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Topic: We need advice on what a caregiver needs to know/do during chemo

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Aug 4, 2020 12:10PM

Moderators wrote:

Looking for practical and experiential advice on what a caregiver needs to know/do to support their loved one during chemo.

Please share here and also let us know if you wouldn't mind being interviewed by one of our writers (send us Mods a PM with email). Thank you!

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Aug 4, 2020 12:25PM MountainMia wrote:

Caregivers need to know, some days we'll feel fine and some days we won't; some days we'll need extra patience and some days we'll surf through okay; some days we'll have a big appetite and some days we won't want to eat much; some days everything tastes good but we won't want it, and some days it all tastes like crap, but we're starving. Caregivers need to know that some days we feel like we can't do this again, and some days we're eager to get on to the next one.

Caregivers and everyone else should know that if we lose our hair, we don't need endless commentary about how great it looks or how bad it looks. We have ALL THAT commentary ALL THE TIME in our own heads.

Caregivers need to know that fatigue is real. When we have fatigue, that means we can't do much of anything, and someone else needs to pick up the slack.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Aug 4, 2020 12:46PM Spookiesmom wrote:

They need to know you may want something entirely different to eat than what was planned, and you don’t need attitude when you ask them to get it. And if you don’t feel like cooking, cleaning, taking the dog out, they can/should , without being asked

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Aug 4, 2020 01:59PM Smichaels11 wrote:

They need to know that each day is different. There is no linear path to wellness, especially during chemotherapy. One day we may feel great and the next could be awful. If we need to cancel plans, don't be upset or disappointed.

They need to know that hair loss and breast loss can be just as emotionally upsetting as it is physically. Be there to listen and a shoulder to cry on. If we need advice or more than an ear to bend, we'll let you know.

They need to know that finding out you have cancer is to the bone frightening. The fear does not go away when treatment ends. Some of us may spend the rest of our lives afraid of reoccurence. Cancer permeates our psyche in a way likened to war. It is trauma. PTSD in cancer patients is real and should not be ignored or belittled.

They need to know how important they are. They are cosurvivors and we are so grateful for their love, support, and assistance.

Diagnosed at 30 years old. Mom to a 5 year old son. Dx 6/11/2020, IDC, Left, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 7/1/2020 Herceptin (trastuzumab) Chemotherapy 7/1/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/1/2020 Perjeta (pertuzumab)
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Aug 4, 2020 02:52PM Moderators wrote:

Thank you! Please keep the advice coming!

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Aug 4, 2020 03:18PM Jettie wrote:

When trying to help.. Asking can I get you something and then expecting you to know what you want isnt helping :( it just makes it more frustrating, as sometime we dont know what the available options are. Instead make suggestions, yes or no answers are so much easier at times.

Dx 2/14/2020, IDC, Right, 5cm, Stage IIIB, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 3/11/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/11/2020 Herceptin (trastuzumab) Targeted Therapy 3/11/2020 Perjeta (pertuzumab) Surgery 8/11/2020 Lymph node removal: Right; Mastectomy: Right Radiation Therapy Whole-breast: Breast
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Aug 4, 2020 06:46PM cyathea wrote:

Jettie‘s comment is very helpful. My DH often says things like, “can I get you a glass of water, coffee, juice, ...?” This encourages me to drink when I’m working on my computer. He also occasionally offers me fruit or other healthy snacks during the day. This is helpful to keep nausea at bay with eating a little several times a day rather than three larger meals.

When my DH says “what do you want for dinner?” It is a much harder question to answer.

My DH gives me space to escape into a movie, book, magazine, etc. Sometimes I need to forget I have cancer.

I’ve received various gifts from friends and family. They were all appreciated even if I didn’t need or use the items. They were given in love and they made me feel supported. Things that I use the most include a super soft cuddly blanket, a scarf, a soft bamboo head covering, an iPad/phone pillow holder, and ginger chews. A surprise loaf of freshly baked bread and invitations for a home cooked meal were lovely (pre coronavirus).

Things that my DH does for me that are wonderful include: grocery shopping, cooking dinner, sweeping/swiftering the floor, watering the house plants, and loading/unloading the dishwasher. (I’m very lucky in the husband department.)

One thing I feel is important and could have even more of is physical touch. Without my breasts, hair, eyelashes and eyebrows and having gained some weight, I don’t feel good about how I look. Hugs of all kinds are the best. A back massage or foot massage is heavenly. It takes a lot of pleading to get this and it is quite rare. 😉

I also think it is important for caregivers to have their own support network and/or therapist. My DH has a college friend that he talks to on a weekly basis. He shares his burdens and fears with his friend and that helps him and me. Having him “freak out” that I’m dying is not helpful. We talked about this in the beginning so we are on the same page about things, but it would be depressing to hear this over and over again.

My Mom took care of me and my drains after surgery. She is a saint. Although I could have done the drains on my own, having her do it was incredibly helpful. If I had been by myself, I probably wouldn’t have been very diligent with this task.

If I tell my DH that I need to vent or complain about something, I don’t want a “solution”, fix, lecture, or demands to call the nurse. Just let me vent. Listen (or even just pretend to listen) and then just give me a hug. You don’t need to SAY anything. You can say you are sorry that xyz has happened but don’t give me pity. I am not a victim

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/9/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/18/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/16/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/21/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Aug 4, 2020 10:10PM illimae wrote:

I agree totally on the food. Sometimes a meal sounds great but just can’t be eaten. The caregiver should not take this personally, we taste things differently and while healthy foods are great, if they want pizza, get pizza.

Encourage staying active, perhaps a short walk but do not nag, fatigue levels vary.

The caregivers job is hard and can be frustrating but try to handle it calmly, don’t kick us when we’re down, you can’t begin to imagine what thinking your going to die is actually like.

FYI, my husband says be attentive, patient and sympathetic.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 5, 2020 03:38PM CocoB122 wrote:

An essential part of my healing was that I was able to offload entire segments of household chores onto others. I also appreciated anything that helped keep me in touch with friends, as maintaining relationships during Covid and treatment feels very challenging. Examples:

  1. My husband became responsible for all meal planning, grocery shopping, and nearly all cooking. I still made my own breakfast and lunch, and occasionally a dessert or other treat. But that's all. He is the better cook anyhow, so this was not too much of a change.
  2. My mom purchased a twice monthly maid service for us from the time of surgery through end of chemo. Having cooking and cleaning off my plate gave me time to relax or maybe even catch up on work. But the biggest advantage is that it was simply 2 things that simply didn't need to take up space in my brain anymore, and that is a big stress relief.
  3. Because my hubs was responsible for all things food, we really appreciated it when friends provided meals. Our favorite scenarios were when friends ordered dinner for us, and just texted hubs when and where to pick it up. That was always a fun surprise, and relieved both of us from having to make decisions about where and what to eat. Simply opening up the carry out and seeing "Oh, it's ravioli and salad and cookies!" was so fun. We typically advised friends what day of the week, to ensure that this fell on one of my typically "good" days.
  4. My mom purchased an assortment of bras for me and I have used every single one: front close compression for post lumpectomy, soft bralettes for during chemo (and also comfy during Covid work-from-home), camisoles with a shelf bra that allow port access, and a looser cami that is perfect for sore radiation skin. I would not have treated myself to this, but having nice new underthings just makes each treatment a bit more bearable.
  5. My husband took responsibility for all errands e.g. random trips to the post office so that I never once had to risk Covid exposure.
  6. My friends organized a "drive by" party to celebrate my final chemo: tons of signs, decorated cars, cards, and a gift basket of really luxurious bath stuff. I cried.
  7. My coworkers ensured that I would have a gift each chemo day. Cupcakes from my favorite bakery, bottle of my favorite wine, restaurant gift cards, individually packaged snacks for chemo days, all with lovely cards. I loved this because it helped keep me plugged into work relationships that otherwise may have faltered with the double-hit of Covid restrictions and my treatment.

Dx 3/2020, IDC, Left, <1cm, Stage IA, 0/3 nodes, ER+/PR-, HER2+ Surgery 3/22/2020 Lumpectomy: Left Chemotherapy 4/9/2020 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 4/9/2020 Herceptin (trastuzumab)

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