Bad Cancer Patient, Observations from the Chemo Chair

MelissaDallas

Glennie, what was ironic at the time is that I still had a whole drawer full of hydrocodone I never took six months before after my surgery. I came straight off a dilaudid pump & would take an Aleve instead of a pain pill when I got up in the morning so I could stay awake for a while. This is with an 11 inch incision up my belly and a partial omentectomy to go with my TAH, salpingo oophorectomy, & appendectomy. Man, that omentectomy is painful.

glennie19

I had a neurologist after a car accident,,, he would give me all the Valium I wanted for muscle relaxant,,, but balked at a few Vicodin!  They can be just so strange. And none of this stuff gives me a "buzz".

Melissa, that sounds like such painful surgery. I am amazed that you got along with just Aleve!

Spookiesmom

when I turned 65 and got medicare, had to change PCPs. DH seemed happy with his, so I went to his guy.

I never did figure out the how, or why, but my LE arm had a major flare. Went to this guy, he asks ME what I thought was wrong! I choke out, cellulitis?

Then when I thought I broke my wrist, I go to office. He comes in yelling get the machete get the machete! He grudgingly sent me for X-ray, didn't get cast from Mon pm to Fri am. It was broken in 3 places.

I'd had enough of him, so changed PCP. Get a call from his office, I could come back if I wasn't happy. Told her that's why I was leaving!

He didn't believe in LE therapy either, wouldn't send me

MelissaDallas

Glennie, I did take some of the pain pills later in the day, but I probably had half of them left

DivineMrsM

One of the most frequent posts I see on these boards are about doctors/nurses/other medical personnel discouraging or denying bc patients prescriptions for anti anxiety medicines. Too many professionals seem to minimize the anxiety and fear that women have dealing with this disease.

I think they ARE trained to respond by saying it's addicting when asked for anxiety meds. I think they don't want to be flagged by regulatory systems for writing prescriptions for too many habit-forming drugs.

What also irritates me is that some doctors categorically deny everyone. Why not look at me, the individual, at my history, ask some questions and decide if I have an addictive personality? I'm in my 50s, never addicted to anything. I've never been an alcoholic, gambler, shopaholic, drug or sex addict, don't smoke, am not a hoarder or obsessive/compulsive. Why would I suddenly jump ship and guzzle all the anti anxiety meds I can get my hands on?

A wonderful nurse practitioner worked with me and finally prescribed buspar, a daily anti anxiety med that helps me immensely and is not addicting. But for several years after the dx, I also took Ativan as a sleep aid; it worked best out of everything I tried. Two doctors hesitated giving me a prescription. These days, it is rare that I take it. If it's so addicting, why aren't I craving a higher dose? The reason: I don't have an addictive personality.

Hopeful82014

Hear, hear! I doubt anyone could have said it any better. Thank you!

I'm glad, too that you've got a great NP and have found something that works so well for you.

glennie19

Well said, Mrs M!  And I do understand the concern about the regulatory agencies checking up on them, but I also believe if you have documentation in the patient's chart as to WHY you have prescribed this anti-anxiety, or pain med,, it will cover your bases.    Cancer is stressful, as are many other illnesses.  There is no reason why most people cannot be prescribed something for sleep and /or anxiety.

DoggieBytes

I was fortunate, my Docs didn't give me any problems with getting a script for Ativan or Xanax. Thanks so much for the info Glennie! Good to know in case I need that info down the road.

You guys are going to get me in trouble.

D.B. Walks into Docs office with "Bad Ass Cancer Patient" shirt on, sporting a few temporary henna tattoos to freak him out a bit, hehehe, then calls snarky Doc "Bobby Boy".

Oh yeah, I can see it now!

Spookiesmom

WooooHooooo

You go girl!!!!!!!! Be sure to tell us how it goes from there!!!!!

Hopeful82014

I LOVE that image, DB! I want to see the video of that visit!

My BS didn't blink an eye when I showed up with henna designs the length of an entire arm. It's the only time she's ever disappointed me. Maybe I should have worn the tee-shirt, too? (They were really pretty, too, very trad. middle-eastern. Sigh. Maybe she was jealous?)

SweetHope

Remember the movie, The Great Santini? Robert Duvall or someone like him as a career, uber military, husband/father...Blythe Danner as wife. I don't recall much, just that he was sooo disciplined and expected the same from family. Well I am married to a Great Santini. When he proposed he said "Becky, marry me. I have great benefits." (My friends and family howled when I told them.)

Over the years I played Blythe's role pretty well; strong, good military wife and mom. Now I have BC and the change in him is dramatic! His clean shaven chin, with Tom Selleck mustached lip is now a full, Grizzley Adams' beard! He still grumbles in at 5 pm, complaining about the idiots on the road. But his nightly dissertation about the numb nuts in Washington is shorter and not as biting as before. The Papa Smurf beard can't hide that he is mellowing inside.

The reason I am telling you all this, has to do with the henna tattoo talk. This Saturday has been set aside as my head shaving day. Santini, of course, will give the buzz cut. Maybe a "high and tight" flattop. Since I can't drink champagne to declare this a true occasion; I would love to get a great henna tattoo. I want to be a Bad Ass.

Will it last until second Chemo on Wednesday? Does it just wash off, or wear out? How do you find a clean tattoo parlor? (I'm giddy thinking about this.)

And Santini will be so shocked!

bobogirl

It will not wash off that soon, Sweet Hope, I don't think. Oooh, I love Santini! I love his proposal, he is so cute! He obviously adores you as he is morphing into Papa Smurf.

Santini fan club! I have got to say, also, that I am in the 'Bad Cancer Patient' fan club. I don't think I was bad enough, in fact!

glennie19

SweetHope,,, I read that they can last a week or a month, depending on your skin.  Top of hands probably a week cuz skin is thinner and you wash hands a lot. Could not find info about head. But a week seems like a minimum!  So you can plan for your appt!  Have seen some great pics of head henna tattoos.  heeheeehee,, the Great Santini becomes Papa Smurf!  Love it!!

We will want to see a pic of the henna tattoo!

Hopeful82014

Sweet Hope, I was told mine would last about a week if I was gentle with it. I was very gentle - no washcloths in the shower, primarily, and it finally faded away to invisibility somewhere between 3-4 weeks later. It did get a shower and gentle soaping every day.

Mine was done with a very traditional mixture that included eucalyptus (it smelled great the first day or two, then faded) and went on quite thick, dried and the thick part flaked off, leaving just the design running the length of my arm.

Mine was done in the middle east, so I've no idea where to find one here - maybe an ethnic community? Maybe the Yellow Pages?







I like your idea a lot, and your husband sounds like a dear.

I like your idea

SweetHope

Okay Warriors, I did my research on a henna tatoo and I am postponing the event until after all treatments. Here is what I found out. There are two kinds of henna: the good is made from eucalyptus leaves; and the bad, called Black Henna, has ink added that is carcinogenic!..and many have allergic reactions. While no needles are ever used, (the henna is just painted on) the longer the "mud" stays on the darker the design. Pregnant women get a beautiful full belly, traditional design tatoo...saw a picture...lovely. But it was suggested that they should get the tatoo during the first trimester as the tatoo is lighter later on because of the ph change in their skin! I did not know our ph balance changes in our skin when pregnant. What about during Chemo? Allergic reactions, no thanks! Not now! Can you just picture me showing up at the Chemo Center with a beautiful, exotic, flowery tatoo on a bloated, bald, red-rashed, old pale Becky!

glennie19

Well, UGH, on that!!  Something to do later on, I suppose.  There are temporary tattoos that just stick on with water. I have used those!  Try this link, I have bought from them before and the temp's are inexpensive. Rub on with water, and rub off with baby oil or rubbing alcohol.  They last for a while too.  You could get several butterflies and have them flying on your head??  A garden of flowers??  Lots of ideas on there.

www.tattoosales.com

 

DoggieBytes

I always had all natural henna tattoo done, never heard of the black henna.

I didn't have it during chemo though. I agree that while going through chemo it is better to err on the side of caution. So let's go tribal with scarfs, hats, jewelry, t-shirts and such while doing the chemo! :-)

I would avoid the skulls and cross bones tribal themes while at the clinic though........

As an aside, I have sensitive skin and never had a problem with henna. It is used in a lot of hair products safely. With a little maintenance you can make henna tattoos last.

As with anything you applÿ to the skin best to test it out on a small area first.

SweetHope

I'm also kind of bummed this morning. This coming Sunday I should be on a float, dressed as Dorothy from The Wizard of Oz, celebrating Mardi Gras! Because of chemo, I cancelled all my Krewe activities. I missed the Ball Masque last week...which I can accept as I was in bed reacting to my first infusion. But I feel great today and I know by Sunday I could definitely do four hours of throwing beads and stuffed animals to those happy little faces in the crowd. I think it would be awesome medicine! But I couldn't know. And another member really wanted to be Dorothy, so that worked out well for her (a Stage 4 cancer survivor doing great).

So here I am with a Dorothy wig...auburn pigtails with blue ribbons...and homemade ruby slippers. Are you thinking what I am thinking? No I'm not going to show up at my next chemo as Dorothy. Although I did go to the trouble of adding lace to my white socks. And I have so many cute little Mardi Gras clown dolls to give out.

Spookiesmom

How about dressing up, going to the children's hospital Cancer floor and do your own thing with the kids

glennie19

Great idea, Spooks!  What were you thinking of doing, SweetHope???

SweetHope

That is a great idea. Remember when you were young and missing out on anything fun because you were sick was so devastating? Maybe I can send someone in my place. I am too scared to be near a germy hospital right now. In fact, last night I asked my DS and DDIL to bathe my 2 yr old grandson before we visited and I only gave him air kisses from feet away! Last year I was always coming down with whatever he brought home from preschool. And I was super healthy back then.

When I go out now, as soon as I get home I shower and put on clean clothes. I have never been a germ-a-phobe before. But I am determined to get through this chemo without any delays from colds, etc.

Glennie, I AM trying to talk myself into going to chemo as Dorothy. Giving all the nurses and patients those dolls and hoping I don't make a big fool out of myself. But, if you have ever been down here, you'd know fools aren't so scarce here! Let the good times roll!

glennie19

Let the good times roll, indeed!!   Haven't been to NOLA in years, but planning to come in July when another BC friend is getting nipples with Vinnie!  Maybe we can see you then. 

SweetHope

Let's do lunch. New Orleans is a great city, as long as you walk in groups! It's hot and muggy in July, so be sure to pack light, loose cotton. Come hungry.

Hopeful82014

Sweet Hope - is there any chance your krewe's float could handle two Dorothys?

glennie19

Coming hungry is not a problem!!  Always up for eating!!  Why walk in groups?? Get harrassed or something?

And i know hot and humid,, I live in Florida!

Spookiesmom

Glennie, there was an article recently in paper about NOLA. They are about 500 cops short, not safe to walk by yourself. ALWAYS in a group. It's a shame, cool city

DoggieBytes

sweet hope, I think the nurses and other patients, most of them, would enjoy it if brought a wee bit of Mardis Gras in with you. I found doing things like that not only lifted the spirits of others but myself too. Some patients want to be left alone and usually you can tell by their body language and expressions. I found the nurses enjoy the break from the serious work they do too.

Lulu22

Catching up on this thread, so please forgive me for touching back on the tattoo and head shaving posts...

When the time came to shave my hair I did it myself and had some fun with it. I shaved my blonde shoulder length suburban mom cut on the sides, cut the middle to a ragged 2 inches, used temporary hair dye to turn it blue, and took some bad-ass snarling-faced rocker chick pictures. I figured it was going to be the only time I'd ever have the guts to do it, so why not go a little crazy?

My brother teaches middle school boys and he gave his English class my picture as a writing prompt. He sent me their essays about who they thought the person in the picture was. Common answers were insane asylum escapee, drug addicted punk rocker, and notorious mass murderer. He then told them I was a cancer patient and they wrote me letters on the back. "Dear Ms. Lulu, I'm sooo sorry I thought you were a psychopath. Will you forgive me? I hope you get healthy soon." I sent word back through my brother that their essays were the highlight of my week!

DivineMrsM

Lulu, that may be the best head shaving due to chemo story I've ever read. Love it

SweetHope

Love it, Lulu! Especially the suburban mom to Billy Idol image. How about sharing a photo?