Any ideas on weight loss during chemo? I used to weigh like 130 & now I’m 155! WTF!!!! I don’t eat that much & I’m vegetarian but I don't really work out d/t feeling like I’ve been hit by a mac truck! I’ve bern in chemo 1 1/2 years. The steroids are no help!!! I feel like a failure. Any ideas please! Oh & I’m 66

Have you had a blood food allergy test done recently. If your eating foods that are creating inflammation in your body, your body is trying to heal itself, but holding the weight as a protective barrier. And how much pure filtered water are you drinking daily?

All the chemo and radiation changes things, so I found great relief in being tested for blood allergens so I could eliminate them temporarily to let my body heal. A healthy body has no excess body fat. Drinking half my body weight in ounces of water daily, has been by life saver.

Thank you so much for posting this, I have been feeling the same way myself and it's been hard not to beat myself up about all of the crazy things going on with my body.  I am at least two sizes larger than when I started chemo.

Same thing has happened to me! It took me a really long time to get the weight off, but eventually it did! Best things that worked for me were intermittent fasting and also trying to limit sugar. 

Weight Gain on Chemo 😫

Wife had her first round of chemo last Wednesday, need suggestions for stopping the diarrhea, nothing has worked out so far. Going down for some IV fluids again this morning.

Let her oncologist know about the diarrhea. Try a brat diet ( bananas, rice, applesauce and toast ) ask dr if she can take probiotics and yogurt with probiotics. Prayers

Lomotil is a prescription. You can alternate it with Imodium. When that didn't work, my oncologist prescribed cholestyramine powder 3x/day.

My oncologist gave me a prescription. Maybe she could ask for something

Liquid I.V Hydration Multiplier Electrolyte Drink Mix (can get it on Amazon) is amazing. It has helped my mom stay out of the ER for fluids due to all the diarrhea. It will also help with the weakness. The Imodium hasn’t helped us either. Good luck guys ❤️‍🩹

At my worst, I was taking 1 lamotil 4 times a day and up to 8 Imodium per day (2 at a time each time I’d have a bout).

Regular Immodium didn't work for me. But the blue/green gel filled ones worked well. I couldn't always find them in my local store, so I ordered them from Amazon. I often had to take two at a time.

You should really invest in a bidet, it's the only thing that has helped me.  It's much better than the wiping with toilet paper which can be irritating if you are having lots of GI issues.

Wife had her first round of chemo last Wednesday, need suggestions for stopping the diarrhea

Recently someone posted here about using CeraVe moisturizing cream for super itchy skin. I can't thank you enough!!! Since finishing chemo last August I had itchy skin on and off and in the past 2 months it has become unbearable. I tried so many lotions and creams that didn't work. BUT, I ordered CeraVe from Amazon, used it after showering and it's great! Stopped the itch and is not sticky. I wish I could remember who posted but in any case...thank you so much!!!

I made a post about it last week I think. I'm so happy it's helping you!!

Try the sugar scrubs for the shower too. Not Cerave but life changing

Yes! My dermatologist suggested it. I also use on in a small jar for my face. Really helps!

Thank you so much for sharing this! I just bought it for the same reason, in anticipation of the skin issues. So great to hear that it works! Yes thank you to whomever posted the tip! 🥰🥰🥰

CeraVe is definitely a game changer.  I have been using it for years, actually, under the recommendation of my dermatologist.  I've been sucked into some of the much higher priced lotions over time but I really don't feel like any of them work as well or are as cost effective as CereVe! Glad to know we are all part of the fan club here :) 

CeraVe is a game changer for itchy post chemo skin! Thanks for the recommendations

Do/did people ask you about your hair after you finished chemo? How did you feel out handle it? I have had 3 different people mid conversation ask me how my hair is coming along. All 3 times I was shocked, caught off guard, and confused because why would they ask me that. I usually wear a turban because it's just too hot for wigs. My hair is growing out but I'm not fully confident with wearing it out. Too me it's like asking how am I coming along without my breast, it's just something you wouldn't do. I truly don't understand why people ask certain questions especially when it's not the topic of conversion. Also, when we are not on that type of level of friendship.

I recently went to an ER that is not attached to a hospital, so I had to be transferred to a hospital. When the woman driving the ambulance came in and looked at me with my bald head and said, “Cancer patient?” I answered her but thought she wasn’t very smart.

I think most people are uncomfortable with even the idea of cancer if you hey have not experienced it or lived with someone who has. They are probably trying to be supportive but simply don’t know how or what to say. Try to have a response that changes the topic like “I’m fine. Can you believe how crazy the weather has been?”

I think it has made me feel this way because my cancer wasn't the topic of conversation at all. It was just thrown into a conversation that wasn't cancer related. It was also with people I don't regularly communicate with, people that I don't have a close relationship with.

I’m reading all these and just can’t believe how bold people are to ask questions about peoples hair loss to chemo?! My daughter has lost almost all her hair and I swear if anyone commented on it or asked personal questions about it, I would say something rude back.. none of their business and also it’s pointing out that my daughter looks different than they do… which would make her feel very hurt and insecure.. especially since all she wants is to feel beautiful , and then someone points out a very personal struggle for her and making her feel like she needs to explain her situation. It’s very wrong .

Before chemo I had hair past my butt. The day after my first treatment I had it cut really short. It started falling out about a week or so after my first treatment. People ask me "what did you do to your hair?" I wear a wrap most of the time, but when it gets too hot I just take it off. I'm sorry that it bothers you but people are really just trying be supportive and involved and just aren't sure what to say. I feel like (my personal opinion) it's just hair. It will grow back and it is a small price to pay for trying to save my life. 😁 I hope things get more comfortable for you. We will all get through this together! Stay strong my fellow warriors! 💪❤️ Much love to this group.

Yes, this has happened to me.  I'm now on my second battle with cancer and chemo, but honestly losing my hair is as hard for me now as it was back then.  :( 

Did people ask you about your hair after chemo? 😡

Amen to this, sending love and strength to all the warriors here in our group! 

Good Morning! Here's a little inspiration to start your day!

I can’t stop crying. Chemo is killing me! I’ve been doing treatments for almost 2 years. I cry all the time. Tried antidepressants but no luck. I’m ready to give up! I don’t wanna die but thus is sooooo hard! Sorry I’m so negative but I’m not sure what to do. My oncologist doesn’t help. She just says it’s your new normal. Again sorry for all tge negativity!

You need a different oncologist. My opinion, and different anti depressants or increase? You do , and do, and do, until it works! Best wishes

My treatments really screwed with my testosterone levels and I was crying for everything and anything. Can they check your hormone levels? Maybe there is something there.

You are allowed to cry and be negative sometimes. It helps to let the anguish out. I'm sorry you are going through this ❤️🙏

My husband is dealing with "chemo for life" as well. Im hoping he isnt on this schedule forever. He's on an emotional and physical rollercoaster, for sure.

I totally feel your pain here, I felt that way many times.  Love and light to you.  I hope you can think of what's going on now as temporary, even though it's completely all consuming now at the moment? 

Sending love to you all, I know hard this is ❤️‍🩹

I've had two recurrances, I totally understand what you're going through.  Hang in there and try to be kind to yourself. 

I can't stop crying! Chemo is killing me! 

Hi, I'm looking for some help with how to ease the pain and swelling in my legs, especially around my calf and ankles. I've been doing epsom salt soaks and compressions wraps, but if anyone else has other solutions, please let me know because its so painful! 

I went through the same thing... try massaging the area with lotion or oil, which can be painful, but start gentle. This can help circulation so worth a try! 

I tried pool therapy and it helped for awhile, I'd talk to your doctor about it again if it doesn't feel better. 

Compression is good, I'd talk to your doctor about how often to do it because the timing can be important too!

Hi Johna, I am icing my knees as I type this. Leg swelling is the worst! I can tell you that I use Ice on my legs at least 2-3x a day. Sometimes the pain is so bad I sleep with my legs up on a giant pillow or 2 pillows to elevate them with the ice packs on tops. At times I wish I had some xtra large iced leg wraps. Ice helps my legs more than anything else. The warm water therapy did help the inside arthritis pain too. If you have access to warm water pool therapy to just walk or stretch your legs. I try very hard to take a long walk every day but sometimes my legs won't let me. Elevate your legs like, always put them up as much as you can. I always do that and it helps me so much. Lots of Water--Vitamin Water with Coconut Water in it helps me A LOT! It is Pricey so I can't always afford it. This might sound wierd but Old Navy sells cheap Soft Compression Leggings that help my legs so much. You can usually find them On Sale for around $10-15 a major deal otherwise usually $20-30. I wear them all the time. As a leg pain and leg swelling sufferer those are my tips for you. I feel your pain. I truly hope something helps yours Johna. 

What kind of ice packs did you use Helen? I'm trying to get my own leg swelling under control as we speak too!! :)

Hi Elizabeth, 
This leg swelling is not fun especially in the humidity. So sorry you are dealing with that. I use Accu-Therm reusable hot/cold Ice packs sold by Medline at 1-800-Medline RH18RPA. Very reasonably priced about $10 for 2 coldpacks. I got them from my Medicare Company that helps me with getting supplies. These are so easy to put in the freezer and I re-use them everyday and they last for months! I really hope that helps. Best wishes to you ~

Thanks for the great tip Helen!! I am going to look into that today, I have terrible lymphedema. 

What do I do about my legs swelling?? 

Hello! My first post on this group, so I thought I’d do a quick introduction. I’m 24 years old, live in the UK near London and in January 2020 I was diagnosed with stage 3 bs Hodgkins Lymphoma. I had ABVD chemotherapy for 6 months and got my all clear later that year! Unfortunately a year and 8 months into remission I’ve been diagnosed with acute myeloid leukaemia. On Monday I get my picc line placed and wait to be admitted to start treatment. I’ve been told it will be 10 days of intensive chemotherapy followed by 2-3 weeks recovery in hospital and then from there more chemotherapy as an outpatient. I won’t lie. I’ve cried practically every day since I was told I have cancer again. I was planning my wedding, started my own business, was getting to know the new me after cancer. Now my life is on hold again. I’ve never spent time in hospital and I’m scared as it’s not close to my home and now I’ll be in one for a month. So I was wondering for those who have spent time in hospital what are the top things you recommend I bring with me? I’ve already considered packing both of my dogs On a final note. F*ck cancer. I’m ready to kick your ass again

🙏🙏 if you like hard backs then bring your Bible. If not download an app for your phone. Take this down time to get to know Him better 😁 I spent 2 months in the hospital for back surgery, that’s when they found the myeloma. 2 weeks after surgery I was on chemo. I was in and out of outpatient therapy, stem cell transplant, and just recently another 2 month stint for more chemo. I’m home now recovering with my kids and praising God I’m still alive. I read the Bible everyday. Knowing that Jesus gave His life for me makes everything possible. You’re going to be fine. God has a plan for your life just as He does for mine 😁🙏🙏🙏

Comfy bed stuff, a plushie, laptop or ps4 (if you play games) so you can watch TV to pass time and get your mind off things, super comfy pajamas that will be comfortable with the IV. Im so sorry you are going through it again, i had lymphoma as well and am almost exactly a year in remission and just starting my life with a baby and everything im so scared I will get it again too, but we are strong ♡ you are strong

Hugs to you, I know how hard this must be.  It has been a few years since my recurrence but please try to take a breath right now and yes, you are going to kick cancer's ass.

I know what you mean by crying every day, that was me too.  Hang in there, you are stronger than you think.  Give yourself some time to grieve the things you're going to miss because of treatment, but try to keep the mindset that treatment is only going to be a part of your story, this isn't going to define you

This is so hard to hear.  I'm currently on my second recurrence.  I thought I would be OK with it, but when it happened I fell absolutely to pieces.  I have breast cancer myself but I don't think it matters what kind of cancer you have, it's all the same.  It's all just as life shattering.  Sending love and light to you!

for Kristi,
I am so sorry this is happening! Yes, you WILL Beat this Cancer! I am thinking of you and sending Warm Wishes. I have had many hospital stays unfortunately due to many surgeries. Everytime I go in I make Checklists of what Needs to be done beforehand:
1) do at least a months worth of laundry so i don't need to worry about it when i get home.
2) Clean and clean.
3) Stock up on tons of supplies anything you will need when you come home bc you won't be able to lift or carry groceries. So stock that freezer and fridge! Plus stock up on all your toiletries.
4) *this is actually my #1 but I'm just brainstorming. Your dogs-make checklists for taking care of your dogs. Who will be caring for them? Make that as easy for them as you can. They will be without you so that will be hard. Unless they are used to it. My little dog is never kenneled or apart from me so it's pretty rough on him. I made sure he will have everything he needs and I checked up on him daily when I was in the Hospital. Can someone come and care for your dogs when you come back home? I needed 3 weeks of dog walking 2x a day for my pooch. That took a lot of work getting set up.
5) Bring a nice soft blanket that you can put on you bc the rooms are FREEZING! And hospital blankets are like thin sheets. Be sure to ask the Nurses to bring you a heating pad if you get cold. Do not bring your own heating blanket bc they are not allowed. Believe me-I thought about it.
6) it always helps me to have my favorite face products for my night and a.m. routine. A good cleanser-cotton balls-ear wipes-night cream-nice body wash and body lotion plus yr fav. Hair products. Brush comb. Teeth care items. Mouthwash always helps in the hospitals bc they don't smell the best. So nice products with lovely smells from your H O M E even candle wax cubes that is Caramel or Vanilla-essential Oils.
7) I am picky about my feet, so I bring my own pairs of socks.
8) Great M U S I C! 🎶 this should be #2 bc it's super important for your Mood and Lifting yr Spirits. I made Playlists and still listen to them everyday to help me. Also YouTube has tons of Beach, Ocean and Birdsong Virtual Videos to help you 
E S C A P E from that hospital bed.
9) ASAP when you Are Able GET UP AND WALK! With Nurses Help of course. Even walking to the Sink. The toilet. Walk to a chair and sit in it. Walk. Walk. Walk. It helped me S O. M U C H!!!
10) Ask people you Love to visit you bc it helps ! If there isn't anyone chat often with the Nurses bc most of the time they are happy to talk with you. Nurses have literally Saved me so many times with their Gentle Compassion. Nurses care so much. Don't be afraid to ask them for help.
11) Tell yourself-I CAN DO THIS! I WILL DO THIS and GOD (if you are a Believer) or a Higher Power WILL GET YOU THRU! LEAN ON FAITH! I am not that religious but I did lean on my Faith in God so much. I asked my family to Pray for me too! I had many visions and Dreams of God Carrying me and sometimes even rowing me across deep waters!!! It was INCREDIBLE. I truly Believe that if you ask God to be with you-He will be with you.
12) Anything to Keep Believing in Yourself! Do that! Be Gentle with your Body. Take things slow and let your body heal. You will Beat this Cancer!
Thinking of you Kristi and Sending you Lots of Warm Wishes 💖🙏 Stay Strong! Your doggies will be SO Happy to see you when you come Home to them. Think about how Happy you will be when you Come Home. 

for Rose, So very sorry to hear you are going through this. You are right about it doesn't matter what kind of Cancer we all have. Cancer IS devastating! My Mom had Breast Cancer 7 yrs and it is so hard. I have Colon Cancer and just had major surgery. The thing about some of these intimate Cancers that mess with our bodies it's so difficult to have this part of my body literally being "worked on" by tons of people-mostly men! My last tumor in 2017 they took out of my behind with a giant scar-SO big :( that I can't even talk about plus my uterus. Ugh!. I said Women only. Please! That went out the window w/Colon Cancer but luckily the male Surgeon & staff were ALL incredibly respectful and I think they just know how hard this is for a person to have their private parts operated on. My current surgeon left my body practically scarless and I have wept for J O Y and Thanks at his unbelievable thoughtfulness to think, Maybe she doesn't want a bunch more scars all over her body-especially since she has a bunch already
 That he did that for ME and probably obviously everybody he operates on--I feel SO BLESSED! I guess what I'm trying to say is having your personal body being touched looked at and operated on and having to heal from the pain of it....ALL OF IT!!! Is super hard! So I am Sending you very Warm Wishes for both you and your husband. I hope you get better soon. Stay Strong! 🙏💖

Helen omg your hospital checklist ideas are amazing!!! You should write a book on that! Seriously, I never prepared for anything and boy did I regret it! Seems like I just needed some wisdom! 

Rose I'm so sorry about your recurrence, it is so hard to even fathom.  I'm so traumatized by my current situation!!! Helen, I loved what you said about how you feel so uncomfortable when people are working on your body / disfiguring your body - SAME! I'm really struggling with how to process everything that is happening to me, so I'm so very sorry that you find yourself back in these same trenches as us again Rose.  xxxx

So sorry this is happening but what we have found is the mindset has helped SO much! Know that there are a lot of people who would hope to share something to make you smile! I would advise bringing some small items that remind you of something 1) makes you want to kick Cancer's ass even more and 2) a moment in your life that is a positive reminder of strength and happiness. I know my FIL was bringing a photo of his grandkids and his favorite funny gimick toy (he's a character :) ). We're all thinking of you!

If you've got a surgery coming up I would suggest doing everything you can to get your care in order before you go into hospital.  I would always make sure I had lots of freezer meals ready, that I had plenty of saltines and ginger ale and things you want around when you aren't feeling well. 

Melanie-
Thank you so much for your kind words. They really help me to feel less alone. Best wishes to you ~

All of you are so inspiring.  Thanks for sharing your stories, I agree Helen it really does make me feel less alone. 

Advice for a recurrence 🥺

I'm having a hard time. Although I'm currently in remission, and I'm super grateful , I take nothing for granted . I still have the concern this all could come back. As well as side effects that have completely changed my life. I just cannot be honest anywhere about how I feel. I feel like I'm always acting like I'm strong but in reality sometimes I go drive by myself and cry . Then look around at the park or by the river just trying to be thankful I'm allowed to see those things. Before my own struggle. I had to watch my dad struggle a long battle and he lost his battle. I remember him taking off sometimes and just going to fish, or sit at the park and look at things. I had cancer and was taking care of him at the same time, I just didn't know I had cancer yet. How long after being shown NED did you all stop having thoughts of what if? I'm trying to make sure to be there for family no matter what just encase. Trying to make sure I live every day and make it mean something. Did anyone else go through a period like that? I've been NED for a year. But I still have quite a bit of radiation damage. It's so hard to bring myself to talk about how I really feel around family, friends cause they are all going through the aftermaths of a national emergency with covid and everything. I don't want to worry my mom. But its super hard trying to be strong or pretend to be strong all the time. Sometimes I want to break down.. I do have a counselor but even with him sometimes he's like lets work on this, or lets work on that. He's like you're a worrier, you're a champ etc. So I feel as though I always have to look like I'm always positive around him. My Oncologist as well. What are some things outside of writing in a journal that helped you keep your thoughts in perspective? I do meditate, pray, game sometimes to get lost in a story line . Video local wildlife and document data on animals as a hobby keep trying to work even though the last 2 jobs haven't worked out.

Thank God for every day that your alive, whether your NED, in treatments with cancer trying for NED or just trying to remain stable with cancer. Mortality is something we all have to deal with cancer or not. I always remind myself that their are many people out there worse off that I am. Some don't have any hope, some don't know who their friends or family are, others know they only have weeks or months. Geeezz everyone over 70, thats a lot of people, all of them know it's only a few years left and their going by fast. So what your going through is normal and so are many others the lucky ones are the ones who don't worry about it. When GOD calls you you'll be going to a better place in the meantime get busy living forget about dying.

I should feel lucky. Diagnosed with rectal cancer in June 2021. 6 weeks of radio/chemotherapy followed by 6 months of CAPOX, ending with a NED. Everyone around me is “party’s over,” but I’m just not feeling it! Is it that I’m still not feeling like myself, suffering from the side effects of treatment? I took advantage of the therapists at the hospital during treatment and hopefully just found a full time therapist. Exercise helps, but my present physical limitations aren’t letting me do what I want! Long story short…..I feel your pain. Cancer is a mindfuck!

I feel that even though we are NED, no matter how long it’s been, somewhere in a corner of our mind is always going to be a small ‘what if’. I’ve been NED and in remission for 2 years from throat cancer, chemo, radiation, feeding tube for 10 months, unable to swallow my own spit. Side effects remain and remind me of what I went through. I think it’s all normal, but I think part of the answer is to not dwell in it, to daily hand it over to God and just take one day at a time and also to know that it’s ok to not be ok once in awhile. Doesn’t mean I’m not grateful, it’s just part of who I am now.

Praying for you. Sounds like you may want to dig deeper with counselor. There are so many layers to this viscous disease. God bless you

Journaling has been something that has helped me more than I thought I would.  I have found a couple of good articles here on prompts you can use.  Sending love and light! 

Dear Jen,That all sounds so hard and first of all, I too think you are very Strong! Although it doesn't always help to hear that because sometimes when people keep telling me how strong I am all I can think is, Why do I always have to be the strong person?" My Mom had been the strong one in my eyes, my Hero-I looked up to her so much and she got Breast Cancer at age 45 or maybe earlier. She had the lump and was sick and noone believed her for a long time. I still haven't come to terms with the monumental hurdles so many people put her thru just to get decent healthcare. A PhD educated, always giving back minority woman- fully Insured! So my Mom passed away. I usually scream out "she DIED!" Because I am still upset about it and always will be. Now I have Cancer too. I went thru so many Dr.s telling me-"there's nothing wrong with you"-while it was pretty serious Colorectal Cancer. I applaud you Tonya for doing Chemo-for helping your Dad. My Heart goes out to you! I can say I burst into tears A Lot! And where I am living sadly nobody seems to care at all. It hurts SO bad! What WORKS for me?My ESA Dog he is my Light, Happiness & Hope! Somedays I am just living for him. He makes me want to keep going. I love caring for him.A good long hard Work-Out. Sweating-Pushing my body and making my Heart and Lungs Fight to Live!!! It sounds crazy but Working Out is my House of Z E N.M U S I C is a Universe I can dive into and hide myself so far away. It is an escape for me that never stops healing my soul. Good Movies with beautiful stories and locations. Great Books! Warm soft blankets. Soft clothing. Comfort Music of Nina Simone, Chet Baker, Bruce Springsteen!!! ALL different kinds of music! Dustin Tebutt telling me he will take me H O M E. Leon Bridges singing with that impeccable smoothness all his own. Serious alone time with my Music. I escape into the made up Fantasies of another better life. One I can only Dream about: waking up early to go feed some horses in a barn. Getting ready for a Game of Tennis. Swimming in a warm water pool. Endless walks on Beaches. L O V E. I guess, Cancer may be hurting me but it can't steal my D R E A M S !Anyway, I am reaching out to you to say I hope you feel some Warmth - a ray of Sunshine and Sending you some Love 💖 Brave Onward Girl! I know it is SO Damn Hard! I admire you for all you've already done. I am too chicken at times to move forward w/my treatment.I am here and will always write you back ~ Brightest Blessings, Helen

Thank you so much for sharing your story Helen! Cancer has taken me to my weakest place and made me think I couldn't go any more but somehow I've been managing to keep it together.  It's nice to know other people are going through the same thing.  I'm so sorry about your mom, I know how hard that must be - I lost my mom as a young woman and have never been the same since.  We will get through this, and at least we have each other who can understand and cheer each other on.  Sending you strength and love! ❤️

Thank you Melanie. I am so sorry about you losing your Mom and Dad.
Your words are very kind!

Helen, my heart goes out to you.  You are obviously a very kind, sensitive person with so much heart inside of you.  I am so sorry about your journey and your mom's journey.  Cancer affects way too many of us and so soon! Looking forward to seeing more of you on here! :) 

Helen - when you think about it, at the core I don't think people mean to say things that hurt us.  They just don't know what to say.  Before I got cancer I was definitely guilty of saying some of the same things, but I have learned quickly.  Hang in there, sending you love and healing! xx

I need to vent

I have to change my oncologist and medical team because of insurance and I'm really nervous about things getting lost when they're switching everything from one office to the next. Does anyone have advice for making this transition smooth? 

That sucks you have to do this because insurance, so annoying that everything is so dependent on that. My advice is to make sure you get all the records from the doctor instead of just asking them to transfer to the next office (but they should do that too). That way you can keep everything in one folder or place if you didn't already do that. 

Agreed with Kathy. Keep your own records and don't rely totally on the offices to handle everything because they have lots of patients and things just will probably get lost. I'd also get in touch with a nurse navigator in your new network, sometimes they can help facilitate all that change. 

If you can, go in person to your old office and get hard copies of everything! I found that the easiest way to go into the new doctor- they can make copies and you don't have to worry about what they do or don't need. 

Everyone is right here! You need to be your own advocate, so don't wait for the office to help or do the perfect job. If you don't have the time/energy to organize this on your own, it;s a great thing to ask a friend or family member to help with too! 

I had no idea how important patient advocacy was until I was going through my own breast cancer diagnosis, my husband is currently battling cancer now, I worry what our poor children will end up with. At any rate, during my own journey with cancer I learned that you can't always believe what the doctors say, do your own research.  I would have been led into some bad choices had I just followed blindly.  My husband is currently battling and I am trying to be his advocate.  I am exhausted, but it must be done.

Rose, Wow, I am so sorry about your husband and I hope he gets better. That all sounds very scary. You are very wise to be your own best advocate and to try to think and act best for yourself and help your husbands best interests too.
I am that way too. Sometimes I feel like a scientific guinea pig being examined and expiremintally treated without actually being told what is really happening. Noone will really talk to me about my Cancer.
It's not really working out for me either bc my Oncologists have gotten mad at me and now I am basically being blacklisted by them all-in the whole State-they write terrible things about me and no other doctors will see me 
;(  super scary to me since all I have done is ask normal questions.
so it's a hopeless feeling for me. I just want to live my best life. They don't like the questions I am asking. I watched my beloved Mom endure SO much terrible debilitating suffering and pain done to her by the chemo. I was her caregiver and so was my sister for 7 years.
It just destroyed her whole body.
I am not sure I can go down that path. Everytime I try to create support as far as Palliative Care and trying to prepare-as I am Disabled. They won't help me. And I guess to me, if they won't help me plan to survive this Chemotherapy what is coming up down the road if I put that into my body? My Medical information as far as Bloodwork and Cancer markers is ALL being withheld from me. I find the level of control people are holding over me to be scary and very unsettling.
I applaud you for standing up for yourself and your husband🏋 Stay Strong! Your kids deserve to have you BOTH with them and 
I truly H O P E and P R A Y you both make it thru this. Sending you both Warm Wishes 🙏💖


We have found that we had to be persistent in the change and doing your own research, especially on any advice the insurance company gives you. If possible finding a network of folks like close family member or friend to do a ton of the leg work on the research helps a ton!

Hi Helen! I can't believe that is happening to you with your doctors!! It's in excusable.  I know from reading your posts on the site that you're a kind hearted person and so I am just so angry to hear about how you are being treated.  How is your health? That is what is most important! Stay strong Helen!!💞

Changing Your Oncology Team

Not having the energy to keep up with my boys, play sports with them like we used to.  I have bad neuropathy so my normal activities I love like running or skiing or even just playing bbal with them are not possible for me 

I miss the way my body used to look without scars. 

My hair.  It is not at all the same as it used to be before I lost it, I am hoping that it will go back to normal but it just seems like this process is taking so long sometimes! It's hard to stay patient. 

I had several family members who weren't there for me during treatment and it really hurt me.  I miss the innocence I had in not knowing the real substance of these people who I thought loved me.

the constant worry that i've experienced since my diagnosis has been crippling at times.  I am constantly worried about a recurrance.  I can barely remember what it is like to be as carefree as I was prior to this diagnosis.

I miss feeling good and having energy.  Im stil going through chemo. I go once a week and by the time I feel better I have to go back.  I miss my hair I miss my body before cancer. I miss feeling pretty.  I'm almost done with chemo and then I go on to radiation and I'm proud of myself making it this far. 

I'm proud of you too Stephanie 🌷 you are very courageous for doing the Chemo. I hope you are Cancer free soon. Brave Onward & Brightest Blessings to you ~

We are all warriors.  I also miss the simpler times, before I knew.  Can you imagine how carefree we used to be?? Seems a lifetime ago.

Stephanie McDonald, you are and always will still be pretty.  I have never seen a picture of you and have no idea what your outside body looks like, but I can tell just from your message that you are a pretty person...inside (which matters more) and outside.  God Bless you...I know you'll feel better about everything soon, it is just a journey to get there.  

Kathleen you are such a kind and warm soul, I'm hoping to get to know people who are as positive and inspirational as you on this platform.  Thank you for being such a radiant light in the darkness.  Hugs.

What do you miss most about your life before cancer? 

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