Category Archives: Tips for a Cancer Mama

My Thoughts as a Cancer Mama, Tips for a Cancer Mama

Hospital Tips for Parents with Sick Children

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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

Coping, Tips for a Cancer Mama

To a newly Diagnosed Cancer Mama

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I Wear Gold 12 Little Hero CHILD CANCER Light T-Sh

So your baby has just been diagnosed with Cancer. Now what?

The Web

Calm down, take a deep breath, now breathe…and get off the internet…seriously. You will scare yourself silly with the horrors you can find on the web. I did.  If you must troll the interwebs, ask your Doctor for trusted sites and stick to sites like the Canadian Cancer Society or the official site for your type of cancer. (Sarcoma Foundation, etc) You cannot trust everything you read on the net and most importantly, you can easily mix up actual fact that your doctors give you with the crap you read on the web. Stick to the internet for things like fundraising or support but leave the info and investigating to the professionals!

Get Organized

Start a binder/notebook/journal. Something to keep track of your child’s day to day. I had a binder that had different sections. The first was a business card plastic holder thingy that I kept all the businesses cards of all the doctors we saw, as well as any other business cards that were important (social worker, travelling nurse, and even the serial number of his port that they implanted!) It was a great go-too in a pinch because I can NEVER remember a Doctors name when put on the spot! LOL Second was  a calendar, on that went all his appointments. Yes, I had one on my phone, but this was the master list. Everyone referred to this and it was all knowing. Next was a chart of his meds. At one point he was on 24 different meds, all at different times, different doses and some were before a meal, some with food, some after. Just thinking about it gave me hives. Once I was able to make a no fail chart, it was actually so easy! We had a little tray that I would line up all the syringes, in order for the day. It actually worked quite well! I even numbered the chart and then wrote the corresponding number on the top of the medicine bottle to help me even further! (some of the meds had kinda the same name so it was hard to tell the difference or the generic name was on the bottle but the brand name was on my chart-non helpful! LOL) Next came all the results. I had all the paper work from scan results, as well as lab results. Whenever we met with someone, I would ask for the readout. I can’t tell you how useful this was! You could actually spot trends in his blood work! AMAZING! And lastly, misc stuffs like camp info, disability papers, etc. Carting around all this info is heavy but it is sooo useful! Now, I mentioned a journal. When Griff was first in the hospital, we didn’t know what he had, just a large, fast growing bump above his eye. The doctors would ask a million questions and I found if I kept a journal, I could better answer those. Like how long has the bump been this colour? When was his last bowel movement, how long as he been on this med? I kept a journal of his daily life. It was great if my hubby was not there, he would know how the day went and which doctors came to visit etc. I would highly recommend it!

Clean

Clean your hands, clean yourself, clean your house, your car, your freaking cat. Clean EVERYTHING. Because your kid will no longer have an immune system, he will catch everything. Scrub your hands, right up to the elbow, clean every toy you have in your house. We even rolled up the rug in the living room, the hardwoods were easier to clean! There are some organizations that will clean for cancer families, but we were not so lucky. My Mum was a godsend and would help me out a lot in the cleaning dept. (and laundry…oh gawd the laundry…)

Connect

Yes, your hair is a mess, but that lady looking at you from across the room? She just wants to talk to another Cancer Mama like her but is too stressed or too tired or too scared to reach out. Children are a great ice breaker. Give your kid a snack and send them to the middle of the room. He will attract other steroid raging children that will gobble up the snacks like sharks! You and the Mamas can laugh about it and it will get the conversation started. I was lucky enough to connect with and keep in connect with some amazing families throughout Griffin’s journey and today they are some our most dearest friends. These Mamas understand what you are going through, something that your friends and family will never truly understand. And that’s okay, personally, I never want them to understand. Its just too heartbreaking.

Support

There are a gaggle of support networks out there for you, depending on what you are comfortable with. (Please see the “helpful links” on the sidebar) Depending where you are, there are groups and foundations. Inquire with your hospital, our Social Worker had great resources. Anything from “wish” programs, to support groups, to Cancer Camps to government funding, there is something out there for you and your family. Just reach out.

Talk

You need to talk. Get things off your chest. I personally found that I did not want to “burden” my friends and family more with the gory truth so I looked for outside help. Inquire with your social worker at the hospital. There might be a therapist or support group that specializes in your child’s type of cancer? I had an amazing therapist that helped me through the good times and the bad. But its not just about sitting on the couch and crying. She gave me great tips to combat anxiety when I’m not in her office. She also gave me awesome tips and “go-tos” (words or sentences to say when people ask you/say something that makes you uncomfortable or is something you can’t talk about at that moment.) Example: When I returned to work, every person I encountered asked how Griffin was. This can be exhausting to try to answer this question, in full, 1000 times in one day. So we came up with an answer like, “it is quite complicated but he is very happy and comfortable at the moment. Can I explain over lunch?” It avoided the hard stuff that made me cry, it answered their question for now and shut them up. win, win, win.

Camp

You might not be a “campy” sort of person, and that’s okay, but the odds are your kid is! Here in Ontario we have Camp Trillium and Camp Ooch which are fabulous free camps for Cancer Kids that lets them be themselves in a safe and understanding environment. Those memories will last a lifetime and the time us Mamas have alone/together is priceless! Yes, it seems like more work to bring a cancer kid to Camp, but trust me, it is sooooo worth it!

YOU

As a Mother, your child usually comes before you always, but as a Cancer Mama, you tend to neglect yourself. Remember to eat. I thankfully had a very good support system that would remind me to eat but not everyone has that. Doesn’t matter if its just a granola bar or a shake. Eat something. And remember to take care of yourself. You cannot look after your child properly if you are a mess yourself. Allow yourself to have a quiet moment for a tea, do Yoga in the hospital room! I even know a Mum who sewed, she brought her whole sewing machine into the hospital when her child was admitted!!! Give yourself an afternoon and get a pedi. You deserve it!!! Yes money is tight, but what is your sanity worth?!?!?!

 

And the most important thing? YOU ARE NOT ALONE. I know it may seem like it, but there are millions of Mamas out there, just like you. We would love to talk to you. Reach out, spread your wings, kick Cancer’s butt and love yourself while doing it!

Hug your babies tight tonight!

 

XOX