Every now and then people comment on the posts I write or on the pages themselves on the website here. More often than not, it’s someone trying to create a link to their product and so when I see the notification that a comment was made, I assume it’s SPAM and I don’t rush to check it out.
Yesterday was different. Yesterday, when the notification came in I felt the urge to look, and this is what I found…
My 52 year old husband Pete has been fighting colorectal cancer since Dec. 2012. We started this journey while traveling in Fl.
My question is how do you know if you are getting the best care available. He is always in pain. None of the meds they give him seem to control his pain. I can not find info saying if this is normal.
How do I get my act together so he can beat the odds not just go with “normal procedure”?
Thank you for your dedication and help, Celeste Comeau
I answered as much as I could on the spot, but skirted around the one question, because I wasn’t sure (in the moment) how to answer the question of “how do you know if you are getting the best cancer care available?” This one is difficult for me because to me, it’s a no brainer that I got the best care available, so I head to sleep on it, and consider what it would be like if I hadn’t.
How do you know if you’re getting the best cancer care available?
- If your oncologist can look you in the eye and not only tell you he/she can fix it, but can spell out to you just how that’s going to happen and (approximately) how long it’ll take (and then actually follows through).
- The treatment center supports and offers complimentary or integrative medicine, like yoga, acupuncture, massage therapy, nutrition guidance, etc.
- If they handle all the appointments you need made so that all you have to do is answer the call when it comes and put the appointment in your phone when they call to schedule.
- If they take the time to explain to you all the dangers you’ll be facing. What comes to mind here is one of my nurses, Rachel, shouting at me when she caught me absentmindedly holding a pen in my mouth. She went on to remind me that while you’re in chemo you are highly susceptible to germs and a pen is full of them. “Keep everything like that away from your mouth and eyes.” she’d say.
- If they take the time to explain to you what side effects to expect, how important it is to keep on top of the side effects, to keep them under control and make reasonable suggestions on how.
- When you are around them, you feel safe, loved and respected.
A bonus would be if they offered some kind of patient advocate service that helped you with all the paperwork and billing challenges, but that would be utopia and we’re talking about the best cancer care in our so called “real world”.
Which brings me to the other question…how do you know if you are giving yourself the best cancer care possible in order to beat the disease? That’s what The C Card and Me is all about. It goes into detail, but I will break it down, right here and now.
- Show no Fear – Fear, stress and worry, do nothing but weigh you down and will not improve your outcome in any way. If anything the effects can be detrimental, so stop it right now.
- Look at the Upside – Every cloud has one, even this dark and looming one. Find the positives in your situation. I didn’t have to work. I got to lounge about and watch movies. This was heaven for me.
- Lay your cards on the table – Tell your friends and family what’s up, what the plan is and what you need from them. Others freaking out doesn’t help your situation either, so give them something to do to help.
- Think spring, cuz it’s time to clean – Clear out the clutter in your home and in your life. Home should be a haven that’s easy to manage and nooooo negative (or clingy) people should be allowed within a 20 mile radius of it or you.
- Revamp you medicine cabinet – This list is directly from Chapter 7 and it’s of all the products I used to keep on top of the side effects.
- Make friends with Mary Jane – If appetite is a problem for you (it wasn’t for me) then get your card and get puffing. Just like in all those B movies, pot gives you the munchies and right now, more than ever you need to eat to maintain your strength. Just stay away from your favorite foods and trade them out for spicy goodness. I had a bottle of Cholula hot sauce on hand at all times and doused on pretty much every meal.
- Germaphobes “R” Us – Keep everything away from your mouth and eyes, stop sharing plates, spoons etc and be aware of every door knob, hand railing and pen your hand comes in contact. I wore long sleeves and just put my hand inside whenever I came across these. Avoid being out in large crowds, restaurants, bars, saunas and no eating raw meat, fish and wash all raw fruits and vegetables before eating them.
- Hydration is the new Mantra – drink at least half your weight in oz of water every day and preferably mineral water. Mineral water helps to flush toxins out of your body faster. If you are 180 lbs then drink at least 90 oz of water every day. I know…just do it.
- Sweat like a Pig – Gyms can be germy so be careful. If you have room at home then get a rower or a stationary bike or whatever works for you, but after your chemo cycle is finished, you need to sweat that crap out of your system or it piles up and you will ache from head to toe.
- Have something to look forward to – I imagined all kinds of trips I would take after I got through all the chemo and everything. Italy, Ireland, Mexico to swim with whale sharks. Map it out. You’ve got the time to do it now, so let your imagination run wild and then start planning it. 8 months after I completed my last cycle of chemo I was in Italy, on a little boat with a good friend and a hot Italian guide, swimming in the ocean and celebrating my birthday, the anniversary of the day I was diagnosed stage IV. Next month I’ll be Ireland, playing music, hanging with friends and capturing it all with my Nikon. Never underestimate the power of having something to look forward to.
- If money is an issue then get it under control by contacting all the agencies out there that offer support. There were a couple times when I could pay rent, but that was it. A local agency gave me gas/grocery cards and introduced me to an advocate who went through all my bills (medical and otherwise) and got a 10,000 reduction in my medical expenses and helped me to re-organize it all so that everything essential was auto payed and all I had to think about was getting well.
Look, we’re all going to die one day (at least our bodies will), but it’s not like it’s some evil thing chasing us down. It’s just a fact in the cycle of life. I asked myself “what if I only have a year left? How do I want to spend it?” I chose to fight and while I was fighting, I still enjoyed my life. I moved to a little cottage across the street from the beach, because I love the sea and the salt sea air was good for me. I sat under a huge umbrella and watched the surfers glide along the waves. When my blood count was up, I joined my friends for dinners out or rode my bike around the neighborhood. I delved deeper into my passion for photography and picked up my guitar every day and played. All things I had the money to do, but never seemed to have the time for in the past.
This is your wake up call. Don’t let cancer or anything else get in the way you of you living an authentic life and enjoying it in the here and now. Capiche?