i have brain cancer and no one to care for me
July 21, 2016 6:06 PM   Subscribe

How do I have cancer alone?

In October 2015 I had a tonic-clonic seizure while I was at home alone. I lost consciousness for several hours and when I woke up, my partner at the time had been calling and texting wanting to know where I was. Confused, I told him I had fallen asleep on the floor. He knew that was nonsense and came over to my house. I was acting strangely and he knew something was up, so the next day took me to an urgent care where a CAT scan found a large tumor in my right frontal lobe. The tumor was resected a day later via a bifrontal craniotomy, after which I was in the ICU for a few days before being released. Pathology reports showed it to be a grade III oligodendroglioma-- malignant and requiring chemotherapy. My prognosis is okay-- median survival for this type of tumor and grade is 15 years.

My then partner of more than ten years cared for me day and night. He confessed to waking up in the middle of the night to listen to my breathing to make sure I hadn't died in my sleep. It was a terrifying time, but I recovered fairly well and was back to work after about 8 weeks of medical leave. It seemed like I would be mostly okay-- my cognitive abilities are largely intact, and I had my partner to care for me while I undergo five days of chemotherapy every month.

Then in April we broke up. It had been a long time coming, and the stress of my cancer combined with years of problems between us finally made staying together untenable. My ex-partner has a bit of a savior complex and thought that despite our breakup, he'd still stay in my life to help care for me during chemo when it's hard for me to care for myself. Things didn't work out that way due to how our relationship ended-- I met someone else right away and we started sleeping together, but this new person isn't in a position to care for me. My ex-partner is heartbroken over this new person, understandably, and doesn't want anything to do with me.

I live alone and have no family members who can or will care for me. Upon hearing we'd broken up, my mother's first question was "who's going to take care of you now?" My mother lives about an hour away from me, but has very little involvement in my life. I am estranged from my father and one half sibling who isn't really part of my life. I have lots of friends, but they have their own families or illnesses that make caring for me for a few days a month unrealistic. So I'm on my own.

Originally I was told by my neuro oncology team that I would have monthly chemotherapy for about a year. Recently that was updated to "indefinitely". While chemo isn't the worst thing in the world, it does make it difficult for me to care for myself and to work. I could use some help taking care of myself during the worst couple of days, but have no one to ask. Over the months since the breakup, it's become more difficult to keep my head above water and it's clear that having cancer alone isn't sustainable long-term.

The shitty thing about this kind of cancer is there's no cure, no remission. It comes back 100% of the time. There's no "after treatment" phase like there is with many other cancers-- I'll be on chemo until it stops working and the tumor starts to grow again. Ostensibly that will mean the end of my life.

What do other people with no family or partner do when they have an incurable long-term illness? Are there resources for people like me that I just haven't found yet? I'm mostly very functional, but those days during chemo knock me down to the point where it's a struggle to feed myself. I'd love advice, hopeful stories, resources.
posted by hollisimo to Human Relations (30 answers total) 31 users marked this as a favorite
you may be able to ask through the hospital who is handling your care if there are home care agencies that they can recommend. then call them and see if they accept your insurance (or what their payment structure is), and whether or not they can handle what you'd require.

there are also food delivery services that will premake dinners for you, that you just rewarm when needed. you might also be able to hire a private chef who can make you meals to your specifications, that you just microwave when you're ready.

if you need to have someone to drive you to and from things on a regular basis, or if you just want someone to hang out with you after chemo and make sure you don't fall or anything (nothing nursing related), you might want to see if you can advertise for a college student who wants to make extra money. craigslist or a college work study program might be good for that.
posted by koroshiya at 6:17 PM on July 21, 2016 [7 favorites]

Try to arrange for what you need prior to chemo. Stock the kitchen with foods that you can heat and eat or eat cold. If you can, arrange your home where you can care for yourself with minimal effort, such as having a mini fridge and microwave next to the bed and sleeping close to the bathroom.

If your mother can come in occasionally to, say, clean the house, that can make a big difference. My mother used to go to my sister's house once every three weeks and get her caught up on laundry, clean the house and stock the freezer with individual servings of homemade food that could be microwaved. My sister was going through chemo and this made a huge difference.

If you can manage to hire a maid to reduce your workload and keep the house clean, that would be a good thing.

I hope other people know of resources to point you to. Unfortunately, I do not.

Sorry you are going through this.
posted by Michele in California at 6:19 PM on July 21, 2016 [6 favorites]

The first thing I would do is create an advanced medical directive and arrange a durable power of attorney. The pastoral care team at your hospital should be able to help you arrange this.
posted by rubster at 6:37 PM on July 21, 2016 [3 favorites]

Hollisimo, my heart goes out to you. in your situation I think talking to your oncologist is going to be the most straightforward way to find out what help is available. If you're in the US I guarantee you there is a social worker or case manager or patient navigator at your oncology practice who can offer you practical resources for transportation and in home assistance when you need it.

Could you share where you're located? Someone here might have specific agencies/resources to recommend if you are able to give a location.

Wishing you the very best.
posted by little mouth at 6:39 PM on July 21, 2016 [20 favorites]

I'm so sorry you're going through this. I googled "in home nursing" for your city and got these hits. Perhaps a service listed there might help or you could ask at the oncology practice if they've had experience with any of these.

Best wishes to you.
posted by angiep at 6:51 PM on July 21, 2016

The American Cancer Society has volunteers who can help with transportation and other things, and also should be able to offer referrals for in-home care. They may also have support groups for people going through cancer or referrals for these which might be helpful for emotional support.

It's a tough spot to be in.
posted by mulcahy at 7:09 PM on July 21, 2016 [5 favorites]

I'm sorry you're dealing with this. If I lived in your city I would come over with groceries and clean your house. I would bring you flowers and make you a cup of tea.

I second the support group idea. You may meet others in your situation and find ideas/resources for managing daily life.
You didn't mention having a place of worship but often churches will have ministries that provide services to people in situations such as yours. You don't need to belong to a church to receive these services. The way to find out is to call your doctor's office and tell them your situation. Also the hospital/clinic where you are receiving treatment should be able to hook you up with a social worker as mentioned above.
posted by It'sANewDawn at 7:38 PM on July 21, 2016 [4 favorites]

I'm sorry this has happened. I'm sure the switch from "bad chemo for about a year" to "bad chemo indefinitely" was not an easy one to make, psychologically. Definitely talk to the social worker or care manager at your oncologist's office. At the very least they will have contact information for home care agencies who may be able to supply someone to come in to check on you. This may or may not be covered by insurance, but if you only need help a couple of days a month this will probably be more or less affordable. Personal care attendants, who provide unskilled caregiving, usually only make about $10 an hour.

You will probably also be eligible for help through various local volunteer organizations, which the oncology group should also be able to help you with.

You should also try to do as much prep work as you can for the days you know are going to be the worst. If you're eligible for FMLA you might ask for intermittent FMLA time for those days. You can plan to have the foods that are the easiest on those days to eat already in your refrigerator. Plan your work so that you don't have anything urgent due during that time.
posted by The Elusive Architeuthis at 7:40 PM on July 21, 2016 [3 favorites]

If transportation is a problem for you, the public transit authority in many cities provides a low-cost taxi or shuttle bus service to those who cannot use regular bus or rail service due to a health condition. This can include temporary conditions or disabilities. In Portland, this service is The LIFT.
posted by serathen at 8:06 PM on July 21, 2016 [1 favorite]

I get that your friends have their own families, their own medical issues and their own lives, but speaking from their point of view, if asked (and likely proactively) I would make the time to help you one or two days a month. If you can get over not wanting to burden them, getting say 4 or 5 friends to come in once a month for a day or overnight would solve some of the issues of being alone. I think that the other suggestions above are also good in that there ARE resources out there that generally can be found by asking the oncologist or hospital social worker. I have a brother in law that is an oncologist and he said the most important part of his practice is making the patient comfortable regardless of the prognosis.

The other idea that comes to mind is to go to your care rather than have it come to you. I personally would not be thrilled with that, but it may work for you. On days when you get your chemo or when it is affecting you, can you stay at a friend's house or at your mother's? If I am a friend with a family that needs to be car pooled, fed, washed, etc, I might be able to provide help from my house rather than from yours.
posted by AugustWest at 8:29 PM on July 21, 2016 [22 favorites]

If you are in the US, you may qualify for disability now as well as later, which is fast-tracked and a sure thing if and when your disease progresses to "terminal illness." You should ask your hospital's social worker, and/or call the American Cancer Society's hotline. They are hit-or-miss in terms of getting you to and from appointments, so you may want to also look into your local paratransit, which you may be or become eligible for.

I'm sorry you're dealing with this.
posted by blnkfrnk at 9:50 PM on July 21, 2016 [3 favorites]

I have a friend who says to me when I ask her for help I am helping her. I am giving her an opportunity to be a giving person.

Being on the receiving end of help from friends is hard. I have been very lucky with my friends. I do not have a terminal illness, just a chronic one with periods of total disability. I have moved away from them and live with a family member so I am not near them anymore. I miss them terribly.

My experience with friendship and this kind of help is that not every one can do it for a variety of reasons. It taught me to accept that even people who care about me have their limits. Being willing to ask for and accept help from my friends has mostly been very positive for our friendship.

But, all of the above is not for everybody. I have also used Home Health aides with very mixed results, hired people looking for cash work with better mixed results. It is better to have something setup before you need it rather than scrambling around at the last minute.

Lastly, one of my friends who has helped me asked me for help. I was so happy she thought of me. She has stomach cancer and will be on chemo till it stops working. I drove 8 hours and spent a week with her during her first treatment. I did very little but I was there if she needed anything, which was a huge relief for her. It's my turn again next month. I am so greatful that she is giving me the opportunity to be the giver.

You know your friends best so maybe they are not at all available, but then again, have you ever asked? Just something to consider.

I wish you the best and hope you get the help and support you need. Take care.
posted by cairnoflore at 11:27 PM on July 21, 2016 [21 favorites]

Please take the time to check with your patient navigator,social worker or case manager about Social Security. My brother qualified for a "compassionate allowance" from SS and I couldn't believe how fast he was approved. Even if you don't need the money, it will open up some more programs for help.
posted by ridgerunner at 12:09 AM on July 22, 2016 [1 favorite]

Seconding the suggestion to ask about staying at a friend's place on the days when you're having chemo. Also seconding talking to your local church.

It's been my experience that having cancer opens a lot of doors. People take cancer seriously, and if you say, "I have cancer, and I really need..." that's really going to get their attention. It's true for friends, strangers, government programs, pretty much everybody. Even jerks will be nicer to you, when they find out you have cancer. Nobody wants to be the one who was a jerk to the cancer kid.

Maybe you feel uncomfortable asking for help, but fuck it. You need what you need, and you're coping with some incredibly shitty, unfair stuff. So, go ahead and ask for what you need, and play the cancer card. Work that cancer, baby! Every day is like a Make-a-Wish!

(I'm sorry if I sound flippant, or callous. Did I mention I've had cancer too? I'm so sorry you're going through this and I hope you live happily for years and years.)
posted by Ursula Hitler at 1:10 AM on July 22, 2016 [7 favorites]

Just want to second those who are saying that you may be able to depend on your extended network more than you think. I've picked up a not-that-close friend up from their treatments for chronic conditions and taken them home and made sure they're safe/comfortable. It's actually not that big a deal, work-wise, and I felt honored that they felt like they could ask. It's not as big a deal as chemo aftercare, but I would 100% be willing to do more.

Good luck!
posted by mskyle at 4:55 AM on July 22, 2016 [5 favorites]

My family has needed extra hands for a few people; just wanted to second cairnoflore that things worked out much better with people who worked directly for cash than those found through a home health service, in that they were more flexible with hours and were usually willing to do a bit more (e.g. help with cleaning or cooking as well as personal care), and were more emotionally invested, because they were found through people we knew (through friends, church, the community). (One helper was a retired social worker looking for additional income, another was a former nurse, a third was a student nurse we already knew. Ask around... also, if you know anyone working in health care, they may be able to put you in touch with someone already skilled and willing.)

One neighbour, who did kind things for our far-away family member anyway, agreed to stay overnight and help with medications on a more regular basis, in exchange for a salary. She picked things up quickly, the important thing there was the relationship.

I've seen at least one very detailed craigslist ad for personal care help, in which the poster needed someone willing to be comfortable with *very* specific things - which is to say that you should feel free to ask for what you need, and be with people with whom you feel comfortable.

So sorry you're in this situation. Wishing you the best.
posted by cotton dress sock at 5:35 AM on July 22, 2016 [3 favorites]

Any chance you have a spare room? You might find a housemate who might look after you during chemo for less rent.
posted by kjs4 at 6:24 AM on July 22, 2016 [1 favorite]

When my father had cancer, his immediate support system consisted of my legally blind Mom and me, who was only 9. Even though many of them lived a mere 10-minute drive away, living family members were nowhere to be found. We had a tremendous outpouring of support and help from friends, neighbors, and my parents' colleagues, however, and to this day, I am grateful for their kindness. They had families, jobs, busy lives, and complications of their own, but they did not hesitate to provide rides, run errands, cook meals, even paint a room (!) and never made us feel like we were a strain or a problem. In fact, it was the exact opposite. They were glad to do it because they wanted to help in any way they can.

In addition to the suggestions above, I would reach out to your network of friends. If there is someone in particular who is good at coordinating this kind of thing, ask that person to try to organize some help. You probably will be surprised at how seamless things come together. For example, cooking us meals was completely unsolicited and organized somehow by the others. We were given a calendar of who was giving us dinner and that was it. Of course, things like rides to chemo needed to be coordinated directly due.

I am so sorry you find yourself in this situation and know it can be a complicated, overwhelming time. Whether it feels like it or not, you do have people and they will show up, if you ask. Best of luck!
posted by katemcd at 6:32 AM on July 22, 2016 [3 favorites]

My sympathies-- this is a lot to deal with. People have mentioned your hospital/medical practice social worker, and hiring people directly for certain tasks. At some point it might be useful to make a list of things you want to ask for help with, and decide which ones you want to ask friends and family for, and which ones you want to hire out. In my family's and friends' experience, it seems like it works really well to ask a friend to come over and set up a desk or table with all your meds, paperwork, a calendar, etc., if there has gotten to be a lot of that stuff and you want it all out where you can see it. That's something much better not done alone, because it's complicated and a headache. (But definitely let a social worker/patient advocate help you if there are insurance issues or whatever.)

Even people you don't know very well are usually glad to help if it's a specific thing that will just take a couple of hours. It may not be who you expect.
posted by BibiRose at 8:02 AM on July 22, 2016 [1 favorite]

I'm so sorry to hear that you're going through this alone. I was very lucky to have my mother and sister around. I know that in my area our local Cancer Resource Center does a lot of this sort of thing for people who need it. That might be a starting place for you.

posted by The Underpants Monster at 9:32 AM on July 22, 2016

I'm so sorry you're facing this alone. You've gotten some great advice up-thread. I'd echo the ones that said to reach out to your hospital's social services department. Try your local cancer charities. I know for breast cancer there are some that arrange housecleaning and meals for patients. Maybe there are some that provide those services for other forms of cancer, too. Some folks suggested Craigslisting for a college student for help. I'd go a step beyond and look for a nursing student. They may want the extra experience, and have a better grasp of the subject at hand. Best of luck to you with this, really.
posted by jhope71 at 10:02 AM on July 22, 2016

I hope the recommendations above have been helpful. I did meMail you if I can help, at least with finding the resources to get you started.
posted by Altomentis at 12:02 PM on July 22, 2016

So sorry you have to deal with this. Is there a Red Door Society aka Gilda's Club in your city?
posted by dancing leaves at 1:00 PM on July 22, 2016

Nthing the great advice above. I've had two friends who had cancer. One lived far away so I couldn't help her. The other lived nearby and I was able to do a fair amount. For one I started a Yahoo group so my friend could add appointments to the calendar and then ask for a volunteer. People would also note what was easiest for them to do--bring by food, clean up, make calls, drive, etc. Your friends and acquaintances are adults. They can say no if you ask them for help. But they can't say yes if you never ask them. So sorry you are facing this!
posted by Bella Donna at 5:37 PM on July 22, 2016

Keep in mind that part of what needs to be done is coordinating rides, helpers, news about how you are doing, insurance paperwork, etc. If you have friends or relatives you are close with who don't live nearby or aren't physically able to help, they could still help with things that can be done over the phone or online -- while you might think of these as things you are more able to do on your own, it can free up some mental energy and time for other things.

There are also various nifty online tools out there for helping coordinate care, and more specialized things like www.mealtrain.com for things like planning who will bring meals.
posted by yohko at 6:00 PM on July 22, 2016 [1 favorite]

The American Brain Tumor Association has a mentor program, you might try a mentor and see if they have any helpful suggestions for your situation.
posted by yohko at 6:06 PM on July 22, 2016

Came here also to suggest the following: American Cancer Society has a program called "Road to Recovery" in which volunteers help get patients to cancer-related treatments.

Your cancer center is likely to have volunteer support networks as well - the suggestion to connect with a social worker or a patient navigator is excellent, and is the best way to figure out what resources you will have access to.
posted by honeybee413 at 10:30 PM on July 22, 2016

Caringbridge.org has been used by several acquaintances of mine, and seems like it might help here. It serves as a central place to provide updates on your health, and coordinate transportation and meal deliveries.
posted by mysterious_stranger at 11:06 PM on July 22, 2016

Nthing the people who say you may be surprised how much your friends will be willing to help. I was recently in a situation with a friend who was too proud to ask, and while some of us pretty much forced ourselves on her, I could see that there were others who were a bit hurt that they were not involved more, just didn't want to invade her privacy.
posted by maggiemaggie at 5:01 AM on July 23, 2016 [1 favorite]

There's a web site called http://lotsahelpinghands.com that handles calendars of tasks and messaging among volunteers. If you have some folks who are willing to help, it's a good way to give them specific things to do -- and for recurring stuff (e.g., monthly doctor appointment or Wednesday dinner) it works very well. And if a task isn't picked up,at least you know that you need to get a ride from Uber or whatever.

(Caring Bridge is more of a clearing house for communicating, with a blog and such; Lotsa Helping Hands is more about getting stuff on the calendar and someone committed to handling it.)

Some people will amaze you with their help; others will disappoint you. No way to tell, either. There may be a group for survivors in your area who are willing to pitch in even though they don't know you, like the Gloria Gemma foundation in New England that does tons of services and events for breast cancer survivors and their families.

Good luck and hang in there; ain't nobody deserves this.
posted by wenestvedt at 9:39 AM on July 25, 2016 [1 favorite]

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