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Where is my new normal?

I love how positive you all are on this forum and it has been great for me to find you all. I’m still really struggling with this diagnosis. Every day I wake up and it’s as if I have just been told. Does this stop? I’m 42 with young children. I feel despair constantly. I think the antidepressants have made me worse X

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It takes time. I felt like I was going through the grieving process for months, my health was taken away from me. It's frustrating how time consuming this cancer is! It takes time to adjust, don't be hard on yourself. Look for good moments in each day. Praying helps, lots of "I love you" & hugs! You are not alone 😘.

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Hi Ellie,

I'm glad you found this forum too! We can all help and encourage one another. While we all have metastatic breast cancer, that does not mean that we are about to die, which I know is a very scary thought for you. It is the first thing we all think about when we are given the diagnosis. How can it not cross our minds?

I attended an interesting cancer forum at my hospital last September. The chairman has been living with cancer (I can't remember what kind he has) for many years. He was an inspiration to us all in the audience. One thing that really stuck in my mind was what he said about cancer survival in the 1970s. He said many people's prognosis was not so good back then, but nowadays we can live for decades with metastatic disease. Please keep that in mind. This disease can be managed like a chronic illness such as diabetes, epilepsy or HIV. As long as we are willing to continue treatment, we can live for years. Also, don't forget that there are other treatments in the pipeline. So when these current treatments stop working, there will be others available to take. I am also confident that there will be a cure someday. Some people don't believe that, but I do. That is up to them. You can also look into complementary and alternatives therapies and treatments that you feel might help you.

A positive attitude and outlook on life will not be achieved overnight. You still need to grieve for the loss of your good health, just as you would allow yourself time to grieve if a family member died. I found it was like a bereavement. I cried, envied those who were in good health, and couldn't stop thinking about what could have caused my disease. But it is also important to try and find reasons for joy in life. Celebrate each good CT scan, laugh with your husband and children, watch a comedy on TV or enjoy the change in season.

Take care,

Sophie x

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You always have such amazing words. I hope I can find your attitude in myself x

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You're welcome, Ellie. You can get there too. Just don't beat yourself up if you do not feel up to much right now. It takes time to adjust to this new life.

Sophie x

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Thankyou Sophie, I love your posts. Fayx

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You're welcome, Fay. That's so kind of you to say so!

Sophie x

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Honestly, it is not easy living with this diagnosis. It is a roller coaster ride- I think that much I have accepted. To be there for those we love is what pulls me through. Yes I have bad mental days- usually when it is pushed to the forefront.

I had myself buried the first six months- I had other major changes hit at the same time I got the diagnosis. Ok ff to now from oct 2016. I am just now coming around to omg I may live a while to where that is sinking in. I have maintained my faith and trust in God - I think because God held me in my darkest days. Look at your children and just revel in them. Give them all your love and become immersed in them. That has kept my sanity.

My daughter in law’s father was diagnosed with pancreatic cancer three weeks ago- four oncologists said there is nothing that can be done. I pray every day for all of them- as a nurse I know there is no hope for him to make it.

We are a different story. We have a chance and that makes all the difference with hope.

This is a great group and I love all my sister warriors. You are one of us now. Hang in there- there is hope. Gentle hugs and love

Frances

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Thank you for your kind reply. I’m still really struggling. Every morning I wake up and it’s like I have just been told again and again. Then I have fear in my stomach all day long. I’m really hoping this will pass as I’m sure it’s not doing me any good. It probably isn’t helped by the forced menopause x

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It will ease up but it takes time. It is still new for you so be gentle with yourself. I have found I don’t like my bad mental days at all and don’t want to live there. I will deal with bad if and when

I have to but for today no. It takes too much from me to deal with that. It is hard enough to deal with scans, tests and side effects of meds. Give yourself time to adjust and don’t be so hard on yourself— what would you say if someone you love got this diagnosis? Now be kind to you💕

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I found I had to pack it away and while I deal with the meds and the side effects I don’t take the diagnosis out of the box. I have cancer and it sucks but I don’t dwell on the actual diagnosis. It’s so hard to do but I think it’s the only way to carry on and try and live my life.

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Thank you for your advice x

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Hi!

It will get better, but you will have to work at making it better. I am 41 with a 19 month old daughter. Last year when I had I a recurrence she was 11 months old. We were going away on our first family vacation and It took me four days to get out of my funk. Every time I looked at her, I cried. I had myself dead and the thoughts were so dark. I started meditating, i started praying and I realized that I had two choices, I could continue to go down the rabbit hole or enjoy every minute with my husband and daughter. I chose the latter because I refuse to let this disease drag me down. I am a firm believer that a positive mindset is one of our biggest allies and definitely makes a difference in our journey. Take your time to grieve, try not to let it consume you, then move forward. Every moment spent thinking the worst, is taking away precious time spent with those you love and who love you. It is just a word, do NOT give it any power!! Much love and prayers to you! Xoxo

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So many great, thoughtful answers. Do you see a therapist? I was in constant mourning for myself for months. In fact, the first year was bad. As time passed, I thought of it less and less. For the most part, my first thoughts upon waking have nothing to do with Cancer. For a long time it was. I exhausted myself from the depression and terror. I came to a point where I just could not keep that extremely high level of anxiety going. Perhaps you should try another antidepressant. I’ve been on several and have been on Elavil for years now. The hormonal changes make it worse. There are still times when I feel sad and depressed and times I cry. I have accepted that as part of this lousy disease. The good news is I don’t stay there. It will get better, but it is something you learn to deal with. Takes a lot of psychic and physical energy. Do not stay in your house. Get out and connect with supportive friends and family. Be patient and kind with yourself. Get a facial a

Massage take a gentle yoga class. You might have

Mbc, but you are very much alive.

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Toomanyqueastions.... It will get easier. I am 46 and diagnosed in June 2018. At first the absolute despair was almost unbearable. Then I moved to the angry phase and now acceptance. I am very fortunate to have a very loving husband, mother, sisters, and children. If it were not for them I don't know how I would be able to keep going. I now go a few weeks without crying then out of nowhere it creeps up on me and I lose it. I am also so glad I found this site because as much as I love my family they just cannot comprehend what I am going through. The women on this site are fabulous, funny and so supportive. Know that we are always here for you, to lend an ear and give advice. Hugs to you and your family. Aimee

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Yes, it will feel less horrible. For me, it was about 2-3 months and then I realized, “Well, I’m not dying right away!” Oddly enough, that irony helped me. My markers continue to decline, I’m exercising, taking naps in the afternoon, occasionally listen to a free meditation app, etc. Hang in there! Oh, and don’t hesitate to ask about another antidepressant.

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Tell your doc you think antidepressants are making it worse - they can.

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I think that this diagnosis affects women in different And varying ways.

This “new normal” portrayal on pfizers commercials on tv is total and utter bullshit! These are drug companies selling a drug using actors, not real life mbc patients who struggle continually with a whole host of side affects and very different emotions and issues.

You will have lows and very lows, you will feel anxious, scared, terrified and a 100 different things in one day. All i can tell you is this, your not alone in this, and when you need help ask your families and friends because as we all know this “new normal” is overwhelming!!

All the best

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Yes! Plus, I watch TV for a distraction-/ not to get reminded of MBC every fourth commercial as drug companies aggressively market with happy horses—-t montages. Spare me.

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Its an unrealistic portrayal of a mbc patients life! I get it they want to sell us a drug but imo it leaves us feeling absolutely shit because we are having all these other issues from the drug that the commercial doesn’t show!

It does us all a huge disservice by portraying us like this.

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Glad I’m in UK...I would hate to see ads..constant reminder

Barb xx

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You are so right about those damn commercials. They make it look like this is a walk in the park!

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Exactly! That way when were forced to start this drug we are all seeing the vision of that professor in the commercial! Completely unrealistic!

If i had to work, i would loose my job the first week because I wouldn’t be able show up even one day!

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I know. We never know how we are gonna feel each morning!

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It drives me crazy because I always worked and was running all day! I'm 65 atxa dead stop! Hate it!

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Hey,

How long have you been on them? Can you tell me which ones you are on and the dosage?

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3 weeks at 10mg Citalopram 2 weeks of suicidal thoughts, 5 days of hell at 20mg, back on 10mg since yesterday and have woken up slightly better today, not sure how long to continue on 10mg might wean off and give up with them. X

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I started on 10 my first diagnosis and the first 2 weeks was hell!! Same drug as you. Second time around I knew to start on ten them by 3 weeks be up to 20. From my own personal experience you need to be on 20 to see any benefits. I think going up and down is not going to do you any good at all. But, of course speak to your doctor.

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They really do help, just need to get through the first couple of weeks. I was weeping for days then they suddenly just kicked.

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That is a low dose of Citalopram. I’m at 40 mg. I learned you need to try different meds if there is no improvement after 2 weeks. Each of us handle meds differently. I know someone who got hand tremors with Citalopram and went with something else. If CBD is available in your state, try that. I use low dosage THC tincure each night.

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Wow! You are on 40? Are you in the states? The most they will gove you in the uk is 20, but I do think I could benefit from an extra 10. Are you ok on 40? I tolerate drugs very well.

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I don’t know what to do now, I reduced to 10 yesterday as I was having suicidal thoughts. Don’t worry everyone around me knows. Today I felt better. Maybe I should stick to the 20mg. My GP is useless so I don’t trust what she says. Perhaps I feel better because I’ve been on 20. Gosh I don’t know!

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The main thing with the antidepressants is that you need to have the drugs in your system to take effect, so if you are reducing the dose it’s like a yo-yo in your mind! My gp(who is a breast cancer survivor and Fantastic) wanted to get me on 20 mg as quickly as possible. She gave me Valium to get me through the first few weeks. Did you get some Valium? Really helps. Takes the edge off before the escatalipram kicks in.x

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Yes escitalopram is good/ have been on it for years and with mbc diagnosis was increased to 40mg. It may not fit everyone but steady dose daily is important.💕

Franced

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I could do do with 40 mg! Are you in the us?

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Yes in New York

Where are you?

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Ah, I’m in London and they say 20nh is the highest dose?

They are pretty strict here

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I know. The medicine dispensed there is different from here because of the health care systems. Is there anyway around it? Is it the doctor or the system?

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I have a massive supply, I could just take more.

When the doctor looked it up in her system it just said highest dose 20, but she doesn’t really count how many she prescribs me.

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I’m in UK and my friend is on 40 mg do must be your docs opinion

Barb xx

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Don't give up! Stick with it. Its worth it. And if you find they don't help talk to your doc to chage to something else. So many choices out there for antidepressants!

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Having MBC is not easy at all, what are you feeling is normal it will get better with The time. I still have my up and downs

Positive aptitude very important, sometimes the antidepressant takes time to work or maybe another dose

For me I try to keep busy and do not think about a negative future think about today that you still enjoying your kids.

I see many with MBC that are NED no evidence of disease not me but maybe in the future it can be you.

When I feel depressed I pray and that gives me peace

I try to live my life as much normal as I can

Take care and God bless you

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Sorry to hear how you are struggling with the diagnosis. When I knew I I had cancer I got that knot in my stomach feeling. At times when I start stressing over things I remember what my dad would say . He'd sit me down and say so in 2 weeks this thing your stressing over is suppose to happen . Now tell me how is worrying about it for the two weeks going to stop it? In two weeks if it doesn't happen then all this stress is just a waist of time. Wait till something actually happens then deal with it don't stress over what u think might happen. This philosophy has served me well over my life and never more so then now with this disease. Enjoy Life deal with the what ifs when they actually happen!!! Second thing my dad taught me was PRAYER the most powerful medicine for everything!!!!

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Love your dad. My father used to say something along the same lines: let’s cross that bridge when we get to it. I remind myself of that when I need it.

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I read something ages ago along these lines

It’s about worrying ‘what if’ something happens..what you do is put the word SO in front I.e So what if so and so happens...then the answer will be I’ll deal with it now it’s happened

Sorry I’ve really explained that badly..just means don’t worry about stuff that’s not happened yet

Barb XX

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Have you ever had a really nasty breakup with a relationship? One that was unexpected and came out of the blue? I think a lot of us have. That is what is happening with you and your old life. You've had a brutal breakup.

If you have gone through it with a relationship you'll remember how hard it was to start with, the disbelief, the anger, the sense of injustice, the loss of the future you were expecting. Everyday waking up and then the realisation hitting you and all those raw feelings. But you'll also remember how gradually the need for ice cream at silly hours subsided and you started to start feeling yourself again.

It didn't happen immediately but it did happen. You started to realise that there were things to look forward to and things were going to get better. This is how I saw my first few months after diagnosis.

After a nasty breakup, life is never the same again but you are still you and you will find your new normal. Be kind to yourself. go with the flow on the bad days and enjoy the good ones and let yourself believe that the good ones will increase as time goes on.

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Wow! That’s a brilliant analogy. Putting it in such an approachable way is insightful. Thanks!

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What a great comparison to a broken relationship. Never thought about it that way!

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I did a cancer workshop a couple of months ago and someone said that her cancer diagnosis made her feel that she had been betrayed by her body, she felt that it had been unfaithful with the cancer, with them sneaking around behind her back. She was experiencing issues trusting her body again.

It gave me the image of my body explaining how it's head had been turned by the cancer's exciting new DNA and it's sexy ability to replicate cells so quickly! It just didn't realise what it was getting itself into, it didn't mean to hurt me, it just couldn't help itself. (Sorry I have an overactive imagination!)

That discussion made me realise that the emotions caused by my diagnosis were the same as I'd felt when a relationship had finished. But it also helped because I knew that when you are in the midst of the breakup you feel like you will never get over it, but of course you do, it just takes time.

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It does take time!

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Thank you. Love the analogy♥️

Frances

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I was diagnosed with MBC 10 years ago. My children were 5, 8, 10. I had such a hard time. I couldn't stand watching a breast cancer commercial for a fundraiser on tv that came on frequently. It put me in a state of panic. I woukd look at my kids and try not to break down in tears. Over time, maybe a few months, I started getting into a new routine and calming down. We bought a camper and on my weeks off of chemo, we would go camping; making so many memories and having something to look forward to. I still had hard days. It wasn't easy at times, but I vowed to be as positive as I could with my kids. MBC was much different than I thought it would be. I completed 6 months of strong chemo treatment, had a double Mastectomy, and a hysterectomy. I was stable for 9 years. I got a new job, drove my kids to all their activities, and was simply a mom and wife. My kids are now 15, 18, and 21. I'm praying for you!

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Thank you for your reply. I really feel like I need to calm down. I’m so wound up all the time. Where were your mets when you were diagnosed? Did you change your diet? Do exercise? It’s mothers day today here and I’ve found it really hard X

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My Mets were found in a very unusual place, my colon. I have been told by many doctors and surgeons that they had never seen that before. It was also in my uterus and bones. While on chemo, I didn't change my diet too much. When I was stable, I limited my sugar content and ate more veggies. I didn't go to the gym but I sayed active with yard work and walking. One thing that a friend I had told me that calmed me greatly was to live in the minute; meaning when I would start panicking and get overwhelmed, I would think "in this moment I am here with my family, what can I do right now. Tidy the house, Watch a movie, play outside." I am not sure of your religious beliefs but my faith has been a great comfort for me. I pray that peace will emcompass you today. Happy Mother's Day!

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Thank you so much for your encouragement. It means a lot. I’m so pleased for you that you got to see your children grow. I’m bones, lungs and liver, not a great diagnosis. I’m really scared every day X

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i listened online to the Susan G. Komen MBC conference most of the day yesterday. When a psychologist spoke, she talked about living in denial and that is exactly how we ARE to live! Why give in to this beast? I deny that I will be sick and I deny that I will NOT live a very long life, I am getting better everyday; positivity! I am very good at denial and finally found where it will fit and be useful in my life! The fact is, we are alive at an amazing time, with new developments coming almost every month. Another thing I heard yesterday is that the trials have started with the NK natural killer cells. The big advancement there being that they no longer need to harvest cells from the patient , they can make them in the lab and they can go to EVERYONE! One size fits all! Immunotherapy! With all that sad, I am so sorry you are going through this and at such a young age, with children. I'm 65 and I am a glutton for life, I want more, more, more! God has been so good to me! The bible says, ALL things work to the good for those who love God! I could have gone on to live with this MBC, not knowing I was sick, just contributing aches and pains to old age ... denial ... never even thinking of cancer ... denial ... but a woman ran a stop sign and it started the wheel in motion where I had to have an xray and BAM, my doctor saw it on the xray, a regular old xray of my shoulder! long story short, I could have been dead but He showed me the beast that I had to fight, alongside of Him, of course, which makes all the difference because He doesn't lose a battle! I really love Jesus, He has been so faithful since I made Him the Lord of my life when I was 27! I was raised Lutheran but it was at 27 that I began thinking, "is this all there is?" drinking and partying left me empty and the hangovers hurt more than they used to, like Hank sings about. It was there I found Jesus and invited Him into my heart and made Him the Lord of my life. Yes, I still messed up BIG TIME many times in my life, but He's always there to pull me from the deep waters and I say, I'm sorry Father, please forgive me in Jesus name, and He does. His GRACE is unfathomable! John 3:16 For God so loved the world, that He gave His only begotten Son, that WHOSOEVER believeth on Him shall not perish but have everlasting life! I believe, so I share. If this offends anyone, it is not my intention. My belief will not let me come in here around hurting people and not share the love of my life, Jesus, with them, because He IS the answer! With that said, I do appreciate this group so much and we all need support from each other. The bible says to pray for one another that we may be healed, so I will close with this .... God bless you and heal us all in Jesus name, amen! <3 If anyone wants to pray with me, you can leave a text at 281 940 5528 and I will text you my cell phone number. Prayer changes things! SHALOM! Note: shalom means more than peace; it means blessings on the whole person, health, financial, spiritual, the whole she-bang! like my made up word? she-bang? <grin> sister/warrior/fighter/overcomer over and out!

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Beautiful! Bless you!

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<3 thank you!

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Thank you❤️

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<3

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Try l theanine instead of antidepressants

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Did you get your oncs ok on thiamin! I've read it is very good for depression but no research on interaction with our meds!

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Yes and look up Slone Kettering s site u set herbs. Lots of positive research!! Plus melatonin

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Thank you!

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It’s an awesome resource site! Best I’ve seen. A-z for herbal supplements

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I was 42 when first diagnosed with 3b. My children were 18, 8, 5 and 2. I believe I was kept alive to raise my children. My youngest now is close to 24. So it goes. You will And need to be here for your children. Now I feel the energy and blessings from

Prayer and those in the world that share their positive thoughts and prayers for me. Do NOT listen to anyone or read anything that gives you a prognosis! You are NOT a statistic!!

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How long have you been MBC? I was stage 3 2yrs ago but it came back X

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I was 3b for 20 years, MBC December 2017 diagnosis

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Well said re statistics

I scared the hell out of myself shortly after diagnosis by reading stats that were way out of date etc but I didn’t know that until one of you ladies put it in perspective and I stopped doing it

Barb xc

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There is nothing normal about our new condition! I also wake up every morning thinking omg I have mbc! So traumatized! But, it is a fact and we can only do what we can do to keep going!

Antidepressants take a while to work so we can't depend solely on them.

We have the right to be sad and depressed, but with time we star accepting it and find other things to also help us.

Some of us pray. Some excercise, do yoga, meditate, get therapy, work, support group or are creative. It's devastating trying to find our way but it does happen. And each day may demand new coping skills!

Find strenghth in your children and your family. Focus on the beauty and miracle of your children.

Believe me we are all overwhelmed with this damn cancer and there are many days of despair but we can be treated and we need to reach out for all the help we need.

You are young and will have many years ahead. May be a stuggle but you are strong and we are here for you!

Love and hugs, Marianne

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I was dx in October 2018. I am finally starting to take back my life. Its a process. Be good to yourself and enjoy your beautiful family. Try to do something "normal" everyday for yourself. Something you haven't done since this dx. I take my morning coffee outside and sit in the sun for a while. listen to the birds and wind etc. Staying in the moment helps. Its not easy but is something we have to build on. You've got this! We're here for you. <3

Sending hugs,

Robin

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You’re so right..communing with nature does it for me..my animals still love me (cupboard love probs!!) but are non judgmental and they have to be fed watered ridden whatever no matter how rubbish I feel

Barb xx

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I'm 72 and figure I'm close to the end of my life no matter what the circumstances. I'm scared, of course, but it is what it is and I can't control it. It finally occured to me that this disease is what I will die from unless I get hit by a bus or something.

I can understand your feelings given your age and family concerns. This may sound harsh, but I think it's a decision you make. You can sit and stew and live in fear which doesn't change a damn thing or you can forge ahead and hope for the best. It's not like changing a job you hate or moving to a house you like better. You can't control any of this, but I believe we have some choice in how we choose to deal with it. Again, I can't control this situation but I can control how I decide to deal with it.

I understand depression; I've been there, and I have days when the black cloud just lingers over me and it feels awful! Tell your doc. that the anti-depressants aren't working. No one drug works for everyone; sometimes you have to try something different. Have you tried meditation or yoga or a therapy or support group? Sometimes, feeling free to talk to others in our situation can be helpful. Does the onc. dept. of your hospital have any resources? I live in Chicago and am getting treatment at a major medical center that has a help available. If you are in a similar circumstance, check into what may be available to you.

You don't mention your specific situation, but remember that BC is not the death sentence it was years ago. There are many new drugs and therapies that just didn't exist a few years ago. I think there's some comfort in that.

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I think I posted something similar to your post. It does take time. It's something I work on everyday. I think when we are first told the news we have to grieve. We have lost control of something so important to us, our health. I think I handled it pretty well at first but then had to go on a trial and had to change an anti-depressant that I had been on for a number of years. That put me down the rabbit hole and it has taken almost a year to get back on track and I still have some issues with anxiety. Once I started feeling better I decided to take control of those things in my life I could, what i eat, changing to all clean skin care and cosmetics, clean non toxic household products. Is it making a difference? I don't know but at least it makes me feel better. I try and do all of the things that I used to do. Out with my husband, girlfriend get togethers, working out, etc. And I try not to make the focus of any get together NOT about how I am doing. Give yourself some time and try not to beat yourself up over feeling overwhelmed. We all process in our own way. My faith has become stronger and I try and put my worries and fears in God's hands. You will find something that works for you.

My best to you,

Kim

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I have read all your replies and it made me cry to read all these uplifting caring responses Like all of you I have to deal with so many awful things. This forum is truly a blessing and helps me every day. Love to you all.

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Hello all my sister warriors

I cannot express how much I connect with all of you here and am just so thankful to share with everyone here.

I have written before about this but will say it here- I found a therapist and went to see her a week ago. Feeling safe to cry, it just all gushed out about mbc and so on. That hour and a half with her left me with so much to absorb. My mental state changed- I needed to release all the damn emotions that come with this; it is true we all process our own way but the reaching out is important. That only started to happen for me because I joined all of you here. I am so grateful the dark cloud over me left. This week I see her again and have my injections. I don’t know what is around the corner but for the first time I don’t care- I will not give my energy to it, I need it to live today.

Thank you all. Love n hugs to you all💕💕

Frances

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Like many of the replies above I grieved for several months over what had happened to me. During that time my cancer progressed. I finally came to a place where I decided the stress of worrying would not help me in my recovery because I needed all of my energy to fight the cancer. I quit worrying. I do the best I can each day and trust that whatever is meant to be will happen. Every scan that I have had since my decision not to worry has been stable. I feel much better. I told one of my doctors about my new way of thinking and he said I had a great attitude given the circumstances and that research had proved that high amounts of cortisol which is produced by stress contribute to disease. Of course, I don't know how long things will continue to be stable, but I am enjoying life again which I hadn't been for quite some time. It took me a while to reach this point and I think everyone has to take their own amount of time to reach a better place. I am hoping for the best for you.

Hope4mbc

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Very well said! Thank you. I also have developed the same attitude and plan on enjoying each day as it comes and dealing with setbacks as they come along rather than worry about the what ifs. I do believe stress plays a role in healing. Take care and kudos to you.

Sandra

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I think it took me at least a year and maybe even two to reach anything like a new normal! Just driving into the cancer center parking lot made my stomach hurt and my blood pressure go up! And I liked everybody at the cancer center! But I did like like cancer or being a "cancer patient." It really takes time...... Good results from treatment help. Meeting others with mbc was a big help for me. But time was really critical, too. Time to confront my fears, to learn more about cancer and cancer treatment. I was older than you are and my daughter was grown and I suspect that made it a bit easier for me. But it was certainly not easy. My dad's family has been very long lived for generations. And I just assumed I would coast along and be healthy into my 90's! HA! But more and more of us are living longer and longer! I was diagnosed the month of my 58th birthday and I just celebrated my 73rd birthday. I am tired but I've never had pain from the cancer or other symptoms. I hope you will do as well.

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