Forum Discussion

Angie1966's avatar
Angie1966
Member
11 years ago

Really on your own......

Hi girls, was just wondering if anybody else feels that, although they have a support crew of family and doctors, that at the end of the day, you are really on your own......

It's been a year since my surgery and have had shoulder/upper arm pain ever since the op.  I've had numerous scans on my arm but nothing shows up.  I read that 70% of patients get metatistic bone cancer so it is really worrying me.  But the thing is, I don't want to bring my partner or my children down with my thinking this way (or going on about my cancer all the time) and feel that I really just have to shut up and put up with it.  And I know people will say, oh no talk to your health professionals about it, but at the end of the day, all they do is kind of nod because they really don't know either! 

Although everyone close to me cares about my wellbeing, they really have no idea what its like to go through this and I don't want to be a burden to them and be going on about my sore shoulder all the time.

Thanks for listening.

Angie

family
  • Chorsell's avatar
    Chorsell
    Member
    11 years ago

    Hey Angie - I understand exactly what you are saying...  But you know you are never alone if you are on this site - this is a safe place to share your fears your triumphs and seek advice.

    I am sure there are many women who feel like you - I know i do - there is a lot to be said for sharing with someone who truly understands - unless you have been where we are it is hard to comprehend what it feels like - the sense of panic at annual check ups - or feeling paranoid about every unusual ache that you have...

    I know that i have had ongoing issues with my shoulders and i have this bizarre pain in my collar bone...

    I suspect for me that alot of it is directly related to the change in posture during mastectomy/recon process and i am hoping it will settle.  I have found that physio has helped enormously with the shoulder...

    If you are unsure get it checked again, or perhaps talk to your GP about your concerns - you need to be able to put your mind at rest.  This site is a great place to get things off your chest if you need to give your loved ones a break.

    There is also a pilates DVD available through your Breast care nurse which may help too...'

    Sending big hugs

    Chris

  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    I also had good support but I realised pretty early on that people don't really understand what it's like, then came the realisation that my expectation that they would understand was unrealistic. My family and friends felt sorry for me which was nice but not helpful. My medical team were helpful but that was the professional side of things. This network was great because everybody has been there, done that. Every time I get an ache or a pain now (I get a few being on Arimidex) I start to think what now? I hope your shoulder problems eases soon, keep in touch,

    Hazel xx

  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    I also had good support but I realised pretty early on that people don't really understand what it's like, then came the realisation that my expectation that they would understand was unrealistic. My family and friends felt sorry for me which was nice but not helpful. My medical team were helpful but that was the professional side of things. This network was great because everybody has been there, done that. Every time I get an ache or a pain now (I get a few being on Arimidex) I start to think what now? I hope your shoulder problems eases soon, keep in touch,

    Hazel xx

  • Angie1966's avatar
    Angie1966
    Member
    11 years ago

    Hi Michelle, thanks for replying.  I've contacted the lymphodema nurse at the hospital and will go on the waiting list to see her, so hopefully as you and others say, some specific exercises may help.

  • Angie1966's avatar
    Angie1966
    Member
    11 years ago

    Hi Chris, thank you for replying, it is good to know that I'm not alone in my feelings.  Hugs to you.

  • Angie1966's avatar
    Angie1966
    Member
    11 years ago

    Thanks for commenting Mona.  Yes I know what you mean about on one hand wishing friends/family would raise the issue but then also not wanting to burden them.  And I also think they don't know what to say.... I had a new job last year and I had to tell them that I'd just finished cancer treatment (which you will know is a little traumatic to say the least!) - and then all my colleagues (2 females) did was kinda nod and then changed the subject and they never brought it up again in the whole six months I worked there!  I realised then that I wouldn't just tell anyone about by cancer in the future because I think its such a personal thing and that others don't really know what to say and think it just makes them feel uncomfortable with you. 

  • Angie1966's avatar
    Angie1966
    Member
    11 years ago

    Hi Hazel, your post about expecting people to understand something they have never gone through reminded me of when I had my first child.  We were the first in our group to have a child and none of my friends could understand why I didn't now want to go out with a crying baby in tow and suddenly how my whole life now revolved around this little person.  And you are right about cancer, it is unrealistic for us to expect people to understand what we are going through.  Hugs to you.