In today’s time, there are ribbons out there for everything. Cancer is no exception. Most people immediately think of pink for breast cancer, but did you know that plum honors caregivers? I had no idea that dark blue represented colon cancer – even after my own diagnosis. It wasn’t until a chemo buddy brought me a lovely dark blue bracelet that I learned I was blue.
I think of my fellow cancer survivors as family on a certain level. After all, when you have shared the intimate details of your diagnosis, treatments, and everything that results from it, you can’t help but develop some strong friendships and adopt a few new family members along the way. Some you are close to and would confide your deepest darkest fears while others are distant relatives. The people that you know but don’t really talk to, but you’ll be polite and will answer the questions asked. And as with all families, there will be some bickering.
I was caught a bit off guard by something that comes up every October and March – breast cancer awareness and colon cancer awareness months respectively. I am not one to think that I will boost my self-esteem by putting others down. Along the same line of thought, I had never felt that colon cancer was any less important than breast cancer just because the latter had more attention. I suppose that was why I was truly surprised when I started to see resentment from some of my cancer family members towards breast cancer. To me, just because they have been more successful in drawing attention to their disease does not mean that what I have to deal with is any less of a challenge. Long ago they faced the same stigma that made it taboo to talk about. At the time, ladies didn’t talk about their boobs! Our taboo is that people don’t want to talk about poop and fart parts (except for most little boys). My husband brought up a very good point on the topic. He opined that an overwhelming majority of those afflicted with breast cancer are women over 30. That means that they are somebody’s mother, daughter, sister, or wife. It is a very natural (and some would argue biological) reaction to want to protect them and to have an exceedingly strong draw to do everything that you can to protect that person from any fear, pain, or discomfort. Colon cancer does not discriminate between men and women. That is not to say that we do not want to protect our fathers, sons, brothers, and husbands. It is simply that the compulsion to do so is not usually as visceral a reaction.
A friend shared with me that her cousin was facing her own cancer diagnosis. My mind immediately raced back to the first days (weeks really) of my own diagnosis. I couldn’t help but recall the shell-shock and uncertainty that I felt. I think the most frightening thing for the majority of those facing a life threatening disease is simply not knowing. This encompasses the questions from “Am I going to die?” and “What’s going to happen to my family, especially my kids?” all the way through “What am I supposed to do next?” and “How do we treat this?” In all the confusion, there are so many more questions that you don’t even know to ask like “Should my surgeon be board certified?” or “What should I expect after surgery?” and “How can I be my own advocate?”
I’ve managed to go through quite a bit -7 surgeries, hundreds of various doctor appointments, 30 rounds of radiation, dozens of rounds of chemo…the list goes on. I’ve learned so much along the way from experience (both mine and that of my fellow survivors) that I was compelled to share my stories with anyone who wanted to know more. This serves two purposes: (1) Awareness – Colon cancer is such a preventable or treatable disease with early detection; and (2) I wanted to help others through their periods of uncertainty.
So when my friend asked about some ideas for a care package, I couldn’t stop myself from giving her advice on other “getting started” issues. Here were my suggestions:
Foods – eat what sounds good, but she may want to avoid her absolute favorites. If you eat what you love and nausea from chemo kicks in, it may no longer be her favorite. Also, chemo changed the way things tasted to me and that’s not the way she’ll want to remember her favorite foods. Exercise – this is really counterintuitive when you already feel like crap, but so many of my friends said that if they forced themselves to get up and do even 10 minutes of exercise, it really helped to keep nausea at bay and had the added benefit of making them hungry. Medications – Immodium is the obvious for diarrhea, but Lomotil helped me when Immodium didn’t work. Something to do with the different ways the drugs work. Ativan is also something she’ll want a script for. Sometimes my stomach muscles went into overdrive and Ativan was great to calm it down. It also will help her relax if she’s got any anxiety. Dulcolax is good to have on hand too. Sometime things just go in the other direction (particularly with radiation for me). Smooth Move tea was great for me too. It was really gentle, but careful on how strong she brews it until she knows how effective it is for her. It looks like there’s various skin things that can come up. I would avoid the perfumed soaps and use Glycerin based soaps instead. It makes an incredible difference in keeping the skin hydrated. I lived by Lubriderm products during chemo, especially the sensitive skin stuff. Make sure she asks her doctors about creams to prevent radiation burn. I believe that the one I used was Aquaphor. Just make sure that she showers before any radiation treatments to get rid of lotions/creams. They’re great between treatments to help the skin, but they can cause them during treatments. Take care of hands and feet in particular. It sounds like hand/foot syndrome might be a side effect. Again prevention is fabulous if she can swing it. Use a balm overnight under spa gloves & socks (basically thin cotton) to keep them hydrated. If your cousin is getting chemo through an IV instead of orally, she may want to get a Power Port instead of a PICC line or going through the arm. It made chemo so much easier for me! Plus it can be used for the contrast for CT scans.• Smooth Move Tea • Chemo “go bag” (if she’s having infusions instead of oral chemo) – have fun with the colors/design, just make sure it can contain stuff for chemo days. • Light but warm blanket that she can put in the go bag. I tended to get cold really easily when I was on chemo. • Fuzzy socks, warm scarves, knitted hats – anything to help keep warm. • Glycerin Soap • Bag balm or Udderly Smooth with spa gloves and socks • Various Crystal Light flavors – hydration is SO IMPORTANT during this time. • Pickles – funny, but a friend does shots of pickle juice because of all the electrolytes in there help to replenish fluid levels and keep hydrated • Coconut water – also rich in electrolytes and tasty. My favorite is Nirvana. Expensive, but I can totally taste the difference. • Snacks for chemo days. • Jewelry – each cancer has its own color. http://www.choosehope.com/category/cancer-jewelryIt doesn’t matter one bit that she is going through a different type of cancer. Her desires to fight to see her children graduate are no less ardent than mine and her wanting to be a part of the group with long-term survival is just as fierce. While the road that she travels on her cancer journey will be unique, there are some similarities and overlap where I can help. This is how I choose to pay it forward.