I have been living with stage 4 incurable and inoperable cancer for three years. It's metastatic myxoid sarcoma. I'm on palliative care, chemotherapy and pain killers among other things. I have had various spells of radiotherapy and chemotherapy, nothing has really worked. I have been on Trabectadin since last summer and have had eleven (actually 10 and a half because the hospital made a mess of one) infusions. This has probably worked a bit, up to a point. I have had to persuade the oncology team to stick with it, they were wanting to change or drop it but I read that it can take 8 or 10 infusions to have any effect. Well, we are on infusion eleven, and while trabectadin has probably, probably kept a lid on things for a while, now the tumours are growing again (you can see them in my groin) the pain is increasing. I ham having to take more zomorph and more oramorph. The consultant who has been looking after me since the beginning is not going to be my consultant any more, I believe she is retiring. I am devastated as I trust her and have faith in her. I'm going to be allocated to some other consultant who I don't know. I feel that I am going to have to fight a battle to keep on some kind of treatment. Oh, I forgot to say, I had been told that Trabectadin was the last line of treatment that is available. There is nothing else. So what happens now? Is it just a case of, as a nurse once said to me: "Go home and put your affairs in order?" Just go home and die? Is that it? All my life I have had a vision of what is possible, but now I don't know what to do. That's it really. Oh yes and one other thing, a community nurse really frightened me when she told me that tumours like mine can break through the skin, this apparently is called a 'fungating tumour' and is accompanied by a strong smell. Thanks for that I really needed to know that. Feeling a bit hopeless at the moment, don't know what to do.
