Tips for coping with total hysterectomy and/or chemotherapy

February 16, 2019 4:25 PM

So my girl-guts have totally gone and some lovely nurse is feeding chemo drugs into my system every three weeks. New experiences! I'm managing really well so far but I wonder what tips others may have for issues I may encounter in the near and distant future.

I was post-menopausal anyway so I'm not suffering from a jolt of hormone change, but now that there is more room in my pelvis, my bowel is doing some weird stuff, like forming very broad stools. And pimples! My face is getting pimples! Other than that I haven't had many side effects from my first chemo treatment a week ago. In fact I feel better than I have in months now that an 8" football shaped mass is out of my system. But this is all new territory for me and no one in my family or social circle has gone through this or is around to tell me about it. What can you tell me about it?

My prognosis is very good and I have friends, colleagues, a great employer and Australia's public health system supporting me so I am incredibly lucky. I'm on carboplatin, dexamethasone (ugh), magnesium oritate, CBD oil, acupuncture and Chinese wellness herbs. Keen to hear other suggestions for wellness-supporting supplements and modalities that have a scientific basis, along with behavioural changes or activities that will aid in my recovery.

posted by Thella to Health & Fitness (9 answers total)

Sorry to hear about all you've gone though, but glad to hear you're doing well. I have not gone through this, but I have recently been reading about Valter Longo and his work with fasting and fasting-mimicking diets, which seem to have all sorts of benefits, including easing the side effects of chemotherapy. Most cancer patients and their oncologists are less than enthusiastic about the idea of fasting, so I mention this only as something to read about -- there's lots about it online -- and to potentially mention to your doctor. Or not. Wishing you well in your recovery.
posted by swheatie at 4:54 PM on February 16, 2019 [1 favorite]

Best answer: I went through roughly the same treatment fourteen years ago, the only differences I can see being that I opted for cisplatin (carboplatin was the gold standard but I had read some really promising studies on the other - in the end I don't know as it made any difference) and didn't get the CBD oil and herbs and other complementary treatments.

I'm not going to say it wasn't rough, and I actually think you've got a better handle on it than I did, but the good news was in the first sentence! After five months of treatment and five years of clean bloodwork, it was, "Consider yourself cured." Hang in there, sis, and I'll be hanging on from the other side of the planet.
posted by The Underpants Monster at 5:28 PM on February 16, 2019 [4 favorites]

Hey there. I just wanted to put it out to you that my mother went through this shortly after the birth of her third child, due to ovarian cancer. (She was able to keep one ovary for hormonal regulation, but of course she was pre-menopausal at the time.) That was 29 years ago now and from everything I know she's led a perfectly normal and healthy life and on a day-to-day basis is not affected one bit by having had a hysterectomy. I just wanted to offer that as an anecdote, since I'm sure the future is a bit scary right now. At least in my mother's case, everything turned out just fine and dandy.
posted by Anticipation Of A New Lover's Arrival, The at 5:29 PM on February 16, 2019 [5 favorites]

Best answer: I've only had the chemo, but I can tell you with confidence - the pimples will go away once they stop pumping you full of steroids.

I had different drugs, but I know lots of people who have been through chemo of all sorts, I can say two things that for sure helped everybody I know who's had cancer:
1. Keep moving. It's so hard to stay active when you feel like garbage, but exercise will definitely help you feel better. Even if you can manage a 20 minute walk every day, it makes a big difference.
2. Seek out a community of survivors. At some point you will hit a wall of terror - at least, everybody I know has, at one point or another, become terrified. It's especially difficult as you approach the end of treatment, when you realize that you're going to stop getting medicine and the doctors will turn you loose back into the world like you're a normal person. It's really, really hard, and nobody in your life can understand like people who have gone through it themselves. I have a great group of women I met on a cancer message board that I keep in touch with, and a local survivors group as well. I don't always go to meetings, and almost always even when I do go I try to talk myself out of it, but it's always the right decision to go. To be around people who get it 100%. On that note, also, feel free to drop me a memail any time.

Good luck! I had breast cancer, so it's different, but I am here, 4 years later. There are lots of us cancer survivors out here in the world. Every time, still, I'm surprised when I hear that somebody has had cancer and come through it and gone on with their lives. It's a hard road, but we muddle through and you will too. <3
posted by something something at 6:24 PM on February 16, 2019 [6 favorites]

Valter Longo’s work is indeed fascinating, but his program for cancer patients is still in clinical trials. I’m a cancer patient, and I tried to get on his fasting-mimicking protocol, but was told it’s not being used for cancer patients unless they’re involved in trials. I talked with a doctor from Longo’s organization, and he said fasting will be a standard part of therapy in ten years. My oncologist could not be less interested in fasting research.

I like Smart Patients for online support. It’s divided by types of cancers, and you can learn a lot from people who are undergoing cancer treatments similar to yours.

I saw a naturopath who specializes in my type of cancer, and he made lots of good suggestions. I know some people are anti-naturopath, but I looked up everything he recommended on PubMed, and it was all backed up by peer-reviewed research. I don't know what regulations apply to naturopaths in Australia.

My favorite book on cancer and wellness is Anticancer Living by Lorenzo Cohen. I also really like Undo It by Dean Ornish, which came out quite recently.

It was helpful to me mentally to accept that my oncologist’s job is to know about drugs and to be fine with her just doing that. For anything related to complementary medicine or wellness, I’ve had to go elsewhere.

Feel free to MeMail me.
posted by FencingGal at 6:44 PM on February 16, 2019 [2 favorites]

Best answer: One thing the naturopath recommended that I’ll specify is Japanese forest bathing. There are actually measurable positive effects of spending time in nature. Even if this sounds woo to you, it certainly can’t hurt. When we’re not having ice storms, I walk in the woods most days (fortunately, my office is five minutes from a park).
posted by FencingGal at 7:05 PM on February 16, 2019 [4 favorites]

It's especially difficult as you approach the end of treatment, when you realize that you're going to stop getting medicine and the doctors will turn you loose back into the world like you're a normal person. It's really, really hard, and nobody in your life can understand like people who have gone through it themselves.

Hoo boy, this. NOBODY prepared me for the giant existential crisis I later found out is not uncommon. At the time, I called it "The Big What Now?"
I guess in some ways it might not psychologically work that differently from the adjustment veterans have to make after the war. Not a perfect parallel, obvs., but I think it can be helpful.
posted by The Underpants Monster at 8:49 PM on February 16, 2019 [6 favorites]

While I’m not fond of the name HysterSisters.com is a forum for hysterectomies. I’m sure there are also loads of Facebook groups.

Also do you have any extended social circle you’re comfortable in such as social media? I asked on Instagram and got a surprising amount of responses when considering mine.

I’m 3 weeks post op partial pre-menopause hysto so I’m not much help beyond that!
posted by Crystalinne at 10:37 PM on February 16, 2019 [1 favorite]

When my mother was having chemotherapy she saw an acupuncturist weekly and the results were great for minimizing the side effects and keeping her cell counts up. Good luck to you -- I'm sorry you are going through this.
posted by nixxon at 2:36 PM on February 17, 2019 [1 favorite]