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Sam09's avatar
Sam09
Member
8 years ago

Am I dying and no one has told me?

Hi lovely ladies,
I can almost feel it "AH a post from the interesting Sam 09" but yet again I need some advice please? I have spent a sleepless night last night with so many pains I would not know where to start! 2 weeks out from the news my liver mets had shrunk away then the news sorry we found mets in your spine in numerous places, my feeling wonderful suddenly started to diminish. From the moment I lay on the MRI table and had a backache to now I have felt lousy. I always feel so good and do not DO SICK AT ALL and never have however..... if I am not awake all night with the horrible buring perjeta itch attacking me then its the 
 pain throbbing in my spine feeling dizzy sometimes and I hope to God it is the stress and I have constant tightness and pain in my stomach yet the MRI revealed nothing else in my abdomen. Oh now its nausea too a few times a day and 2 days ago I was sitting on my steps on the phone and I stood up and my left knee went strange and I could not walk on it and still now am having trouble. I thought perhaps I had jarred it doing a weights session without knowing however this morning upon rising the right knee felt strange almost asleep and felt swollen a little. PANIC!!!!!  I am to say understating I am scared stiff. How could I feel so good and then find out some news and suddenly in pain and feel so horrible. I have been told well its good your liver mets have shrunk and do not worry people live for years and years with bone mets.But now I feel horrible....
But is it anywhere else ,is this not the question we all wonder,as from what I see we go along to our oncs and they say how do you feel you say good then its treatment off home until the day you say I have a problem!!!!!  I have this horrible feeling because I am so intune with my body this is it!!!!  and perhaps I am on my way out. I feel so angry..... is this what I got for looking after myself so much caring about nuturing my body in and out. Hail to fat people for what I can see I should have had that cheesecake I would have liked to have or eaten out occasionally or lay on the beach instead of running and gyming it perhaps perhaps.
Or the question is ladies.... am I dying or am I living this disease and my good feeling of health is gone?
  Either way I cannot go on like this.... I do not want to do sick and never have... this is not fun life if I cannot run jump be active and exercise  thenI am not me..... ah the tears are falling. How I wish!!!!!!!!!!!  Yes feel free to dong me on the head I am sure you all want too!  I totally get it because I do too!!!!!!
  • Brenda5's avatar
    Brenda5
    Member
    8 years ago
    Hey Sam, we are all dying a little bit each day as that is what makes us mortal. Sometimes it is sped up, sometimes it gets slowed down and sometimes in horrific accidents it just gets stopped altogether. Having mets just means you are a high maintenance girl now and there are some extra benefits you can get being on palliative care so look in to those. Its a bummer when you can't sleep but you feel like you could for 1000 years. I know that feeling. What is your mattress like? I got one of those plush pillow top mattress covers (not cheap) and it has been pretty good. Well, better than nothing. I hope your treatment of pain gets under control. Sometimes it takes a little bit of trial and error to find out just which one suits your body, or as in my dads case, a combination of a few of them. Get on to that doctor and keep on asking for better. I am a great believer in the power of vitamin C too and make sure you take them every day. Hugz <3
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago
    Sam09 said:
    As usual you guys always never fail to make me feel better. I guess being super tired makes the mind race. I also think somehow because I do not look sick or act sick no one in the world    family or not ever asks how I am. I think sometimes I want to scream out loud hey I'm not the same and I'm not ok
    You're not alone!  That's what we are here for!  We all feel that at times, family, friends, they are oblivious and it makes us upset but if you get cranky with them it doesn't solve the problem!  It's what you call a shit, bloody, bugger, bastard of a so and so, along with many more swear words..............

    Take care 
  • Zoffiel's avatar
    Zoffiel
    Member
    8 years ago
    Take a breath, Sam.
    Everything you are feeling is valid, but the shit thing is you can do nothing about any of it. Cancer is deadly and confusing and unfair. It is likely to kill many of us. Is yours likely to bump you off in the next few weeks? Who knows, but you can be pretty sure if there were indications you were palliative, someone would have told you.

    Now, as you may have gathered, I don't 'do' squishy hand holding stuff, but I'm pretty good at practical. The practical part thinks your team, while they do not have clairvoyant skills, will be giving you as much info as they reasonably can. You know you have mets, which sucks. You also know that you are getting monitored much more closely than those with no evidence of disease, so if anything changes you are likely to find out pretty quickly. Cold comfort, sorry, but you are in better control of the 'known unknowns' than some.

    As for cheesecake. Eat it. Have two pieces. If everything is turning to shit it won't matter,. And even if you have just hit a few bumps in the road it still won't matter.

    Grieving for who we were before we got thrown in the blender is something we all do in our own way. I find the process distressing on a personal level but fascinating on a forensic level--which helps me cope.
  • Sam09's avatar
    Sam09
    Member
    8 years ago
    As usual you guys always never fail to make me feel better. I guess being super tired makes the mind race. I also think somehow because I do not look sick or act sick no one in the world    family or not ever asks how I am. I think sometimes I want to scream out loud hey I'm not the same and I'm not ok
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago
    Sam everyone is looking out for each other!  Hope you are feeling better as the day goes on!  Take care xx
  • June1952's avatar
    June1952
    Member
    8 years ago
    Hey @Sam09
    Listen to @iserbrown's words of wisdom.  Stressing is not helping you and we all know it is hard not to stress and none of us like to feel as though our bodies have let us down even though we have taken good care of them over our lifetime but it has happened and we all have to make the best of it however we can.
    I too have said if I was a dog someone would have me put down but we get over that feeling somehow.
    Keep talking here as we all care about each other.
    Sending you a big hug   Summer  :-)
  • jena's avatar
    jena
    Member
    8 years ago
    Hi @Sam09. I'm so sorry to read of your pain.  

    I was also very suddenly pulled up by bone mets.  I'd been experiencing inexplicable back pain for a while.   Not long after I was diagnosed with metastatic breast cancer, the pain levels sky rocketed. I've had three radiotherapy treatments that have helped enormously with the pain. I now have a micro-fracture in my left hip just as the last treatment was starting to work.
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago
    @Sam09

    I need to say "settle Gretel" - you've got yourself in quite a pickle! 
    Yeah I know you've said before you don't like counsellors however perhaps you need to rethink that as they will give you coping mechanisms to stop your mind from racing!  You have looked after yourself by the sound of it, and still got some fitness, which is a bonus, and now you are wondering if a different lifestyle would've given a different result!  Well who bl....y knows! No it's not fair but it is what it is! 
    Stop being so hard on yourself and reach out!
    Have you joined the group http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
    Take care