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