need to connect

Dessi Member Posts: 12
edited August 2023 in Newly diagnosed
Hi all
I was diagnosed with Early BC on 1 Aug and had my surgery last Friday 11 Aug. Am home now feeling sore, tired and still overwhelmed. Most of all I feel guilty that I can't look after my family and do my job. I know I need help but I just don't have ability to ask for it. I don't know whether what I'm doing is right. Do I stay in my PJs and hop into bed whenever I want? Do I start exercising? should I exercise? Should I walk the 100 metres to cafe where my girlfriends want to have coffee with me? Is it ok to cry? How long before pathology and lymph node biopsy results come back? When do I get my surgeon to fill out certificate for income protection insurer (which I've been paying for 10 years and never used)? Should I be hassling him about it now or wait till post op appointment which not for another 10 days? I am educated, highly qualified with 5 children (one doing year 12 - It's shit timing!) and these questions sound so ridiculous now that I have written them down. I should know how to be!!! Surely!!!! I have always been the doer, never asked for help and now afraid that if I do I will be seen as weak. I hope no one is offended by the language but this is just "f...d"!!!!! I don't want to be that person and it really angers me that I may have to be. 
I know as a minimum I will need radiotherapy and hormone suppressant therapy (the latter scares me more) and all else depends on path and biopsy results. Is it possible I am still in shock and denial?                   


  • arpie
    arpie Member Posts: 7,584
    I am SO Sorry to see you join our select little group, @Dessi xx.  It sounds like you have been a very strong woman looking after your family over the years, but right now, I think you need a bit of space - as you need to look after YOU in the next few months til you get a handle on this xx.

    Just the anaesthetic will make you feel sleepy & 'off' for a while as well as 'foggy memory' - so stay in your PJs for a while & sleep it off - you'll know when you are ready to 'dress up' and go out!  You are still VERY early in your recovery journey - and rest is a major part of it.   If you want to catch up with your girlfriends for a coffee - get one to pick you up for now & drop you home again  ..... it may be quite tiring for you - so take advantage of any offers of meals, driving & anything else that you can't manage on your own just now.

    Wait a wee while before you get back into exercise ..... VERY GENTLE exercise 'should' be fine (pain will tell you to STOP) .... but you can't swim til after your wounds have healed fully.

    If you find it becoming a bit overwhelming, please ring our lovely ladies on the Helpline on 1800 500 258, as this disease really mucks with your BRAIN, even more than your body xx

    I wasn't working when I was diagnosed - so hopefully someone else will jump in & advise you on THAT side of things - but if you've been paying for income protection insurance - it sounds fair to me, that you should be able to put in a claim ..... take the paperwork WITH YOU next time you see your surgeon - and get him to fill it in ANYWAY, I reckon - you may or may not 'use it' but at least you'll have it with you already!  (Keep a photocopy of it too!)

    Rads and hormone suppressants are 'all that bad' .... everyone is different & are affected differently .... so try not to pre-judge treatments at this point in time.

    take care, look after YOU - your family needs to step up to the plate & take the pressure off you just now xx
  • Julez1958
    Julez1958 Member Posts: 1,123
    Hi @Dessi
    Yes it’s all a whirlwind and it takes time to adjust .
    Given your diagnosis was only 1 August  you would very  definately  still be in the shock/ “how can this be happening to me? “ stage .
    I liken the whole thing to  be a bit like when a loved one dies as you are grieving for your formerly bulletproof self.
    This is a time to look after yourself both physically and emotionally and be a bit selfish I was lucky that I was 62 on diagnosis , semi retired with a retired hubby and no dependants.
    I stayed in my pyjamas quite a bit after my surgeries  ( mastectomy and then later after recovering from radiotherapy , DIEP flap reconstruction) and if the doorbell rang I’d just say “ sorry about the PJs I just had surgery”.
    I told people I wasn’t ready for visitors but phone calls and texts were appreciated.
    I used my hubby to sone extent as gatekeeper.
    This website and forum is a wealth of information , it took me a while to work my way all around it.
    I thoroughly recommend the podcasts by Dr Charlotte Tottman on here “ What you don’t know until you do” - she is a clinical psychologist specialising in cancer related distress who herself got breast cancer.
    There is also a blog and book by a UK breast cancer surgeon Dr Liz O’Riordan who got breast cancer I found very helpful.
    And you can post anything on here , we all “ get it” in a way people  who have not faced this diagnosis never really can .
    Take care 🌺
  • Blossom1961
    Blossom1961 Member Posts: 2,377
    @Dessi No question is silly on here. Getting diagnosed with cancer is a huge shock to the system, mentally and physically. It has only been two weeks since you were diagnosed so of course you are confused and probably feeling a bit lost. What do you feel like doing? Going out for coffee will help you feel a bit more normal, but only if you feel up to it. Getting out for a walk in the fresh air will help clear your head. Have a cry, a big long one. Do you have a breast care nurse? Ring her just for a chat. Ring the BCNA helpline just for a chat. They understand and will be able to help you navigate your way through this situation. Biopsy results take about fourteen days. I would be asking about a certificate for your income protection and get things started.

    Mostly, look after you. Stop the guilt thing. You are worth more than that. Life has changed. Be gentle on yourself.

    Sending a big hug xxx
  • Tarma
    Tarma Member Posts: 73
    @Dessi Biiiigg Cuuddddle 🤗 4 u .. 
  • GinGin
    GinGin Member Posts: 111
    Good morning @Dessi,
    There’s amazing support here. I am so glad and thankful this online support is available. Like to share other support medium I have utilised and found them extremely beneficial for my emotional and mental wellbeing:
    1. BCNA call line: 1800500258( amazing ladies manage those lines)
    2. My fabulous breast care nurse: I have her number saved as favourite :smile:
    3. My GP (I am lucky to have found a GP who ‘click’ with me)
    4. My hubby ( last resort : even though he has been extremely supportive, I feel he doesn’t ‘get’ what I am going through.)

    Please be kind to yourself. We are going through BC. Though I haven’t started my treatment ( surgery this Friday),  my hubby has started doing all housework and cooking. I don’t feel guilty at all as I know I need to take the best care for myself so we can enjoy more good years ahead. 

    Friends have already started offering help and I have ‘assigned tasks’ to them as well. 

    Remember when you get on a flight, what the announcement says: always put the mask on yourself first before putting for others.

    This will be a roller coaster ride but amazing support is available for us and we are not alone in this journey.
  • PrisMay1
    PrisMay1 Member Posts: 65
    Give yourself time. I had my surgery - lumpectomy - on 11 July so a month before you. I still get some pain but I think it’s more doing too much! I’m still not back into much exercise - just daily walks. I usually do yoga & Pilates and hoping to get back to that next week - I have a good range of motion and no pain but worried about weight bearing on my shoulders doing planks, push-ups etc. 
    I had radiotherapy in my 40s and it made me really tired so I took sick leave for that period. I’ve been told it affects you more the younger you are! Hormone blockers are OK - they just bring on menopause early.  
    I got my biopsy results 2 days after my surgery but depends on your surgeon and if you’re private or public. Wherever you had your surgery you should be able to talk to a Breast Care Nurse - they are invaluable! 
  • mell45
    mell45 Member Posts: 26
    Hi @Dessi you are not alone! I am a mum of 4, had surgery in May, and know exactly how you feel. Self care is the game! If someone else can do it, let them. Say yes to any offers of help. Rest when you need. Cry when you need. Do what makes you feel better - binge watch netflix, sleep, rest. Whatever it is. I am on hormone blockers (Letrozole and zoladex). There's lot's on here about that but also take with grain of salt. I am managing them quite well. I am on venlafaxine (efexor) to manage hot flushes. The rest of the symptoms are not too problematic (noticeable but manageable). Listen to BCNA podcasts, especially the ones with Dr Charlotte Tottman, they really helped me enormously. Oh and audiobooks were my friend post op when I just felt to s*$t to read or even watch tv. What I discovered as a highly functional organised self motivated working mum of 4, is that this is the hardest thing I have face, and no amount of self talk made things improve any quicker, what I needed was time and support. I am now 2.5 months post op and I have been doing some jogging, gym through the hospital twice weekly and feel mostly very good. I walked very short distances first few days I was home, literally about 800m (tried to do twice daily) and then increased slowly. I am now doing interval jogs. It gets better.
    I do notice emotional and cognitive fatigue mostly now, I take a LOT more time to rest (not filling my calendar with everyone who wants to see me for coffee. On this I follow my gut, if you want to have coffee with the girl friends, have coffee. If not, then don't. If you say yes and then feel not up to it, then cancel. You are number 1 at the moment. Year 12 is a tricky time. I can't help with that one.
    Massive hugs. Wishing you all the best.
  • Dessi
    Dessi Member Posts: 12
    Hello@Lozz Thank you for your post. I am so happy to see that I have in some small way helped (not sure “help” is the right word). I am thinking of you and wishing you all the best for what lies ahead and as for work….all I can suggest is what I realize I get told every day - “one day at a time”. I know it’s hard to hear that because we women are planners and organizers - we love our work so we want to know now what it will look like in the foreseeable future. Listening to the podcasts (esp one about redefining priorities) and this online forum is really helping me to understand that your whole world changes with a BC diagnosis but I’m starting to see that as shitty as the treatments will be we do it to have a better life - maybe even better than the one we were having - because we will get to the point where we will no longer take anything for granted and everything WLL BE sweeter. Keep going - you’ve got this !!!!! 
  • arpie
    arpie Member Posts: 7,584
    edited August 2023
  • Julez1958
    Julez1958 Member Posts: 1,123
    Hi @Lozz
    Totally relate to the random crying thing
    For about 4 weeks after my diagnosis I cried at completely random times and places ( luckily I was able to take time off work).
    Like at the checkout in the supermarket.
    And I am not normally a cry baby.
    I did have a couple of sessions with a psychologist who specialized in cancer related distress and one of the best things she said to me was “ it’s ok to cry”.
    As time has gone by the crying is a lot less but things can trigger it ( I never noticed how many “ cancer breakthrough” stories appeared on tv until I found myself in “ the club”).
    Things will get better .🌺
  • Lozz
    Lozz Member Posts: 6
    Thanks @Julez1958 for sharing, it really does help knowing we are not the alone going through these experiences and hearing what works for others. All the best 💐
  • Lozz
    Lozz Member Posts: 6

    @Dessi  - thanks and yes I have really appreciated the podcasts and the app resources as well. I love your outlook and am working on improving my positivity .. I really wish you well. 🌸 Xx