Hi folks, I'm a 40 years old lady living in central London.
I've recently been diagnosed with a very rare cancer, low grade endometrial stromal sarcoma, stage 4b with several metastasis. Incurable. It seems I 'm not going to do any chemo or radiotherapy for the time being.
Last September I had total hysterectomy (my ovaries were removed), so on top of incurable cancer I've got menopause as well on my plate.
My sarcoma specialist said I have "many more" years to live but so far I haven't been brave enough to ask him how many years roughly I've got left. Anyway "many more years ahead" sounds hardly reassuring given the super scary diagnosis. He said my cancer can and has already shrunk since I got the ovaries removed (it feeds on oestrogens produced by the ovaries) but will never disappear completely, I'll have to live with it.
Needless to say at the moment I'm very nervous, worried and scared. I'm not working at the moment and I don't know what to do with my life, I'm unable to make any plans.
Also I'm in pain, I'm taking several painkillers, I've got "warm chills" through my back, pain in my middle back and sacrum and the back of my head feels like it's in a vise grip. Fortunately I've been already referred to a holistic medical care team (massage, diet, aromatherapy etc) and to an enhanced supportive care team who should be able to see me soon and help me manage these symptoms.
If you're going/went through something similar please get in touch!
