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Saturday, 23 June 2012

Annoyed, frustrated and fed up

I had hoped to be able to go up to London today to meet a friend who is in the UK briefly but it is not to be.  I am starting to get annoyed, frustrated and fed up with the lack of a diagnosis of just what the hell is going on with the problem with my left ureter.

This problem has been showing up on CT scans for four years or so, and until my scan on 28 March 2012 it had remained the same.  The report of that scan showed that it could be 'disease', or as it would be known to others, a progression of my cancer.  When I was in hospital in March it was vital on the Friday that I stayed in to have further investigations, but by Saturday morning it was deemed not to be that much of a problem and I could go home.  No real explanation as to why they had changed their minds so abruptly.  This is annoying on several levels, not least of which is the fact that when I filled in one of the forms when I was admitted I put that YES I did want to know what was going on.  It is now nearly three months later when I see, hopefully, the oncologist on Tuesday morning; though that will depend on how completely over booked his clinic is.  Last month they had basically double booked him and I eventually got to see a nurse practitioner and hour and a half after my appointment time.  She then had to consult him and I was told I would have another scan before my next appointment.

That scan appointment only come through because my sister-in-law was nipping at their heels, otherwise I would probably still be waiting.  All in all I just have always had the impression that they are just going to let things progress, and they will just deal with the symptoms with palliative care.  So how much does this make me feel that they want me to go into a corner and curl up and die?  TOTALLY.  This was the impression that I got from my first oncologist, and I have never really felt that Southampton General Hospital has any intention of doing anything but the bare minimum while I die as they don't want to waste money on me.

This was why I felt I needed to go out and find some way of helping myself.  I lost a friend to stomach cancer 8 years ago and I stayed with her during the final part of her illness.  It was through friends of hers that I first heard of some of the alternative and complimentary ways of dealing with cancer.  Therefore I already knew about B17, and the Bristol Cancer Care approach, now Penny Brohn Cancer Care.  Even then I have found difficulties.  I twice arranged to go on residential courses at Penny Brohn, only to be told very close to the date that they were running them for people who hadn't attended the centre before (I did a one day Introduction and another day course) so it wouldn't really be worth my attending!  Yeh, you guessed it I lost it, especially as the second time I booked I was assured that the retreat I had booked for was not for beginners.  Rejected yet again.

When I went to the Breast Cancer Haven in Hereford and plucked up the courage to go in for a class they were advertised I was treated like some pervert who had comed to look at breast cancer patients, and was also informed that I had to book.  No such information was on their website, or on the board outside the front door.  I had actually travelled 150 miles and booked into a hotel for a few nights to be able to attend this class.  Rejected yet again.

Too many things about cancer, and breast cancer in particular, seem to be so cliquey, and so 'ladies who lunch' who have time to give to the right sorts of charities.  For instance I would like to help out in one of the shops that supports my local Hospice, but the people in the shop are so superior that I don't think I would fit in at all.  I have never donated anything to the shop as I don't think I have anything which is 'good' enough to be accepted.  It all seems to be posh labels, not supermarket brands and Evans which is the type of clothes that I would have to donate.  It is one of the reasons why the town I live in made the national papers because of the snobby attitudes of some of the residents who didn't want an Argos shop in the town as it would lower the tone.  These people forget that now everyone who lives here has a yacht, a second home and a big income.  These are not ladies who have to work for a living as some of us do.

I may have commented on this before, but breast cancer is all about the 'fluffy pink survivors' to whom we are a bit of an embarrassment who is spoiling their statistics.  I once asked Cancer Research UK how much of their research budget they spent on research into secondary cancer of any sort - turns to be about 1%.  It is all about catching cancer early so it can be treated.  Well folks, what about those of us who have been ignored by doctors, despite scientific evidence of having cancer, for years until it is a case of 'sorry, too late to do anything other than making your death easier'.  Thanks for NOTHING and SORRY for spoiling the stats, and the profits of Big Pharma.  After all they don't want to help us either as we would make their creative statistics, and therefore their profits look bad.

Right.  I think that is enough bile for now.  The sun is out and I need to get some bone strengthening exercise by walking into town...

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