Practical tips for day-to-day matters- please share with us

Moderators

Please let us hear (in short or great detail) some of your most difficult day-to-day issues/struggles/concerns, that are unique to you as someone with metastatic breast cancer. Please also share what, if anything, has helped you to deal with or accept them.! Tips on managing child care, home care, meals and errands?

We have collected very helpful and powerful statements from other topics (e.g. Living with MBC), but wondered if you would like to share more here. Your continued insights will help guide our new content on our site, that will help others living with metastatic breast cancer.

For example, how do you "just say no" to the messy house, or the dinner NOT prepared?

How do you manage the balance between life and treatments (or side effects and emotional ups and downs)?

What to you do to help yourself say it's okay to leave things and take a nap?

What do you say to yourself to get through the work day, or ups and downs with children?

Thank you for sharing!

illimae

I don't know if it's the stage IV or chemo talking but I was very clear with my employer/supervisors that I would rarely wake up to an alarm anymore. Rest is critical now and I'll get in when I get in.

On a personal note, it was very difficult to prepare my DH to pay bills, insurance, accounts, etc. I still handle it but those are tough conversations.

I've found the info and understanding in this community vital to surviving my diagnosis and beyond.

Moderators

Thanks for sharing, Illimae!

Moderators

Bump! Can anyone weigh in?

Some additional info:

Metastatic Members, we need your help for practical informationa about day-to-day responsibilities and challenges you face. Breastcancer.org will be developing new metastatic breast cancer content about finding help for day-to-day responsibilities. This content will provide information on identifying new resources to manage child care, home care, meal preparation, errands such as grocery shopping, and more. Breastcancer.org will incorporate suggestions from its Discussion Board contributors into this new content. Can you help by adding some more challenges you face on a day-to-day basis on this thread or content you'd like to see? Thank you!

Becs511

As an MBC patient, I think you may have problems gathering information on this topic due to the wide spectrum of MBC patients and our lifestyles and experiences. We all have different needs and responsibilities on a day to day basis. So while what applies to me, a single woman, who was diagnosed stage 4 de novo, with no children, living in a major urban area where everything is eaisly accesible or deliverable (New York City), who continues to work and has limited drug side effects, will not apply to a woman with younger children to take care off, a husband/relationship to maintain, insurance and financial concerns, and the need to drive to appointments and to run errands, despite dealing with fatigue, naseua, and lower than normal blood counts.

Other than having out cells betray us, I think the one thing we all have in common is living in constant fear of the next scan, the next doctor's appointment, the next failed treatment protocol, the next progression. Living while waiting for the other shoe to drop. I just try to not focous on those things and stay invested in the things and people I loved and cared about before my diagnosis. They keep me grounded. I am a three demensional person. I am more than cancer and more than my disease. I refuse to let it define me or my life. Keeping myself connected to who I was is instrumental to both my meantal and physical well-being.

Moderators

That's perfectly said, Becs511! We need exactly these kinds of statements.

That said, if there is any practical advice that could also be helpful, and maybe not immediately obvious, e.g. apply for disability, ask your boss to start work a bit later, use xx service to have food delivered, etc. we're looking for that as well. We can write our suggestions, but so much better to hear directly from those who are living it currently, and seeking to find the daily life balance.There is probably a lot of creative solutions out there that could ultimately help someone else.

Thank you!!

bigbhome

As a MBC member, I find my biggest challenge is dinner time. Usually, I find myself all out of energy by 4:00pm, so dinner is a struggle. We do not live in an area that has deliveries, except from Amazon, so I have found ways to make many meals out of one meat. For instance, I will buy a roasted chicken at the grocery store, bake some sweet potatos, make a vegetable. That is the first nights dinner. Then I will make chicken quesadillas the next night, then maybe the following night, throw in premade alfredo sauce with some broccoli and fettuchini. 3 quick and easy dinners. I also will cook up a pound of bacon and make eggs and biscuits the first night, then make BLT's and salad the next. Then maybe a bacon, tomato and spinach omelette.

Also, on days when I feel good, I will make a large dinner with plenty of leftovers. Or a big pot of soup I can freeze in small portions for later.

Since I have bone mets in my spine, and 2 discs in horrible shape, vacuuming is no longer an option for me. Nor is scrubbing out showers and floors. I found someone inexpensive to come in and do all those things for me once a week. Before that I would announce cleaning day to dh and we would divide up chores according to what I could and couldn't do.

I hope some of this helps.

C

Lita57

I don't stress out over an unclean house anymore. I do what I can and DH helps out. Like Bigb, I have more than just spinal mets to deal with (degenerative arthritis and three bulging discs in my back), so I can't get on my hands and knees to garden or clean the bathtub.

I can't stand up for long periods of time, so I went to Costco and got an inexpensive bar stool. I can sit by the counter top and cut up vegetables and meat now..

File for Social Security disability insurance as soon as you can if you're no longer able to work. Being Stage 4, they will put you at the head of the line so you don't have to wait months and months to get your first payment.

If you don't have pollen allergies, buy yourself some flowers once in a while. They will cheer you up. Go to Starbucks and buy a nice latte when you're off cycle, and sit outside and enjoy it. Go to your local park more. Being out in nature is mentally soothing and helps take your mind off your health.

Get a big calendar to write all your appts, blood draws, and infusion times on. Managing all this crap is a full-time job. Set up an easy-to-use system of filing. I use a separate file box to hold all my binders and files. Keep it updated so it's not overwhelming.

Don't be ashamed to ask for a Rx of anti-anxiety medication if you need it.

Friends who aren't helpful and who only stress you out - get rid of them! Make new friends by joining a real life cancer support group.

If I think of anything else, I'll add it 😉.

Kimowsley

we eat out a lot. It's just too hard to get dinner cooked most days. There are days I go without a shower because I'm just to tired.

Lita57

Kimowsley, I don’t shower every day because the chemo dries my skin out too much. I don't perspire as much any more either...chemo makes me run cold.

We have one of those Toto Wash-o-let toilets (automatic bidet-like system). So the "privates" get washed a couple of times a day. It's great - totally hands free.

Cafelovr

I was diagnosed with MBC in 2009 when I was 37. I worked all through my chemo, taking chemo day off and leaving early when it "hit" me. I've also taken Tamoxifen since July 2010, which over time makes my joints stiff and achy. I also get tired very easily. I just push through the pain. My house isn't the cleanest, but the dishes are always done and I try to have a hot meal on the table, whether I feel like cooking or I get a rotisserie chicken like Bigbhome does. My DD was 6 and now she's 14. She's a great help with housework, and my DH is a life saver. I continue to work full time. I could go on disability, but I guess I just want to be normal and not be a statistic/victim of cancer's disparities.

The part that drives me nuts is the cognitive funtions. I forget names of things or names of people. I can describe something silver that you eat with and mimic the action, but I forget the word is fork. For me, that's the worst part...

Moderators

Thank you All for sharing!

DivineMrsM

Just came across this thread.

For newbies, ask for antianxiety or anti deppresant medication. It is okay to ask for it. Mbc is not something we have to power thru with no help. I did it for me, but found that taking the meds made me an easier person to live with, so it helped my family, too. Even if you never took medicine before for anything, like me, ask for the meds if you need them. I had to swallow my pride and glad i did.

Do not search a lot of stuff thru Dr. Google. Do not scare yourself like that. Lots of misinformation out there, learn the right sources to go to and stick with them.

Often, the hard part is knowing what you should give your attention to and what can be put off. Slow down and take things one day at a time. SIMPLIFY. This may take some time, but cut out unnecessary stuff wherever and whenever you can. Sometimes we are trying to live up to society's expectation of us. Listen to inner nudges telling you what to do.

Learning to say no can be empowering. If you cant say no immediately, stall and say, let me get back to you on that, if someone is pressing you to do something you'd rather not. Learn to flex that no muscle.

Lynnwood1960

I agree with Divine! I read this in the book Don't sweat the small stuff years ago and it has really stuck with me.....Just because someone throws you a ball, it doesn't mean you have to catch it.

DivineMrsM

Like Illimae, I do the bils and other paperwork. After diagnosis of mbc, I began to keep a notebook with all the different user names and passwords for all the online sites that were important: bank, health care, department stores, email, credit card, ect. It is surprising how many of these things we do online these days. We keep it in a very safe place. It is actually a relief to know this info is recorded.

The first year I was dealing with mbc, I asked my husband to take over the paying of bills and other paperwork. It overwhelmed me, plus I had neuropathy in my hands due to chemo. As time went on, I was able to resume the management of it. But be willing to delegate some of the responsibilities in life to others and give yourself a much needed respite from some of life's stresses.

Lita57

Some couples have SEPARATE bank accounts and credit cards. Put a list together of your accounts and cards (it is strongly recommended that you DON'T list the actual FULL numbers) so the executor of your estate or the person who will eventually be responsible for things, and your DPOA (Durable Power of Attorney) knows what you have. Keep it in a safe place.

In order to access your accounts (transfer them, close them, pay outstanding balances on cards off, etc.), they will need to go to the bank in person and present either the death certificate or DPOA paperwork (if you're still on hospice).

I'm sorry if all this is disturbing, but we Stage 4 gals don't know how much time we'll actually have. When things start to go down hill, they can accelerate very quickly, and if you're in a weakened state, or, God help you, comatose, you won't be able to get all that stuff together. You want to make it as easy on your family as possible, and you certainly don't want any $ in a lost account to just sit there without being claimed.

Ditto on Divine's password advice! I still have to do that, as a matter of fact )

Consult a good trust/estate attorney, and do it NOW if you haven't already done so. It will take some time to put a living will/trust together if you haven't already done so. And if you already have one, REVIEW it and update it as necessary.

bigbhome

Tuesday night we had yoga for bc people and we were talking about weird reality show we like to watch. Not housewives, more like deadliest catch, swamp people etc. Instructor final said she watches hoarders and after the first couple of episodes, she realized her house wasn't as bad. I instantly remembered a lot of comments on these threads regarding our housecleaning, or lack thereof, and I thought well ladies, when you get really frustrated, watch am episode of hoarders and you will feel much betterLOL!!

Hugs!!

C

Lita57

Speaking of Hoarders, I saw one of the worst episodes ever the other day...spider webs GALORE! I have a pretty strong stomach, but I had to switch the channel. They were everywhere! It was worse than Herman Munster's home. And there were a gazillion cockroaches running around to boot.

Nope, I don't feel bad at all that I haven't mopped my kitchen floor in over a week 😅

Lita57

These are emotional tips for the newly diagnosed with Stage 4 right from the get-go.

1. We are a special group. (Yeah, isn't that just great...)

2. You WILL be in shock for a while. Take it slow. Give yourself time to process it. (I had NINE mammos, and they could only find mine thru a dye-infused CT scan, mine is callled "occult, amorphic" which means "hidden, without shape")

3. After you get over the shock, you will be angry, depressed, and go thru many other emotions. Once again, give yourself time to process these emotions.

4. It WILL get better after you assemble your medical team and get a treatment plan in place.

5. Stay in touch with the ladies on this board. We have blazed the trail and can help you get thru this hell.

6. If you can, continue to exercise. I have 4 spinal compression fractures (thank you, Mr. Cancer) and 3 rib fractures (thanks again, Mr. C), but I try to walk several times a week with cane and rolling walker. It was hard at first....I'm too young to be seen this way! But pride gives way to practicality. The drugs we're on to keep us alive can weaken our bones and make us achy. Light exercise helps helps physically and emotionally.

7. If you're a spiritual person, now's the time to dig down deep and get back into your faith. It helps. If you're not, try to find some comfort from spending time in nature or in meditation.

8. As things "normalize," (and they will...I'm 15+ months out from dx), find a new hobby, or volunteer, ANYTHING that will help get your mind off the big C. You'll go insane if you spend 24/7 thinking about your situation with no repreive.

9. As others have said, if you need anti anxiety or anti depressants, GET THEM.

10. Look for humor every day. No joke, laughter is great medicine.

Peace and hugs,

Lita

Moderators

These are so helpful, Lita, thank you

illimae

I 2nd Lita's suggestion about humor. After a couple weeks post dx, I realized I wasn't going to drop dead immediately and my oddball sense of humor returned. Once I lost my hair during neoadjuvant chemo, I made me as uncle fester pics for my amusement, a bald emoji and joke about it often, humor helps me stay normal and reminds those around me that I'm still me even in a terrible situation.

mashahinda

I have a question for people in this forum. I would like to know how, if they had Taxol infusions, they experienced it.

To me, taking a drug that is very hard on the body could be worth it if recovery and healing is the end result.

For me, however, there is no cure--I'd be having the infusions purely and only to prolong life, even a life that could prove to be unbearable because of Taxol side effects.

So, taking such a drug, in order to live sick from the chemo is something I question (for myself), and I'm looking for input from others in such a situation--people who have opted FOR chemo, and people who have opted AGAINST it.

So, if someone out there is on "end-stage" chemo, I'd very much like to hear your experience, whether you are happy with it, how many days during a cycle you're feeling "good enough," etc.

Thank you very much,

Marsha

DivineMrsM

masha, I was diagnosed with mbc, with mets to the bone, from the get-go in early 2011. I opted to have chemo to see if it would shrink the tumor in left breast, which was about 3 inx 2 in. Yuck to the size.

I was glad to do the chemo. It did shrink the tumor. I had taxotere and cytoxin along with the bone strengthener, zometa. The chemo was once every three weeks for six rounds. The tumor shrunk to about the size of a small marble. I had a lumpectomy a month after I finished the chemo. One thing I did not do was have the doctor remove the sentinel node. Not necessary to have her poking around where it wasn't necessary.

Then a month later, I began 33 rounds of radiation. I have been on Arimidex and stable since that time.

Dealing with mbc 6+ years now, I am having an exceptional response to treatment. Is it because I had chemo? Rads? The tumor rmoved? A combo of the above? I cannot say.

I felt that the time I took to do the chemo was worth it. It was never, ever unbearable. I lost my hair, had some crappy days, but as time went on, I was better able to handle it. I never threw up, they have drugs now to prevent that. Food tasted weird and I had constipation. I would have one rough week, another week where I was starting to come out of it, one good week, then chemo again for those six rounds. I paced myself and did things during the good week and took it easier the other two weeks. Then Radiation left me fatigued to the bone. I bought a big screen tv and watched it all winter long while I laid around and let myself rest from all my body had been through.

No regrets. Back when I went thru it, I went on the chemo forum here and bonded with other women who started chemo same month as me. It helped tremedously.

I see myself as living with mbc, not dying from it. I have experienced incredible things in the past six years and feel very fortunate about that.

Lita57

Marsha, unfortunately I have no experience with Taxol...yet. That's probably what they'll put me on when Xeloda pills stop working.

Taxol se's are different for every person. Some people hardly have any problems at all while for others it's a nightmare. One thing I do know (others please correct me if I'm wrong), the concentrated amount they give Stage 4 people is not the same as for Stage 1-3. They also "premedicate" you with meds to help with nausea and other se's.

There are Taxol threads in other forums, so you may want to post there. Those ladies are in the trenches with Taxol every day, and I'm sure they have some good insights.

Hope this helps.

mashahinda

Thanks very much for this. Do you have any idea where/how I can find those Taxol threads, what forums I can find them in? I'm also currently on Xeloda (which is no picnic, but not terrible, either), and really just trying to think ahead. Again, thanks so much for responding.

mashahinda

Thanks so much for this response. And yes, wow, a very interesting treatment you had from the get-go. Shrinking the tumor (I also had/have a big one--can't remember the size) and then having it taken out and then the chemo and radiation. A very aggressive regimen when they knew your bones were involved (my bones were also involved from the beginning). Such a treatment wasn't suggested to me--at Dana Farber--and it didn't occur to me to ask for anything like it.

It's wonderful how well you're doing. I will say that my experience in these years since the diagnosis has also been amazingly positive. I really can honestly say, and it's not hyperbole, that they've been the best years of my life.

Again, thank you, and all good wishes to you.

Lita57

Marsha, I see you've already found the Weekly Taxol for Stage 4 thread, and Babs responded.

She's doing quite well, and so are others. All I can suggest at this point is to try it and see what it does. There are other taxanes (I believe that's the family of drugs Taxol belongs to) out there, and if this one is too much to handle, your MO can try another one.

I see from your other post that you've had 5 years....I certainly hope I can go that long - I'm only 15 months out so far. I try not to stress too much because I know there are more arrows in the quiver to fight Mr. C. For me, it's just dealing with the back pain from bone mets, the fatigue from Xeloda, and the stiffness from my degenerative arthritis that makes it challenging at times.

Good luck with your next Tx.

JanetMara

Hi Masha,

I was diagnosed with HER2+ IDC with mets to 5 axillary nodes in Sept 2016, while waiting for appointments with SURGEON, MRI,PET SCAN and PORT PLACEMENT for chemo which my oncologist ordered for me. I immediately I started QUANTUMIN plus,10 drops on every glass of water,it's a food supplement,detoxifier,alkalinizer,the measurement of my tumor was 9.7cm x 4.5x3.5 and it was very swollen and itchy,after a few weeks of taking the food supplement,the itching was gone and I felt relief,swellingis a lot less also.

I had my 1st CHEMO (they called it neoadjuvant therapy) with high doses of HERCEPTIN,PERJETA,TAXOTERE and CARBOPLATIN.I was fine on the 1st 3 days after chemo,then started my diarrhea every 1-2 hours x 2 days,i felt weak,I was nauseated, I still went on to work.On the 7th day,I had a high fever with chills(called febrile neutropenia),nosebleeding due to very low platelets, my gums bled even with soft bristles when I brush my teeth,I broke my teeth due to OSTEOPOROSIS and I had mouth sores,so everytime I eat,my lips nurt and besides I was too weak to even eat but I tried to drink as much as I can,my husband cooked soft delicious foods with lots of hot soup,I felt better but still weak and went back to work on Monday thru Thursday,Friday,I had chills again and went to the URGENT CARE and the MD gave me KEFLEX,it helped me relieve the symptoms but didnt work, I then developed crackles and cough ,so in short I had pneumonia,then I went to see my primary doctor and she gave me AUGMENTIN and and antiviral drug bec. mouth sores are caused by virus. On the 3rd week,I was feeling better but my nails hurt a lot and they turned black starting to come off and my hair started to fall off and I was due for another infusion(supposed to be every 3 weeks for 6 cycles).I dreaded CHEMO and I told my ONCOLOGIST I can't bear the side effects of chemo. January 2017,I met a patient with breast cancer drinking SOURSOP leaves tea,she showed me the name and address and I started boiling 3 cups of water,put 7 leaves and boil for another 30 min till it becomes just 1 cup left,I also reasearched and I've read it as 10,000 times stronger than CHEMO with no side effects,so I kept drinking same tea morning and evening,it even improved my kidney function,urinate better and no foul dor urine and continued taking my QUANTUMIN plus with water.

The office however kept calling me and it was February 9,2017 when I agreed to see my oncologist and have another chemo,same drugs but of lower dose and he ordered weekly blood test for me,I didn't have severe side effects as the 1st time,but still it made me feel very weak,very short of breath.After my 1st week's blood test,my doctor cancelled my scheduled CHEMO due to very low platelets at 38,000 when it should be between 150,000 to 379,000 and at the same time,i was having gum bleeding again and he gave me EPOGEN 1 shot. I did some research on how to manage the low platelets caused by chemo and I found out that eating beets and drinking POMEGRANATE juice helps to increase platelets,last week my platelets was up to 161,000 and already normal,my CEA was 2.0(normal),CANCER ANTIGEN was normal at 1.5 and my CA.27.29 was 12.9(normal).I take iron with vit c (for better iron absorption)folate,B complex vitamins for my anemia.Since then I never decided to go back for chemo,just continued my soursop tea and quantumin plus drink and I felt better and went back to work. June 2017, I went to see my surgeon and she examined me saying the tumor is a lot smaller and she kept palpating my axilla and couldnt feel any,she ordered MRI and the results cameback 4.4 cm3.5 and 2.3 and all the lymph node involvement is resolved,still she believed that it was due to chemo but I attribute it to soursop and quantumin plus.She then performed L simple mastectomy with axillary node dissection, she advised me to have these nodes taken out to be on the safe side.I have an appointment tomorrow and will see if she has the results of the lymph node pathology. She advised me to do another CHEMO and radiation but I planned to continue my 2 drinks of soursop leaves tea and quantumin plus. I wanted to live with a quality of life with my current drinks than to prolong my life with very serious side effects of chemo,I know God is on my side and so with all of you my friends having MBC.

Lita57

juamara, where do you get soursop? Can you get it at Whole Foods?

ezeelo

Its a very nice tips of web sites this is a very nice thank you so much sharing this post..

CanaLoon

Hi, am brand new to this group. Was diagnosed with a recurrence of BC, to the lungs in July after 17 years of being "cancer free". The letrozole and ribocib combo I am newly on, has left me confused, very tired, etc. Etc. On a practical level the issue for me that took longest to deal with was getting my house cleaned on a regular basis. I just wanted to be able to keep that up on my own. I've hired a cleaning service (($30.00 per person per hour) ... so 3hrs x 2 x $30 ... every two weeks. It's worth it but I keep thinking that if every person who offered me help would pay for an hour, why thar would be wonderful. No one I know has ever put that king of service together, which is too bad. It sounds like a simple issue but i have very mixed feelings about it