I’m talking real sick: not moving beyond my bed, bathroom, and kitchen, massive sweats when my fever breaks, my entire head is stuffed with snot, and all my muscles ache sick.
This is the flu if you are a cancer patient.
I could be admitted to the hospital for “supportive care.”
This is intravenous fluids to keep me hydrated until the virus runs its course.
I am at risk for dehydration.
I’m working to drink 12oz. an hour to prevent this.
I’ve finally realized, I don’t have to drink water. I can drink whatever hydrating I like. If you find yourself in the same situation, even if you just have the flu, drink anything: Gatorade, powerade, water, apple juice, anything hydrating.
I love RW Knudson’s spritzers. Thank you Dr. Houde and all the people at the ortho office in Claremont for introducing me to these in a care package.
I’m chugging red raspberry and cranberry organic 100% juice spritzers as we speak.
Hallelujah to you.
My drinking is complicated by an oral thrush in my mouth that I’ve been desperately trying to get rid of for weeks and ulcers due to graft vs. host disease.
Thrush is a common problem among the immunocompromised. According to Wikipedia: Oral candidiasis is an infection of yeast fungi of the genus Candida on the mucous membranes of the mouth. Oral infections by Candida species usually appear as thick white or cream-coloured deposits on mucosal membranes. (http://en.wikipedia.org/wiki/Oral_candidiasis)
Graft vs. Host disease is far more rare. It occurs specifically with a bone marrow transplant, more specifically, it happens with an allogenic transplant (unrelated donor) who is mismatched (not exactly compatible) and may be acute or chronic.
Wikipedia is also a great resource on the subject. It includes links regarding many complicated aspects, as well as links where the disease is addressed in popular culture, such as an episode of House. See it at http://en.wikipedia.org/wiki/Graft_vs._host_disease.
It cause ulcers and damage most commonly to the skin, eyes, and mouth. I have slight problems with all three. Eyes become scratchy and painful, like a person is rubbing sandpaper on your eyeball. It can be relieved with eye drops. I use these a few times daily whether I feel the pain or not.
I don’t want to go blind.
My skin has a rash. Generally this is seen on your back, legs, arms. I have rashes here also, but it is worst on my breasts, specifically at the skinfold where my breasts reach my ribcage.
I’ve heard something similar referred to as “chub rub” by my friends who get chaffing in this area. I’ve seen a far worse case where a woman with peripheral vascular disease had an ulcer that formed a whole in this area.
I almost passed out treating that one.
I use lotion at least twice daily to prevent this from worsening. I use LUSH lotions.
As far as my mouth, well, that’s a big problem. Pain could stop me from eating and drinking. This is what pain control is for.
If you or someone you love is experiencing this, this is not the time to be a hero and look tough. It’s time to do whatever you need to do to eat.
If the only way that can be done is to load up on narcotics, take the medication. If the is still a problem with intake, go to your doctor or the emergency department.
People die of the flu.
The pain and aches can be so severe I refuse to move, even to roll over. Lifting my arm for a glass to drink takes all my strength. I can’t even sit up. I certainly can’t walk to prepare my own food.
Every action, every movement, seems to be a monumental tasks.
Having experienced this for years now, I’ve dealt with this in many ways. I’ve been admitted to the hospital. I’ve had my sister or my mother prepare food and spoon feed me.
Avacodos are the one food you can solely survive on. I eat a lot of guacamole.
I eat hummus with soft multigrain tortillas. I eat cucumbers. The coolness from the fridge soothes my mouth.
People make me smoothies with protein powder (carnation instant breakfasts are my favorite) or ensure blended with yogurt and fruits.
Vanilla soy milk, vanilla carnation instant breakfast, rasberry yogurt and a banana makes my favorite smoothie. If there is no caretaker and no energy to make this, I can eat sorbets or yogurt.
I eat whole grain rice (Uncle Ben’s has a 90 sec version) that I combine with refried beans (It’s in a can. Taco Bell makes a brand sold in the supermarkets).
I can make this alone at my sickest.
Tyson has frozen grilled chicken that could be cooked and thrown in.
I eat eggs with milk, cheese, and salsa thrown in.
All of these foods are soft. They do not irritate my mouth. They also possess a combination of nutrients that will allow your body to thrive and heal.
I try to get my protein, whole grains, fruits, and vegetables all together in the easiest form possible.
I also actually like what I eat.
This is my master plan for helping my body help itself, and hopefully, keep me out of the hospital in my nice, cozy, clean (thanks mom) house.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."