I am nearly three years in to a diagnosis of incurable and inoperable metastatic myxoid sarcoma in the lymph nodes on my groin. This isn't currently responding to the latest round of chemotherapy that is being tried. The tumours are growing, As time goes on I am getting more and more scared that I am getting to the end of the road. I feel I should be getting more help and support than I am but I don't know what this is or what it should be. When I look at the Macmillan website I see reference to clinical nurse specialists (CNS) and 'Key Workers', the impression is given that there are lots of people there to support you. The reality is, yes, there are specialist NHS nurses in the hospital who will be in the (very) short meetings I have with the consultant, and I can email them with questions. Is this it? or is there some other support from Macmillan nurses who are something different and separate? Is that what there is? I need to have someone I can really trust in respect of my treatment. I am told that the MDT want to take me off my current drug (Trabectadin) but why do they want to do this? Is it based on cost? Is my treatment deemed to be too expensive? I am terrified of being told that I have got to the end of the line with drug treatments and that there are no more options. Over a year ago a nurse told me to 'put my affairs in order' but they won't give me a prognosis with a definite timeline. Maybe that's for the best? Feeling very anxious and confused. Any ideas or suggestions welcome.
