Tamoxifen side effects hell

I have been on tamoxifen 3 months, but this week I stopped it as the side effects were finally unbearable. The side effects began about two weeks after I began treatment and progressively worse, until a few days ago when I found I couldn’t wear my glasses as my face was too swollen and painful. But, that is not all; (I also have fibromyalgia, chronic fatigue syndrome, asthma and a ?stroke), anxiety, depression), increased joint, bone and muscle pain, fluid retention causing swelling throughout my body, including my face, extreme pain and heaviness in my reconstructed breast (diep flap) fatigue, no sleep, nausea, no appetite, no sense of smell or taste, weight gain, vaginal thrush, sore mouth, hair thining, depression, panic attacks and suicidal thoughts, can’t take anti depressants as they make me psychotic), huge bruises everywhere, itchy skin, changes to present moles, small painful spots, tinnitus and there’s probably more. 


One or two of these i could have managed, but all - no way. I also had an informed refusal of chemo, based on  many things and after experiencing all the above, I’m glad I did. It just occurred to me that they gave a woman who had a stroke, a drug that causes blood clots. A Macmillan nurse once said, she didn’t give out information until it is asked for - how do you know what to ask?


Not sure  what’s next, but the world as gone mad or is that just me? I do meditate and tai chi but I am on my own with it all.

Hi Bevanne,
Goodness, so sorry to hear how your feeling at the moment & what a rough time you’ve had.
Does your team know how you’re feeling & is there any counselling support available, or can your GP help?
The bcc helpline here can also help if you want to talk things through.
Sending hugs
ann x