I do. It’s like giving someone a homemade hug they can take home!

 

 

 

Yarn friends are odd friends! Mary and I doing a little retail therapy before her surgery!

But the most important lesson of all? You have the power to change your life. You really, seriously do. Yes, I know crochet sounds ridiculous. But find your hobby, find your love, painting, sewing, pottery, tattooing or gardening, whatever makes your heart sing! And make some amazing friends along the way!