Thursday, 11 March 2010

Bloody Guidelines...

On monday morning I had my last session of Radiotherapy.

After it I had a long talk with my consultant about all the things that have been going through my head, like:
How much was Prof. Thomas' decision not to operate influenced by NHS policies? why he won't operate when it's a Melanoma, when it would have been appropriate to go ahead on a Sarcoma ( the original diagnosis)? what's the chance of me getting on a trial of one of the new wonder-cures for cancer being run at the Marsden?
Those and lots of other things that I think about in the middle of the night when I can't get back to sleep and the nasty little thoughts are flying around, just below the ceiling above my bed. (gotta love that Morphine)

Sarah (my consultant) told me she's written a letter referring me to the Chemotherapy Consultant at the Royal Marsden (another question.. why hasn't she sent it yet?) and he'll talk to me about the treatment that he's considering for me.

I don't hold much hope for that, apparently Melanomas don't respond to Chemotherapy well.

She also told me that there is a trial of a new treatment, that has a requirement of a certain marker in the biopsy and that this marker is present in the biopsy taken from me back in January at the Marsden (hope building here) but that the Marsden had had a problem with a previous patient who had the same marker when tested by them, but that when a test was carried out by the American Drug Company on the same biopsy (according to the guidelines of that company) they found no trace of the marker and so the patient was not admitted to the trial.... hope dashed, broken on the rocks and washed away by the breaking surf.

Seems I'm not in control here, NHS timetables (which make tectonic plate movement seem fast) and the fact that Clive is so unusual mean that noone has any idea how long I have to go.

Anyway back to how I feel, I was warned of all sorts of side-effects from Radiotherapy, the only one I really have is a lot of tiredness and a feeling that Clive has grown (apparently down to normal swelling)

So now all I have to do is wait...

Wait for the swelling to go down.
Wait for an appointment at the Marsden.
Wait for any increase in pain which will trigger another scan (or a wait for one)

Apparently if I had Breast or Lung Cancer there'd be no wait. NHS guidelines again.

1 comment:

  1. What a NIGHTMARE. To say it must be SO frustrating for you would be an understatement. Just TRY to remain postitive...Lots of love, Sal x