Dealing with Chemo Alone

Anonymous · January 2008

Anonymous · January 2008

I am already done with all the chemo and the herceptin treatments but I just wanted to start this thread since I know there are many of you bc sisters dealing with this issue and there are many of us who've already successfully survived.

Some of us live alone and some of us are single parents.

For me, my family really stepped up to the plate and made sure that I had rides to and from (only a few times did I have to go alone and that was when I was on Herceptin).

I have to say that it was really a necessity to have someone at the house after I was done with my treatment. I have a little girl, who was 4 at the time when it started and treatment lasted a year and a half, so someone needed to be there to take care of her and entertain her. Yes, I could have done it but having someone there allowed me to rest and not worry.

Anyone have a few words of experience?

Traci-----TripNeg · January 2008

Hey Rocktobermom,

This is an excellent subject. When I was first dx, I lived alone and had no boyfriend...just my on again/off again....

I was self employed and thought the stress of it helped my cancer rear it's ugly head so, I closed my business and in doing so, eliminated supporting peers at the work place.

I was lucky though....feels weird saying it.....but, my 'lil sis as you probably know, had breast cancer 9 years ago so I sort of knew what to expect.

I do have family close by and my mom did take me to my first chemo treatment. Other than that, I went through treatment alone. I have since gotten a roommate but while going through treatment, it was this website and my cat, that helped me through. I do not mean to say that my family wasn't there. They were....but they have their own lives and all of them except me have kids so, mostly it was me. That was mostly me I think. They were constantly calling but I didn't want to be a downer or a burden.

I could go on and on and on......

The night I realized my hair was in fact coming out, (all alone) was brutal.

Thank God for my primary care doc and xanax. (and, this site)

Hugs girl,

Traci

ps...My roommate is making me crazy. I'm selling my house, scaling down and simplifying my life.

BethNY · January 2008

Great thread. Having young children, makes it so much more difficult during chemo. Having help is an essential part of getting the rest you need.

There is a program that the ACS offers (yes, I know a lot of people have mixed feelings about them) but by calling 1800 acs 2345, you can arrange for road to recovery, a program where drivers take you to and from appts, and they also have vouchers for having your house cleaned etc.

I think if anyone is just starting out, and they are a single parent, it is important to establish some type of support team(and I'm not talking emotional). It could be through a church or a support group, or even neighbors, that could help with meals, laundry, and car rides for the kids activities. We live in a world now, where more than half of us don't even know our neighbors names. And the sad part, is that most people out there, are good people, and willing to help when someone is in need.

I have always taken myself to every appt. Some people travel with an entourage, but that just wasn't my life. I went to all of my herceptins alone, but my mom did drive me during chemo when I wasn't allowed to drive myself.

The biggest help was that my sister food shopped for me, and got my prescriptions when I was too sick to leave the house.

The motto of so many cancer groups, is that no woman should feel alone. Okay, great. SO we have all these amazing support groups, and we can help the patient emotionally, and physically, but what about real life? That's where we're lacking.

It's easy to feel complete loss of control. And as women, that's almost an oxymoron, b/c we're so good at taking care of everyone else needs, before they even know what their needs are.

I recently met a girl thats been doing it all by herself for the last year. And my heart breaks for her. My advice for someone who's doing it alone, would be to never ever feel too proud, or afraid to ask people for help...even people that you normally might not tun to, like the lady in the corner house with the loud mouth... I digress....

nosurrender · January 2008

I did all my chemos alone. Back in 2001and 02 and this time around.

Sometimes there just isn't a neighbor around to help out. Sometimes family lives in another state. And most of the time, everyone you know is working during the time you have your chemo appointments.

I am very practical and like to plan ahead.

So I would do all the shopping that needed to be done in case I was down and out for a few days. I always had a supply of ginger ale and immodium and bland foods- everything I could think of- stocked the night before the infusions, enough to last for four days at least.

Driving there and being there alone wasn't bad for me. It made me feel more in control of the situation and I don't like to have to rely on anyone. I find you get a lot less disappointed if you don't rely on people!

The ONLY time I had someone here was after my bilateral and that was only because he insisted. My dad stayed that first night I was out of the hospital and I appreciated that. I did, however, break out of said hospital less than 12 hours after my 8 hour surgery and was home in my living room before my PS even got to my hospital room to check on me!

I am very independent and when you go alone to chemo it can be a good thing because you don't have to entertain the person who took you while you sit there for hours and hours. I got to know all the other patients and all the fantastic chemo nurses and it was fine.

I had my dad drive me to one where they said I would need a ride home because they would have to load me up with benadryl in order to get the taxol... turned out I was allergic to the benadryl and was switched to abraxane so I didn't have to bother my dad again for those appointments.

People always ask me- "isn't there some kid who can....." and the rest of the sentence is filled in with "shovel the snow", "rake the leaves", "mow the lawn", etc... well, I don't know about where everyone else lives but around here there IS NO KID that does chores anymore for people. Eddie Haskell is all grown up and running a Hedge Fund. So we single women have to do what we have to do.

Personally, I felt less like a "sick person" because I was doing all my own things like normal.

If you plan well, you can definitely do chemo alone with no problem.

BUT and this is a big BUT- I don't have kids. I have a 26 pound Maine Coon.

If you are a single mom I think you might have a lot more trouble than someone like me.

But just remember that you get through it. Somehow the things get done, the food is shopped for, the bed gets made, and the chemo finally ends and you are back to yourself again.

Hugs,

g

sam52 · January 2008

I was (and still am) living alone with my son at the time of dx.Although he was 17 at the time (end of 2001), he has an autistic spectrum disorder, so no chance of him helping me with anything.

All my family live several hours' drive away; however, they were there to help at essential times.

When I was having my mast, my son went to stay with one brother - although that didn't work out, and he had to come home again. Fortunately, my parents were staying in my house for the week (in UK you get to stay in hospital for 6-8 days for a mast), so they could come visit me,and they were able to care for my son til I got home again.

When chemo started, my other brother changed his work schedule (not easy as he was lecturing/researching) so that he could take me and stay the first night afterwards. This was really necessary as it turned out, as I was always very weirdly affected by the dexamethasone I/V and was totally 'out of it' for 24 hours.

I was hospitalised twice with neutropenic sepsis during 8 lots of chemo and the brother who lives nearest (2 hours drive) was able to come and take care of my son for those days.

In all I only had to go to 2 chemos alone.

The worst bit for me was when I was on taxotere; I was really,really sick for 3 weeks out of 3 and could hardly walk across the room.This is when I needed help most with things like shopping.I had a couple of friends who did help out, but somehow most of them did not appreciate just how awful I felt, since I had done quite well when I was on FEC.I found that work colleagues were actually more helpful in this respect.

The thing that I really envied my sisters who had husbands/partners was the emotional support, although I know that some are not actually that supportive.I would have loved a cuddle and a strong reassuring arm around me many times.

I didn't even find this site til I was 2 years post-dx! I just was not computer-literate in those days.....

I realise that this is an account of what happened to me.......not very helpful for others in this situation! However, what I would say is that you should not be afraid to ask people for help - mostly they will be very willing to do this, and will be glad to be of some use.Often friends are just not sure what to say or do when you are going through all this hell.

It is certainly not easy being single with bc; but it is just something you get on with, since you have no choice.

Sam

nowheregirl · January 2008

I am absolutely like Gina. I have never got any support (except from everyone on these boards) physically, financially and emotionally. Thank Goodness my private insurance didn't cover anything at all due to my medical history and my public insurance only covered 30%. So there was literally no way that I could quit my job. I haven't taken one single sick leave ever since I got this disease except when I was hospitalized for a lumpectomy. My parents are too old to help me and they have their own health issues (my dad was dx'd colon cancer a month before I was dx'd and my mum has been suffering from hepatitis C).

Thankfully I didn't get so many side effects from Taxol, rads, Tamoxifen and Lupron. But when I was on EC, it felt like I was having an extremely long sea sickness that would last two weeks. But since there was no one that I had to take care of (other than my two cats), all I had to do was just rest after work.

I know my story wouldn't really help anybody but just wanted to share and tell you that you can do this if I can!

Hugs,

Fumi

Anonymous · January 2008

This is all fantastic advice and I sure wish I'd read some of it before I began my journey. I was raised in a family whose message was that illness equaled weakness and defeat, so I carried thatmessage into my treatments. i allowed my ex to drive me to my first chemo and to my lumpectomy but, otherwise, I was stubbornly independent and never asked anyone for any help at all and even got pissed off at people who offered their assistance, thinking that they were trying to humiliate me Undecided

So I got through it, but I think it was harder than it needed to be. If I had it to do over, I'd accept offers of help and request help if /when I needed it and just continue to be grateful.

Thanks for starting this, Rockmom!

~Marin

Anonymous · January 2008

Help is hard to ask for. We should really "appoint" a person to enlist the help. Someone who isn't shy about asking and scheduling the needs. I mean, who wants to call and say, "Can you come to my house and clean?" or "Can you cook meals this week?"

We could call the person our Needs Assesment Captain!

snowyday · January 2008

I was lucky that my sister came and stayed with me for four days for each chemo treatment, she shopped and checked on me but the rest of the time I was alone. I hate complaining when I'm sick around people so I'm surprised at how much whining and complaining I let loose on this site. But without this site I would have felt truly alone. My son would come over and offer help but I always felt I didn't want him to see how really sick I was. It's that independent streak I just can't seem to get over. I have learned that I hurt a few people's feelings, by not accepting their help so that's something I learned from this. I'm grateful I had my sister for a two days before and two after chemo it really helped and we always managed to have few good laughs and that was most important to me. But there are alot of women who just need someone around more and I wish there was something in place for them in Canada. Also financially it's killed me I get by but that's about it I have to be very careful. That is something I would like to do if I win my Malpractice suit. Start up a foundation to help women who really don't have the money to pay rent and take care of basics, it's a dream now but I really want to start a not for profit organization and put money into and get fundraising going to continue it. It may be sort of strange to some people but I liked being alone when I was sick because I could sleep when I wanted, eat when I wanted too, and alot of times I didn't want to talk about cancer and being alone I didn't. But when friends would come over I found it so tiring just to keep a conversation going and of course that would make them want to know more about my cancer and how I was doing and at first I really just wanted a tape recording I could play to tell them and go to sleep. I'm so glad the rads are over and I'm healing oddly I'm still so damn tired all the time that annoys me, but it should go away soon. But my heart really goes out to people who don't want to face this alone it must be hard.Pearl49

Anonymous · January 2008

Sunflowers, there is a list already, I think its under the Treatment forum.

jdash · January 2008

wow this is such a great thread wish it was started long time ago

i am a single mom with 2 kids and at the time of my dx i had 2 jobs

i had supported my late husband thru his cancer dx till he lost his battle 5 yrs later he was 32 that was 18 yrs ago

my first dx was at 39 and i was remarried lived in nice big house had help (long story for another time)

had to continue working thru my 2nd dx at 49- no savings to fall back on (that was scarier to me than the cancer) and older daughter in college to support - i felt so angry that i had to go thru this alone, that i had been there for my husbands every single treatment, every night thru all his hospital stays all our trips around the country ending in germany for treatment and i kept thinking where was he now to go thru this with me!!! so not fair

thank god i have an amazing support system of friends and my parents- they came with me to my doc visits and they all took turns at chemo treatments- they all chipped in and surprised me and paid for my wig, helped with food shopping etc they really were incredible but at night when i would lay in my bed still the same worry-what would happen if i became to sick to work and couldnt pay my bills

i think about all the single women in this situation who get dx - its not just the financial strains but the emotional ! its all so overwhelming- i wish i had the time and the funds to start an organization that focuses on the needs of the single women going thru bc - no one should ever have to be alone thru all of this !!!

beth is there such an organization????

Anonymous · January 2008

I really believe the single women get forgotten ... I know that even in the churches, single women get forgetten. Couples and families seem to help each other ... you know the other fam comes over and the guys work on a project -- fence, roof, putting up lights, etc. Single woman asks same guys for help and offer to make dinner and end of the night, the friend's hubby says, well since I'm off work, you made dinner, the charge is only $ _____.

Being single is very hard!!

badboob67 · January 2008

I was thinking about this very issue this morning. I am not single, but 40 years old and married with three kids. I have been a stay at home mom and the "plan" was to go back to school/work after my youngest began junior high. He's in 6th grade now, so I obviously didn't get to work that plan.

I live over a thousand miles away from all of my family. My husband's parents live near us, but have some pretty severe health issues of their own. I was very fortunate to have active support from my church and my boys' schools when I was diagnosed with mets from the start and didn't have insurance. My husband was a truck driver who lost his business because he couldn't be on the road during my surgeries and treatments as there was no one else to care for my children.Our church and my kids' schools had fundraisers and brought us food for a long time. Still, even with that help (and my mom flying in to stay for weeks at a time), it has been very difficult just getting the day-to-day stuff done. I cannot imagine going through this alone. It must be terribly difficult.

Because I spent countless hours researching sources of financial assistance for which I might be eligible, I collected quite a list. I am in the process of compiling the information and have posted what I have so far on a WIKIspace. The link is: http://bb67.wikispaces.com . One link that might be particularly helpful in a practical way is: http://www.cleaningforareason.org/ .

This is a group of volunteer maid services that donate free housecleaning to cancer patients. My wikispace has some information about financial help, too. I am wondering if local MEALS ON WHEELS programs could help with meals? I have not yet checked on that. The United Way has started implementing a program where one can dial "2 1 1" and be connected with the United Way in your area. They are supposed to have a list of resources available in your area.

I think it was LuannH that mentioned a site before that allows you to post things you need help with and let your friends choose days and times to coordinate. I cannot recall it's name. Lots of people want to help, but feel at a loss as to how and when. The site she talked about really sounds like it can help a lot. I'll see if I can get the link for you.

For single parents, I haven't looked into any day-care programs or other services. Help is surely needed in that regard. I will have to do some research in that area to see if there's help out there somewhere.

I wish there was more I could do.

Diane

badboob67 · January 2008

I found the link. It is: http://www.lotsahelpinghands.com/

From the site:

Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion. It's also a place to keep these ‘circles of community' informed with status updates, photo galleries, message boards, and more
============
There is also a site called Imerman Angels:
http://www.imermanangels.org/
Imerman Angels
This site can pair you up with someone who is a cancer survivor. The "angel"-patient relationship is defined by the participants, but the site did suggest that some "angels" go beyond phone calls and verbal support and do things like going with you to your first chemo appointment.

chemo072 · January 2008

bad boob - I thought Linda Creed was place-specific for some reason.

And there's another foundation....let's see....someone Ireland or something like that? Jennifer Ireland? sorry not to remember at the moment.

Great to know about the cleaning service!

Also, some ACS chapters, like the one here in Portland, don't have funding for the transportation reimbursement etc. that other chapters have.

Barbie7 · January 2008

Hi Ladies,

I am SO happy that this thread was started. I don't remember seeing this forum before - is it new?

Anyhoo, although I'm not in chemo, I am in the middle of radiation and I'm having a tough go - emotionally and physically. I've got a great family and lots of friends offering help, but I'm one of those stubborn ones that just have a hard time accepting it. Friends and family have offered to go to appointments and treatments with me, but it seems so silly when the rad treatment is only 15 minutes. I don't want them at my doc appts. because then I'm more concerned about how they are taking the news than listening myself. I don't want others to worry - I know that I cannot control this, but apparently, it doesn't stop me from trying.

By way of help I have accepted, my parents were with me for my lumpectomy, and my Mom stayed at my home for the night (they live 2 miles away). I accepted help shoveling after my surgery, but I'm doing it all now during radiation. Some folks will call on the way to the grocery store, and offer to pick something up, and that has been a tremendous help. My sister has made me some food as well - also very helpful. My siblings all have young children, so they have the time for me after they've attended to their own families (I wouldn't have it any other way), although by then, it is 7:30 or 8:00 and I'm usually down for the count. The other problem I have is that I don't know what I need until I need it, then it is difficult for me to pick up the phone and ask. When someone offers generic help, it is hard for me to accept it.

The oddest thing of all is that although I feel like @#$%, I look fine. Other people take their cues off of how we look, so when I don't look sick, the offers to help are fewer. I look fine, but I'm far from it. Odd how that works.

The most difficult part for me is coming home to an empty home every single night.

Barbie

Anonymous · January 2008

Barbie- I think that you've brought up one of the most important difficulties that we, as single women, have throughout this journey...."coming home to an empty house" and all that that suggests. When I'm feeling healthy and strong, the empty house is my refuge and respite and I actually look forward to shutting the door behind me and cozying up with myself and my cats. But when I was in treatment, I really yearned for some comforting arms ready to envelop me and make me feel protected and comforted. Even the presence of a warm body and the knowledge that someone was just there for me would have been welcome. It really is so hard to do almost everything alone, from picking up your drugs at the pharmacy, to keeping your home clean, to calling a repair person when something goes haywire. And it's often the emotional burden of feeling so goddamn responsible for it all that really wears us down and makes us so weary. Physically, as you said, we can look great and everyone thinks we're fine, but inside we're sometimes screaming "I'm so freakin' tired of this and I want a break!"

I hear ya, girl. I guess the only way to ease the burden is to try to accept the help we can bring ourselves to accept and to be as gentle as possible with ourselves for the rest. If no one else is gonna pamper us (whether because we feel too guilty letting them or there just is no one), we had better do it for ourselves.

Chocolate, wine and bubble baths....those are the essential getting-through-treatment tips for the single girl! Cool

~Marin

Anonymous · January 2008

Marin .... another nail on the head, trying to keep the house in good repair while going thru treatment alone! UGH ... and trying to schedule repairmen ... and reschedule since they did shoddy work!! And giving you the runaround since you are a woman!

Bugs · January 2008

AND have your married friends tell you "You shouldn't be doing stuff like that, you should be resting". Then get your arse over here and do it for me, cuz the dust bunnies don't seem to be pulling their weight! Hellooooo, who else is going to do it?

LOL...woops..must be a sore spot still.

Bugs

Anonymous · January 2008

Woops! LOL !

Undecided It was a constant sore spot for me .... friends telling me to take time off and me wondering who in the heck would pay the bills?

jdash · January 2008

BUGS and ROCKTOBERMOM

SAME SORE SPOT HERE ! I LOVE MY FRIENDS DEARLY BUT THEY HAVENT PAID A BILL MAYBE EVER NEVER MIND THE STRESS OF BC BUT THE FINANCIAL ASPECT IS OVERWHELMING

Anonymous · January 2008

Speaking of the financial aspect of bc, I was thinking the other day about how my view of money has changed so radically since my diagnosis. I was fairly casual about it before because I grew up rather privileged and married a man who was frugal and productive (or as we used to put it, he was a "good provider" Wink ). After my divorce, I figured it would eventually all even out and just bought what I needed. Then bc became my rudder and, thinking I was going to crump anyway, I spent money like it was water. After treatment, I continued to "treat myself" because "I deserved it" but it finally caught up with me and I recently had to file for Chapter 13 bankruptcy. It horrified me, for sure, but I must say that, for the first time in my life, I actually feel as though I'm taking responsibility for myself and I'm very proud of that. Today, a dollar is absolutely finite to me and not like the loaves & fishes that multiply when needed. Believe me, it was quite a revelation! I'd imagine, though, that most of you single women are highly responsible and frigal, if only out of necessity.

It's just mind-boggling to me, the revelations and changes in world view that come out of the awful bc experience!

~Marin

Traci-----TripNeg · February 2008

Hey girls,

My cancer actually helped me with the house stuff.

I had this huge tree that almost came down in the hurricane two years ago. Imagine: the roots were covered with grass and dirt, you couldn't see them. After that hurricane, my nephew literally crawled under a root that is about a foot in diameter. Anyway....so this tree had to come down. I was getting estimates anywhere from $1300 to $2000. A friend of a friend new a guy who did trees. When he came over, I made sure I had no makeup on and a yucky scarf. I apologized for my appearance. "I'm sorry I look like this...I got cancer and am going through chemo". He charged me $400.00.

I've got my house on the market. It's just too much and, I don't like having a roommate.

Cancer made me change careers and things are tighter now than they've been since I was 18. I'm scaling down and simplfying my life. I'm thinking townhome so there is no exterior maintenence....

: ) Traci

LorenaB · February 2008

This is a great thread. I am a single mom (age 41) with an almost-7-year-old and I'll be starting chemotherapy next month. My ex-h lives about 20 miles away but he has offered to rent an apartment nearby during my treatment so that my son can stay with him if I'm not up to taking care of him. (We haven't found one yet but I'm looking.) My parents came up for my lumpectomy (they live in another state) and are willing to help as much as I need them, but I like my independence and certainly don't want them moving in with me or anything (too much emotional baggage + I only have a 2-bedroom apartment!). I do have a boyfriend but I'm not sure yet how he's going to deal if/when I am really sick, plus he has his own 2 kids who are with him on the weekends.

When I get closer to chemo time I'm going to reread all these challenges and suggestions to help myself prepare. I hope you all will keep this discussion going. Thanks!

Anonymous · February 2008

Lorena...This is the perfect place for you to hang out as you go through your treatments. Many of us have weathered that journy, while others are like you and just beginning. And that's what we're here for...the support and lots of good ideas!

~Marin

Anonymous · February 2008

Lorena, how are you doing? Has your ex found an apartment nearby?

LorenaB · February 2008

Hi, thanks for asking! I have a couple of leads for an apartment, and we may be able to get gently-used furniture from a local nonprofit. Since I won't be starting chemo until the end of March, I think April 1 would be a good time to start a short-term lease. Luckily my parents have offered to help pay for this, as ex-H is only working part time while he finishes up nursing school. AND he and his girlfriend have a brand-new baby. (Sometimes my life feels like one of those Mexican telenovelas!) Fortunately I have very good health insurance so I don't expect that medical treatments will put me into debt, but considering the costs of housing and child care in Massachusetts, I certainly don't have any extra funds to spare -- I'm mostly living paycheck to paycheck.

I just had a second surgery two days ago - re-excision and axillary dissection (is that what it's called when they go in and take out more lymph nodes?). So far the recovery is quite a bit tougher than the original lumpectomy -- my arm and shoulder are really stiff. My parents are helping me out a lot with cooking, laundry etc. - they are staying in a local hotel and my son is staying with them over the weekend.

Boyfriend is still clueless. He didn't call to check on me the day of my surgery. But when I called him that night (in my semi-loopy state) he was clearly happy to hear from me. When I asked him why he hadn't called, his reply was, "Oh, I didn't know when you would be home from the hospital, or if you were sleeping. Should I have called?" Umm, yes, you should have called! I don't know whether he's keeping his distance because he's scared, or because he doesn't want to have to meet my parents, or whether he's just not that interested in me anymore but (as I said in the Valentine's Day thread) he's sticking with me because it would be mean to dump a woman with cancer. I really do NOT need this extra bit of anxiety and uncertainty at this point in my life!!!

How is treatment going for the rest of you?

MinAZ · February 2008

Ladies - Thanks for this wonderful thread! I had mastetomy and my sister was able to come from California and stay with me. But now one of my best friends, an older single gal with no family, has just been diagnosed and will need chemo then surgery. I've just sent this thread to a couple of her other friends hoping to get their commitment to help her. She's not a church goer, but she is active in a couple of groups and I'm hoping some of them will offer help also. We all have various commitments but if we work together we will get her through this!

Minz

Anonymous · February 2008

Lorena, sometimes boyfriends just don't know what to say. When I told mine that I thought I had another lump, he said to have faith and that sent me into a tirade (in my head) and I was not wanting to talk to him for several days. Lots of times, if they don't live with you, when you have kids, there is lots of phone contact and not the face to face, you can't see the expression on the face and maybe even the confusion he might have had.

LorenaB · March 2008

Hey there everyone, I just wanted to revive this conversation since I'm going to be starting chemo on the 27th of March. I have a good support plan for the first session -- my boyfriend will come with me to tx (he really is hanging in there with me, yay), then my sister will come stay with me for a few days, and my son will spend 3 nights with my parents. My ex-H will be moving to our town in early April (he decided to make it a permanent move, well for at least a year) so for future tx our son will stay with him. I figure I'll ask a different friend to take me to the hospital each time so I'm not a big burden on any one person. Coworkers have offered to help with meals -- I just have to remember not to be shy about taking them up their offer!

I'm a little more worried about how I'm going to deal with recovering from a big surgery alone (going to have a mastectomy + reconstruction, probably in June) but I guess I'll cross that bridge when I get there....

Are there other single people who are just starting chemo or going into surgery?

Lauren

Dealing with Chemo Alone

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