"Choose and Book" - OK?

As many of you will know, after my anniversary visit to drop a card off for my local Oncology Team who had told me I would die 3-4 months from May 2007, I received a letter suggesting it would be "appropriate" for me to have another scan. Some people here urged me to do this. Others, including the interim Cancer MacMillan nurse, suggested I leave well alone. However I have been quietly doing my homework. Since I got my computer three months ago, I have used What Now as my oncological base. However a week or so ago I defected and had a trawl round. On other sites I found cases similar to mine. I also heard last week that my friend-of-a-friend who had finally been cured by my oncologist WASN'T: she referred herself somewhere else, but negelected to mention this until the other week. As many of you also know, I was invited to talk on camera for BBC2 Newsnight about the appalling series of cock-ups: misdiagnoses, mis-treatments, rudeness, etc I have suffered from my local team. I declined this opportunity, but initiated a forum topic, which was answered inter alia by MaryB. She wrote exactly what I had heard on other websites: it's all different at The Marsden. Today I spoke to my own GP. He usually smiles, but smiled a lot less when I announced that I wanted to be referred to The Royal Marsden. I said that I am not expecting miracles, but I have had enough of being treated like **** in Nottingham. I am sick of being misdiagnosed, of not receiving apologies for same, of being wrongly-advised about possible treatments. I am sick of being given statistics, then other statistics, completely at variance. I am sick of being told that I have 3-4 months left to live, then still being around, but jobless and with no money and no chance of being employable 13 months later. I am sick of having them ruin our sex life (as I stopped using the plastic dilators when told I would be dead in 12-16 weeks - and by now I should think the scarring from the internal radiotherapy will make any physical exam impossible without excruciating pain). I am sick of the same oncologist who laughed at my "not knowing" that my cancer was in my Supra Clavicular Fossa now telling me that, well, about that 3-4 months.... I am sick of being treated like a second class citizen. I know ****ing well that if I had still been with my ex- who is a lawyer, everything would have been different. My GP, having hummed and mmmmed about it - not usual - could refer to Leciester as within area - well, hmm, yes, in theory I could be referred to the Marsden. He could do me Manchester? Oh, er well, let's have a go, shall we? Immediately he discovered that the chap in charge taught him at Barts: this cheers him up a bit. He tinkers with his keyboard some more, but eventually I just get a print out, and I myself have to ring when I get home as it is refusing to accept any appointments. He thinks this may be because GPs are primary care, and referrals are supposed to come from secondary sources (ie my oncologist). I have explained that I realise he has to know, but I am very worried about that, as I suspect the only way they can conceal their ****-ups is by losing my file; either that or the new ones will just close ranks with the old ones, and I am marked Pariah as far as entire English system concerned. After that, as I shall have to return to them at some stage, they are going to be deliberately rude and unhelpful(and I've already seen what their coicidental blunders are like). I went home. First time, I get a mechanical voice suggesting I try the website. I hang on. Get through to this Wood between the Worlds, only to be told that "X is on your casebook" so that she cannot get through. I ring my GP and discover X = clerical assistant having go on my behalf, possibly enjoying the novelty of variance from her normal routine. Assure her I can do it myself, and ring yet again. More holding, more music, more expense. Real voice from Wood Between the Worlds: I give my number, name, pass words, D.o.B, etc all over again. This time she can get into my casebook, but her computer is having a Go Slow. In fact, as the minutes tick away (not going to be much left of this weeks' benefit), she realises that it is the Marsden's computer that has jammed. I can try again "in 48 hours". Meantime, if anyone wants a Gynaecological Surgical Appointment with The Royal Marsden, get yourself down there, because there's appointment going on Thursday - mine.... More round and round and round, to follow.... xxx Penny