…if I have my right upper lobe (lung) removed, followed by chemo and radiation therapies? I think the radiation therapy is ticketed for 6 months. Please forgive my vagaries, but I’ve got a thoracic surgeon who is control freak who doesn’t want to address post-op shit because that’s down the line. I.e., Focus on the here and now.
On Monday next I will have mediastinum and nasopharyngeal biopsies under general anesthesia, and then perhaps a bike test to see if my lungs can withstand the surgery. (I’m severely emphysemic and 74 years old.)
I should imagine surgery will be late this month or early next.
So look.
I make rosaries for the kids of my church. I finished up on that this week, and in fact delivered them to the Parish Office this morning. Not a big deal - 50 for the boys and 60 for the girls - all second graders.
Each rosary consists of a metal medallion and crucifix plus plastic beads strung on nylon cord.
I used to make rosaries for another church but the gals in the Religious Education so royally pissed me off that I told them no mas. Now, I have severe guilt pangs. I started this business of making the rosaries for them and now I will be letting those kids down.
So, supposing I have to get the rosaries done by end of August, might I be able to do so, despite the chemo and radiation. I mean how crappy can I feel, not to be able to sit on my duff and make the rosaries. It’s not at all physically demanding.
Please understand, this is not a pity party. I don’t want your commiserations or commendations. I want your medical opinion. If it turns out wrong so what. What’ll I do, curse your eyes? My wife (who knows nothing about the therapies) insists I’ll be too debilitated to do the job. I say, maybe doing the rosaries will enable me to put some of the discomfort aside by concentrating on something other than how bad I feel.
Please tell me the unvarnished truth - as best as you can determine. If it’s a WAG so be it. Just say something.
Chemo hits people differently, and even different forms of chemo hit differently.
Make the damned idiot sit down and discuss it with you even if you have to threaten to take your case to the patient ombudsman of the hospital - you have the right to be informed in advance and that involves post op.
Many people get hit hard with nausea, some dont. Many people get hit hard with exhaustion from the anemia, others dont. Some people get a little malaise - like a mild case of some bug or another, and some people can barely get out of bed.
Definitely sit that damned doc down and discuss it with him. You might also demand time with a nutritionist to address how to support your body while all this is going on, chemo and radiation [and just being post op in any case] can drain your body of specific nutrients, and you need to make sure to get extra whatever [iron, magnesium. potasssium, vitamin d or whatever] and if you are having lack of apetite from nausea or the food tasting funky because of the meds, or a change in what you feel you can eat [you may find that despite the fact you love bacon bacon bacon bacon all of a sudden the smell or even though turns your stomach, or suddenly all you want to eat is bananas and cabbage, you need to know to suppliment something or try to find alternate sources of what ever you need.
Since starting to take colchicine and indocin, pork and other pig products make me hork and i really cant face broccoli or spinach without wanting to hork, so I would need to work around those if for some reason my doc decided I should concentrate on pig, broccoli and spinach for some particular nutritional need [and i am disgusted, i really love broccoli and spinach ]
I am not a doctor and this is completely NOT a medical opinion.
ISTM that your reaction to chemo will be not only dependent on your own physical state and how you handle it, but also quite simply on the type, frequency, and severity of the chemo you are on. No one can talk to your about those side effects except your own doctor, and I would suggest you insist on that discussion and not merely allow him (or her) to defer it when you want to know. FWIW:
My mom is 68 and her chemo is knocking the stuffing out of her. Out of any seven day week, she has chemo for two days, and then is completely ill for three and then more or less fine for two. So if she were trying to accomplish something like creating rosaries, she could probably do it for three days out of the week – first chemo day and the two good days before that – and not do it for four days.
But she would also tell you that even if you can only work on your goal one day at a time, or one hour at a time, you will still be accomplishing, and if you never start on those rosaries you know for sure they’ll never get done.
Not to scare you, but you may feel extremely crappy for a long time. My sister found the chemotherapy harder than the cancer.
I don’t want to advocate anything illegal, but you should ask your doctor about the legality and advisability of medical marijuana or marijuana derived medicines. There is much evidence to indicate that they help, and depending on your location, there may be legal access for post-operative patients. Again, you should obey your local laws, though they vary from place to place.
Thanks very much,** le Ministre de l’au-delà**, I don’t take your suggestion as anywhere near illegal, and I’ll ask the doctor about it - the Onchologist, that is.
Well, my younger sister had cancer twice (Hodgkin’s Disease) and I will try to elaborate on what she felt.
She had trouble pooping. She was constipated. I remember because I also remember being on the phone with her from home while she was far away in the hospital telling her poopy jokes (What’s a ghost poopy? You poop, you look, nothing’s there!). I remember Mom had to give her suppositories for it. But, she eventually pooped, and all was well.
She could taste it. Sometimes it tasted like cherry, sometimes like metal. I remember sitting with her at one treatment and she started smack, smack, smacking her mouth like something bad tasting was there. I’ve heard Miracle Fruit helps, but ask your doctor first.
The Broviac! Do you have one, or will you get one? It’s SO cool to kids! You have a big plastic line going right into your chest! Anyhow, no tickle fights. Sorry. We were having a tickle fight and one of us accidentally pulled it out a bit. It hurt her a LOT.
Not sure how you feel about pot, but…she got THC pills and she also smoked a few joints along the way to help with the pukey feeling.
It’s boring. Get someone to come to chat. If you have friends that are cool with it, get them to come. NO sadness! It sucks to be there, having fun always makes it better!
I watched a friend go through chemotherapy in college, for Hodgkin’s disease, and one of the real downsides was that he felt worse as it went on. Cumulatively it just took more out of him the longer it lasted. I actually watched two of his treatments - if you like, BarnOwl, I could email you the story I wrote about what I saw.
My friend had that too. I think the one he could taste was adriamycin.
One of my co-workers has had breast cancer. She had a double masectomy and chemotherapy. She generally went in for it on Fridays so she’d have the weekend to recover, mostly. She mentioned the taste and the nausea, but generally she was functional. She never missed any work due to the chemo. She is about 45 years old.
It’s worth keeping in mind that Chemotherapy (or cancer treatment in general) can change your mental outlook on things.
When my mom was doing Chemo for ovarian cancer (she’s fine now), she found that she couldn’t mentally face piecing quilt blocks by hand, but could do counted cross stitch just fine. Physically, there’s not a lot of difference. Mentally, there’s a bit more.
And I’d guess that the rosaries are similar. Physically, you probably should be able to do them, at least some of the time. But mentally you may or may not be able to do them.
My dear friend is a lung cancer survivor. She’s 65 years old now, was probably 62 when diagnosed. I think she was stage IV. I don’t think she had surgery, I think they did it all via chemo and radiation. She said the radiation was harder, that it burned her skin. Maybe stock up on some good lotions?
She also had her daughter and sister come to all doctor appointments so they could take notes. And she’d leave the room while they asked the tough questions. She didn’t focus on how sick she might be - she was all about thinking towards health (which is her personality, not to say that’s the “right” way or anything).
Also the treatments left her with diminished lung function for a while, she kept building up fluids and having them drained. She had a bit of a cough and of course fatigue. That’s stopped now, AFAIK.
Something unusual that she did, because she’s deeply religious, was bless the chemotherapy bags every time she went in for treatment. Of course we all sent cards when informed of her illness - one particularly…colorful…friend sent her some verse about the “hot, pink, juicy, sexy” lungs he was imagining for her. He sent a photograph of healthy lungs, too. She really cherished that.
I wish you well.
Oh, yeah - my friend’s son-in-law is a Canadian who plays hockey. His reaction? “Lung cancer? Meh, walk it off.”
Don’t do that without talking to your oncology team. A good team should be able to provide all the information on aftercare that you need. You might find that the specialist nurses are a little more knowledgeable on this topic than the doctors. The reason I say this is because the skin after radiotherapy is exceptionally sensitive and the last thing you want to do is irritate it, especially since that can lead to infections.
First, the caveat that all chemotherapies are not created equal. YMMV.
When I went through chemo, they were using a mix of chemicals called “CHOP.” In addition, I had monoclonal antibody treatment (giving me a combined 6-7 hours per treatment hooked to the IV) and steroids. It’s difficult to say which reactions were due to which treatments.
My treatments were 3 weeks apart. I was knocked on my can for 2-3 days. Getting up and going to the bathroom took all the energy I had. On the 4th or 5th day, I went back to work. I was writing a book at the time, so “work” could be done in 3-4 hour shifts at my desk downstairs. By week 3, I was feeling close to normal, putting in 9-hour shifts at my bookstore. Heck, I even competed in a rodeo between shifts (in a wild horse race).
There are anti-nausea drugs now that people never dreamed of 10-15 years ago. They’re very expensive, but my chemo nurse always managed to find me free samples to get me through those first 2-3 days.
Incidentally, after taking the steroid (Prednazone), everything tasted awful. I couldn’t drink soda pop from a metal can; couldn’t eat with a metal spoon or fork. I don’t know how to describe the feeling of that metal in my mouth, but it was horrible. Have some plasticware handy.
IANAD but I have been through chemo/radiotherapy for Hodgkins Disease
My experience was that on some days I was fine and on some days I just wanted to stay in bed feeling really ill. Some people I knew taking the same course, always felt ill. It really is going to depend on what you are treated with and how you react to it as others have pointed out.
The best thing I found was in taking a normal attitude, it was something that was going to happen and I was just going to get on with life and doing what I wanted. Yes, I felt more rundown than usual, so I just took a little longer to do things. Having a couple of hobbies really helps, both in taking your mind off the general bad feeling and to help while away the time between courses. Sitting and making rosaries sounds like a really good idea.
I would definitely follow up on talking to your doctor and also see if he can recommend anyone you can talk to face-to-face who has passed through the same course of therapy.
If you want any more of the not so gory details - feel free to ask/PM me
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He sent a photograph of healthy lungs, too. She really cherished that.
