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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Practical tips for day-to-day matters- please share with us

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

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jun 13, 2017 06:55AM - edited Jun 14, 2017 05:11AM by Moderators

Moderators wrote:

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!


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Jun 13, 2017 03:40PM Illimae wrote:

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.

Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR-, HER2+ Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab)
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Jun 14, 2017 12:58AM Moderators wrote:

Thanks for sharing, Illimae!


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Jun 14, 2017 06:43AM Moderators wrote:

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!

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Jun 14, 2017 02:56PM Becs511 wrote:

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.

Age at DX: 32. Childhood Leukemia survivor. Triple Positive mets and Triple Negative at the same time! www.theunderbelly.org Dx 5/5/2014, IDC, 5cm, Stage IV, mets, ER+/PR+, HER2+ Targeted Therapy 5/22/2014 Perjeta (pertuzumab) Chemotherapy 5/22/2014 Taxol (paclitaxel) Targeted Therapy 1/16/2015 Kadcyla (T-DM1, ado-trastuzumab) Surgery 6/17/2015 Prophylactic ovary removal Dx 7/1/2015, IDC, Left, ER-/PR-, HER2- Chemotherapy 7/20/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 2/2016, Stage IV, metastasized to brain Radiation Therapy External: Brain Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine) Chemotherapy Other
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Jun 14, 2017 10:45PM - edited Jun 14, 2017 10:50PM by 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!!



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Jun 17, 2017 02:35AM Bigbhome wrote:

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

Dx 5/2012, IBC, Left, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Radiation Therapy 4/16/2017 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Jun 17, 2017 01:17PM Lita57 wrote:

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 😉.

I've been dragged into an "arranged" marriage that I vociferously did not agree to...but divorce is completely off the table now that I'm married to Mr. Cancer. It's literally until death do us part. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/14/2016 Chemotherapy 5/21/2016 Xeloda (capecitabine) Radiation Therapy 4/19/2017 External: Bone
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Jun 18, 2017 07:23PM Kimowsley wrote:

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.

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Jun 19, 2017 07:58AM Lita57 wrote:

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.


I've been dragged into an "arranged" marriage that I vociferously did not agree to...but divorce is completely off the table now that I'm married to Mr. Cancer. It's literally until death do us part. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/14/2016 Chemotherapy 5/21/2016 Xeloda (capecitabine) Radiation Therapy 4/19/2017 External: Bone
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Jun 20, 2017 04:27AM Cafelovr wrote:

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...

Linda J Dx 10/19/2009, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 3, 2/2 nodes, mets, ER+/PR-, HER2+ Chemotherapy 11/23/2009 AC + T (Taxol) Targeted Therapy 1/22/2010 Herceptin (trastuzumab) Surgery 4/4/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/4/2010 Breast, Lymph nodes Hormonal Therapy 7/10/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/28/2011 Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 5/28/2013 Prophylactic ovary removal
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Jun 20, 2017 07:50AM Moderators wrote:

Thank you All for sharing!

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Jun 20, 2017 02:36PM DivineMrsM wrote:

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.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~
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Jun 20, 2017 11:28PM Lynnwood1960 wrote:

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.

Dx 4/6/2015, ILC, Right, 3cm, Stage IV, Grade 2, 0/12 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib)
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Jun 21, 2017 01:25AM - edited Jun 21, 2017 01:27AM by 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.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~
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Jun 21, 2017 07:57AM Lita57 wrote:

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 :o)

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.


I've been dragged into an "arranged" marriage that I vociferously did not agree to...but divorce is completely off the table now that I'm married to Mr. Cancer. It's literally until death do us part. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/14/2016 Chemotherapy 5/21/2016 Xeloda (capecitabine) Radiation Therapy 4/19/2017 External: Bone
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Jun 22, 2017 11:18AM Bigbhome wrote:

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

Dx 5/2012, IBC, Left, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Radiation Therapy 4/16/2017 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Jun 22, 2017 03:18PM Lita57 wrote:

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 😅


I've been dragged into an "arranged" marriage that I vociferously did not agree to...but divorce is completely off the table now that I'm married to Mr. Cancer. It's literally until death do us part. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/14/2016 Chemotherapy 5/21/2016 Xeloda (capecitabine) Radiation Therapy 4/19/2017 External: Bone
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Jun 24, 2017 05:20AM Lita57 wrote:

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

I've been dragged into an "arranged" marriage that I vociferously did not agree to...but divorce is completely off the table now that I'm married to Mr. Cancer. It's literally until death do us part. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/14/2016 Chemotherapy 5/21/2016 Xeloda (capecitabine) Radiation Therapy 4/19/2017 External: Bone
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Jun 24, 2017 06:38AM Moderators wrote:

These are so helpful, Lita, thank you

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Jun 24, 2017 07:07AM Illimae wrote:

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.

Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR-, HER2+ Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab)

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