Assisting Family Members Going Through Chemo

[Chance]

I’ve been meaning to post about this for a while, but Sensei’s recent discussion on Aging with Dignity (https://pistol-forum.com/showthread.php?16761-Aging-with-Dignity) finally encouraged me to put thoughts on paper, and ask around. I know a lot of people here have either gone through invasive treatments themselves, know people who have, or have lent a hand to others during a large variety of crises, so I figured this was a good place to start.

My family’s been hit with two blows in the past two years. The first is that my aunt’s cancer is out of remission. Years ago, she had a bilateral mastectomy after being diagnosed with breast cancer. A number of treatments later, the prognosis was fairly positive, but now the cancer has returned, and spread to the bone. While I’m not privy to the specifics (and not qualified to comment on the specifics anyways), my understanding is that this is incurable. The medication she’s on presently is working well, but for whatever reason, the medication is only effective for a finite amount of time, totaling two years.

The second is that my cousin, who is my age (30), has been diagnosed with chronic lymphocytic leukemia (CLL), something most commonly seen in people in their 60s. In addition to that, she also is afflicted with something resembling hemophilia, but is not. Her team of a physicians has referred the issue to the National Institute of Health, which also has not produced a definitive diagnosis. So, at present, literally no one knows what the source issue is. In addition to her present health troubles, my cousin also gave birth to a daughter who was 12 weeks premature. Our family has been incredibly fortunate that the baby is now six months old, and doing as well as can be expected.

Unfortunately, I wasn’t able to present during my aunt’s initial treatment. She lived “back home”, and back home was too far to be practical to visit for me on a regular basis, at that time. My cousin however, lives an hour away, and I’m doing everything possible to help her, and her fiancé out. At present, I’m hoping to be able to drive her to her appointments, then look after her and the kid long enough for her future husband to get home.

The problem is, I’ve never helped a chemo patient first hand, and I don’t know what to expect in terms of symptoms, attitude, et cetera. Helping with physical symptoms is a straight-forward process (I’d like to complete my EMT at some point, so vomit, feces, et cetera doesn’t bother me), but what I’m really concerned about is the mental side of things. How do you support someone whose struggles are not transitional, but most probably, a new way of living?

To give you an example of my conundrum, take my aunt’s sense of humor. She’s always had an extraordinarily blunt, observation-based, sense of humor. Take whatever you think is taboo, turn it into a quip, and deliver it at the most inappropriate time, and that’s my aunt in a nutshell. On the one hand, I admire this, because I sort of think the same way. On the other hand, she’s started making jokes about her terminal diagnosis, and I’m not at all sure how to respond to that.

Are you supposed to laugh when someone makes a joke that they’re actively dying in front of you? How, exactly, are you supposed to respond?

How can I placate my cousin? I was raised by a psychologist, and I learned that people who are depressed often frame everything as “permanent, pervasive, and personal”. To counter this, the counselor is supposed to frame things as “temporary, specific, and situational ” (that’s an oversimplification, but you get the point). However, her affliction can’t be rationalized away. You can’t give false placations like, “Everything will be alright.” Everything’s not going to be alright. She knows that. Everyone else knows it too.

However, on the opposite end of false placation, is defeatism. As in, “There’s no hope, why bother?” How do you encourage someone to fight, when they know full well they won’t win?

I’m very curious to hear everyone’s thoughts. Also, if anyone can recommend a crash course on taking care of babies, I’d be much appreciative. :)

[TGS]

How do you encourage someone to fight, when they know full well they won’t win?

I wouldn't call that defeatism, but simply accepting her situation. The two are entirely separate.

There's nothing wrong with a person accepting they're going to die, and choosing to do so. The chance of them accepting their condition with a full heart is the best thing that could happen, as it's at least something they can control. A person being at peace with themselves isn't something you should be combating.

[45dotACP]

In my experience, the first thing I recommend to any of my patients with Cancer is this website:

http://www.cancer.org/treatment/supportprogramsservices/index

They can have some good resources...online communities and networks.

As far as what to expect physically: Chemotherapy is hard on the body. Often there are multiple different types of chemo in use at once. Symptoms typically vary depending on the drug used, but you can expect things like hair loss, skin irritation, diahrrea, vomiting, stomach pain, bleeding problems (like bruising and prolonged clotting times), decreased energy and appetite, as well as an increased risk for infection.

As far as communication: That will be very different. There are different stages of bereavement (Denial, Anger, Bargaining, Depression and Acceptance) and people move through them at different paces. They can be skipped, they can be missed, or you can have someone who never moves past one. This usually sets the tone for communication and so it will be very individual.

It can be tough on families and caregivers.

One of my personal habits in dealing with terminal illness is to never use the phrase "I get what you're going through"....it doesn't ever work well. There are various therapeutic communication techniques and some may apply to your situation, some may not.

http://www.studentnursejourney.com/part-i-therapeutic-communication-techniques/

One thing I learned as a nurse is that you can sometimes not say a thing, and it is just what someone needed to hear. Sometimes silence, presence, and a sense of peace and respect will convey the right message. Again, the situation is different for so many people. I'm very sorry to hear about your family's struggles and I wish you all the happiness, success, and peace on earth.

As far as a crash course in babies, that info is far beyond my ability/scope as a man and a cardiac nurse, but I highly suggest visiting a pediatrician or a pediatric nurse practitioner or a practicing pediatric nurse for info.

God bless

[ST911]

Be prayerful.
Be available.
Be a good listener.
Be honest when you don't know what to say or do. They'll tell or show you the way.

[1slow]

Take this for what it is worth. YMMV.

In February 2012 I was diagnosed with non Hodgkins B cell lymphoma. Surgeon cut 1 malignant lymph node out of my left neck. Earlier he had cut 2 benign node out of my neck.
I started in February on the RCHOP protocol. 2 days of chemo, 3 week gap repeat. I was fortunate in that I only needed 4 cycles of chemo and no radiation. I finished May 8, 2012. I had a light trip through compared to many.
Through April, I was doing my Dojo training, Kettlebelles, weightlifting etc.... Broke both right forearm bones doing combatives in April. Bones were weak, no big deal it was fixed no issues.

May 2012 on for 6 months I was tired all the time, had to cut way back. Took a little over a year before I could really push it. Push as much as you feel like AND REST as much as you need to recover.
Expect to have a iron/copper/blood taste in your mouth. Spicier food helped with this. If something you liked tastes bad wait till you heal to eat it or you may not ever like it again.
Stay as positive as you can. My intent was to pin this freaking thing in a corner and kill it with a freaking knife. I was not going to go quietly. I asked my Doc and he said it was OK to push as hard as I wanted. He later said 2 broken bones was a bit much.

Talk to other patients about what helped them.
I had good luck and good doctors and have been clear since.
My wife stayed strong and stayed positive. It was harder on her than me. She was of immeasurable help.

I hope your family has great luck and good results.

[Chance]

One of my personal habits in dealing with terminal illness is to never use the phrase "I get what you're going through"....it doesn't ever work well.

Thanks for the links. It's also extremely frustrating to me when I hear that. If you haven't been there yourself, shut up about it.


Take this for what it is worth. YMMV.

Thanks for sharing. I think she's going to struggle with the resting aspect. With a small child to look after, in addition to just hating being still, that's going to be a challenge for her.

[1slow]

REST as needed !
When I was at my worst it wound take a week to recover from walking 3 miles @ 4mph. Bed, office chair, TV chair. Better now I am at 90% of my pre-chemo level.
She needs to be aware of what her body tells her. This is not being lazy, it is having time to recover

[Sensei]

I have nothing to add to what has already been said except that my thoughts go out to those fighting this battle. Excellent advice and perspective from earlier posts.

[TheCrimsonMane]

In August of 2013 I was diagnosed with colon cancer. In October of 2013, I had a laproscopic sub-total colectomy, and began chemotherapy in December that year. In February of 2014, I had a bowel obstruction caused by scar tissue from my colectomy. When my surgeon was removing the obstruction, he found many small tumors spread throughout my peritoneum. That April I had a procedure called HIPEC done, during which it was discovered that the cancer had spread to my small intestine and stomach as well. Surgically, not much can really be done, and I'm still on chemo to extend what time I have left as far as possible. I'm currently 33 years old and married with two daughters, who are 6 and 4.

The initial diagnosis didn't come as too much of a shock. My dad had colon cancer at 26, his dad died of colon cancer at 55, and shortly before I was diagnosed, it was discovered that we have Lynch syndrome in our family, which increases the risk for colon canthere areWhile my situation isn't exactly the same as either your aunt or your cousin, I empathize with them, and can relate to bits of what they each are going through.

For me, there are a few things that can be annoying when talking about my cancer with other people. The first thing I noticed when telling people about my initial diagnosis was that some would look at you like you were already dead, or talk to you almost as if they were talking to you in the past tense. Everyone deals with things differently, and dealing with mortality is hard for a lot of people, but it could be uncomfortable. Another one, after finding out my cancer was terminal, is having people tell you "You're going to beat this," or "Miracles happen all the time." I've gotten this from my dad on down, and it can be infuriating. The worst thing I find though, is people who are all to comfortable forwarding you every and any bit of internet quackery they can find. I've lost count of how many articles for alkaline diets and Rick Simpson's "Phionex Tears" I've received.

Much like your aunt, I'm guilty of joking about my cancer as well. I think it started in an attempt to make people more comfortable, but I dialed it back a bit when I noticed it had the opposite effect on a lot of people. As far as helping your cousin goes, be a good listener, help out with stuff around the house when you can, and honestly, picking up the baby care stuff will come pretty quick, especially if she's there to give you pointers. I second 45dotACP's recommendation for the American Cancer Society. They've got a bunch of good info on there site, and depending on location, some helpful services. I know the rep I spoke with at the hospital said they have volunteers to drive patients to treatment, and counseling for patients and their families, among other things.

I'm sorry your family is going through this, and wish for things to go as well as they can for all of you.

[PPGMD]

Be prayerful.


Honestly keep it to minimum in front of the person unless you know the person appreciates. My mom got kind of annoying with the religious stuff when I was diagnosed.

Honestly I can't tell you much other than there are going to be good days and bad days. And that chemo will cause lapses of memory, and changes in tastes. I was very sensitive to salt when I was going through chemo, thankfully my mom under salts much of her cooking, but often eating out or having take out was frustrating. And don't ask a chemo patient if something is too spicy, as chances are it isn't (I literally could eat whole jalapenos without feeling any of the spice).

Now one thing that annoyed me was the natural cure idiots. I hate to break it to them, if my doctors thought that it would help, they would tell me to do it. All the oncologists I've met are people who care deeply about their patient's survival.

[Chance]

I'm sorry your family is going through this, and wish for things to go as well as they can for all of you.

Thank you so much for sharing this. This is more helpful than you realize.

You brought up an excellent point in that some things family members do, like e-mailing you whatever article they can find regarding a similar condition, create more stress than comfort. PPGMD mentioned this as well. Attempting to mitigate other family members might be something I end up having to do.

My cousin's mother (not the aunt I discussed earlier) is straight up histrionic. Everything is some dramatic event for her. My cousin tries not to share info with her (didn't even tell her mother about her diagnosis until it was physically impossible to keep it hidden), and avoids taking her to appointments unless she's cornered and can find no polite excuse. My other aunt is a wonderful person, and I love her dearly, but it is beyond infuriating to me that she forces my cousin to be the strong one.

I'm sure the medical types around here see this all the time: the person with the injury, or disease, ends up being the one trying to keep their family calm. I don't understand this. Maybe someone that has experience with this phenomenon can explain how to address this.

[Wondering Beard]

Maybe someone that has experience with this phenomenon can explain how to address this.

Generally, it is the ill person who talks to the doctors, experiences the medications, does the research and so on, while the rest of the family tends to feel absolutely helpless and often don't even know where to start. It's the person in the know that tries to calm everyone down, and that's often the sick person.

As to how to prevent or minimize this, I have no clue. I would guess that giving the close family members (like your cousin's mother) a specific "to do" list could focus their minds on their duties; with the rest of the "further out" family, I don't think one can do anything.

[Nephrology]

I'm sure the medical types around here see this all the time: the person with the injury, or disease, ends up being the one trying to keep their family calm. I don't understand this. Maybe someone that has experience with this phenomenon can explain how to address this.

I underwent a kidney transplant at the age of 17 due to an inherited condition known as polycystic kidney disease (PKD). In my experience of a lifetime as a patient, the difference between the patient and the caregivers is that patients - particularly if they have been living with disease for long enough - have learned how to give up control. It is a terribly difficult thing to do, but it is a necessity for pretty much everyone involved with medical care - including, often, the physicians, nurses and other care providers.

Caregivers/family members do not have the same existential need to come to terms with what is happening to them, as it is not their life on the line. It is also unlikely that they have the practice doing so either, as most of modern society is built around having control over one's life - one's finances, education, career, physical health, etc. Learning to surrender control to a certain degree is a baptism in being a patient, and so as a result they tend to be a little more calm, in certain ways and in certain scenarios. I will also add that those who get sick when they are much younger (~first decade of life) and much older (~last decade of expected life) seem to be a little better at coming to terms with this sort of thing than everyone else.

Just my personal observations. My sincerest condolences and heartfelt best wishes to you and your family, OP.

[TheCrimsonMane]

I'm happy to be of any help at all.


My cousin's mother (not the aunt I discussed earlier) is straight up histrionic. Everything is some dramatic event for her. My cousin tries not to share info with her (didn't even tell her mother about her diagnosis until it was physically impossible to keep it hidden), and avoids taking her to appointments unless she's cornered and can find no polite excuse. My other aunt is a wonderful person, and I love her dearly, but it is beyond infuriating to me that she forces my cousin to be the strong one.

I went through a bit of that with my mom, though fortunately it was short lived. I can only imagine how frustrating it would be to deal with long term. She ended up finding an online support group on facebook, and as soon as she found a place to vent, it stopped with me. Hopefully your aunt can find something similar.

I'm no kind of expert or anything, but if you ever want to talk about any of this stuff or run questions by someone, feel free to shoot me a PM.