My boyfriend just started chemo and I'm more than slightly terrified.
March 4, 2011 4:23 PM   Subscribe

My boyfriend just started chemo and I'm more than slightly terrified. How do I deal with my fear and support him?

Relevant facts: I'm a 23 year old woman dating a 28 year old man. He doesn't have cancer, but he does have a rare, chronic blood disease which, in more serious cases, is sometimes treated with chemotherapy. We've been dating for seven months and are very much in love. We've worked through a glut of trust issues from past relationships, on both our parts, and we've talked about the future, including the possibility of marriage. Our relationship is still fairly new, but it's strong and important to us both.

One reason the chemo in particular is scaring me is there's research indicating possible increased risk of transformation from his disease to acute myelogenous leukemia. This is a concern because unlike most people suffering from this disease, who tend to be in their sixties and seventies, my boyfriend could live another fifty years if this disease (or cancer) doesn't kill him. Other complications of his illness include blood clots (so possibly stroke, heart attack, etc) and negative impact on other organs, which could be exacerbated by medicine he takes for an unrelated condition. It also causes headaches, fatigue, and other annoyances, all of which he deals with well. He's is honestly the strongest man I know, and I'm so glad that he's trusted me with something he regards as a secret.

So my questions are:
1. What, if anything, can I do to comfort and support him as he goes through chemo and future aspects/complications of his illness? Chemo means my go-to comfort gesture of food/baked goods is out, since he doesn't have much of an appetite and half the time he eats, he throws up. His chemo is fairly low dose (I think?) and I'm not sure how long he'll be doing it, since it depends on tests we don't have the results of yet. On top of this, I'm worried he'll withdraw to deal with this by himself because it feels 'safer,' but I honestly think that would just hurt us both.

2. How do I deal with this on my end/in my own head? I've never known anyone who was chronically ill before. In my family, everyone is either healthy or dead, with not a lot of space in between. I'm scared he's just going to die, even through that's extremely unlikely in the near future (the fact that he probably won't die for at least ten years is not very comforting to me). Also, I'm the only person he's told of the extent of his illness. His mother knows he has this condition, but she's in ill health and possibly near death herself, so he hasn't told her how bad it's gotten. He's not close with the rest of his family and is concerned about presenting a strong front, even to his closest friends. Finally, I know I'm getting ahead of myself, but if he and I do stay together, it would represent a rather abrupt change for my future plans. I've always wanted kids, but I don't think I'd be comfortable bringing kids into a situation where they'd be likely to lose a parent. I thought it over and done some research, and I've come out the other side of it firm in my choice that I'd rather have him than kids (although of course ideally I'd have both).

Any advice would be welcomed and appreciated. I've had two weeks to process this news but I'm truly feeling a bit lost in this situation. Throwaway email is
posted by anonymous to Human Relations (14 answers total) 2 users marked this as a favorite
One thing that he might find helpful, in a somewhat practical way, are nutritional drinks (like Boost or Ensure). Chemo patients who can't eat a lot of solids can go through these pretty quickly. A couple of cases of his favorite flavor/brand might be very appreciated. You can also make him shakes and stuff at home.
This (while intended for cancer patients and their caregivers) covers chemo-related appetite concerns.
This talks about concerns for caregivers generally, and while it is intended for cancer-related audience as well, can really apply to caregivers of anyone with a chronic illness, especially someone being treated with chemotherapy.
posted by elpea at 4:43 PM on March 4, 2011

I'm speaking from my experience when I was a high school kid watching my grandmother and then my mother go through chemo.

It's scary. But he's still him. When you're seeing the chemo and the illness, and you're thinking ahead to the scary things that might happen down the line, those are taking over from the person that's in front of you now.

Dealing with your fear is tough, because you don't want to bottle it up – that can make things build up into unpleasant, difficult territory – but you also don't want him to feel that your fears are overwhelming his own. If he withdraws, as you're afraid of, talk to him about it. Ask him what he wants, emotionally. He may need some time to deal with this himself, especially because there are so few people he feels able to discuss this with. Or he may be grateful that you're the one person he can talk to about this. Be there for him; but if you feel overwhelmed, make sure you have emotional support from friends or family or random supportive internet strangers.

As for more concrete help: is your relationship too young to give him some basic help around the house without it being awkward? I remember my mother feeling quite weak and appreciating when I did the dishes unasked or picked things up. So perhaps you can help by making his day-to-day tasks a little easier or his house a little cozier.
posted by bassjump at 4:55 PM on March 4, 2011 [2 favorites]

Speaking as someone who is currently going through chemo:
Get rid of non-food things that smell like food. I have a coconut scented lip gloss that I love with all of my heart when not in chemo, but when I'm in my chemo time it churns my stomach. You don't have to thow it out, but maybe gather it all together in one place.
Also the smell of fabric softener (rendered fat+cheap perfume) makes me sick. Before I had chemo, I thought that fabric softener smelled good.
So maybe look out for his triggers, and help him to contain them.
Also, a nice relaxing massage is always welcome. My feet and calves, and my shoulders, they're always tense. Use an unscented oil or lotion.
Clean sheets and jammies when you are feeling sick are always welcome. Unscented everything.
Tree-y smells kind of help (juniper, pine) for me, but be aware that anything can become a trigger for nausea if you are feeling sick.
posted by pickypicky at 5:44 PM on March 4, 2011 [1 favorite]

Also, i find the only way to deal with terror is just to get up everyday and get it done. Go to work, wash the dishes, do the laundry. At night, try to do relaxation exercises to help you get some sleep. I have found that biofeedback helps.
posted by pickypicky at 5:54 PM on March 4, 2011 [1 favorite]

There are two states you'll find yourself existing in: 1-what might happen, and 2-what's happening now.

I think right now you're living in #1. It sucks, and I've been there, with several people in my life. You spend so much time worrying about what will happen....losing hair? Puking?! Mood swings?? Days on end in bed?? Spending endless hours in waiting rooms!!? etc.

But eventually you'll start to live in #2. And you'll see that you just get it done, no matter what. Things you never imagined yourself doing, and things you might now imagine yourself being actively repulsed by? Nothing. When it comes, you'll find yourself doing it. You can dread waking up at 2am to a puking loved one all you want, but when it happens, you'll be amazed at how your core person - your unconscious personality - handles it. You still love the person, but somehow the no bullshit portion of yourself surfaces, and you can wake up, comfort your loved one, clean everything up and handle it all with aplomb, and do it all with no other thought but whether they're feeling ok in the aftermath.

I've cleaned up all manner of excretions, handsful of hair, helped frail 20-somethings to the toilet, the whole bit. And I don't think of myself as someone who is particularly strong. But when someone you love is THERE? Man, there is no you, there is no "what am I comfortable with?" there is no room for squeam. There's just "what does he/she need to make him/her most comfortable, right now?" Your needs come way later, when they're asleep, when you're out of the house. Maybe years later, sometimes.

Basically, what I'm saying is don't underestimate yourself. Time after time after time I've found with both myself and close friends and have inner reserves of strength whose existence you don't even begin to discover until something like this begins. You are so much in your head right now, when the physical thing begins, it almost focusses's no longer this big grey "what-if" cloud, it becomes a series of very concrete choices. In the worst times, you can watch yourself almost doing math with the doctors, always with your loved one's needs chief in mind. Little things become huge. You literally can't plan for it in the head you're in right now.

Don't worry about what foods might work. You'll find them together, when the time comes. Any plans you make will be foiled, and you'll find something totally idiotic that works, that will leave you foreverafter grinning at something strange in supermarket aisles bc of the fact that that was what got you both through.

You also said that you have the possibility of marriage. As I said, I've seen it more than once: there's something deep inside all of us (I'm neither mystical nor religious) that just "activates" when needed....your "no-shit" self. The "in sickness and in health" thing? It's no longer conscious. It just becomes you. It's fascinating.

Either way, good luck. Having seen it more times than I care to recall, I have confidence in you. I promise, you are far, far stronger than you ever imagined, you really are. The mind is kind of limiting when facing situations like this; when you're faced with stark reality, your only choice is to act, and in that action you learn who you are. You sound like you're prepared.
posted by nevercalm at 6:09 PM on March 4, 2011 [31 favorites]

Don't be afraid to seek out the help of a counselor/therapist if this becomes hard for you to deal with mentally and emotionally. It's totally alright to need help when dealing with the scary side of "ZOMG, WE'RE MORTAL AFTER ALL." You need to process your fear somehow or you won't be of any use to yourself or your partner.

Best of luck to you both, I wish I had more specific suggestions.
posted by sonika at 6:09 PM on March 4, 2011

Let me second sonika. Your concerns about yourself and your fears are real, legitimate, and not at all unimportant--you may start to feel like they pale in comparison to what your boyfriend is going through, but it's still ok to have those emotions. Obviously, you're not going to want to lean on him to work through them, but make sure your own support network is strong enough to buttress yourself so that you can provide what your boyfriend needs. Best wishes for good health and good strength to you both.
posted by stevis23 at 6:23 PM on March 4, 2011

People have addressed the chemo aspect, but regarding kids: if you want to have a kid, have a kid. Since you say you've always wanted kids (which is not a way everybody feels), I think you would come to seriously regret never having any, no matter how many more years your boyfriend is around.

Since your relationship is still new and you're only 23, of course you still have time to think about it. Don't rush into it. But realize that a lot of young kids lose a parent. Sometimes it is predictable as in the case of a terminal illness, and other times it's not something anyone would've thought would happen when the child was born. My father died before I was 10. I would've rather that whole thing didn't happen the way it did, but I still have a great family and overall a pretty good life. If what your boyfriend has is hereditary, that's a separate consideration.

And aside from what has already been suggested about chemo, make sure he has Biotene toothpaste and mouthwash if he doesn't already know about it. People who I've known to go through chemo have sworn by it.
posted by wondermouse at 8:11 PM on March 4, 2011

I'm starting Chemo tonight and have been going through a lot of the same fears you expressed, at least the non-relationship ones. What I'll be on can also cause leukemia in the long term but it's a fairly common regime for more severe cases of the chronic illness I've been recently diagnosed with.

I just remind myself that, in so many instances including hopefully mine, the benefits outweigh the side effects. I am usually really good with medications but I've already been taking meds that cause nausea and stomach issues. The doctors said the chemo nausea is mediated by a different mechanism though and it's hard to predict how any one person will react.

Your boyfriend is extremely lucky to have you with him. Feel free to memail me if you just want to chat or compare notes.
posted by michswiss at 8:11 PM on March 4, 2011

I'm going through chemo right now. It sucks to varying degrees (some days I feel all right, some days I'm really sick, lots of days are somewhere in between) but it's manageable. And I think that's the thing you want to aim for: how you can help him manage his chemo. What helps to get into this frame of mind is to frame the illness (as best as you can) as a problem (admittedly a big problem!) for which there are solutions -- the solutions aren't always a walk in the park, but they are the steps that have to be gone through in order to get to the other side. I think this is a mindset that helps engender resilience, rather than helplessness, which is crucial for getting through this.

Food and eating are really tricky components. He needs to eat to keep some strength in order to get through treatment, but (as you've discovered) nausea and lack of appetite makes it very hard. First off, there are a variety of meds he can take for nausea/vomiting, and he shouldn't feel shy about asking his docs about these (and medical marijuana can help, too, if you live somewhere where that's a possibility). In the meantime, think bland foods that will be easy on the stomach. I know it may not sound much like comfort food just to make someone a plate of plain noodles or some applesauce, but if that's all he can eat then by making it you really are helping him. Chemocare offers some good cooking/eating tips, as does this cookbook.

In terms of comforting him more personally, the number one thing I've found that helps when I'm having a bad time (physically or emotionally) is simply for someone to be present with me -- not to tell me to think on the bright side, or to try to minimize what I'm going through, or to freak out, or to tell me not to think about bad things, but simply to hold my hand and be with me and let me give voice to whatever I'm feeling (sadness, anger, fear, guilt, etc.). Being present with him and simply being accepting of what he's going through -- which may sometimes mean he doesn't even want to talk about it (it gets boring, sometimes!) -- is a tremendous, loving, rare gift.

I hope some of this helps. I know it basically feels like the world has kind of dropped out from under you right now; it's overwhelming, at first, to get this kind of news. Try to take it one step at a time -- let yourself off the hook of worrying about what happens 10 years from now. Practice being present and being compassionate, both toward him and yourself. That is the seat of strength.
posted by scody at 9:39 PM on March 4, 2011 [2 favorites]

I like nevermind's response - most people do the job in front of them when it comes to their loved ones. (And then go home and cry if needed).

Make sure you take care of yourself as well as him during this time. Find someone that you can talk to about your own experiences. Particularly good if you can talk with someone who is familiar with what it is like to have a loved one who is seriously ill. The hospital chaplain might be a really good choice - the ones that I have known are very supportive, regardless of your own beliefs. A therapist is another option. You also need to think how you can get emotional support - maybe from your own family if you have a good relationship with them.

Try as much as you can to let the future take care of itself. This is where the old saying "cross that bridge when you come to it" comes into play. Figure out how to let go of unproductive worry - meditation might be helpful for this.

For example, you don't need to decide now whether you want to have kids with this man or not. It is good to know that you are OK with the possibility that you might not have kids together but the actual decision is still several years down the road. By the time you do, you will have a lot more experience with his illness and its effect on your lives. I can imagine the answer going either way. Just try to let tomorrow's problem wait until tomorrow.
posted by metahawk at 10:51 PM on March 4, 2011

If you want to have his genetic children with him in the future, you _do_ need to talk to him about it. Chemotherapy can affect sperm count, even if the current one does not, he may not be able to bank sperm after getting it if another type of chemo is to be administered.

If he is planning on having children, he should look at sperm banking -- even if you are not sure if YOU want to have his children.
posted by yohko at 1:45 AM on March 5, 2011

Oh, I'm sorry -- I clicked through to the body of your question without reading the heading that closely. At any rate, many types of chemo have a suggested waiting period before having children. You will have plenty of time to figure out how his illness is going and how you feel about things before then.
posted by yohko at 1:50 AM on March 5, 2011

There is hope.

My girlfriend went through chemo while being treated for aplastic anemia last summer. We're both mid-20s. The good news is that the chemo and subsequent treatment worked. Her counts are up and her life is basically back to normal, apart from some daily meds. Even then, she's tapering them with encouraging results.

1. I worked it out with my boss so I could have some schedule flexibility to stay overnight with her in the hospital. It was important to her to have me nearby, to know that we were in it together. I made these arrangements on my own, not at her request.

2. I found it helpful to focus on the positive. Despite the rarity of the illness, they had a name for it (i.e. it wasn't a House-plot worthy mystery) and they had treatments and data on the effectiveness of treatments. I suppose it also helped that the internet was not flooded with misinformation, unlike say lower back pain.

I'm going to e-mail your throwaway if you want to continue the discussion.
posted by KevCed at 8:49 AM on March 5, 2011

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