This came about after a ‘share the picture of a pink ribbon to show you care about people who have or have had cancer’ thing on social media. It’s always well-meaning, and meant to be a show of support. I hate those ribbons. I’ve had cancer. This is what I posted- but it got too long, so now it’s a blog post !
…..OK, this got longer than I expected. It’s a well-meaning thing to ‘support’ folks who have cancer- but I just want to forget it. NOTHING is the same after cancer, even when everything goes as it’s supposed to. Maybe I’m weird, but I loathe those ribbons. I’ve had cancer, as have SO many family and friends. Each cancer has its own color ribbon, but tits get the most attention (my mom had bilateral mastectomies, lung metastasis, and brain metastasis- lived for 17 years, the last 10 with dementia from brain radiation). Dad- thyroid, lived through that. Others who lived- cousin on dad’s side- thyroid, close friend of dad’s- now fighting multiple myeloma, dad of a friend-chronic myelocititc leukemia, cousin’s wife-Hodgkins, wife of another cousin- non-Hodgkins, mom’s brother in law- lung & brain, mom’s dad- lung, cousin’s husband-prostate. Died- 7 year old son of dad’s first cousin- leukemia, cousin-neuroendocrine colon; other cousin, pancreatic, mom’s brother -esophageal, wife of mom’s brother-lung, aunt-cervical, close friend of dad’s- ovarian, bio-grandmother-uterine, Phil-kidney & brain, former boss-not sure of site, dad’s friend’s daughter- brain, former co-worker, leukemia, former administrator- brain, co-workers 11 year old nephew- APL (more on what that is in a minute), co-workers 8 year old niece – glioblastoma multiformae (brain), local anchorwoman- APL, etc. The list goes on; add those I saw when I was working- can’t begin to count, but remember melanoma killing a 30 and 40 yr old (one of those in a month), pancreatic, liver, bone, etc.
Ribbons ‘do’ nothing. Everybody is “aware” of cancer. What people can do to SHOW they care? A load of laundry, grocery shop (but ask what the person can eat- and it might change every couple of days), vacuum, clean out the fridge (for someone who can’t eat because of chemo and the various issues w/eating, from blistered mouths to blistering asses when that chemo burns through it, cleaning the fridge is horrible). Other things- pick up prescriptions, change the sheets, take the pets to the vet, take the trash out, help with writing out checks for bills so the person just has to sign them (dad found that very helpful), tidy up the area where the person spends most of their time- and if they just want to be left alone, do that. If you don’t know what to do, ask. And if the person is just too tired to even begin to think about what they need, and you see something is out of sorts, ASK if that is something that would be helpful to have done. Help with bathing (back, feet, and legs are hard with no energy, or longterm medication access devices that need to be kept dry aside from prescribed cleaning and dressing changes)… I’m surprised I didn’t have a green fog around me after being in the hospital for 6 weeks- between horrific fatigue, constant IV meds, 25 infusions of blood and platelets, and a PICC line, I relied on bath bags (basically big baby wipes with no-rinse cleaner). I needed a sandblaster when I got home, but was still very tired- so I chiseled a bit off at a time.
“Health Basket”- some things that most people could use- ginger ale, 7-up, Pepsi, jello, pudding, sherbet, chicken noodle soup (actually chicken and stars is easier to keep on a spoon for someone who is exhausted), saltines if mouth sores not an issue, alcohol-free mouthwash, a very soft toothbrush, no-slip socks, easy to watch movies (attention span is shot from fatigue), baby muslin washcloths (terry can be too rough), etc. During the early days of chemo, it’s not the time for the family favorite recipe for ‘lava’ Buffalo wings, nachos, or many foods that are hot in temperature or seasoning, because of mouth sores. If the person’s appetite is next to nothing, don’t get diet products unless they can’t drink/eat the regular stuff (dad actually puked the regular Sprite, as he only drank toxic artificially sweetened sodas- but he also had an easy puke trigger, and the anesthesiologist wouldn’t listen to his sensitivity to midazolam, and gave it anyway- he always puked with that, and that doc was told).
If someone has an increased risk for infection (from actual cancer or chemo side effects), DO NOT bring fresh flowers, plants, fruit/veg that isn’t peeled by YOU, any water that isn’t bottled, and never go see someone on chemo if you have even the slightest possibility of being sick- your cold could literally kill someone with low neutrophils (a type of white blood cell).
The fatigue is indescribable. If you know the person well enough, ask if they need help finding social services to help with bills (social workers have a lot of info on resources for various issues)- cancer is horrifically expensive. One of my oral meds that I was on for 20 months (daily) was $10K/month. My copay was $450, and not doable on a fixed disability income. The social workers found a pharmacy that would fill them (thinking the Lymphoma & Leukemia Society would honor their agreement to pay my copay- they refused because THEY didn’t know that AML subtype M-3 was the same as APL – same exact thing, but they only acknowledged AML subtype M-3-so backed out; the pharmacy ate the costs until I could find a part D, where my copay was ZERO dollars…), or help someone find a different part D plan if they’ll be on chemo into the next year, if they’re on Medicare is also very helpful. I couldn’t leave the hospital without that medication. Dad literally had to bring the first prescription TO the hospital before the doc let me leave the building. The differences in part D are huge- it truly is worth checking them out on medicare.gov.
I remember being too tired to even get up from the recliner to go to the bedroom at night (no TV in that bedroom) and often just sat there for most of the night except to go to the bathroom- which is when I usually made it back to bed, unless I had to turn off the TV- then it was being stuck in the chair until I had to go to the bathroom again, and turned the TV off before I got up. It was too exhausting to think about doing more than one thing at a time. Somehow, I got myself to the hospital at 6:15 a.m. every M-F for two 5-week cycles of arsenic, and the follow-up appointments for another full year of daily oral chemotherapy, as well as a total of six years of follow-up appointments.
Some things patients taught me- sometimes Frosted Flakes at 3 a.m. is the only thing that has sounded good for 2 weeks (so I sent the aide in search of Frosted Flakes, and in the end, sent him to the store with 10 bucks and told him to get as many as that would buy- back then it was 4 boxes). Sometimes gently pulling the hair that is falling out gives a feeling of a bit of control- I had a patient tell me that he was just ‘even-ing things up’. The patient decides how bad they hurt- if it’s time, medicate; if not, call the doctor. If they have lost control of bodily functions, it’s not personal if the patient wants someone with more experience to help clean them up- the younger ones didn’t mean to sound ‘short’-they just needed time and experience (I was generally the one asked to clean them up, and I was OK with that- the younger ones didn’t get into trouble- they meant no harm and were simply new… they were very good, especially being so new- but the patient wanted someone older).
And sometimes the most helpful thing to do is just to listen IF the person wants to talk. The topics might be very hard – but someone needs to know what they want if they die (dad and I had several talks over the years, and especially the week before he died, like he knew… that info was priceless). There are no do-overs when someone dies. Knowing what they want is the last gift you can give them. If it’s legal, nothing should be off limits unless it’s just logistically impossible, and the person wasn’t thinking about that- just get as close as you can to sending them off how they’d want to go if they were there to participate. Humor is healing- it’s not ‘wrong’. IF the person wants something silly, go for it ! If they don’t want people standing up and telling stories, don’t include that- suggesting that those who want to honor the person with stories meet up together at a restaurant or park (gotta mind the COVID-19 rules right now).
But maybe most important- don’t do anything you wouldn’t normally do (unless it’s a risk to the person with cancer). Keep relationships a constant during a time of seemingly endless chaos. If you used to visit every week, go see him/her. If the person has had disfiguring surgery (especially facial, or gender specific), it can be a shock if the surgical site is visible. The person you knew is still in there. Treat them like they are. Don’t foster a victim mentality. Every cancer patient is a survivor from the minute they are diagnosed. Even if you know the statistics on some of the more vicious cancers, it’s so important that the one with the cancer is allowed to believe they have a chance. And ‘terminal’ or ‘end stage’ just means that’s what the person is likely to die from… not when.