New here, highly anxious

FormerMember
FormerMember
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Hi there everyone,

This is very new to me, apologies in advance if this turns out to be a long post.

I was diagnosed in April with breast cancer, I’m 32, have three kids, one being a baby. The diagnosis as I’m sure you’re all aware has devastated my family, I don’t have a large family but the relatives I do have are really struggling as am I.

Began chemotherapy in May, it made me SO sick. Various admissions to A&E with dehydration through sickness, they reduced the dose, increased anti-sickness meds, I was having treatment every other week. Next, I was admitted to hospital with severe pain at the site of the tumours (I had 3, two in my breast and one covering lymph nodes, triple negative and HER2+). Oncologist came to see me and visually examined me, said that chemotherapy wasn’t working and they needed to change tactics and move to another type of treatment. I’ll say now - I’ve been so traumatised by everything - that I didn’t look into the names of treatments properly or the detailed side effects because I was so petrified - not knowing what was ahead of me was better than knowing. Anyway, moved onto the next type of treatment, and again no joy. At first it seemed like it was responding but the oncologist kept a close eye and decided it wasn’t working. I didn’t have any scans to confirm this which made me slightly sceptical but I had to go with what she said. She decided surgery had to be brought forward - the original plan was for chemotherapy first then surgery after several sessions. They rushed surgery through and I had it last week, mastectomy plus lymph node clearance. They used stomach tissue to close the wound where my breast was but couldn’t get enough to reconstruct the breast properly so I have one larger than the other - at this stage I don’t care about this - I’m just feeling like I live in a permanent nightmare. Since April this year my life has been entirely on hold and consisted only of cancer. I can’t think of anything else. The surgeon who assessed me several times (didn’t carry out the surgery herself due to undergoing a procedure herself and being absent from work) told me she wasn’t confident they’d be able to remove all the cancer, in fact she didn’t even believe they’d be able to close the wound properly. I had a plastic surgeon do that part. 
ive spent the last few months barely able to eat, this is due to the sickness but now the sheer anxiety and how much power that appears to have over me now. I had anxiety before this diagnosis but managed it by myself fairly well. But since this, I’ve seriously struggled with my anxiety and have now had several anxiety attacks - the last one being last week whilst in hospital after the op. The nurse was struggling to know what to say to me in the end, I wasn’t able to compose myself very well. I can’t find any appetite and go days without eating. They’ve tried giving me build up drinks like Ensure but I can’t even stomach those. I just don’t feel hungry. I’m still on morphine patches at the moment - I was put on these before surgery due to the pain the tumours were causing me, as I couldn’t hold down any morphine tablets - and I’m wondering if the patches could actually be making me feel nauseous like the tablets did. But the Dr says I mustn’t just come off them without being weaned off so I have to wean off first. I don’t feel I need them any longer but they’ve warned me that I could end up withdrawing from the morphine if I don’t come off it properly. 
I keep typing and so much more keeps coming to mind for me to say but none of you have enough time to listen and reply - there’s so much! I’m trying to stick to the main points. Since the op, I’m mentally struggling. I called my GP today to try and get some help but can’t get an appointment at the moment because they’re fully booked. I keep feeling afraid to move, like the wound is going to reopen, but then I am also aware that I have to keep moving a little bit to recover properly. Just going to the loo, I’m scared. I felt a weird pang earlier under the reconstructed bit and freaked out thinking something was going to start pouring out or I’d end up back in hospital again - I’ve developed a huge fear of the place since spending so much time there via emergency admissions recently. 

anyway. So sorry for going on. I don’t even know what anyone can say, I guess I am looking for better ways of managing my mental health to therefore improve my diet/appetite. I keep telling myself there are people out there who’ve been through this but I’m struggling to believe that at this point now? Like I feel so alone, that I can’t imagine anyone else feeling like this? I’ve never been one for taking meds for my mental health but am starting to think this may be the route I have to go down in order to get through this. 

thanks in advance for any words and I hope you’re all ok. 

  • Hi sunflower, this group have been an amazing support for me going through my journey and know they will be for you too.  Everyone’s experience is different and although mine is different to yours there are some things we have in common and the same will be for others too so reach out with any questions or fears you have and someone will answer if they can.

    reading your story I can totally understand why you are anxious, lean on your friends and family, they will be struggling themselves but will also want to help and support you, don’t feel you need to protect them, let them help.  Call your BCN, they can answer questions too and deal with this every day so will offer practical advice.

    regarding your mental health and well-being it’s not an easy one, I’ve tried to occupy myself, made a list of things to do that I enjoy doing or need doing and I never get round to but appreciate you may not have the energy if you aren’t eating much.

    I really wish I could be more helpful but wanted to respond to your post to let you know you aren’t alone, people are here to listen and help where we can

    xx

    Chelle

  • So sorry to hear about the horrible time you are having. Do you have a breast care nurse you can talk things through with, I have found them to be very knowledgeable and helpful. I have also called the Macmillan helpline when I have been anxious and have heard the Maggies organisation are also very good.

    Take care x

  • Welcome. Please don't apologise for the long post. Some of us have a lot to tell and sometimes it feels better to get it out. It sounds like you have been on a really hard going journey and no matter the stage or severity, it is a hard journey. Everyone reacts and copes differently. When I was diagnosed, cancer was all I thought about too.

    Have you thought about phoning the Macmillan helpline for some support? Talking to a stranger can be helpful and they have nurses too and even phone buddy's. I haven't used them but others have.  Depending on where you are based there are also Maggie Centres - I have one attached to The Christie as I am about to start radiotherapy.  Click my name to read my story. You aren't alone we do all have cancer in common even though our stories are different. 

    Keep going ... one day at a time xx

  • FormerMember
    FormerMember

    Dear Sunflower Sunflower. I feel for you. Well done for reaching out to this forum, can't have been easy to try to put it into words. Like others I've found the Macmillan helpline really helpful in my anxious / low patches, I trust them and that made all the difference.

  • FormerMember
    FormerMember in reply to Tired Minion

    Hi Tired Minion,

    thank you for your reply. I did try calling Macmillan today, the lady was very nice but told me there weren’t any support workers available to take my call right now and that someone would call me back within 24 hours. 
    it’s such a tough journey isn’t it, none of us want to be on it but we find ourselves on it. My cousin said something to me at the beginning which I found helpful, he said you’re on this journey now and each day you do is one less day on this journey. It’s just terrifying and overwhelming, way too much for one person to take on. Even just taking one day at a time is so hard.

    thanks again. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Katherine,

    thank you. I’m glad to know you’ve found calling Macmillan helpful. Hopefully when they call me back I’ll feel able to talk and open up. 

  • FormerMember
    FormerMember in reply to Chelle1309

    Hi Chelle,

    thank you. I appreciate your response. My breast care nurse is helpful, she is so good that I think she’s really popular and not always able to get hold of but she’s been a good help so far. I may give her a call.

    thanks again 

  • FormerMember
    FormerMember in reply to Gilliebean

    Hi Gilliebean,

    This forum is the first I’ve heard of Maggie’s - wondering if they’re not available in my area as I think the BCN may have suggested them to me by now. I’ll Google them and see where they are based. 

    Thank you for your reply

  • Glad you have tried. Maybe I should give them a go. I think I bottle things up too much.  At least you have some options. Its not a nice journey at the moment and its one we wouldn't want to pick out of choice. Yes some days feel long but sometimes one day at a time is all I can face as the waiting game is arduous. We are here to help if we can. Not all have same journey but if i can offer any hints and tips then I will. I received some lovely replies when I posted new back in June after my surgery so am trying to pay it forward x

  • https://www.maggies.org/

    I had a leaflet in my pack when diagnosed and a friend who had been through surgery a couple of years ago recommended them. X