Can't shake the fear

My surgery was Jan 19th. I still have aches and pains that freak me out. I have gotten a rotten cold, sore throat and off and on fever. My veins are breaking down and some chemo weeks its sheer trauma getting the IV in. (My dr doesn't want me having a port). I'm dreading chemo tomorrow since I am already under the weather (carbo/taxol combo day). Some days my neuropathy is so uncomfortable I can't stand it. My sleep is off and on, largely due to hot flashes. Today I am having a second breast MRI to confirm if a biopsy I had the day before my OC surgery was done in the right spot. It was all clear, but the Dr's are not certain they got the right spot. (I won't even discuss the terror of breast cancer scare while being prepped for OC surgery). I may need reconstructive surgery to fix some issues with my OC surgery not to mention double mastectomy at some point due to the brca risks. But the worst of all of this is the reality slowly sinking in that this may be my new normal permanently. I was diagnosed and began treatment early October (I am serous 3c) and I'm forgetting what my old life felt like. To wake up and rush to get out the door. To work a full day at a career I worked so hard to build, and with much sacrifice. To run around with my dog at the park or go out with family or friends. To be 45 and healthy. Mostly to not be afraid all the time. I thought after surgery I would be less scared since the cancer was being physically removed. But when I have a pelvis or back pain, my fears come crashing in that its already back. My CA125 went up a bit after surgery and it drove me to tears. I can probably learn to live with pain, even more surgery if I must, but the fear of the cancer itself is at times too much. I'm brca positive so while there may be alternative drug options down the line, I also fear I am genetically screwed and it won't stay away. I'm beating myself up for feeling so scared and weak while many of you are fighting with strength and bravery. I don't feel like this 24/7 but it's always lingering in my mind. I just want my old life back and not feeling very proud of myself for facing this like a scared sad child. I haven't even be seeing visitors because I don't want anyone to be subjected to my pity party.

Thanks for letting me get all this off my chest, its been building up and I had to get it out.

I remain in awe of you all every day.

Anne

18 Replies

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  • Spencer2016, I hope you heal and feel better soon. It's alright to be scared, we are all scare, it's normal. And I also have a MRI coming up for my breasts too. Because they found some nodules, hang in there. I will pray and send love your way and healingπŸ™πŸ»πŸ’•πŸ˜˜

  • Ivster- Thank you. I am sending love and prayers right back to you. πŸ™πŸ»πŸŒΊπŸ’– May your mri or biopsies be all clear.

  • Anne - you've already had such a tough journey & shown considerable grit & determination so you can put yourself in the same group of amazing women you are in awe of and who are giving his awful disease some serious back chat! It's ok to be scared and anxious. I think that's something we can all associate with. You can always let off steam here & please accept a jolly big ((hug)) from me in the meantime. Keep the faith and the fight πŸ’ͺ🏻

    Jemima xx

  • Thank you Jemima. Feeling better after getting it out.

  • I've read this again as I wanted a little boost before I head out for chemo. Thank you, thank you! Going to try to stay relaxed and remember what you told me-. I too am a warrior! πŸ’ͺπŸ»πŸ‘ŠπŸ»

    That IV will go in on first try!!!

  • Hi lovely - I'm unable to check in as often as I can at the moment so just wanted to see how your chemo went? You certainly are a warrior my friend...keep kicking its butt! πŸ’ͺ🏻 Xx

  • Aren't you sweet! I went last Friday but due to some low bloods and a miscommunication between my onc team, they sent me home without chemo. Long story short- going in today. 🀞🏻It goes smooth after all the rucus. πŸ’ͺπŸ»πŸ‘ŠπŸ»πŸ–•πŸ»

    Hugs to you Jemina! 🌸🌺🌼🌺

  • Hi Anne

    Sorry to hear you are feeling bruised and battered. Despite what you feel it is early days and you will feel better once you're through carbo/taxol.

    I am BRCA 1 and yes it's a lot to take in when you are also coping with surgery and chemo but I was reading a US publication about BRCA recently which asserted that we do better on platinum based chemo and generally do better overall than our non BRCA sisters!

    Of course you would rather not be here at all but the strength of feeling you have now will fade, you will regain your strength and fight on.

    Take care. L xx

  • Thanks for the encouragement! 🌸🌟🌺

  • Anne,

    You have already gone through so much. You are brave and you will get through this too. Being scared is very normal. After my diagnosis, my husband and I talked about it a lot and decided that we have to define a new normal and be thankful for all good days. I am reading this book by Eckart Tolle called Power of NOW. It is fantastic and gives a very different perspective of life.

    This forum is great for getting things off your chest as all of us are going through similar things if not identical.

    My thoughts and prayers are with you. Lots of ehugs!

  • Hi Anne,

    You really have been through it,it's ok to be scared,we have all been there and you will come out the other end.

    OC is a horrible disease and I can only advise that you will go through many stages,being terrified,fighting,accepting,dreading and then,as I am now,getting on with life.

    When you are diagnosed it is a terrifying experience and you are in shock until a plan is in place and that is when you get your fight knickers on and accept whatever treatment is offered as it is your best chance to get through.Then you dread any check,scan etc.after treatment in case it shows a return of the beast.

    After a while you realise what will be will be,there's no way to avoid it and you will fight every step of the way,because there is no alternative.

    There comes a time and I have just reached it 2 years after end of treatment ,that you just realise you have to get on with life as every moment is precious and we have so much to live for.

    There's no shame in what you are feeling,I just hope you find a way to get through.

    Look into councelling,courses on coping,speak to the experts,they are all there to help.

    Don't be afraid to speak to us,we've all been there,

    Love and best wishes,

    Carole xx

  • Hi Anne

    Thanks so much for your reply to my post. I should have read your post here first. It sounds like you are having a worse time than me. Your comments really struck a cord especially the I'm 45 (I turned 47 last week) and is this ever going to end? Is this the new normal? The fear is so hard to deal with despite knowing we are being treated. I'm waiting for a date for a BRCA test and am worrying about what lies in store if it's positive. I've already had a benign breast lump.

    The thought of endless rounds of chemo and more surgery is daunting and saps your positivity.

    We can only go with the take it one day at a time. Deal with it/worry when it gets you down. Oh and make sure you post when you're having a meltdown.

    Please keep in touch and let us ladies know how you are and get on tomorrow.

    You WILL beat it.

    Em

    X

  • Just so you know it's normal for your CA125 to rise after surgery for a little bit. That shouldn't mean anything as far as reoccurrence! Stay strong!!!! You are doing so much fighting and going to work, just live xoxo

  • Hi Anne. You poor thing. You really are going thru' it. I am > 5 years since diagnosis. I have no pain. I'm on the maintenance drug Avastin now. I have a port. It's a god-send. Is there a reason you can't have one? It makes so much sense. I was losing my veins and I was miserable from the battle to find good veins. I love that port. See if you can push for one. I know you're in a vulnerable place at present but I sense a tough lady in there - see what you can do !!

    I had a core biopsy to see if a 'grain of sand' in my breast was cancer. It was but it was OC cancer. That may not sound good but it was to me as it was nothing new to be dealt with (in remission now).

    I too was 3C at diagnosis. I'm not BRCA but my understanding is that if you're BRCA, you're more likely to get OC/breast cancer but you're more likely to survive it/them. I know someone who had both and is now > 25 years clear of cancer.

    I think abdominal aches & pains so close to surgery, are to be expected. I had some and felt very weak for a while, but that was soon all OK.

    After 5 years it has, to be honest, become the life I lead. But there are many women on this forum who have gone back to work. Don't worry about your "self pity" we've all been there. You need time for that but I suspect you'll soon "get over it and get on with it". Best wishes. Oops, husband nagging. Says he's "plated up" thinks he's a chef. Better go or I'll be in trouble. Best wishes. Pauline.

  • Thank you Pauline! Every sign of nromalcy and extended remission helps rebuild my hope and re-energizes me. As for port, I am going to push for it if I have another day of trouble. In meantime I was told to drink drink drink night before and morning of chemo to hydrate which pumps up veins. And avoid caffeine during that time too- until its in. Last week that plus a few other tricks helped. πŸ™πŸ» We get it again on first try today.

    Again, your support and success is a huge help.. Thank you!!!

    This forum is everything! Going to be a warrior today and make you all proud.

    πŸ’œ Anne

  • Hi Anne

    I'm so sorry to read this after your really supportive post about surgery.

    It sounds like you're having a really rough week and it's so much harder to cope with everything if you're feeling ill as well as coping with the OC and everything else.

    Please rant away...I had a really bad time a few weeks ago and Macmillan were really helpful and they've put me in touch with a local cancer support centre which in the end I haven't used much as I've been working but it's good to know it's there.

    I feel like I'm on an emotional rollercoaster at the moment - swinging between feeling quite chilled about the whole thing and then just wanting to cry. Aside from my family and closest friends, the rest of the outside world have me labelled as brave and inspirational which I'm not at all.

    So please don't be hard on yourself and please do rant away, particularly here.

    Take care

    Andrea x

  • Hey Anne!

    I am sitting here at work and reading your post! I am the same age as you and almost one year post chemo (March 30th!) and today I have a bit of an achy back! I started a couch to 5K programme yesterday and I was at the gym lifting weights this morning and do you think that I am thinking that that could be the cause of my ever so slightly aching back.......oh no.....in my head the cancer is back!!!! Like you I am not like this every day but every so often it hits me like a steam train and today is one of those days!!!! So what I am trying to say is that it happens to us all and while time is a great buffer it still happens the key is to recognise it, acknowledge it and then promptly stuff it back into its crappy little box in the corner of your brain!!!!

    Hope you are feeling better today!

    Dx

  • Thanks Dx! Appreciate your note! I'll be so relieved when I am more healed from surgery. I think I had a false sense of security because I was doing better than expected the first few weeks. I've been told this phase of healing can bring new and different aches and pains, but those newer gnawing pains are simply freaking me out. 😬😳😡

    Back in chemo today and will be relieved to cross off one more getting me closer to what I hope are clean scans after this course.

    I'd love to hear more about your story. sounds like you got this under control and I admire that!! πŸ™ŒπŸ»

    Hopefully I will too. I miss my old self.

    Stay well! 🌼🌸🌺

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