Now what!!

FormerMember
FormerMember
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Hi I’m Vicki, not very good at showing or sharing my feelings/emotions but I’m struggling to deal with things now. I was 31 when I was was diagnosed with stage 3 breast cancer on 30th May 2017, a date I’ll never forget as life’s took a constant downward spiral since. January last year 2 weeks after finishing chemo I then found out I had the BRCA1 gene, which explained a lot regarding the loss of my mam & nana at a young age. So to reduce the risk of cancer returning I had a double mastectomy & reconstruction ( with expandable implants). My dad rushed me to hospital 5 days after surgery, I knew something was wrong the pain was unbearable, I immediately had implants removed followed by an apology from my surgeon who admitted making a mistake. Days later I then had to get the dead nipples & breast skin removed,  was reassured by my surgeon that he will put things right.... it’s now been 15 months had 3 reconstruction surgery dates cancelled, fobbed off with excuses & expected to get on with the life I should be grateful to have. But I ain’t got a life I’m a 33yr old hermit crippled with anxiety, self loathe & since having ovaries removed I don’t even feel like a person never mind a woman. I just need a purpose or something because I don’t like the way I’m feeling, I often wish I ignored the lump & have a happy short life, it seems better than the longer miserable life I’m facing now! I can’t pretend to be all brave & everything is fine anymore, I can’t go back to my work or have a relationship,  how does people get on with it??  xx

  • Hi Vicki, I'm sorry to hear about all you've been through- and at a relatively young age too You might  find it useful to join the Breast cancer and Diagnosed  at a young age groups . Attough  you no longer have breast cancer, the folk on there  know where you're coming from, more so  even than those in this general group.

    Have you a Maggie's centre near you? They have various groups n also you can talk to ppl one to one. You could also ring the helpline on 0808 808 0000,  8am to 8pm..it sounds like u could maybe do with some  short term meds to help with anxiety too.

    But you've taken the first step by joining the community here. Welcome, even tho it's not a place you'd willingly come 

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Hi vicky I to was diagnosed with invasive ductal carcinoma ER + PR - her2-   grade 2 stage 3march 2017 had lumpectomy and then went on to have lymph node clearance right side also had 15 round of radiotherapy  I was quite positive through my treatment then was put on tamoxifen and started having side effects in Sept last year had big Pv bleed and had to have biopsy and d n c my womb lining was very thick thought that was sorted then this year in July had another pv  bleed stopped it with tablets had another biopsy which was okay but uterus wall is thick again and have clusters of fibroid but this time they just want to leave them it is getting me down I think after having cancer we think thing will get back to normal but the cancer changes us  and we see things in a different way  I think you should have a word with your breast nurse if you still see her or your doctor and explain how you are feeling we go through a lot having cancer and sometimes  need support to get us through sending you gentle hugs I feel for you I have had the same feelings xxx

  • Hi

    Sorry to hear how you are feeling - cancer is a difficult thing to deal with and the end of active treatment is often not the end of the process - there is usually still a lot of emotional stuff to deal with, not to mention treatment side effects - hence this group. 

    It may not seem like it right now, but there is life after cancer and you can go on and find those things you want - including a relationship. 

    You've made a great start by coming here and I see you've joined the under 50's breast group. I'd suggest also diving in to the main breast group - it's a much bigger and busier group and people often use them both. Also, there are lots of us in the main group who are post-treatment so you can chat about these things there too.

    You've been through (and are still going through) quite an ordeal and although we all know we should be grateful to be alive, and that's often how other people assume we will feel, we are all entitled to feel differently - to mourn our previous life and take our time to find our new way through. My treatment finished at the end of 2016, but I have times when I struggle and question whether it was worth it when life doesn't take the direction I'd like. As time goes on, I learn to recognise and deal with those feelings so that they pass. It's a process.

    There are lots of things that can help and everyone will find a different thing suits them so I'll list some things that people do and recomend. I'm afraid I can't link to them all as I'm on my phone.

    Firstly, the big one - counselling. It's not for everyone but lots of people find it very helpful and it's recognised that patients may need it after treatment. You should be able to access it via several ways - your breast clinic, GP, a Maggies centre, a Breast Cancer Haven centre, self-referal. It depends where you are and what is available locally, but there should be something.

    Reading - there is an article by Dr Peter Harvey called something like After treatment finishes - what next. You could search for it here on the community or google it. It's a good start to explain the emotional process we all go through. There are also lots of books about dealing with life after cancer - I read one called "The Cancer Survivors Companion" but there are others.

    Meditation - again, not for everyone but it has been shown to have benefits for people post-treatment, some hospitals even offer meditation sessions. You could find a local class or use an app like Calm or Headspace.

    Support groups - there are lots of them - including this community! I'm not allowed to recommend closed facebook groups, but lots of people have found support there useful and some of them organise local events and meets so you can get together and do something enjoyable. There may also be groups at your hospital, GP, Maggies etc 

    Exercise - this is what works for me. Either exercising alone or in a group or a dedicated cancer group. Some hospitals have exercise groups you can join, and again, Maggies and Breast Cancer Haven offer exercise sessions. There are also some dedicated cancer groups for specific activities or sports. I was lucky enough to be introduced to a cancer dragon boat team by my breast clinic physio and it's had a huge, positive impact on my life. You could check out the "In your Area" section of this site to see if there is anything near you. Otherwise a quick social media search. Meet Up is also a good site to find general activities near you - I do some walking/hiking with one of the groups but there is plenty there for whatever activity you like

    Volunteering - this has also helped me. Being on the community here, for one thing, but I also volunteer with my local Macmillan group and help out at Look Good Feel Better sessions. It's a boost because you feel useful and helpful, but it also puts you in contact with other people who understand what you've been through. Sometimes, people even find it is a way back to work. There are lots of ways to do this - maybe through your hospital, local Macmillan Centre, or this website via the "Get Involved" button.

    You could also check out the Cancer Care Map - it's a website for listings of cancer- related services and groups. It's fairly new (a few years old) so there's not masses on there but  you may find something.

    Well, that's probably enough from me - you may be wishing I hadn't replied Wink

    Try to remember that you are on your own path, it may twist and turn and there will be times it seems a struggle, but it is leading you somewhere - your somewhere. It helps, I think to work on building your confidence back up, then everything else seems a little easier.

    Hoping the clouds are soon lifted and that you get closer to getting your surgery resolved!

    R

  • What.a great n detailed answer Ronstar! Much better than mine...

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • that's funny - I didn't see your answer when I clicked on the thread! Phone gremlins, probably. Your answer was great and you had already recommended some of the stuff I put down.

    Great minds! Wink

    R

  • FormerMember
    FormerMember

    Hi Vicki, golly that is absolutely such a hard situation to be going through.  Why is it that people do say "oh be grateful, you have a life, people are worse off, etc, etc".  how is that meant to help you at all.  Your life is extremely hard.  I just had to write to you, i mean i wanted to write to you.  You are a young woman in your prime.  Don't give up and get those doctors to sort a date for you jolly soon !!  you can do it vicki.  really take care of yourself.  i'm a 48 year old women who is in remission for lyphoma.  so not going through anything as bad as you.  I suffer with mental health problems, i can relate to your comment of "you maybe wanted a short happy life not knowing". i really hope once the doctors get your operation all done and you are as happy as you can be with the results, that you can try and move on with maybe finding a part time job and in time a relationship.  you have to love yourself and have self esteem though before you  can get someone else to love you and make you feel safe.  hey can't you get your gp to write to the surgeons and say your mental health has really suffered and is suffering and you find it hard to even leave the house.  surely they would listen.  take care jesse