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FionaM's avatar
FionaM
Member
2 years ago

Finally brave enough to call BCNA helpline, and they are closed ...

So, sorry about this,  but I have to have a verbal vomit. And I did have a laugh to myself when I heard the message on the BCNA answering machine..... but now it's tears.

Does this ever end?

 I'm 2 years down the track,  after mastectomy,  chemo,  radiation, and reconstruction, all during covid, via support-less "click and collect medicine", and now 2 years on Zoladex/AI's so far (1102 more of those suckers to take if I can hack it, not that I'm counting). No one told me the depth that the side effects could be,  and I have felt guilty for feeling depressed and anxious most of the time.  Sleep is awful, hot flushes are now down to 8 -10 per day from a high of 50 or so, but are doing my head in as they now seem to be coming with a panicky sensation. My brain doesn't work properly, my hands hurt  and life just keeps getting more complex.  I'm the care giver of the family,  and my husband was diagnosed with stage 3 rectal cancer on the 2nd anniversary of my last dose of chemo.  He's coping,  I'm falling apart.  I feel sick when I think of the journey he is starting,  and I'm not a good support for him as I'm feeling so stressed and triggered by it all. Work is using up a lot of resources as I'm short staffed and I can't cut back.

I have no idea what to do.  I'm really reluctant to take meds for this. I've tried clonidine before, and while it stopped my heart racing as I was trying to go to sleep,  it made me too dopey during the day to keep using it,  especially since it didn't help the hot flushes.  I'm pretty sure I'll have the same issues on anything else,  and I can't afford to be dopey with everything that's going on. I'm seriously considering stopping the AI's.  But i feel guilty for thinking about that too. And I suspect that if I do stop them,  I'll not be comfortable with that decision either. 

Catch 22.

Sorry, but I needed to vent.  Writing it down makes you stop and think a bit, and maybe that's helpful.....

Anyone have a spare magic wand??

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  • Afraser's avatar
    Afraser
    Member
    2 years ago
    Sorry, don’t have a wand but you really do have a lot to deal with. First of all, cut the guilt. You are trying to cope with difficult circumstances when you are under par, you have nothing to feel guilty about and those feelings don’t help you in any way.

    Second, have you tried any other AI? Those side effects are debilitating and I too would be nervous about adding other meds on top to try and counter the side effects. What does your oncologist say? He/she should take this seriously. You might discuss stopping the AIs for a limited time , to see how you feel, recover some balance in your life and try again. Sleep deprivation makes almost anything much more difficult. 

    Your husband is coping, which is good, but remember that everyone’s experience of cancer can be very different. My husband had bowel cancer, a few years after my diagnosis, managed chemo with few side effects (didn’t lose his hair!), soldiered on and has never looked back. Worrying for your husband too is natural but doesn’t really assist either of you. 

    Who can you talk to (in addition to here)? Your GP? Breast care nurse? Venting does help but so does letting your cares and worries out to someone in person with big enough shoulders and not loaded with their own problems. Or a professional counsellor - one of the other things you don’t always hear about is how cancer may affect your emotional life. It’s very normal when most of your givens have been turned upside down. I found a short spell with a smart counsellor immensely helpful about sorting out my priorities, the right way for me. And you’re right - putting stuff on paper, or a computer page, privately, can help too! 

    Most of all, be kind to yourself. Let your actions and thoughts be about making your world a little better, not exhausting all your energy. Best wishes.