Feeling alone & overwhelmed

My 64yr old husband was diagnosed after incidental find in March with multifocal HCC & main tumour of 8cm.  Other than a nagging pain & full feeling he was fit & well. We were told surgery not an option but TACE maybe. TACE then ruled out. Chemo & immunotherapy was next option & he was referred to oncology. Waited 5 weeks to be seen & another 3 weeks for 1st cycle. Oncologist told us he would no longer be seen by liver specialist & from here on only oncology. Told with treatment, if successful, prognosis could be 12 to 18mths up to 5yrs ! 2nd cycle was delayed due to raised LFTs (never told which), but levels settled & 2nd cycle given. A scan before 2nd one to get up to date picture showed tumours had all doubled in size ! Up until then, apart from weight loss & poor appetite my husband has been fit & well, still working & living normally. He takes regular exercise, i s supplementing meals & increased protein intake to between 120&150g a day. Last week (before 3rd cycle) in appt at oncology we  were told "picture on outside does not match picture on inside"; because husband is otherwise fit deterioration will be sudden & quick & if there was anything we wanted/needed to do to do it now ! Chemo would continue for now as it was felt it still had value. We came away devastated. As I suspected (ex nurse) ascites in belly are now present & we were told they'd be drained beginning of this week which would make him more comfortable & able to eat better but because of this his cycle next day would be without immunotherapy due to infection risk. At chemo next day, someone hadn't noted this (we've experienced so many 'cock ups) so sadly immunotherapy was run through for 15mins before my husband realised & it was stopped. This has meant delay until end of the week for fluid drainage & now he can't be 'fitted in' to have fluid drained for another week! We still have no clinical nurse specialist- our hospital doesn't use Macmillan nurses, despite repeated requests, phonecalls & messages & the only support/contact we have with anyone is a 3 weekly appt with oncologists trainee assistant clinical nurse. We do have phone number for ward for if feeling ill or new symptoms. In the last week my husband has become more fatigued & lost more weight visually but he's still working & trying to live normally. Trying do anything we needed/wanted to is proving difficult due to appts, chemo & now the delay with fluid drainage. I'm worried this is all suddenly moving fast & it's very scary. We thought, from what we were told, we still had time. We feel so alone with all of this. Where is all the support you read about & see in the media ? We've certainly received none whatsoever, just 20 minute appts once a month.it feels like we're just on a production line, being moved through an inadequate system until an inevitable end. Nobody seems to care & you're just sent off to somehow blunder your way through to the end. Like many others, our life is totally devastated. Sorry for the long diatribe but at 4am full of fear your mind just spirals.