Hi all, I am curious to get your input around how your life has changed since you have been dx with Mets. I got dx in November 2018 after 10 years NED, now it's in my lungs. i have a 12 and 13 year old and supportive hubby and up to this point I was very career focused.
Now this is making me start to re-evaluate everything. I am seeing a therapist, have tried reiki and am trying meditation. I also am trying to work out (when feel up to it) and am reading a lot as well. I am spending more time with kids, etc and really assessing my priorities.
I want to learn from you in terms of what have done since you were diagnosed with mets. How much did you change? I mean in general - your approach to things, your mindset, how you interact with others, not just work, but your lifestyle. Do you drink alcohol, do you eat differently, etc.
Thanks!
Em
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It has been 10 months since my diagnosis, and 8 since I was told the disease was metastatic. It isn't easy to hear those words, is it? I went from "You'll be finished with treatment in about a year" to hearing that treatment would be ongoing for the rest of my life, all in my 30's!
I have changed a lot since last year: I have greatly reduced the amount of stress in my life, my diet is stricter and healthier, I exercise a lot more, take supplements, have complementary therapy sessions every month, enjoy Epsom salt baths with essential oils, spend more time with my family, am often planning afternoon tea, tea/coffee mornings with friends; I've been travelling more in the past few months, and I am still running my own business. Oh, and I am always reading, researching and trying to find more ways to improve my life. I have never been very interested in alcohol. I have probably had about 3 or 4 drinks since my diagnosis. But I have also become more positive, thankful for each day of life and all that my medical team has done for me.
I would say that getting this diagnosis really makes you take stock of your life. While I still enjoy my work, it is not my focus in life. It's just my way of maintaining a sense of normality and how I pay my bills, but other than that I don't stress about it anymore. I am content.
You're welcome, Em! I have always been a bit of a thinker, even as a young child. I just never imagined I would be going through something like this at my age. x
I was a dentist working part time and planning retirement last July..ended up being Dx with mets in April due to a fractured vertebrae discovered on an X-ray taken for back pain...so had to retire slightly earlier..having had back pain for years and having a bad riding accident August 2017 I put the pain down to that as my initial cancer was 24 yrs ago and stage 1...assumed I was ok..not so
So I was happy working..very fit riding my horses..looking forward to retirement..one daughter just married the other planned for this year...now my world has crashed
I think I was in actual shock to start with..wouldn’t eat..crying all the time etc etc..same as most of you ladies!!
After that the anger and depression set in
However I’m now seeing a therapist..back riding my horse ( on mega painkillers though) and trying to put a brave face on..I still feel mad as hell about how my life has become..have no control over my health and constantly worrying about what’s next
I’ve started back at yoga classes recently and trying to eat healthy but do succumb to the wine bottle but what the hell..not going to deprive myself of fun nights out with my chums
Sorry this is a rant ( I’m good at that!) but you did ask!!
Barb - I dont see that a "rant", rather you are being real and honest. I am not angry (yet?!) I am just trying to figure out how I go forward and what I do (and dont do?) The lack of control is so hard.... I love that you are still riding your horse again.
I am seeing a therapist too and she compared this journey for me to a tidal wave where I just have to float on my back, looking at the blue sky, rather than trying to outswim the wave....which totally resonates, but it easier said than done....
I'm so glad you are taking out time to spend with your horses. They must be a real source of joy for you. Do you remember the sheep I mentioned a while back? I see them three times a week and when I call their names they will come over to the fence to have their chins scratched. They are such funny characters. Just recently, I have noticed a donkey in that field too. I did't see a name tag, so I have nicknamed him Don. He comes over to be made a fuss of too!
I hope the therapy sessions are going well for you. I find this site a bit like therapy. It certainly feels therapeutic!
I was diagnosed stage 4 in December 2016. I took early retirement at the age of 52. I spend more time traveling especially with the people that I love and I’m definitely working on my bucket list. In the beginning my doctors told me to focus on quality of life so I set out to find out what is quality-of-life? Spending time with the people that you love. I always volunteered at my church and worked out every day so those are just things that I have more time to do now that I’m retired. I do miss working because when I stopped working I felt like I lost my identity. But I’m happy to say each year it gets better and we do have years.
That is exactly it - i feel like I am grieving who I once was, as I dont know that I can be that person anymore (energy wise, etc) It makes me sad, but I do feel lucky that we can talk uin years not months (fingers crossed!)
A provocative question with an answer that could go on forever. In short (?), I was diagnosed from the start w mets to the lungs. There is a strong history of breast cancer on my mother's side, including my mother, but except for a younger cousin, (I have many on that side), it was onset after 70, and "cured." My younger cousin seems fine 5 years out. I was so naive. I crashed. I had to take a leave from work, not for the side effects of the chemo, but because I was lost and severely anxious and depressed. I have a history of depression, no hospitalizations, highly functioning, so had been on antidepressants on and off for decades. I went to a shrink right away and got on elavil, xanax as needed. I found Kris Carr's website, and it was a lifeline. Kris has a Stage 4 Cancer (slow growing, but still...) and although she was a lot younger and cheerier, she became a role model. I went to therapy and still go. One day, after about 2 months of sitting on the couch wrapped in a blanket and shaking, I decided, well if I'm not going to die for a while I'd better get up and live. I started to travel. I had put it off because I was extremely afraid of flying. I used Vodka and xanax and got myself across the Atlantic many times now. I don't need as much to make the trip now. I thoroughly enjoy it and planning travels is a break from "the real world." I still work full time. I have to for the insurance. I am not sure what retirement holds, but I am 65 am getting tired of cold weather and getting up at 5:30a. My husband recently lost his job, so more pressure to keep working for now. My son is grown, and although he is a source of a lot of stress, he is out of the house. I try to savor good times, and struggle to stay upbeat. I have discovered Buddhism, read books, magazines and take online courses. Have been to 2 retreats with Pema Chodron, an amazing American Buddhist nun. I try to meditate. I will have a drink, usually wine, once in a while. I didn't ask my doctor. I figure at Stage WTF (my new name for this b&tch of a disease), I don't need permission. I struggle with letting anger and resentments go, disease related or not...I am sad I have this, but never went through the "why me" stage. I just figure I am that unlucky statistic. I do try to eat better, more greens, but I have a carb/sweet tooth, so that is a work in progress. I juice greens, I wish I could say it's everyday, 'cause I feel better when I do, but sometimes I'm tired and/or my stomach is not up to it. I fell off the supplements but am resuming a good multi vitamin, a probiotic, and Chaga mushroom tincture. I have hemp based CBD and do that too, although not sure it does anything. Initially I told almost everybody about the mbc, and I'm sorry about that now. I am more discerning who gets to know this part of my life. I go for massages at least every other month, and had my nails done for the first time 2 summers ago. I have purple streaks in my white hair. If I had children to raise, I would have different priorities. That is, they would be my priority and spending time with them and enjoying life as a family would be paramount. My husband is very supportive, but sometimes I think he doesn't really get how tired I get after a day's work. He is starting to help out more around the house, now that he is out of work. I marvel at the many women with this who carry on and live full lives. I would say how I deal with this is a work in progress. Finally, I hate it when I happily zone out watching TV and am confronted with those dmned Ibrance commercials.
Help yourself. If you can’t laugh once in a while at this lousy situation, it will drag you down. In fact one of my new favorite sayings is, “Let go or be dragged.”
You mention how Kris Carr is an inspiration to you. Well, I have to say that you have done a lot to inspire others too! You work full-time, travel, and still manage a household. I wish I had a medical background as you do, so I would have more of an idea of what else I can do to help myself. Instead, I just have to read and research things more! That to me is a work in progress. I feel like I still have so much to learn and implement in my life. We don't get the Ibrance commercials over here that you mentioned, but whenever I see a Cancer Research commercial of how someone starts off sitting in the hospital having chemotherapy and is now "cured" of cancer I have to turn it over.
From my heart to yours, thanks. I don’t feel inspirational, I struggle to maintain my equilibrium like most. I don’t research much. I understand the basic options, ask questions, but unlike some people, I don’t delve deeply into stats and the like because it doesn’t help me emotionally. I have a sharp oncologist, and so far she has been spot on. I used to have someone clean my house weekly, as I just can’t come home and clean after working. However, she’s left and now my house is less than sparkling. Travel is my dream, my luxury. Seeing so much of the world (Europe) has been so wonderful. I leave the cancer home and see wonderful places, melet great people and have an adventure. This summer I envision standing on Iona in the Scottish Hebrides, a windswept place and the earliest site of Western Christendom and breathing it all in. Everyone, with cancer or without, needs a dream. Even a modest dream of dipping your toes into the sea, reading a fabulous book in some hidden nook, walking in the woods and listening to the deafening stillness. But I digress. One good thing about this blasted
Cancer is that it forced me to take a very close look at myself and consciously create the way I wanted to be in the world. I seem to be very productive and type A, but really moved thru a lot of my life on auto pilot. Cancer has made me actually stop and think about what I’m doing, how I’m feeling and how to change things, big and small, to create a better life. May I say that you seem to be energized to do everything you can to live your best life with this b$tch of a disease. On this board we have one another. 🌷
We all struggle from time to time, but I try to keep busy and maintain a positive attitude. That really helps me. You seem to be doing really well too!
I love to travel too. My recent trips to Switzerland and Iceland were amazing. I'm off to Denmark for the weekend in a couple of weeks time. I hope you have fun in Scotland! I wish we could dip our feet in the North Sea and not freeze, but that can't be helped! When my brother-in-law and sister-in-law visited us from Colorado a few years ago she took a dip in the sea! She was brave!
I actually waded into the North Sea in Holland during the Summer and was surprised it was not frigid. The water off the Northeast Coast here can be chilly. I love the water in the Caribbean. So pretty and warm and clear. 🏖
I've been to Holland, but I haven't waded into the North Sea from that side. It's very cold on my side though. I have not been to the Caribbean. I bet that was a great experience! Between you and me, I think my sister-in-law was crazy to take a dip in the North Sea! I love her to bits though. She is also going through cancer at the moment. She was diagnosed with colon cancer shortly after I was diagnosed, so we have been each other's cheerleader this past year! x
I used to swim in the North Sea when I lived in Hartlepool..there’s a nuclear power station down the coast so the bay is relatively warm and there are lots of seals basking everywhere
I live an hour from the North Sea, Barb, and love visiting the coast. I actually prefer going to the beach during the winter than in the summer (I'm odd like that!) Gorleston is one of our favourite beaches. Cromer and Felixstowe are nice too.
I am type A too. I wonder if there is a relationship between type A's and cancer.... pushing ourselves, the over achievers...not giving ourselves a break must wreck havoc on our immune systems. Do you ever think about this? I told my friend who knows my condition my stage is the WTF stage.
I have briefly thought of all the factors I have that set the stage for this. But i had to let it go because It’s a done deal and how much can I beat myself up? Everyday is a new little lifetime. I just hope I can cope when it gets rocky. Stage WTF. 😂
Lol. Seriously, stay hopeful and positive. We can't control the outcome and worrying wont make us feel good or change the outcome so let's focus the other way. Let's go for stable or NED. Anything is possible.
You are right. It’s like riding a wave. Going to make every good day count in ways I never thought about before this. You really meet yourself face to face with Stage WTF
That's exactly it - I feel lost! and I am going to steal the "WTF stage" too. I agree with Sophie you are inspirational! I have to google Kris Carr. I just read a book by Jennifer Smith on living with Stage IV and it was such a good book but I got so sad when I found out she died UGHHHHHH!
.....Oh and one more thing - I like that the ibrance commercial is trying to educate others in that stage IV doesn't mean you are dying tomorrow, but they seem to play them on my favorite shows which JOLTS me back to reality
I don’t do well when I read blogs and books by brave cancer thrivers who die. I edit my reading and viewing choices. It’s getting a little easier after 4 years but not easy.
I was diagnosed with MBC on August 2018, I told many of my friends and family members but hoping to have support but it was not the case, I try to enjoy life ignoring stuff but I have a lot of stress on my life due to family issues.
I am still working full time and that is something that helps me a lot and I do it for the health insurance too, I am been traveling too, at the beginning I started with strict diet a lot greens no beef, no dairy products no bread mainly greens blueberries, strawberries almond milk Plant protein powder and I used to weight 120 pounds I lost weight and my weight was around 105 and I looked sick lately I am eating some carbohydrates like sweet potato whole grain bread, quinoa and I gained some weight.
I go to church and have a prayer group
Praying helps me when I am sad, anxious I pray
I try not to take a lot pain medication because it makes me too sleepy
I try to exercise 5 times per week, i enrolled on YMCA Livestrong program It was really good
I’m baffled why you’ve been not eating dairy or bread or are you vegan?
My oncologist told me to eat lots of dairy .. especially cheese to keep my calcium levels up as I have bone mets and to eat vitamin B foods which obviously includes bread
I’m not a dietitian but I think we need a balanced diet of all food groups..I eat very little meat but when I was very anaemic I did have some red meat as it’s so iron rich
We have to pick and select what we think is best for us. I recently cut all dairy out. I had been having greek yogurt up until 2 months ago when markers went up and we found progression. Alot of dairy has hormones and antibiotics in it so I steer clear of it now. Milk also has another item in it which is bad for us, food for cancer. Google about dairy and cancer. Countries like China with low cancer rates also don't consume dairy like we do. It is a hard one to cut out. I used to love my cheese too. I think a nibble of an organic cheese or yogurt could be ok, but now I do healthy alternatives, or none at all.
Bad carbs convert to sugars so I prefer to avoid these too. This is my choice. People need to do what they believe is best for them.
I started reading about that sugar and carbohydrates feed the cancer the oncologist do not believe about it so now I am not strict, thanks God bless you
I know what you mean about the support side of things. Some people will say "I'm here for you" but you are not sure if they really mean it or if they genuinely want to help. Does that mean they will go with you to hospital appointments, sit with you while you have treatment, cook a meal for you if you are too tired, or have you over for a coffee and a chat?
I told a few people I had breast cancer, but not the full extent and then told them to pass it on so I would not have to keep repeating myself. The same is true for my extended family. Once I had told my dad I felt able to tell my mum and dad's side of the family. So I picked a cousin from each side of the family and told them, and told them to pass on the news to everyone else. They live thousands of miles away, so I don't see them very often. But I was happy to get a couple of messages from two of my cousins this week checking in on me.
It sounds like you needed to gain a little weight if you were getting too thin. I hope you are feeling stronger and healthier now. Are you enjoying your exercise classes?
You're the same height as me! If you get tired you just have to know when to call it a day and not overdo it. That's what my GP told me. When I started working out I knew I couldn't just throw myself right in and expect to quickly adjust. So I started out with three 15-minute sessions each week. Then I gradually increased the time by 5 minutes each week. Now I workout for 30 minutes three times a week. I feel like I can do more, so am considering adding one or two more days.
Thanks Plasem. This helps - I like to hear that you are able to work FT and work out etc. I need hope that my "adjustment phase" of ibrance will get better.
I am not a big dairy person as my stomach doesn't like it too much of it, and I am thinking of adjusting my diet etc.
Thanks Sandra - it is our road and one I have accepted, but I am struggling with how I mentally adjust. I guess I just have to embrace the "process" and go with it. xoxo
Hi Sandra,
It must have been hard to pack up work early, but it sounds like it was the right decision for you. We are often defined by our jobs and what we do, so it must be hard to adjust. But at least you now have time for hobbies and other pursuits that you enjoy.
I agree that having a supportive husband helps. Your husband sounds lovely! My husband is 13 years older than me. We met when I was a teenager. We have been married for over 16 years. I plan to be around for many more years. I am grateful that when my husband talks about the future, he talks about us growing old together. He can't envision a future without me in it, and that's how I feel too. I'm sure that there will soon be a cure for metastatic breast cancer.
Hello I had initial diagnosis of bc April 2016, mets diagnosed march 2018. I think I was probably a bit different from other ladies on this site as I always expected to get breast cancer then mets, I was shocked but not surprised with my initial bc dx, and I was annoyed because I expected it in my late 50s not 40s. I was relieved when I was finally diagnosed both times as I really had to push to get doctors to listen to me despite a strong family history of cancer.
I had to have time off work for treatment for bc, but very little has changed following the mets diagnosis. I still work full time and spend 2 1/2 hrs travelling to and from work everyday. I enjoy walking, spending time with my grown up children and dogs, and doing my photography.
I'm determined that life will go on as normally as possible for as long as possible. I'm now more careful to make sure I get enough sleep and exercise. I feel better when I'm well hydrated but struggle to remember to drink enough, and I try to limit alcohol. I am lucky, apart from January when I got put on letrazole and felt appalling, I feel really well and fitter than I have for years.
Mentally I get irritated more than I used to with petty things. I realised that I used to spend a lot of time doing what other people wanted to do, I find it easier to say no now. And I do a lot less housework. I think I have a better understanding of what matters. I turned down a promotion at work before Christmas which I would have given my eye teeth for only 4 years ago. Life has changed but not necessarily for the worst.
Thanks Julie - I want to get to that space - try to continue as "normally" as possible. It's more a mental game for me. sometimes I wake up and I think "bring it" and other days I wake up wanting to cry at anything.....
I think we all have days like that. That's the reason I try to keep life as normal as it can be. The structure means that on the days I just want to sit and cry, I have to keep putting one foot in front of the other because there are things I have to do. I think the worst aspect of this disease is what it does to your mind.
I'm on a training programme at work 'future leaders'! Sometimes I feel a bit of a fraud but then I think that no one knows what will happen tomorrow. At a training event last week we had to start the session by getting up and giving an impromptu talk about ourselves. Everyone else was talking about their ambitions and future plans. I so wanted to say that I have this and don't know how it's going to affect me in the coming years, I no longer have the certainty they have. But I didn't as it wouldn't have been fair, it was hard though. But as I said, one foot in front of the other
Saying all that, I skived off work today and went to the zoo with a friend I would never have done that before my diagnosis. We had fun.
My original dx was in 2002 and then it moved to my bone in 2006. I was on Faslodex for 11 years with NED and then in August of 2017 - my cancerversary - I found out it had moved to my liver. I couldn't have been more devastated - i thought, obviously naively, that I was home free. I think what has changed for me is spending quality time with my family and trying to control the things I can. I try and eat a plant based diet, I drink 16oz of celery juice each morning, take supplements and continue to exercise - that really helps with the mental aspect. I try and start each day with a grateful heart and despite this S*** we are dealing with count all the blessings I have in my life. I'm not going to lie - some days are easier than others. During this last bout they had to change an anti-depressant that i had been on for 13 years and that wreaked havoc on me. It has taken almost 6-7 months to get that back on track and that really sucked. I still don't feel as good emotionally as I did before they took me off it (it supposedly interfered with some trial drugs I took) but am so much better. I still try and get out with my hubby. Both my kids live in the area but are married and one with a baby on the way so I try and focus on that. I get out and do things with my girlfriends frequently. Whatever I can do to feel "normal" and not focus on the C word!!
Hope that helps. We all struggle with how to cope.
Thanks for sharing your story. You are another fabulous example of amazing women who keep getting up when they’re knocked down and live life to the fullest. It is one thing that cancer has taught me. It is a struggle and takes conscious effort. Blessings to you ❤️
I was diagnosed mid November 2018. I was very sick at the time of getting this news that shook me so. I had a month off from work to get myself together and find this support group to realize my days are not numbered.
Paul and I had been working hard every weekend doing home improvements, which I am very glad we did because Home is my favorite place to be. I was saving for a kitchen upgrade, cabinets, marble like quartz counters…I’m not sure this project will ever come to be or if it is just on the back burner? I was hoping to retire at in a few years, but I need the insurance more than ever, but will I be able to keep up this pace then?
I feel like my side effects are minimal, taking 2 pills a day and some lack of energy is too easy. I’m waiting for the other shoe to fall.
I feel like my family thinks I got cancer back because I gained weight. I used to manage my weight by jogging every day until I hurt my knee a few years back. I am trying to lose some, though that is not going well. I live on carbs. I do like fruits and veges as well , but mainly pasta. And good crusty bread. I raised a family of 5 on one income and have a hard time throwing $10.00 worth of food into a blender! So walking, we have begun.
That said, my family, including grown kids are very supportive. They sure have been visiting and calling more.
I’m not depressed. I’m a realist, so I just deal with it. I do like to have a good beer, or a glass of wine, a Mike’s margarita, or a mimosa, usually just one because I don’t want to deal with a headache. I like to relax and watch new movies, (loved Green Book and A Star is Born), and good tv series like True Detective, West world, and rubbish like The Bachelor and Project Runway
I’ve thought about a bucket list and traveling, but it seems like too much work.
Hi Laura - I think this time off from work has been good for me to regroup and work on the mental aspect. I had two great days on the lower dosage and now I feel tired again - I guess this will have ups and downs...LOL
Also, I started watching very rubbish/mindless TV last week....my head hurt and I couldn't think but seriously entertaining - RHONJ and RHOBH - OMG ........ok no judging....
I’m glad you were able to take some time off too. This diagnosis was like getting whiplash. It took a while before I could stand up straight. ( I dove in Hallmark Christmas movies back then, I may have to skip them next year 🤪)
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I had initial diagnosis of bc April 2016, mets diagnosed march 2018. I think I was probably a bit different from other ladies on this site as I always expected to get breast cancer then mets, I was shocked but not surprised with my initial bc dx, and I was annoyed because I expected it in my late 50s not 40s. I was relieved when I was finally diagnosed both times as I really had to push to get doctors to listen to me despite a strong family history of cancer.
Has anyone asked for a change in scans?
Has anyone else experienced Mets to the scalp?
Multiple liver Mets. Treatment changed to abraxane 
Who has ESR1 how are you doing
What is your experience with Verzenio as I was.just changed from Ibrance?
