Kidney Cancer Q & A

I've just come off the phone to the hospital as my 3 year 'cancerversary' approaches and I want to check the date of my forthcoming scan. With my daughter's wedding on the horizon I want to be sure it doesn't clash with dates around that time but also, they forgot to book me in last year. Thankfully my GP picked this up when I visited with ongoing back pain issues so my 2 year scan was 3 months late.
Surprise surprise, the administrator I spoke to has absolutely no record of any forthcoming appointments for me. I shouldn't actually be surprised as this is the hospital that signed me off at only 11 months - 7cm grade 2 kidney tumors obviously not ranking highly enough to warrant the supposed 5 year specialist cancer care.
I recently had to visit the doctors due to increased pain in my back and what I suspected was a nasty UTI which I have also suffered with. The new GP I had to see asked if I may have drunk more coffee than usual or possibly eaten a lot of citrus fruit???? Seriously, not a word about the fact I have one kidney owing to the other one having been fished out with a big tumor inside. I was palmed off with a 'see how you go' attitude - and I am still going, frequently to the loo.
The way my cancer presented itself was at the time, quite dramatic and the subsequent care I received so poor I had to change hospital trust. I really can't face the thought of having to change again, it's ridiculous but I'm completely at a loss as to why being treated at all is so very difficult.
My own GP has been extremely supportive but it's the lack of specialist kidney cancer care that has me totally bewildered and not knowing where to turn.
I have spoken to a Macmillan Nurse recently who was extremely helpful and very kind - I did get a little tearful on the call. She was shocked that I'd not had a specialist cancer nurse at any time during my care but more so that I have no consultant. The nurse took time to research a little and was puzzled as she said ALL cancer patients should have this care for at least 5 years. This had been my understanding but it doesn't make sense as mine ended before 12 months.
Right now I feel I have 101 unanswered questions but no one to direct them to.
Are all cancer patients supposed to get 5 year specialist care?
Does kidney cancer differ significantly from other cancer treatments?
Should/can children of kidney cancer patients be tested?
Does kidney cancer care differ between hospital trusts?
Do other kidney cancer patients suffer with ongoing backpain?
What caused the large hemorrhage in my kidney/tumor?
I could go on...but I don't know where to find the answers I need and if I can't find them is this the same for others going through similar?
I have left the large folder containing my medical notes shoved at the back of my wardrobe as I want to celebrate my daughters wedding before opening that particular can of worms. But, when I do I will be asking these and many more questions. The fact I can't find the answers means there's a lot more work to be done to help highlight the seriousness of kidney cancer and the devastating affect it has on your life.
Day to day I'm not a worrier, I eat clean, keep fit and maintain as healthy a lifestyle that I can. I run, practice yoga and I like my life to be orderly. The latter comes from having had such a sudden and startling presentation of kidney cancer, I still keep an overnight bag packed for emergencies! This is why I wanted to know appointment dates, I like to be in control of my life and not leave anything to chance. Without any specialist care though I feel I'm playing a game of chance like it or not.