carcinoid syndrome

i have got carcinoid syndrome,i am 54 years old,it is all over my abdome,in my eyes,in my liver,and i am awaiting results of a ct scan to see if it has spread to my lungs,kidneys and pancreas-the consultant who was to take my ovarian cysts out discovered it but could not take the right ovary out as it was covered in trabecular banding and then that was covered again and around my bowel so it would have been an immediate colostomy,he thinks it may have started when i had my appendix out in 1980,i was in hdu for 5 days and also had hypo globulin i put on 10kg in 5 days! my gp thought i already had an oncologist but i hadn't he is referring me to my local hospital to the 'oldest' chemo oncologist but not necessarily the best,i was told i may have to go to manchester,england,birmingham england or london england or further afield.i have had to tell him what medication i require via his secretary and organise my own blood tests.the referral can take 14 days which is up on wed but i have heard nothing.i am not keen on going to my local hospital as i have been in and out for the last 4 years with no proper diagnosis it doesn't give one any confidence.can i get referred to say christies,can i refer myself,what is the prognosis for this rare form of cancer the incidence is 120 people in 61 and three quarter million! it is neuro endocrine carcinoma ,hormone related which my gynae consultant at the hospital i had the operation said was grade i but as i could not have any further surgery i need chemo,will this treatment be funded by my primary care trust or notdo you know of any oncologists in this field with expertise or how do i find one.i do not want to be in a research as i may end up getting a placebo what can i do there is so little information on carcinoid syndrome i am already losing my hait(for the past 3 months) plus lumps on my head,rare eye disease with horizontal double vision and pain behind my left eye being the worst with my eye bulging i have been tested for r.a and thyroid both negative.are there any charities who would fund treatment we are on a very limited income disability living allowance,invalidity previusly incapacity as iam already registered disabled with failed back syndrome.asthma,i have a very small occ.pension of 7.10 per week,my husband gave up work 4 years ago when i was diagnosed with spondylolisthesis he took his occ.pension at 54 he only gets 371,30 nett per calendar month,he alsoo claims carers allowance of 48.65 per week.we had to sell our bungalow as we could not then afford to pay the mortgage we sold that and paid the mortgage off and bought another bungalow and refurbished it but now we have no savings left,i have no social worker,district nurse,oncologist or even a good g.p and my local hospital have treated me appallingly even when i was ready to have an operation for an acute obstruction of the bowel when it just went away after medication still no one questioned why!i have been passed from pillar to post.would any one buy my story or could we get any grants from anywhere as we have got so much extra expense at the moment have you got any suggestions.p.s.i will probabally have to inform dvla when my eye consultant confirms that it is carcinoid syndrome it is only a macmillan nurse over the phone who told me also my g.p. when i came out of hospital that it was probablly the same,i go to my eye consultant shortly.help help help where do i go from here short of suing my hospital for negligence but it could be years alsoo what reception would one get if you had to go to that hospital i am in a quandry and have had no advice from anybody.and i need some cash now i have had to buy 3 sizes bigger clothes to wear